Frida Writes

About Pain Meds and MJ

2010-08-11T11:17:00.000-07:00

After my mother gave birth to my sister and me (or, removing grammatical convention, me and my sister--I was born 10 minutes before she was), she went into cardiovascular collapse after the administration of percocet, a combination of acetaminophen and oxycodone. My mother has long contended that she has a dangerous allergy to this medicine; she experienced the classic near-death experience, and her heart had to be restarted with paddles. A brand new nurse broke down in tears. The truth is that my mother probably is not allergic. Instead, she was a very tiny woman and was not narcotic-tolerant: oxycodone should never be administered to a non-opiate tolerant patient (60 mg. of hydrocodone daily, for example), nor should it be used for short-term pain. Doing so creates the risk of breathing problems and cardiovascular collapse such as my mother's; it also carries a strong risk for addiction. I should say that my own dose of pain medicine comes nowhere near close to qualifying me for using oxycodone, and I would be more than hesitant to use it because of the risks, whatever the benefits. I can attest to the risks of another drug with similar effects; I had fentanyl post-surgically, and while it ameliorated temporarily agonizing pain (gas pressure on an already badly painful spine), it depressed my breathing greatly despite my regular low-dose use of narcotics.

Given such considerations, I was highly surprised when an ER doctor gave a relative a small prescription of oxycodone for an acute injury, especially since three ibuprofen (600 mg., standard for an injury) take her pain away and a much milder pain medicine should work if higher doses of ibuprofen need to be avoided. Frankly, I am worried and concerned from this single incident that ER doctors are giving pain medicines like this routinely. Are we to believe that the recommendations of pharmacists and reference books are just fluff, or are we to look to individual cases like my mother's and see that the dangers are real? I have warned my sister, but I believe that to her the prescription legitimizes her pain, as I think often happens with other patients post-injury or post-surgically. Do most people really need hydrocodone or percocet after wisdom tooth removal? I don't think so. I threw ours out!

Why do physicians often overtreat acute pain and undertreat chronic pain? Do people believe that acute pain is a given, that chronic pain is imagined? I feel fortunate to receive the pain medicine that I do and feel that I do receive it from my self-advocacy. While my pain is at times undertreated, most of the time I can manage with it, the wheelchair, and a combination of activity and rest that takes into account pain flares and related individual capability.

Physically, I wonder if I would be better off trying medical marijuana, at least at night to control breakthrough pain, and I have considered moving states if I am able to in order to acquire it. While some might laugh about my over-prudence in this regard, I have children and not only would potential arrest have an impact on them, but I believe that I could easily be denied access to my regular medications, as has happened to other patients who have used marijuana illegally in a state where doing so is not legal. After the death this week of an employee at a California dispensary, I think that perhaps general legalization is the only way. Otherwise both providers and patients are at risk for violence and break-ins. The history of marijuana prohibition parallels and coincides with alcohol prohibition, except that marijuana prohibition was rooted in racism and classism. Thus when alcohol prohibition was repealed, anti-marijuana laws never were. I don't know that I could or would want to use it regularly--as with any medicine, I'd have to see how my body responded.

Cannabinoids work even where opiod receptors have been destroyed by nerve damage. While the synthetic drug Marinol is available and legal, it is as expensive as ultra-sleek disesase modifying drugs (up to $15,000 a year), and patients report it is not as effective and produces more rather than less psychologic side effects. Certainly it is cost-prohibitive for many.

It is odd to me that a drug that is so dangerous and addictive as oxycodone can be legally prescribed and yet a much milder one (cannabis) cannot be in most states. And the form that is legal creates more psychologic side effects that people worry about than the illegal one. How much sense does that make?

Though I have long believed marijuana should be legal for cancer, glaucoma, arthritis, and other chronic pain patients, I have shied away from the topic, even though others have recommended that I move to another state or try it illegally. Severe bouts of lichen plano planarius (I can barely disguise a hand-sized bald spot), an unusually extreme bout of shoulder/cervical pain, migraines from both of these, and these in conjunction with the usual arthritis rendered my pain medicine inadequate for several weeks, especially overnight. This has convinced me I need to speak up more, and not just for myself, that I've been selfish not to do so. I am lucky that with more continuous pain I could move in with family or friends in one of a few states where medical marijuana is legal, though that would disrupt my household. Would I have shied away if I lived in another state or country? Probably not. But when people have been rounded up--even recently in Canada--then I have to speak up. Even where it is legal, local municipalities often put in place such strict regulations as to limit patient access.

To me, the same legal defense used for Roe v. Wade should apply to medical marijuana (the Ninth Amendment), but this defense has thus far failed.

ADA: Coffee by Internet

2010-07-26T06:09:00.000-07:00

Happy ADA 20th Anniversary!

Reminder: At 9:30 p.m. EST, or as close to it as you can, let's all have a coffee by internet (a special coffee or tea, wine, or raspberry lemonade, whatever your favorite drink)--in honor of the ADA and of those who fought for it, and in honor of ourselves in the struggle we face daily against attitudinal and physical barriers.

Hoping to catch up with my blogging soon!

In Celebration of the ADA: July 26 Coffee by Internet and Accessibility Photographs

2010-07-08T21:07:00.000-07:00

Two weekends ago, we ate out for the first time in a year and a half. We ate at an old favorite restaurant that was engaged in a recent class action suit brought by wheelchair users. Ramps and an accessible table should have been added when extensive renovations were done years back. So I celebrated my freedom there, mindful of what others had sacrificed so individuals and families like ours could eat there again. I did feel welcome there. I wondered if I would.

Much has been accomplished by the ADA, but nondisabled people often don't recognize how much is still inaccessible to us. By my estimate, as I've written before, I can't visit 50% of the businesses/facilities that I would like to visit, but most of the needed changes are very easy to make and inexpensive--a single ramp, a curb cut, a door hung the right way on its hinges.

Part of me asks, "Must I wait another twenty years?"

For people who would like to participate in raising accessibility awareness, please take two photographs sometime in the next two weeks:
1. One photograph of a place that would have been inaccessible 20 years ago but is accessible now because of new building standards, a lawsuit, or voluntary compliance with the ADA; and
2. One photograph of a place that is still inaccessible to you but should be by law.
Alternatively, since not all of us can get out regularly or cannot photograph, write a short description of two places/situations in terms of access issues.

You can name the places of business or you can make your photographs more generic/anonymous. Please feel free to include yourself and/or significant others in your photo. Please send me a link to your photos, either in the comments of this post or to fridawrites, gmail. I will post a link to them on my blog on July 26, the 20th anniversary of the Americans with Disabilities Act. I will publish them more directly if I can, but I don't know how my blog will handle a high volume of photos. You do not have to live in the U.S. to participate--I'd love to see photos of accessibility/inaccessibility in other countries.

And--
Thanks to Wheelchair Dancer for this idea:
Let's all celebrate together. At 9:30 p.m. EST on July 26, or as close to it as you can, let's all have a coffee by internet (a special coffee or tea, wine, or raspberry lemonade, whatever your favorite drink)--in honor of the ADA and of those who fought for it, and in honor of ourselves in the struggle we face daily against attitudinal and physical barriers.

Spread the word--if you like (I know physical limitations!). This can be as micro- or macro- as participants like.

Also, I have joined the Dark Side recently--or rather, Twitter, and I am twitterpated. It's like blogging in miniature, perfect for my shoulder issues lately. My id there is also fridawrites.

Frida Kahlo's Birthday

2010-07-06T14:47:00.001-07:00

Today is Frida Kahlo's birthday. See Google for lots of Kahlo webpages:
Frida Google link

Busy Weeks

2010-06-23T09:36:00.000-07:00

I am always a bit mystified that I always think summer will be less busy for us--while it's true that the kids are not in school, they have just as many activities and invitations, only different. Between violin camp, Cub Scout camp, Girl Scout camp, birthdays, Father's Day, various appointments, having friends over, swimming, whew! Our lives are getting back in order after unemployment; the process has been stressful but it's a relief to have a home and put this really difficult year behind us. It's good to be outside and enjoy seeing others and have more time with the kids, but more tiring than I would have expected looking toward it from May. So today I woke up with a stomach bug, I think from stress and getting my immune system down. Oops. Time to rest a little more. It's not just about the joints and spine pain.

So what do you do to relieve stress? Personally, I have found that taking some time to do small repetitive tasks can help--like knitting or playing a small video game on the ipod (think scramble or the whirly bugs game). I guess it's kind of meditative. When I am physically able to more, cleaning up, straightening my environment clears my head. I often can't get the same endorphin/stress relief benefits I could from exercise several years ago, but whatever I can physically do helps. Does your stress increase when you are less mobile? What helps?

Medicine's Dark Secret

2010-06-01T12:52:00.001-07:00

***WARNING:*** THIS POST MAY BE *HIGHLY* TRIGGERING FOR PEOPLE WHO HAVE EXPERIENCED SEXUAL ASSAULT. This post discusses sexual assault in medical settings and goes on to explain anesthesia fetishes.

I write this post to educate about an issue, in hopes that it can stop even some of the abuse by criminals in the medical profession and hope dearly that I don’t hurt anyone by bringing back bad memories. If you or a loved one have experienced sexual abuse and want to talk to someone, you can contact RAINN at rainn.org to speak with a counselor online or on the phone.

Long ago, I was treated at a university health clinic by a pedophile already convicted of obscenity with a child in another state. Fortunately for me, his predilection was for young men rather than young women, and he sedated teenagers with cocktails of chocolate syrup and a sedative before raping them. I shudder to think what might have happened to my husband or my other male friends if they had been treated by him, and I wonder how it was that his colleagues trusted this doctor, if he appeared different or if they noticed some oddities in behavior that didn’t seem right. More than that, I wondered how he was allowed to practice in our state after being banned from practicing in his own.

While we have all heard of teachers, clergy, neighbors, and scouting officials who have abused children, the medical profession is certainly not immune to abuse. In fact, if you were an abuser, where best to get access to women or children at their most vulnerable, alone, sometimes overnight, and not completely dressed? And not just women and children—elderly patients are often raped in nursing homes; according to the Chicago Tribune, there were 86 such reported cases in Chicago from 2007 on. It's not just doctors and nurses; training programs for surgical techs, CNAs, and other allied positions are pretty readily accessible, short, and affordable.

You may believe that such cases are extremely rare, that they wouldn’t happen where you work, that none of your co-workers are “like that.” I am certain that every single non-abusing medical professional has thought this. But what rate of sexual abuse are you okay with? Believing that it couldn’t happen “here” is denial and allows criminals to continue doing what they’re doing, often to patient after patient--often hundreds of them--until one person has enough proof to come forward. While certainly no one needs to be making false accusations, every medical professional—and parent or loved one--needs to be appropriately wary, watchful, and protective.

One of the times that patients are most vulnerable is while they are under anesthesia, not just general, but conscious sedation as well. Not only are patients unlikely to remember, remember completely, or be able to be fight back if assaulted, but those who are normally difficult to sedate and have memories will be questioned and disbelieved since anesthetics can produce sexual hallucinations. The use of these drugs may actually make abusers feel safe and secure—they can always blame the anesthetic, and patients are likely to have pain and other difficulties in the recovery process that prevent reporting. Not all hospitals perform the kit exams, thus requiring transfer at a medically vulnerable time. While most professionals are not abusers and there generally are protocols to keep patients safe, abusers know how to break those protocols. That’s exactly what’s happened in the cases where there have been convictions.

I was unaware until recently of anesthesia fetishes; I will not provide youtube links but will say that your individual horror movie--or at least my individual horror movie--(being intubated, barfing into a too-small basin, peeing yourself, anesthesia headache, screaming in pain not adequately relieved by fentanyl or morphine, not being able to reposition yourself, ongoing short-term memory loss) is someone else’s fantasy. These perverts share a lot of commonalities with wheelchair and amputee “devotees”—unable to imagine themselves in a real, equal relationship with a woman, they sexually fantasize about people who are disabled, impaired, or cannot give consent. Some of them have posted videos from ORs or dental practice rooms with their cell phones. Erotica or pornography with consenting adults apparently does not hold a candle in their minds to women laid bare on an operating table, unable to move, naked, or more provocatively, under Ioban drapes or being scrubbed with betadine. And intubation to them is the ultimate blow job. Perhaps there are many more people with this perversion if you include those willing to date rape someone after drugging them or medical professionals who carry out their medicines, like the university doctor with his chocolate cocktails. (But who the f* could be attracted to someone while they're in an unconscious state?)

I believe that most medical professionals would not harm others in this way and would go to lengths to protect their patients. However, sexual abusers are sneaky and not forthright—they can also be risk takers. They know when others aren’t looking, and the security guards who work at night to keep hospital hallways safe may not realize that they are locking predators in as much as they are keeping predators out.

Patients who have been assaulted may contract sexually transmitted diseases—hepatitis and AIDS among others. They may become pregnant or awaken with pains they don’t understand. Those who recognize what happened may not come forward because of shock, fear of disbelief, lack of proof, or if there’s been sedation, difficulty with anesthesia or surgery recovery. If there are no witnesses, as when a radiology tech gropes, it may be particularly difficult to come forward.

Security cameras do no good when people assume that they will not see anything out of the ordinary on them or when they are not reviewed. Safety protocols are meaningless when someone breaks protocol because of a delay or missing supplies or equipment, leaving patients alone with an abuser who is well aware of where the safety system fails. Background checks only mean that someone hasn’t been charged or convicted, not that they haven’t or will never abuse another person. Open your eyes. Ask questions.

Remember, protocols are guidelines. People can and will break them. They know when others aren’t watching. Protocols don’t make any difference if you don’t blow the whistle when it’s called for. And it may not just be your patient. Someday it may be you. I’ve said it before—never leave your child alone with any medical professional, not even for an x-ray or bloodwork. If your child stays in the hospital overnight, you must do what you can to stay too--and throughout the day.

"Small" Blessings

2010-05-26T18:15:00.000-07:00

My uncle just got a job two years to the day after he was laid off. He's been looking for work in our city, living out of state from his very severely cognitively disabled teenager and his blind wife. Their teenage daughter is homeschooled and has been doing a lot of the caregiving, along with some college student neighbors. He will work here for a while to earn enough money to move them here.

May everything begin to turn around for many more families.

My daughter and I are watching a television episode on TLC called "Pregnant and Homeless." The mother is worried her toddler and baby will be taken away because of their poverty. The mother has lost fifteen pounds since the beginning of her pregnancy, but they are ineligible for food benefits because the husband stole a car when he was 21 (my daughter said that; later it was said it's because they were homeless). This is *reality* television. Right now, this is America for a lot of people.

Target Ad Redux

2010-05-14T06:00:00.000-07:00

Here's the Target ad for the Coleman tent I tried to post a copy of a few days ago but had to describe instead. I like it!

In addition to the manual wheelchair user going camping, she appears to have a husband and a son who's playing ball. The photo goes beyond tokenism because it gives her a context, a family, and portrays her in a nonstereotyped way. She is independent or interdependent, not dependent.

Since I can't get it posted at a better resolution, here's the tiny url; I don't know if this will work after this week--I couldn't get it to work before.
http://tinyurl.com/2d9a3bx

Honesty, Not Kindness

2010-05-13T21:21:00.000-07:00

Note: this was written about the several months when I was completely bedbound before I received the wheelchair; we asked people to visit us, but no one would. Friends of many years dropped away when the going got tough. Day after day of lying in a single spot with almost no contact with the outside world messes with your mind and well being like nothing else, similar to the disorientation people get in ICU.
----
I know much of this venting here is a repeat of other things I've said, but I just needed to bleed here. Before my son's concert tonight, someone mentioned how the Caring Committee at the school has helped all the parents with chronic illness or with other needs (one woman's husband died this year). This help is extensive and people are scheduled at specific times, all very organized. All except for, yours truly... So venting here...this is representative of many of our networks, you can apply it to our jobs, our extracurriculars, our (former) church, most family, long-time friends.

Dear Caring Committee:

I am asking for honesty, not kindness: why won't anyone help us?

Here's what went through my head since we begged for company in December and January, since some of you called me directly and asked how you could help but didn't:
People think I'm lazy. People think someone, anyone, has helped out or visited. They think I'm a hypochondriac or have Munchausen's. They don't believe that I am ill. They don't believe I am sometimes seriously ill. They think it's too awkward to talk to a wheelchair user. They are depressed by being around me. They avoid me because of gossip about me. They don't like my husband. They are still angry with me about the tasks I could not accomplish. They just think I'm a total b*. They think that I'm more physically capable than I am, that I don't have to do without meals or dehydrate myself. They don't realize sometimes we are living in squalor (well, not quite, but it is really out of hand at times). They think we have a pattern down and can handle it. They just think I'm a complainer. They think we have bad karma. They think I haven't helped out enough people. They think an ongoing illness is a deserved punishment and that I'm someone to avoid. They think I've adjusted to everything and don't need human contact.
And I continued to be bedridden then. It wasn't over. I just didn't keep asking, not after being turned down or ignored so many times.

My children have lost most of their friends (they have two each). My son hasn't received a party invitation in two and a half years and has only been invited to someone's home once. He's either a terrible kid or I'm a terrible parent, or both. People in all of our networks dropped us, not just fellow parents. Our children are having to do a quantity of tasks no child should have to do. My husband can rarely sit down except at work. My daughter looked back at me with pain in her eyes tonight when you talked about all that's been done for others, as did my husband. They're alone. It's not just me.

But I was suicidal, I wanted to die. The aloneness, the solitary confinement, was truly killing me. Where were you? We were friends. You've left me behind. I couldn't cope with the same four walls all day, every day, just me and the computer (when it was working). I begged for help, for company. You all let me know that you were going to lunch the next day. You let me know you were going shopping and to fun nights out. I didn't complain. I didn't ask for much. I didn't ask for meals or maid service or help with housework or laundry, as you've been doing for other moms. I just asked for a little company. My house is on your way to and from school, on your way to lunch.

I definitely am not asking for help from other parents now--we'll muddle through, as we have. There's got to be something sadly deficient in my character or our family for people to want to avoid us this much.

Signed,
Frida

This week someone asked me in a pointed way what I had done for Scouts this year. I said that I had been on bedrest and we need help. No answer. What I should have said is that being there at all for my son was extraordinarily difficult for me, that's all I could do, with all the strength I could muster, to attend two events before I got the wheelchair. I was dying from the pain. Others complained about the food or the way this or that was handled. I was grateful to be able to leave home for the first time in months.

One of my friends is going to help with some things when my husband has long days, one person wanted to help recently but got sick herself, my mom helps out as she can. We can get some household help for a while--but at the cost of a van. I see that slipping away.

Wheelchair User Featured in Target Ad

2010-05-12T16:01:00.000-07:00

This week I was impressed that in its ad for a camping tent, Target featured an adult wheelchair user as one of the models. She looks like an active camper. Unfortunately it's not an accessible tent, but as a manual wheelchair user, she can probably manage. Some advertisements feature children in wheelchairs in a token way, but it's rare to see an adult in a wheelchair in mainstream publications.

Coming Soon to a Theater Near You...

2010-05-10T20:02:00.000-07:00

...closed captioning and visual descriptions at the movies. Stephen at Planet of the Blind has the scoop. Personally we use closed captioning at our house a lot, and I will be as pleased as punch to take my cousin to a movie to try this out. This is a wonderful change that will allow more people to enjoy films with their friends and family.

For readers with visual impairments, I will remove the code required to make comments in a few days--though it's supposedly accessible. The amount of spam-bot generated comments I've had is untenable and I hope that a week of using the validation code might break the pattern.

Equal Opportunity Silence and Portraits in Miniature

2010-05-06T19:14:00.000-07:00

I am sadly behind on correspondence--to readers, don't worry, our friendship is fine. I've been without a computer for long spans of time the past few weeks, punctuated by long periods of browser crashing and computer crashing. One day it took me 14 hours to read one blog that I wanted to. I hardly know who to catch up with first!

The BADD entries this year are awesome but I haven't replied in comments yet to many of them at all.

I think I have to scale back to do more of what I want to--that means shorter blogs so that I blog at all, shorter emails so that I can connect with people more often as I would like. I'm having cognitive issues as well as physical ones. This idea came from me from knitting something very small and then trying to do something larger--the pattern and texture make me want to keep going, but I can't. So I'm going to try working in miniature for a while and see if I can get more done. Jane Austen did this, Emily Dickinson did this. Adrienne Rich wrote short poems because she said that's all she could hold in her head while her children were playing. Frida painted on small canvases since they were angled just over her in bed. So I'm going to try working small and simple for a bit. Join me if you like.

Blogging Against Disablism: Some Suggestions for the Medical System

2010-05-01T12:25:00.000-07:00

Until we with disabilities are treated well in the medical system, we can expect our civil rights to be limited. How can we expect others to treat us better than the medical system does? We need a true surge of support from the medical community for our personal rights as well as our civil rights; I believe that increasing respect in this environment will lead to increasing respect from others who will observe and learn from the medical community. I list a few suggestions here, which are meant to include insurance companies and assistive personnel, not just physicians. Please feel free to add your own ideas in the comments:

1. Better access to and funding of wheelchairs, with proper seating evaluations. Even those of us who have a proper wheelchair now need to look forward--insurance may not cover your next chair, and you may not be able to afford it. People need wheelchairs for access to their communities and to carry out ADLs long before they're 100% bedridden. Lack of wheelchairs can put people on disability, removing them from the workforce as they approach but are not yet completely bedridden without one. Lack of wheelchairs can lead to medical complications, make people less active, contribute to depression and lower someone's quality of life. Physicians should be better educated about the process too; it's not their fault that they don't know.

2. Acceptance of people who are in wheelchairs and the value of their lives. People adjust to using wheelchairs, so assumptions shouldn't be made about quality of life. Even for the most active person, new pursuits or different ways of achieving them can be found. Office spaces from waiting rooms to exam rooms to hold rooms for surgeries should be fully accessible (doorways too). More height-adjustable tables are needed.

3. Better protection of medical privacy. No blanket consent forms for hospital or surgery admissions that do not allow patients to "opt out" of medical photographs or videos as a condition of admission. It's unacceptable to ask questions in waiting areas or hallways, to dictate medical records in the hallway.

4. Kindness. Patients do not get sick to aggravate you. One set of nurses sent me a sweet card after surgery, while a nurse after another surgery clearly considered my husband and me to be aggravations, though I needed very little. One person at my insurer's call center always treats me with kindness, while another does not--I have to wonder if the latter woman is not unkind to people dealing with very serious prognoses.

5. An understanding that "noncompliant" patients may be noncompliant not from self-destructiveness but from severe financial difficulties, lack of transportation or help with transportation, or an unwillingness to deal with severe adverse effects that create more symptoms than they mitigate.

6. More teaching of medical narratives and medical history in medical schools and through continuing education programs. The medical system can be terribly objectifying. Just as patients may better comply if they understand the reasons for a physician's recommendation, physicians may better undertand patient perspectives if they know their reasons and stories. Many of the best and most compassionate physicians have themselves experienced illness--let's learn from one another.

7. Alternative and complementary medicine must stop treating people with disabilities as failures and regard them as normal. Humans are not machines--disability and illness are part of normal human condition. Safeguards must be put in place to stop unproven remedies and therapies that can have serious side effects; currently alternative medicine takes advantage of people's desperation. And rather than dismiss these modalities, the medical establishment can further fund research on therapies that hold promise and help integrate them into regular medical practice where they do work. Just as physicians now recommend acidophilus to help protect stomachs and cranberry tablets to acidify the urine to reduce infections, they should also incorporate other inexpensive preventatives when this is possible. While pharmaceutical company representatives do a lot of physician education about new antimicrobials, no one will come visiting to recommend acidophilus-cranberry regimens. If your patient can eat coconut macaroons to stop irritable bowel syndrome (as recommended by The People's Pharmacy), then she, her insurance, and her employer all save money and treatment with more serious side effects.

Living with a disability can be truly difficult--and often it's not the disability itself that's the problem so much as the baggage that goes with it. Stressors include dealing with insurance, trying to get adaptive equipment or appropriate transportation, managing accomodations at work or doing without a job, needing more physical or household assistance than is available, not being able to accomplish as much in the same timeframe as before, trying to manage in apartments or homes that are not fully modified, strained family relationships, judgment from others. When disability is new or when chronic illness has just reached the level of disability, it can take a while to adjust and the change can be temporarily overwhelming. Compassion and noncondescension during this process is always appreciated.

The medical system, definitely the physician office, should be emotionally safer than it often is, so that people with disabilities feel more support there and less opposition. While I feel fairly fortunate, I know that others are discredited or denigrated or left untreated for treatable conditions. This is shameful.

First Person Singular and Blogging against Disablism

2010-04-27T12:59:00.001-07:00

Note: I apologize that these words aren't as smoothed out as they should be; I keep coming back to make corrections. Pain creates cognitive difficulties for me.

To what extent are Frida Kahlo's paintings self portrait and to what extent are they a mirror? I invite others to view her work for a moment as a mirror, whether or not you are female or Mexican or disabled. Her eyes reflect yours, challenge yours. Do you typically see her as entirely separate or do you connect her with parts of yourself? A purely objective, nonmirrored standpoint positions her as Other; an entirely subjective viewpoint can either obliterate her uniqueness, her life story, or it can obliterate our own so that we do not connect with her. Ideally we balance or oscillate between the two, seeing her and ourselves both.

"God created man because He loves stories," Elie Wiesel once wrote. And for most of us, stories make us tick, connect us, move us to action, speak to our hearts, make us feel less alone or more bold. Stories change our deep-seated opinions, educate us, perhaps most importantly teach us empathy for other viewpoints or experiences we have not had. They make us better people. They humanize us. Frida's life story, for example, teaches me and makes me feel less alone.

I believe in the power of life stories, of autobiography, of poetry, and nonfiction narrative to change lives. To me, stories connect to stories connect to stories. It's why the best writers craft strongly intertextual work, integrating other stories with their own--William Shakespeare, T. S. Eliot, Virginia Woolf, William Faulkner, Toni Morrison, Lucy Brock-Broido are all masters of literary allusion. They knew (or know) their stories are strongest when they are connected with other stories. After all, "no man is an island, entire of itself; every man is a piece of the continent, a part of the main" (John Donne). (And "no woman."). Often the complaint among writing teachers is that many creative writing students don't want to be readers. They want to be poets or novelists. But they don't want to read others' stories, they don't want to understand their genre or literary history or their place among other voices that have come before them or who write contemporaneous to them. They just want to be a poet, to be famous, out of context, alone, without a sense of others. This is what's missing in some published disability narratives--a lack of connectedness to other disabled people, in its place a traditional Western American frontier sense of conquering the enemy (in this case, an illness or disability) alone and rising above it. The overcoming myth isn't unique to disability at all. It's almost a given in American literature. And historically this myth excludes voices--voices that don't overcome or can't overcome.

If we can overcome, or better, succeed with rather than in spite of a disability, we don't "rise above" by ourselves, though certainly self-motivation is an important part of reaching one's full potential. Success, where disability is concerned, hinges upon ramps and accessible buildings and laws first--all put in place by or with others, disabled or not. Just as, for others, exercising one's rights was predicated on the Voting Rights Act and Topeka v. Brown Board of Education. And, for others, the 19th Amendment, Title vii and Title ix. The Western myth of a hero overcoming hardship is a white male, heterosexual, economically privileged myth.

But what softens hardened hearts that discriminate, sways them from not seeing "the other"? Knowing others and hearing their stories, told formally or informally, whether real or constructed fictionally to represent a collective voice. History and literature and autobiography may have more influence to convince and change than political science.

And what makes the heart survive during the most difficult times of discrimination and hardship? Here, too, others' stories, told formally or informally, real or constructed fictionally. Many women wrote to Betty Friedan after she published The Feminine Mystique, letting her know that they had no idea they were not alone--and to Ladies' Home Journal for an article that I believed spurred the book.

Women, ethnic minorities, disabled people are often told to cut the "I" out, cautioned against writing autobiographically. It's a choice between career suicide and metaphysical suicide, this cutting the "I" out. Charlotte Perkins Gilman once wrote an autobiographical story about her experience with the rest cure and being forbidden to write--"The Yellow Wallpaper"--about a woman trapped in a room by her physician husband. It's a compelling story that makes one rethink mental illness (it can be caused by constraints put on one, or one can be called mentally ill for not fitting proper womanly or disabled roles). And apparently the story changed the mind of S. Weir Mitchell, the inventor of the rest cure, as well, about the appropriateness of such torment. And for those of us who sit in our yellow (yes!) room day after day, imprisoned by physical disability, we can connect with Gilman as well as blogger friends in the same situation. Reading others' writing can help us survive. Yes, survive. How should we react to those who ask us to eliminate our "I" or to communicate in superficial ways rather than discuss the gritty reality of our lives?

Certainly we should not devalue others' stories by implying that our own situation is so much worse than another's. It's not a competition. But we can (should?) share. Like Wheelie Catholic, who wrote yesterday that she must read others' blogs before writing her own, I too cannot write my own story without reading others'. Even when I don't refer to others' stories, your stories are in my head, in my heart, and underlie what I write. And not just my disabled friends'--my other friends', too. I want to know if someone else has experienced something similar when someone tells me how to "cure" myself, yells at me in public, implies that I am lesser. Let me know that I'm not alone. I believe in conversation, in friendships that aren't one way. I don't mind when Elizabeth or my friend with back pain and scoliosis share what they're going through that's similar; while there may be a difference of degrees among us, I don't want to listen to my own voice echoing into silence. There's a commonality in dealing with pain and going to doctors, in writing by ourselves for long hours alone. We're not writing first-person singular in the sense that singular means exceptional or weird; we're singular in the sense that we are individual voices coming together, meeting one another.

That's my perspective, at least. I hope that I am not writing in a vacuum, my experiences unconnected to anyone else's, but that's the danger I worry about when writing autobiographically, informally. The power of writing lies primarily in its ability to connect--again to impart empathy or to make us less alone in stories we do share--to teach and delight (Horace) or to create epiphanies (James Joyce). But each story, each voice, has to be connected to other stories.

How do we change disablism? Read. Write. Speak. Or sign. Learn stories and tell them. Teach others how to tell them. Edit them. Publish them. Retell others' stories.

The power is yours. The power is through words.

The past two years of blogging I feel most connected to others' stories on Blogging against Disablism Day--this year it will also take place on March 1 over at Diary of a Goldfish. For days I revel in the richness of so many voices describing what so many of us experience or witness in so many forms: disablism. You do not have to be disabled to post, but please spread the word--our stories and ideas also need to be heard beyond the disabled community, to mesh with other minority and mainstream writing.

Spring Has Sprung

2010-04-22T07:48:00.001-07:00

The changes in my breasts are benign--good news!

The wheelchair van--that's another story. It works, but Chrysler made 2008 and later models so that the sliding door does not open all the way--the door partially blocks the opening. That means that not only will Roll-a-Ramp not work, but not even a manual ramp will work with side doors on this van--or the Dodge minivans either. There could easily still be a 30-35 inch opening but there is not--well, there is a 35 inch opening--it's just blocked by the door that won't slide open all the way. While a hinge/special piece can be added to gain an extra inch, you can't get two inches and wiring would have to be cut into and other very significant changes would have to be made, putting you much of the way into a conversion. For no other reason than aesthetics have they done this. Spread the word--people using manual ramps may be unaware that a newer vehicle won't work for them. While you can still do a $20,000 conversion to these minivans, a simpler solution will no longer work.

There are spring-loaded manual ramps that will fit permanently in a van and require little physical effort--so my kids or relatives could help me with it. We could in that case remove the rear lift and raise the bench seat for our kids. But, again, 30-inch manual ramps won't fit in that van door, not on the newer vehicles. Maybe people with smaller manuals can use them, but my chair is 26-inches wide standard--a 26-inch ramp won't work.

This is poor design since Chrysler knows that Town and Country and the Dodge van are used for wheelchairs--they're probably the most used vehicles for power chairs, large scooters, and manual wheelchairs whose owners need a minivan.

I'm not sure to whom to complain since Chrysler (Dodge is a part of it) is in all kinds of change. I'm not sure anyone would care.

So this means I can't take the power chair out, not without my husband. I can't go on Paratransit with the kids since you can only take one person with you (and I can't get to regular transit lines without Paratransit). My husband travels, meaning I must do some errands now, and works too far away to help otherwise. We're in a bit of a bind. We'll hope the lift holds out as long as possible so I can take the scooter out some, though my time in it is pretty limited. Though we could put a manual ramp in the back, I couldn't then put the scooter in and out by myself; most people who could help me wouldn't be able to get the power chair up that big of a ramp.

We've been through worse; we'll make it through this too. It took me a year from the time I realized I needed different seating to get a wheelchair. I'm no worse off and am often better now that I can enjoy time out on weekends with the family without being in unendurable pain. I also use the wheelchair extensively at home. But a long-term solution or time out during the week may have to wait--I have my eyes and hopes on the next year ahead.

Yes, using a wheelchair, really easy...

Get Your Boobies Squished Again, Roll-a-Ramp, and Wheelchairs Are Easier?

2010-04-15T07:29:00.000-07:00

The Callback
I received a mammogram callback (or two or three--I didn't have the money up front for a follow-up) and letter and, is it horrible that my *first* thought (and second and third), was "oh, no, I can't afford this?" I have microcalcifications; when a baseline mammogram is done and these show up in some patterns, the radiologist has to make sure they're benign--lots of women have them and they're benign, like 80% of them. These are bilateral, which in my mind says more likely to be normal for me rather than cancer developing in both. So, more detailed imaging tomorrow now that we finally have the medical reimbursement account card, a biopsy if the shapes of the microcalcifications are irregular. Even if they're not normal, that's a stage zero breast cancer (ductal carcinoma in situ) and often requires only removal of the local spots. Yay, early detection. I started my career in healthcare and am worried about much more than how much a potential biopsy that would likely be normal would cost me out-of-pocket.

But umm, yeah, could I have something come back normal, ever? Seriously?

(My fear: at some point, I'm going to lose all credibility with everyone with the health issues. I haven't until now told anyone but a few people.)

Recent Wheelchair Van Issues
The wheelchair is lovely and reduces pain--I can go out for a long time on weekends and be up and around the house a lot more. It does not work well with the platform lift and exceeds the weight capacity slightly. While my husband can pull up on the lift so it's not doing so much work (he's strong), it takes an extreme and exhausting effort on my part to get the wheelchair in and this is not good for the lift. Procedures just to position it on ramp:
-open hatch with remote
-lower platform with control
-raise footrests so they don't scrape the bumpers on the lift
-take chair out of tilt and recline
-drive wheelchair onto ramp (repeatedly--the first bumper that holds it in place causes the casters to go out of alignment and often, the back casters to go off the side lip of the ramp; since this is a small space, they don't line up easily on it to go over the second bump)
-drive wheelchair far enough forward on lift so it can go in car (to exact spot)
-lower footrests and flip them up
-start reclining seat back some
-remove left armrest from holder and flip front armrest support forward so it will support the joystick against the frame
-stand up and remove headrest from wheelchair
-raise lift and wheelchair to knee high with power control
-attach webbed straps/hooks to secure wheelchair to platform (if it shifts off the platform, all 386 lbs. it actually is, holy cow!, it will shift some). (wrestle/fight, with arthritic hands, to loosen and tighten straps)
-remove attendant control from near headrest
-recline wheelchair back to exact angle to fit
-use control to guide wheelchair/lift into van until gears start grinding
-push like hell on the lift/wheelchair while using the control, pushing underneath wheelchair with shoulder, to get lift to push it into the van
-if wheelchair is placed slightly wrong on lift, start whole process over; all steps except headrest must be redone since wheelchair won't drive in extreme recline
-if third time you've tried to place wheelchair on lift, cry (cursing comes on round 2)
-nestle attendant control where it can be reached/won't get squished
-stow headrest so it's not a potential projectile
-use car remote to close van door
-scream if van door doesn't close; plus 50 points if it was just a strap sticking out

You can probably tell this isn't good for me or very possible--while I can make it through an appointment without pain (yay!), the pain from putting the wheelchair on the lift afterwards, well--it's like I ripped my right shoulder from my socket like Grendel seized by Beowulf. For now: scooter when I must do errands by myself. The wheelchair does help with ADLs and is completely worth it--this is a temporary hurdle that can be solved, even if I need extended family or friends to help with a manual ramp when I go places during the week. Now I can get out and do more--the wheelchair makes it possible for my body to cooperate. And we've had some good weekends because of it.

I'm also worried about safety while spending this much time at the back of a car, especially at the end of parking rows. It worried me on the scooter too, but this is way more extreme!

Putting the scooter on the lift goes like this:
-open back hatch with remote while zooming up on scooter
-grab platform remote and lower lift
-zoom up on lift
-raise lift, usually don't umm, bother with straps since it's not going to go anywhere (the lift arm blocks it from being thrown in an accident)
-close van door
I don't have to stand long or walk far, though getting in and out of the car several times (short errands) is very difficult because of multiple transitions/transfers.

Putting the wheelchair on the Roll-a-Ramp should go like this:
-open side door with remote
-lower ramp with button
-use attendant control to drive wheelchair up lift (and turn it?)
-use straps on wheelchair (ouch, spine--reachers/grabbers?)
-raise ramp
-close side door

Strangers do stop and ask to help and insist on helping, and I let them--this beast is enough to tackle gladiators. Even elderly people will stop and ask (though I don't let them). Except once, where I finally had to ask someone else.

The advantage of the platform lift is that I can see out the back window much better than with the scooter since the wheelchair is reclined. My only concern with the Roll-a-Ramp is whether it will be too steep for me to get it in or whether the wheelchair will turn easily inside (would give us more room for the kids on the back row of seats, which will be back up when the platform lift is removed). Oh, yeah, and reaching any straps. (Q-straint versus EZ lock?; there is a cost difference). Straps are a necessity here--the kids don't need a wheelchair in their faces if there were an accident.

So we are looking at a powered Roll-a-Ramp instead as a temporary measure and trying to plan ahead for a used conversion van in the long term (we can't do this now). Let's pray this Roll-a-Ramp works for our needs!

Why the hell didn't we buy a 2- or 3-year old used conversion two years ago? The monthly payment wouldn't have cost us more than adding a lift to a newer leased van, if you divide the cost of the lift over several years, and it would have made it much easier and safer for me--and we'd own it. Both naive and overly optimistic, I guess. We may still consider moving to an area with good public transport at some point.

I've been dealing with a lot of paperwork and phone calls recently, insurance and finances and taxes, and well, it's good to have an income and be in our house. And it's good to be out and about on weekends and up in the house doing more.

Using a Wheelchair Is Easier?
I'd love to whap anyone with a wheelchair manual who says that using a wheelchair is easier than walking. I'd love to show them the far greater efforts just to boil Ramen noodles and how much more work that requires, what an extreme effort it is to make a meal from a wheelchair. How difficult it is to get a wheelchair or transportation or to transfer.

One of my doctors (not my rheumatologist) said last year it's just easier to use a wheelchair than to walk, that people become lazy and use them the same way they do with TV remotes rather than getting up to change the channel. Now that I'm up and around more, I am continually noticing (as I knew from scooter use) that it's not easier than walking at all--if I were to be lazy, I'd walk rather than use the wheelchair, though that would cost me in extreme pain and in ability to get around for long.

No, nothing about using a wheelchair is easy, from navigating around corners in the house to reaching anything. When I can, I still do stand--while it may not be for long, it's good for my bones and heart and muscles. In terms of physics, it is far easier for me to stand to do something than to use a wheelchair to do it--but I most often can't do so and am almost completely bedridden or couchbound without one. I cannot understand why anyone would ever use a wheelchair who does not need it--from access issues to social issues, employment issues, bullying/harassment, being accused of "giving in," jolting over rough terrain or cracks, trying to carry objects, the extreme costs involved, the difficulties of transportation (often as difficult as getting a chair), difficulties with reaching everyday objects and injuring to reach beyond what one should, home modifications or doing without, using a wheelchair is a big step. It's one more people should avail themselves of rather than confining themselves to home, but nothing about it is easy.

Maybe AB's should try this: sweeping the floor in a wheelchair--it's not easier! A wheelchair is not like putting on a pair of glasses to see; it's not the near-100% corrective that eyeglasses are for most people. Navigating a wheelchair while holding and wielding a broom is extremely difficult, getting all areas and not running over the pile you just made, trying to move or get around chairs or objects. Your feet have a much smaller size to pivot on than the base of a wheelchair. And you have both arms free if you're able-bodied. While it's possible that your body might let you sweep if you could stand, it might not let you do so from a wheelchair, especially if you have shoulder or spine pain--or you may feel a lot of pain from it later. And that's just one task--that takes four or five times longer to do, with more effort expended. So even if you can do that, you might not be able to do other tasks, because of time or pain, depending on your body. And with scooters or some wheelchairs, you might not be able to sweep at all; one or two arms are needed to propel.

A wheelchair only makes things possible that would not otherwise be possible. When pain or level of function keep someone from living, though, a wheelchair is a solution. But nothing about it is easy.

Health Care Reform 2010

2010-03-31T17:53:00.000-07:00

Following are links to concise and helpful summaries of immediate and long-term provisions of the new health care act that I found in The Washington Post and The New York Times; though there is some overlap, each document contains some important information the others do not.

Health Insurance Implementation Timeline:
http://docs.house.gov/energycommerce/TIMELINE.pdf

Immediate Provisions (2010):
http://docs.house.gov/energycommerce/IMMEDIATE_PROVISIONS.pdf
You will be eligible for a group insurance plan almost immediately (less than 90 days) even if you have pre-existing conditions.

Summary of The Patient Protection and Affordable Care Act:
http://dpc.senate.gov/healthreformbill/healthbill63.pdf

I know we all still have questions about how everything will work and how much it will cost, but I hope this gives some help.

Get Your Boobies Squished

2010-03-31T10:03:00.000-07:00

Today I had my baseline mammogram...chances are many of you readers should too. If you've had more x-rays than you can count when the exposure was higher, all kinds of radioactive dyes pumped in, other hormonally influenced gynecological cancers or pre-cancers, and/or family history, you may want to consider getting your baseline earlier than age 40--the old recommendation was age 35. At least in the U.S. (and I hope increasingly in other countries), many newer mammogram machines allow you to roll right up in your wheelchair or sit in a chair. If you have chronic pain, you may hardly notice--I didn't, though some people may have increased sensitivity to pain.

Some recommendations:
-Go when pain is lowest for you, especially with the shoulders and spine. My right shoulder is killing me already--that bothered me worse than the breast squishing.
-Ask for a double appointment time (they can book you for two slots), explaining that you are in a wheelchair or have a disability. This means no one is rushed.
-Rather than try to fit yourself into a somewhat accessible changing room, ask to change in the mammography room. I actually do this for all of my radiology--much easier, no injuring joints or spine by trying to maneuver awkwardly in tight spaces.
-Try to schedule on a day when you already have another medical appointment, thirty to forty-five minutes in advance. These don't take long, and no need to trek out on a separate visit. In the U.S., you don't have to get it ordered in conjunction with a doctor's visit in order for insurance to pay; these are covered under your well-woman care and you can just schedule with the radiology center.
-Explain to the tech(s), if it causes you pain to be moved, how you need to move yourself. Yeah, I didn't explain in advance and I will in the future; unlike with AB's, it hurts if someone helps me forward rather than telling me where they want me so that I can move there.
-Before each view, turn the wheelchair off or brake after your chair is positioned, before your upper body is positioned. No need to be compress more of yourself; only the girls should be wafer thin and only temporarily. If you've ever smashed yourself into a table or wall, you know here is not the place you would want to do it.
-If you have dysautonomia or otherwise pass out easily with added physiological stress, warn the techs so they can have another tech nearby. While I did not have any problem, I did tell them, and others might have more difficulty.
-If you really have problems positioning yourself (from paralysis, muscle weakness, or joint fusion), take an attendant or family member who is accustomed to positioning you so that they can help without harming you. I did okay but could see that others who are more physically limited could have some difficulty or may need an extra hand to provide support to their arm.

In the 1990s, there were no mammogram machines that accommodated wheelchairs; other wheelie women advocated so they (and we!, younger wheelies) can be screened. Nearly a decade ago back one of my wheelchair using friends could not have a mammogram despite a worrisome lump because such a machine was not available in her area. The times are changing: for you. Having one health condition doesn't mean you can't have others--it makes them more likely. There's a high survival rate with early detection, however, so get your screenings done.

No insurance? Find low cost or free mammograms at this link: http://www.breasthealthonline.com/cgi-bin/mwf/topic_show.pl?tid=48879

Thank you, Pride Quantum

2010-03-28T18:54:00.001-07:00

I spent at least 12 hours sitting in the wheelchair yesterday--that was overdoing it and I am a little (!) sore today, but wow...My arms are sore because I helped so much in the kitchen yesterday. The strategy of moving a towel and cutting board, then mixing bowls, to my lap really helped, especially as now I sit lower (so I can get under tables). It was amazing to be up and around the whole time my friends were here yesterday. I worried at first that the back wasn't high enough, not seeing that the chair sits so much lower that the back *is* much higher. But it's not. It's fine. (Wait, twelve hours sitting up? Plus more time fully reclined?)

I am very grateful to have the new wheelchair now, as our new insurance that starts this week will only cover $2500 on DME. The delay after the approval stemmed from our attempt to get the power elevating legrests covered--we had to pay for those out-of-pocket ($2800), as our policy considers that to be a comfort item only, though the tilt-in-space and recline functions were covered. But having my legs elevated relieves my low back pain as nothing else can. Though I debated not getting the power function, I am *very* glad I did, as I make continual adjustments for pain relief all day--or have to put myself back upright to turn corners--I could not do that as I need to otherwise, and it's too painful to leave my legs down. The power function really is essential.

Everything seems to be working well and I'm not even thinking about pain! The wheelchair lift in the van needs a bit of recalibration or adjustment as it's balky right as it hits the lip of the van and requires leaning against it (not a lot of effort but may create some bruising). But the wheelchair is within its capacity (350 lbs.). It takes a lot of adjustments to get it in--I have to lower the footplates, lower the backrest just right, remove the armrest and settle it down, use the transit ties to prevent shifting (as it will; the scooter would not). Though this should get faster over time, if I take any quick runs anywhere (five minutes into a store or the kids' school) I may use the scooter. And I will plan carefully on my own--many short trips will mean too much standing for me sometimes. Long-term dream: van conversion.

If we had a van conversion, I would have ordered drop-in legrests rather than footplates for better adjusting and to keep my legs a little wider/relieve back pain. I do have to exert a lot of muscle energy to keep my legs on the plates--not only because of lack of muscle strength, but because my hips turn out very well naturally (thanks to years of ballet that made this position more natural for me--my feet always turn to the side if I lie on my back or when I used to sit on the floor). The solution: I do need to get abductor pads for the chair (or is it adduction?--the ones on the sides of the thighs); the supplier had mentioned this before, but we'd hoped the Supracor cushion (not in the demo) would channel my legs enough--I've also been far more limited in the past few months since the seating. Hopefully I can get these covered under the new insurance, though our medical reimbursement account can help with that extra expense. But this is liveable for now, especially as I remain pretty comfortable. And with the abductor pads, I won't need the drop-in legrests at all. I am not keen on having them but am also not keen on exerting a lot of continued strength--though my muscles may improve in this way over time. When I'm reclined, I push my feet underneath the footrests for now--there's a space to do so. I also know some exercises that can help.

The wheelchair is much more responsive than the scooter, so I am extremely cautious near curbs and turns. I'm learning how to balance between stopping the chair and moving the chair too slowly to negotiate around an object and on the other hand, trying to maintain speed in anything other than a straight line; I may look a bit drunk or really uncoordinated as I get going sometimes. Reversing feels difficult/counterintuitive because the back casters move independently, but I'm improving. It still makes me a bit nervous. But I don't need to reverse much since I can turn myself around as a walking person would do--scooters require a lot of backing up since there's often not room to turn them around. I can hold a cup of coffee (carefully!) as I cannot do on the scooter--both hands are needed for control when reversing or making a tight turn, I find. Channeling the chair between narrow doorframes is still difficult at times and I worry about hitting doors or bumping pedestrians (I try to give space).

We went out to a movie today (more on it tomorrow, I hope) and "walked" for a mile and half. It did not feel that far! I don't even notice bumps and cracks in the sidewalk--so much easier on my spine. When we went to a movie a few weeks ago, I was only able to go to the movie (the movie seat was more comfortable for me, so I sat there) and very briefly to a game store my son wanted to visit; it also took me a long time afterward to recover from this outing. What a difference to sit in my chair four hours, with only a little leg pain.

I am far more able to sit up (better for me, higher heart rate and better for my urological issues) and can do more physical tasks--though they are more difficult in a wheelchair because of reach and access; even clearing clutter takes a lot more effort, many times more. I am more active, not less active, in my wheelchair. I think I look better in it, though I did not think this would be the case. My posture is where it should be rather than slumped around to avoid pressure on some joints, and I'm not in pain.

FREEDOM!

2010-03-26T16:10:00.001-07:00

New wheelchair here...

It was late since the alternator on the service provider's van broke (fortunately they had another van free and someone else went to pick up the chair!), they were here an hour, and I've been rolling around and microadjusting for an hour.

The service technician (she!) said that she could tell a big difference in my pain level when I moved from scooter to chair--she could see the difference on my face.

Rolling again....

You People Are So Lucky...

2010-03-26T10:41:00.000-07:00

...that you don't have to sit with Her Impatience (me) right now. My antsiness would get on your nerves.

But we're having some friends/family over tomorrow night--sort of an informal new wheelchair party. My cousin's bringing a cake.

Notes on a Film: The Doctor

2010-03-25T06:20:00.000-07:00

Last night I watched The Doctor, a 1991 film with William Hurt, on Netflix. Adapted from the autobiographical account of Dr. Ed. Rosenbaum, the movie features an expert surgeon, Dr. Jack MacKee, who does not show compassion for his patients and who can be callous towards his patients' bodies in the OR. Dr. MacKee's actions in this film represent an extreme; while many of us have encountered a physician who can be indifferent or cruel, I would hope that most people find doctors who show kindness and conduct themselves professionally even when they think patients aren't looking. When MacKee acquires cancer himself, he finds out that the system does not treat him any differently from other patients.

Like the other patients (and us), he must deal with unsettling waits for difficult news, practitioners and technicians who don't explain what they are doing to him, medical mistakes, outright fear, humiliation and embarrassment, an inability to get important test results long after they are available, bureaucratic paperwork and errors. Gender does not soften the system: though his doctor is female, MacKee is subject to the cold indifference he often showed patients. When he complains about it, saying that everyone will be a patient someday, his medical file is thrown at him in anger. The irony: his doctor is kinder than he was.

While a two-hour movie can only capture so much of the medical system, I definitely recommend the movie to both physicians and patients (who are more than patients--we have lives outside that status). From Dr. MacKee, we see that much of the heartwrenching emotion patients sometimes struggle with stems not from a lack of medical knowledge but from the medical system as well as the illness or disability. Patients are not "stupid" for having emotions or being ill or disabled or for struggling with the indignities of medical tests and the medical system, which dehumanizes because it simply cannot accommodate individual needs, such as MacKee's need to see his own patients on time.

Even though he is a physician, MacKee's express wishes are ignored. He asks for a lead apron to protect his other organs while his tumor is irradiated--the technician denies this and claims he is safe since the radiation is focused. Why then, does the technician himself leave and close behind him a shielded door? To protect himself. I know all of us who have undergone test after test with radioactive dyes and x-ray after x-ray, all of them essential (or so we hope), wonder when that will catch up with us or if it already has (precancerous tumors, anyone?).

Hurt does well at capturing the subtle but clear emotions of a patient enduring tests and surgeries, wondering, "What is happening to me? What will happen to me?" None of us would subject ourselves unnecessarily to the pain, fear, indignities of the medical system, nor if we could help it, to the coldness of a system that only increases the anxiety.

Friday, just in time

2010-03-24T06:25:00.000-07:00

Friday at 3:00--tick tock tick tock tick tock tick tock. Have been afraid to write it, hoping all the specs are right, that everything is in order. Goodness, excited. If you don't hear from me this weekend, I'd assume that I'm trying the new fancy wheels on all kind of terrain and doing a lot more indoors and out. If you want to see how I move in a wheelchair, stay tuned for the rest of the post.

I am impatient but will need to pace myself. I am remembering my first long day on scooter in public, though this wheelchair will be much more comfortable for me. I want to find some uncrowded open public space with varied terrain. I can think of a few places that are typically great but that are unusually crowded on spring weekends. And I want my husband nearby in case I get stuck--I want to know my limitations as well as how the chair moves, especially before I crowd myself into elevators or doctors' offices.

I've been thinking about long-term goals, and we all need them to keep us going. I've been thinking about a really wheelchair friendly house for the long-term--this isn't something for now, but ten years or more from now--again, a goal. What stops me planning is wondering where we would live and whether we would modify an existing house--maybe this one; a stairlift alone would accomplish a lot--or build a new one--taking some of the best features of this house that we already like, sizing down some, etc. But I think dreaming is good--I kept stopping myself from doing so because we don't have the money for moving or modifying now, but I realized I am stopping myself from thinking about the future that way. Can a balance be found, so that I am content now (as I should be) while thinking ahead?

I have been doing more cooking as I can, but it's important to think about organization (which can put a quick halt to my cooking if I can't reach or lift something). There are some useful videos on Youtube on cooking with a wheelchair. The first I show here features Shannon Minnick cooking one of my favorite indulgences, fried chicken. Shannon and Bonnie (in the second video) have more common sense than I do, and I've just learned from them to move the prep bowls and cutting boards to my lap. This will actually be easier in the wheelchair because the scooter tiller can get in my way. While I do sometimes move to the dining table, as Shannon suggests, that can be a lot of trips back and forth sometimes. Wheelchair users can get shoulder pain from working at high counters, another reason to do some work in your lap or at the dining table. Notice how she protects her lap with a heavy duty material--when you use a wheelchair, you can't jump out of the way if something hot falls as you can when you're standing.

I have not yet seen other wheelchair users move as I do and as Shannon does, approaching the destination and making the turns at a relatively high speed and sliiiiding into place. That's time saving when you're in a hurry, heck on the walls when you are me and oops--well, this will be one advantage of the tighter turning radius of the wheelchair--the scooter's turning radius is wide. (I am not at high enough speed to be in danger and wouldn't do this outdoors--I know my scooter's limits.)

This second video from Bonnie shows how some everyday kitchen tools can be adaptive devices, with an egg slicer used to chop strawberries and kiwi, for example.

In her other videos, Bonnie demonstrates some ways to reorganize the kitchen and make out-of-reach items more accessible. I know Pampered Chef products have made my cooking a lot easier because of the ergonomics of their products--though the stoneware can be a bit heavy for some people (I still love it because it's easier for me to clean). While I don't have quadriplegia, spine pain greatly limits my reach, and I may benefit from some lazy Susans or putting straps on hard-to-reach items as well.

Some assistance may still be required. I can't reach into our oven or dishwasher when in the scooter, though that may be easier with the wheelchair; it will still be physically difficult because of my spine pain and limited mobility. In one of her videos, Bonnie shows a countertop oven that's larger than a toaster oven and a griddle that can be used on a tabletop. While some assistance may still be necessary from others (my children often help us with loading and unloading the dishwasher, for example), it's good to have as much independence as possible. These are some items to think about for the long-term; it is much cheaper, definitely healthier, and often easier (no driving) to eat at home.

Shannon, by the way, also shows how to do pressure relief maneuvers for people without the upper-body strength of a paraplegic. While I knew I needed to prevent pressure sores (especially when I developed a spot over my sacrum), no one showed me how to do that, and she shows a more efficient way than I had been doing. If you're not going through rehab or seating specialists, no one gives you this and other really crucial advice. Thanks, Shannon and Bonnie, for showing some better ways to accomplish everyday tasks. Now I really am craving fried chicken, which is on the menu this week.

Say No to Colloidal Silver

2010-03-13T20:46:00.000-08:00

One of our local groceries has colloidal silver on sale. An alternative health care practitioner recommended it to me once just before I got pregnant; thank goodness I trusted my intuition (always listen to it) and did not try it.

Colloidal silver will turn you blue. BLUE. Bright blue, not hypoxic blue. Permanently! Irreversibly. It should be outlawed. Go to "google images" and look. Shame on those who continue to sell it or "prescribe" it.

Besides, aren't we trying to get heavy metals out of our systems? Isn't that what alternative health care practitioners recommend? The mercury in fish and vaccines and dental work is suspect; we know that mercury can cause grave harm, giving people long-term tics and brain abnormalities. And there's lead--lead poisoning still a risk for many children from old paint or its residues in their homes. Yet we're supposed to take drops of silver? (Or gold, for arthritis patients.)

The problem is the word "colloidal." People like it. It sounds scientific and friendly and interesting. For nonchemistry types, it says, "I am grown up, doing something fancy schmancy." If you want to look like Papa Smurf or Smurfette and don't mind risking your neurological system, go ahead. But otherwise, stop it if you're taking it and tell others. If gut instinct doesn't stop you, always, always research any alternative heavily, looking for in-depth information about contraindications, adverse effects, allergies, and interactions with other drugs or remedies. And remember, there was a first person to turn blue, and a second...

So often we hear that because something is "natural," it's safe (see Andrea's excellent post on this topic at http://qw88nb88.wordpress.com/?s=natural). As others have said, hemlock is natural. Cyanide is natural. Poison ivy is natural. Toxic mushrooms are natural. Natural absolutely does not imply safe. You would not, I hope, wander through the forest picking up pretty little mushrooms and popping them in your mouth, not if you value your liver and your life. You'd research them with extraordinary caution and most often rely on experts who really know their work, not quacks who read a guidebook. Even then, deadly mistakes can be made.

Note: chelation for heavy metals is also dangerous, though fancy-schmancy sounding too.

I Don't Deserve This

2010-03-12T14:50:00.000-08:00

Road crews have been working on a section of our street corner all day. When I went out to wait for my daughter's bus, as I always do when my husband is not there (my son moves the ramp to the front, which he could not do two years ago; his bus arrives earlier and at our door rather than a half block away), the work crew began physically mimicking me and making fun of me. In front of my kids.

Telling them they work with my mother-in-law did not stop them. It made it worse. (No, she would not gossip about me at work. Probably few know about my level of disability.)

Their supervisors are not back in until Monday.

The world has gone to hell in a handbasket, and I don't mean the one on the front of my scooter.

While not all eight or so did this, several did. And even one person harassing me, especially in front of my kids, is too much for my comfort. It makes things difficult for all of us.

Quiet

2010-03-10T21:38:00.001-08:00

I had not realized it was so long since I blogged--having the job is good, adjusting to loneliness has been difficult. When our transportation and other issues get settled down again, things will be easier--right now I haven't been able to make it to needed doctor's appointments. Thank goodness the kidney bleeding crisis ended right before my husband started the new job. It's difficult for me to engage without more help or mental stimulation--I have been reading and commenting on some blogs, though. I have little concentration that I want for various tasks, distracted by emotional and physical pains, the difficulties of being physically dependent but not having help. My counselor won't do phone appointments (I can't leave home for multiple reasons) but I did call a crisis line this week and that has helped me move forward, ever slight, barely perceptible.

I am not habituated to be an anchorite, but when times call for it, I tend to go within almost completely. Except for doctor's appointments--and the last of those on February 4--I had not been able to go places since my son's Christmas party and a twenty minute run into two stores. Most won't visit, even those who have time; it's always a tentative future event or unfulfilled promise if a day is set. Unintentionally, now most emails unanswered, phone calls unreturned. I intend to answer them. It's like I can't make myself move. I just need out--I have been able to get that on weekends some, finally, a few hours here and there. It's not personal if I've not responded; I will try and want to try. I long for connection and yet it's as hard to do as physical movement when the pain is greatest. The unengaged aloneness for this much time just feeds itself, depression I guess.

My children will be on spring break soon. We will have visitors and visit and more good in the coming weeks.

I need LIFE. While antidepressants are helpful for some, right now that would be like putting a band-aid on a spurting artery. The cause of the bleeding has got to be addressed, rectified, and right away. I am absolutely isolated during the work week, plus people are gone for evening activities, birthday parties, errands--weekends can be as difficult as the week. I want to work or do personal projects/hobbies, but I need help to be able to work, with retrieving or setting up or books or materials or getting me to an interview. A wheelchair. Dressing alone can take up all of a day's energy if I don't have help or must rush. I make sandwiches for the kids before school and have to lie down for three hours, still not recovered fully from the pain. If we don't plan carefully, I don't eat.

I knew things were getting bad last week when I couldn't even look forward to the wheelchair (bound up in red tape)--that's a bad place to be. But I feel hopeful realizing I'll have ten days with the kids, and probably transportation during that time too to take them somewhere, plus not so much pain that I can't get them out some. Spring weather ahead...

Website for Potential PCAs/Household Help

2010-02-15T12:27:00.000-08:00

U.S. specific:

If you're looking for a personal attendant/caregiver or even just some help with errands, check out Care.Com. Click on the "special needs" tab for PCA assistance or "care gigs" or "housekeeping" for other kinds of help.

PCA can cost a lot less than maid service, with help more tailored for your specific needs.

I think we're reaching a point that some help may be a necessity rather than a luxury, at least some of the time.

Valentine's Day: Sex and Disability 2

2010-02-14T06:36:00.000-08:00

Valentine's Day Sex and Disability Event hosted at Dave Hingsburger's blog. Feel free to join in the discussion, write a post, or share a link.

Last year I wrote that not only do people with disabilities have sex--a material fact that continues to surprise nondisabled people--but we can do so creatively and with joy. If you haven't read that post, you may want to read it first. What I write about this year is a bit more sobering and not sexy per se but as important.

We disability activists see disability rights as civil rights, as close kin to protesting segregation and sex discrimination. Rosa Parks protested being sent to the back of the bus; disability activists such as Ed Roberts protested being unable to get on the bus or to the bus. When a group of people is exploited, objectified, seen as less, their sexual rights are as sublimated as their rights to employment, voting, and freedom from harassment and violence. We have seen this happen with black women who were raped and yet considered to be unchaste, a young black teen who was murdered for looking at a white woman, with nineteenth-century Western white women and twentieth-century African women subject to genital mutilation, with gay people who have been murdered. These are but a few examples. And when it comes to the sexual rights of disabled people, we're still in the dark.

Here's what I want: a movement from a culture of abuse and denial of our rights to sexual autonomy.

People with disabilities are far more likely to experience sexual abuse than their nondisabled counterparts, by caregivers, aquaintances, and partners. 83% of women with developmental disabilities and 32% of men with developmental disabilities experience sexual assault; 49% of them more than 10 times. Of women with physical disabilities, 40% experience sexual assault (twice that of the general population). These and other interesting statistics can be found from the Wisconsin Coalition Against Sexual Assault). We are subject to assault but not seen as sexual beings who could want and act upon sexual urges on our own. What an irony.

In addition, there is sexual abuse from medical professionals. If you were an abuser, what job would you work in? Perhaps one where you have access to kids who are not supervised and who are very vulnerable, or adults who are very vulnerable. I experienced "minor" sexual abuse as a child by an x-ray technician given responsibility for x-raying every bone in my body, then a similar situation as an adult when I had my first spinal MRI (the technician checked to see if I wore a bra with his hand and then left his hand on my breast, telling me to think of my "boyfriend" during the procedure). And something similar while partially sedated (by a tech or male nurse, not the physician). I can't be the only one, and I imagine worse has happened, even routinely, to some people with disabilities. I don't quite understand the dynamic, whether people who abuse within the profession abuse others as well (equal opportunity abusers) or if they only target people with disabilities or who are medically vulnerable because they see us as less than human. Even while I had to have pregnancy and STD and hepatitis testing following an act of abuse, radiology techs and nurses almost never ask me if I could be pregnant; only very recently am I not able to carry a pregnancy because of an incidental condition probably unrelated to my disability--but many other wheelchair users can experience pregnancy. Thus the medical profession acknowledges our abuse and even participates in it (see Ashley's case) without acknowledging our autonomy: that we can and do have sex is not acknowledged--routine protocols are dropped.

At the same time that PWDs experience more sexual abuse, we are often denied sexual autonomy. Not only can abuse affect people's healthy sexuality, but institutions (hospitals, rehab centers, nursing homes, "schools" for people with developmental disabilities) lack privacy and often have policies that interfere with expressions and acts of sexuality between partners or alone. Caregivers, whether family or paid, can disallow, prevent, or punish sex. People who need help positioning as others can do for themselves may have extreme abstinence forced on them, and those caught in nursing homes or institutions are labeled as sex offenders even as their closed doors are ignored. The system that denies many people less-expensive home caregivers and thus forces even young people away from their homes and into institutions denies people many other rights to basic decision making (when to eat, go to bed, and more significant decisions and preferences we take for granted). Thus if you are in a nursing home in Chicago, you may be sexually abused for years (recent news stories). But have sex on your own, not so much.

Even while people assume we "don't" and look surprised that we have children or use birth control or vibrators, others assume our bodies can be touched, pushed, assaulted, and that we just won't mind. Or they assume in more minor ways that my relationship is over and my lack of a wedding ring signifies anything other than arthritis in the ring finger that I broke, that my husband is as available as if he were single, that he is the one truly suffering most, that I am invisible, that my existence lies outside the boundaries of consent. That my inability to be present signifies something about our relationship rather than my ability to be present.

The reticence of people to acknowledge our sexuality and sexual ability means that when problems do arise, there are few answers. It means that PWDs and people without disabilities may miss out on relationships because of people's wrong assumptions. There is still very little written on sex and disability, and people with disabilities report that their doctors or counselors are not willing to answer questions or give advice, though to many of us impairments in this regard can be distressing and affect our most personal relationships. Solutions may not be found and we may be asked directly or indirectly just to live with pain or abstinence. Right now intractable pain and extremely limited mobility in my hip means that I often cannot have partner sex or solo sex in the ways that I prefer, even with variation. Is there a solution to this? Heavier pain meds that I don't otherwise need given before and after, a minor hip surgery? Surely there are some answers, and it should matter to someone that my lack of hip abduction significantly affects me in a way that others may think insignificant or nonessential.

Nevertheless, it is my body and my problem. Whether or not I have sex should be determined by my body and my brain. I should not have sex forced on me, nor should I be prevented from having it, nor should people dehumanize me by assuming I do or don't engage in or enjoy sex, fantasy, toys, masturbation, sexual media, or discussion of sex. We are more like those with disabilities in this regard than not; people prefer to make a separation and imagine that we are different.

Snow Day!

2010-02-12T01:14:00.000-08:00

Record snowfalls=snow day. That just doesn't happen often. Beautiful, like a fairyland.

Grateful for this since it's been a long week. My husband was also gone Sunday for one last interview Monday and I had two sick kids and a major pain flare. Can't wait for the chair (will be before end of March)--that will make caring for myself without help far easier/with less pain--it removes two transfers every time I must go to the restroom (couch or bed-chair-toilet-->the couch is particularly difficult to move from) and means fewer transfers/getting up in general because I won't need to get up so much--or avoid it, as I had to do yesterday. I'll already be in the chair. The kids got everything ready for dinner last night except cooking the meat--my husband has a long commute. I just could not sit up much after overdoing Sunday and Monday.

So very relieved about the approval too--my husband will be doing a fair amount of international travel. I think he'll have good opportunities there and he's very interested in this new work, though we both wish for a higher salary (he's making far less)--if he had got the job he interviewed for on Monday, we'd have been able to hire a caregiver part-time and meet all financial obligations and work toward our future more. He can reapply there in a year, though--this company hires people all the time, and the manager said he was on the fence about him, that his coding just needed to be faster (which it will be again in two to three months, with skills more specific to that sub-field). Not only would the location be beautiful and liberal and artsy, but there would be no medical copays at all, none. No insurance premiums, no copays. Granted, what insurance turns down (seat elevator on wheelchair, for example) we'd have to, but that would be far less than the extraordinary expenses we've had. On this salary, I can't continue on Enbrel because of the extreme co-pay; we just can't afford that and meet our other obligations, including immediate medical needs that arise.

But I don't have to worry about being the most medically expensive--a lot of the people in the company are much older and have recently had double knee replacements and lumbar surgeries. Obviously we all have the responsibility to be responsible, but I think we'll be okay if urgent needs arise. I don't foresee any other surgeries needed soon and my other medicines are cheap--generics.

Just lots of adjustments this week--physical, mental.

Other good news :) :) :)

2010-02-08T14:46:00.001-08:00

Wheelchair approval. :)

Good News

2010-02-04T13:16:00.001-08:00

My husband has a new job and starts next week!!

The insurance is with a company we used several years ago that seems to be a lot better; that will start in a few months. I will probably have to go back to my former rheumatologist, though; very unfortunate since this one is so good. The company, which is very small (about 100) self-pays to save costs--in other words, it's not true insurance but a plan managed by an insurance company. The company pays directly for all medical costs. This makes me nervous since the company will see expenses go up some--though of course other people have babies and surgeries and other costly events. Enbrel is high cost and I have had to have a lot of surgeries and procedures in addition to more regular appointments, diagnostics, and regular labwork to monitor the changes. I always hope the more expensive (and distressing) events are behind me. And I feel paranoid about staying on a high cost drug ($15,000 a year). I don't know if the company/HR knows which employees they are paying out on. I imagine looking costly to people at family events, who will know why they're paying more for insurance; certainly it would be wise to keep my medical information very private or to minimize ("just arthritis!"). One reason that I stay anonymous--for his employability as well as mine if circumstances change.

All of this, of course, feels minor after nearly a year of unemployment and being very close to being out of our home.

In other good news, if I had a kidney stone (or stones), it passed. I was feeling much better during the evening yesterday, though I woke up with a yelp at one point last night, was gasping while lying on the x-ray table, and still have some pain. The IVP, sonogram, and cystoscopy all came back just fine--no other issues. What a reminder to drink lots of fluids! I did have kidney pain and bleeding. It is still possible that Enbrel caused it. We'll just have to be watchful and careful. I am *very* thankful not to have to deal with more procedures to rid myself of stones right before my husband starts a new job and that there is nothing extreme to worry about. I am feeling very relieved after a difficult morning full of procedures. I am back on the Florinef again. Somehow the instruction manual to me was misplaced.

Please Help a Friend

2010-02-03T06:18:00.000-08:00

...this include my friends who are not disabled.

Most but not all of my readers also read Elizabeth's blog (elizabethmcclung.blogspot.com). Her wife Linda has lost her job and unemployment is there is a tiny fraction of our unemployment, not even $500, with NO food stamps. Elizabeth may also lose insurance by the end of the month, as hers was through Linda's job and she is just now eligible for disability because of this job loss in her family. There is no COBRA as there is in the U.S. (Americans need to become aware of the limitations in universal care in Canada, especially the poorer provinces). They don't have a place to go locally if they can't meet the rent.

On her Amazon wish list, Elizabeth has a list of essential over-the-counter medicines and Gatorade that she must have for her dysautonomia. These will help. Also, if you can get a CANADA Safeway or CANADA Thrifty's gift card. Otherwise, you can also donate to their medical account at the link in the right column at:
http://lindamcclung.blogspot.com/

I know many of us are so strained financially, but I can honestly tell you what a huge difference $15, $20, $40 or more can make after unemployment for almost a year. It can make the difference between eating or not eating, getting the gas money to go home or worrying if you can get back, getting dishwasher soap, keeping phone and internet for job searches and personal survival for someone who's disabled and at home. The small donations we received meant just as much and always went for immediate needs. If you can donate something else, she'd like a few manga from her wishlist--she's alone a lot, can't concentrate on or see finer text, and this gives her something to do during long hours of the day and during times of intense pain.

Please help out, friends.

Hi, Dear Readers

2010-02-02T13:20:00.000-08:00

I have an alleged kidney stone and related bleeding/technicolor lab samples that are giving me grief (though it's not comparable to birthing a baby, it just won't budge and I'm very uncomfortable/can't rest easily). I had an early appointment today and have an IVP and a second doctor's appointment later this week. That's after four doctor appointments last week (I *never* want to do that again, tried to change the fourth but couldn't). I was prescribed Florinef for amazingly low blood pressure that had lasted several weeks. Amazingly, the low blood pressure mostly went away by the end of last week. The culprit may be Enbrel and steroids for each of these. Hoping the kidney stone will be just as amazing and do a disappearing act so that I can be blogging away and doing other writing soon.

This, my friends, is why I prefer not to be on a lot of medicines. I just don't react well to them.

However, I should have some good news to announce soon. Hanging in there in the meantime--a wonderful gift box from Elizabeth, Cheryl, and Linda is still bringing me much enjoyment and needed distraction, and I've had two visits from friends recently. These mean so, so much after many lonely weeks.

Eloquence is gone. Coming back to the post, I remember to say the injection into the ischial spine went well and I can sit up more without trying to throw myself backwards to relieve pain. I still can't do it for long and still need the rehab chair with tilt.

Valentine's Day: Calling Disability Bloggers, and Cabin Fever

2010-01-19T12:49:00.000-08:00

Dave Hingsburger will be hosting, for the second year, a Valentine's Day blogging event with the topic of disability and sex. There is very little written on disability and sex, a lot of silence. Let's break that silence. Please sign up on his blog to participate:
http://davehingsburger.blogspot.com/2010/01/calling-all-bloggers-sex-time.html

Cabin fever is real, let me assure you. The more bedbound, couchbound, hospital bound you are, and I do mean bound in this case even if the ties are invisible, the more the mind can begin to snap. Days don't make sense, moments blur, time loses meaning. I can hold on longer than most, though once postpartum and sleep deprived I became desperate to leave the hospital, too confined, like an animal wanting out. Chew your foot off. In contrast to some of family, I've always needed to get out, needed direct social contact.

Sometimes I want to die. Not now. While I know it can't be helped to feel it, I know it's wrong to say it, maybe not to you or you or you, but publicly, openly. And I know to express that would confirm in others' minds that I should die or that life with a disability is not worth living, that assisted suicide is what anyone would naturally want. Sometimes I am fine, cheerful even. But when I express that, people tell me when I say I am fine to their inquiries that I am not.

I should have been an existentialist.

Yes, I have moments of joy, but right now I have extreme cabin fever, restlessness. I am by nature an active person, contrary to what most ableds would believe of me, so that having to slow down was tortuous, an adjustment. But the problems I experience are fixable. A solution that doesn't mean medications but a wheelchair and some way of being meaningful in the world and being able to go out in it. Or people willing to slow down and be a friend, continue friendship, in the meantime.

How do I become productive at times like this, make it through? I'm thinking of making a video documentary, with help, of what it's like. It's all about the framing, nuance rather than simplicity, conveying the gray areas rather than people's absolute perceptions. Literally putting the writing on the wall, my husband's said he's okay with me marking off the days on the wall as I suggested--even though he's painted the wall.

I am at times very resentful. Able bodied people I know who have called and said if they can do anything at all, let them know. I name several things. No, none of those. No visits, no picking something up for my husband from the store even if he pays them back. People say they keep me in their thoughts and prayers. They should, because most people only keep us in their thoughts and prayers. So my friend was disappointed that I could not make the tiny dinner with a former poet laureate, but he cannot make time to see me here.

I've learned this: often churches interfere with God's work. They abate guilt, they consume time, they rally around crises and drama. But address ongoing needs, no. No. People are willing to judge us for what we can't do in our volunteer capacities, but volunteer to help us, no. That my husband isn't doing things well enough or perfectly with Scouts--well, maybe they shouldn't have put this demand on him or should step up themselves to help. People become too busy with their churches to help their families. Too busy having lunch out with friends weekly to ever get takeout and bring the lunch to a disabled or elderly person's house. Too busy for one of hundreds of people I know to take thirty minutes to stop by--if each of them took a turn once a week, just fifty of them--they'd only have to drop by once a year. But not even most family will.

I call this "bodycast syndrome." People would not see me when I was in traction or bodycasted when I was small--people didn't want their kids to be exposed to "that." People are worried they'll feel down. I don't understand this, why someone would feel down about visiting someone who's isolated from illness or disability. Unfortunately, my closest friends, the ones who do stop here, all live far away. They visit when they can. As Lene puts it, people want to have FUN FUN FUN; although we can certainly have fun too, no one sees that.

I've only had a couple of visitors in the past five or six weeks. I feel my mind slipping from this. I have a new rule, like Elizabeth, to get out once a week (not including doctors' appointments) no matter the cost. So last week I did go do two errands--I could only be out twenty minutes other than the drive time. I will do so again tomorrow.

I am learning, increasingly, I am not the only one alone like this. My most disabled friends are all in similar circumstances, and I can't speak for myself, but I can't understand it for them since they are very loveable people. What's going to change this? Do people realize too late when they're in the nursing homes by themselves?

So Lonely

2010-01-06T17:53:00.000-08:00

"Now no-one's knocked upon my door
For a thousand years, or more
All made up and nowhere to go
Welcome to this one man show
Just take a seat, they're always free
No surprise, no mystery
In this theatre that I call my soul
I always play the starring role, so lonely
So lonely, so lonely, so lonely..."
--Police, "So Lonely"

Disability is plunging the well of loneliness. The physical and emotional demands strain, but our connections to others stretch like a tensile thread that breaks, sometimes absolutely. There are those who are near me regularly, family. And those who do visit, a handful. My disabled friends who have been such a support. The children, here so much during vacations and holidays and weekends.

And then there are the disconnects, the fractures. Or the times alone, too long too long too long.

And sometimes I am the disconnect for others--because I cannot keep up, cannot be there. Sometimes I am disappointed, betrayed even. Often I disappoint, both myself and others. Betrayed by my body. Yet I do not know that I would want to give up what I've learned, this picture from the inside, and what I've been given in friendship and seen from others. How much more poignant the light from those who have so little who give so much. Again and again I see those who have the least, those dealing with their own disabilities or personal challenges, give the most. There's not one line of the Beatitudes that do not remind me of them.

The support that some give is immeasurable. People say they want to do more, but even the small amounts, the short phone call, the evening visit, the email, it helps more than they know. It keeps me going. I know what we all want is for pain to drop itself away. Instead it blooms and flourishes, its own strange flower, growing like a beast within my pelvis and spine and back and hip.

I breathe for the respites. I yearn toward them, like a driver leaning into a curve.

Dr. Empath, who's again empathic and understands these changes, that the wheelchair at this point is freedom when juxtaposed with 23 1/2 hours a day in bed or on the couch, has a new quotation on his wall. (And he does get things better than I realized--just that the main issues are rheumatologic, outside his specialty.) Something like "the end of pain is happiness." That's true. But what about when pain does not disappear? One still must find happiness. John Stuart Mill said that we only find happiness when we stop pursuing it, immersing ourselves in what is. One still does find sparks, flintstrikes of good that shock even among the greatest hurt. The arm of a child shielding me from emotional pain, the package in the mail from someone who must herself be at home.

At the quiet times I feel like an anchorite, one of the religious mystics who walled themselves in for closer contemplation of and connection to God, the breach with the outside world almost complete. Only less good and more Frida-y. The thread grown thinner. And then there are times out, too few. Yet theirs was a choice. Is it a choice for me? I don't think so. I push back harder, falter, and the pain rises again. I push back by degrees, slowly. The pain rises.

My rheumatologist recently said I have a low quality of life, knowing that I am working toward less pain, more function. He was being empathetic, but I don't agree with that statement. Right now I am feeling at a point of transition again. But I don't agree that I have a low quality of life. I live a life of the mind and do something intellectual most days. Your world can close in with disability. It's a smaller world but no less valuable, no less than that of the anchorite, the senior who cannot get out, the caged bird who sings. No less than the shaky and ill baby mouse removed to a tiny habitat, nurtured for days in my arms and watered from a bottle cap until time to be placed in a larger world again. Instead, life more treasured, more joy in the small moments, no rush.

The pain, so sharp. But also the joy.

Gaaaaah, Pain!

2010-01-04T13:15:00.001-08:00

I have not been able to sit up in the past week. I came within a second or so of passing out last night, I guess from pain--I'd felt dizzy/giddy like high on a helium balloon for a bit--couldn't figure out why, then boom--though I was already lying down in the best position for avoiding passing out. I managed to yell, "dizzy, something wrong!" first to alert others. Then my vision went almost completely, roaring sound in ears. I'm wondering if I have an ischial fracture instead of ischial bursitis; slept late, called rheumatologist re. x-ray or referral to orthopedist, haven't heard back yet.

I just want to go to Target for a couple of on sale items and another store for a fast exchange, maybe, and to get my son new shoes--he's got big honker feet all of a sudden. And I've been wanting to go for over a week now. My expectations are small and fairly reasonable.

Floundering some. Can't think straight. Pain medicine not enough. Husband says I must be in pain to sit on ice all the time when it's cold.

Happy Holidays

2009-12-24T09:10:00.000-08:00

Hmmm, Wheelchair Kamikaze drives a 6000Z. Maybe other people really do know what's best for me! It's difficult for me to trust that sometimes.

To those of you who celebrate Christmas, may the day be wonderful; may everyone have a wonderful holiday and New Year.

I am remembering back to a couple of years ago when all I genuinely wanted for Christmas was a good scooter and a van with lift. Wow, to have those! Without them, life would be very circumscribed.

Advice on Quantum 6000Z versus TDX SP?

2009-12-22T13:07:00.000-08:00

Any words of wisdom/advice on a Quantum 6000Z versus TDX SP? They look more streamlined in person than on the web--mine will be configured similarly to what I saw in person. I could sit pain free!--and imagine myself working many kinds of jobs at least part-time with one. Not to mention more basic tasks such as preparing food for myself or paying bills or answering the front door. I am very limited on seating ability right now--I can sit up a few hours a day; with much longer than that, I get bedridden/couchridden for a few days at a time in agony. This could be life-changing! I need and want to be able to care for myself more and be more independent--I will simply have to with any kind of job my husband will get.

The tilt and recline are heavenly and I can keep myself in a slight pain-free tilt even while driving them. Wow, what a difference from sitting in the scooter. I have no complaints about my scooter and still believe it is the best scooter out there. My seating needs are just higher--I generally have to elevate my feet some to relieve pain too.

My inclination is a 6000Z--apparently Permobil is not an option with my insurance though I wish I could try it to see. The main problem is getting all the casters lined up to change direction/back up--that will take some practice!

Let's hope insurance comes through. I am glad to have assistance through this process.

Enbrel, Round 2

2009-12-22T10:24:00.000-08:00

I injected myself today and it went fine. Only complaint is that the needles aren't quite sharp enough--trying to pierce skin with a dull needle is not fun; other Enbrel users have said the needles aren't as sharp as they used to be.

It does seem to help with the fatigue part some but the pain has been horrible. Did okay yesterday but had trouble moving at all today from being out trying wheelchairs yesterday. I think I found one that will work okay and will allow me to do much more both here and out and about--reducing pain greatly. I joked with the rep about whether I could just take the demo home--I'm sure I'm not the only one who jokes about that but yes, it felt a lot better. I even transferred back out of the scooter into it to finish our ordering details/discussion. The joystick drives a lot differently from a scooter--that will take some practice. Backing up is really difficult--figuring out which way to get it to back up since the casters aren't straight. I'm sure that in a week or so it would all come naturally.

Lead weights on.

Doing the Hard Drugs

2009-12-19T19:34:00.001-08:00

Well, I did it. I took an Enbrel shot yesterday. I couldn't take the pain and the inflammatory fatigue that was making me feel like I had a new 40-pound lead x-ray apron strapped to my back and others on my arms and legs. I haven't even been able to roll over in bed to get pain medicine. Instructions to husband are as follows, and I quote (hmm, watching too many Christmas movies): "Get pain medicine and the tachycardia medicine into me before leaving." Then I have to wait close to an hour. Otherwise I can't get out of bed to go to the restroom and on to the living room. I could not do anything that I needed to do this week, even sedentary tasks that would have helped my spouse a lot. Lead weights on everything.

The wrong shipment had been sent to me for the second time (latex needle caps instead of latex free) and I decided I was going to do the shot even if I had to get a friend or family member with phlebotomy experience to do it. I called the doctor and said, "I'm coming in." I would have done it without help if necessary. I wasn't going to wait for the new shipment on Monday or Tuesday, latex sensitivity or no (from prolonged exposure).

We will see. I am looking at the syringes a little suspiciously but hoping they will help. Fatigue seemed a little better last night, was able to push myself to do some in the kitchen today. Not nearly as much as I would like, but it's a start. A start after a near-absolute stop, being out of the house an hour or two a few times this week and not being able to do anything else.

It's often not been a choice at all for me because of pre- or post-surgery conditions or infections of various sorts. All right, we'll see.

Frida and the Sea Monkeys

2009-12-17T20:45:00.000-08:00

This awesome acrylic painting of Frida Kahlo by Kipling West features a horde of sea monkeys and a packet of brine shrimp for a necklace, an allusion to a self-portrait with Frida's pet monkey. It brings to mind items you coveted as a child but that Santa just isn't allowed to bring. You remember those were advertised in the Archie and Superman comic books? I also coveted the Kenner tree house and Weeble Wobbles that friends had, but I don't think I ever added them to my list; the old Fisher Price Little People houses were what my sister and I loved best. The sea monkeys remind me of last Christmas, when my son, who's not yet discovered the real Santa, saw his new pair of real mice and pleaded, "Mom, please let me keep the mice! Santa brought them!" Oh, the irony! I did always want the sea monkeys, though my sister and I purchased an aquarium when we were older and that exceeded any visions of sea monkeys that danced through our heads.

Christmas items are on the way--and one surprise for hubby. He's not sold his watch and I've already cut my hair. Whew! Tenuousness. I am excited--gifts mean so much more when it's difficult to get them. :)

I've been in a lot of pain. Whenever a new dose of pain medicine kicks in a bit, then I crash and sleep from exhaustion. I don't understand it, how pain alone can tire like that.

How Many Days Until What, O'Henry?

2009-12-16T20:50:00.000-08:00

I don't know if the kids' Christmas presents will get here or not--the charity was supposed to have wrapped up everything by the 15th and was supposed to have gotten back to people by now. That's the least of our concerns. We have to make choices with the money and can't pay all bills--necessities. And yet I'm wondering if we should spend some on Christmas presents--for them, not for us or anyone else. We need the wheelchair van, we need insurance and utilities. I don't like decisions like this. We have been given money--we *had* to spend it on necessities or I don't know what we would have done. No internet or phone means no job search (and there was an additional phone interview today, job email to answer throughout the day). I don't like this at all. My sister and her friends are sending a Target gift card--I'm hoping that comes through soon, though I've myself made one promise to one person I just have not been able to keep, not for lack of wanting to.

I hope I never forget this, what it's like for poor people. There's a difference in empathizing and really knowing that experience. I don't have the extended experience others have, of course. I don't like the myths that say that children do worse in poverty--maybe they have fewer experiences and chances, but I also think there can be a lot of family closeness that runs deep. I guess as a college student I saw so many studies about what goes wrong for people in poverty that we probably all lived in dread of living in poverty (oblivious of the fact that many of us were living in poverty then, those of us paying our own way and young newlyweds). But what about what goes wrong when there's wealth?

It's more complicated than that, I know--crime, drugs, lack of opportunities, certainly lack of housing and basic needs--these aren't minor issues. I just feel that as a society we've lost sight of the virtue in not having. I think we're in fear, phobia, and prejudice about being poor.

The thing is, I don't think anyone would believe us that we're poor--not many, anyway. Not just in poverty, but in crisis. People want to think that things are better than they are. One friend said she is surprised that I seem okay and to be "together"--I don't know. I do have the certainty that we'll be fine in the long term, that we have a support system that will catch us.

I am sure the charity will come through. But tenuousness. All is tenuous. I used to finish the shopping before Halloween!

Wheelchair Seating Clinic

2009-12-15T11:46:00.000-08:00

The seating specialist, vendor, and I all seem to be in agreement about what I need in a power chair ranging from tilt-in-space and recline to arm rest needs and specific dimensions and cushioning that will help. And the vendor thinks no question that it's medical necessity to have the tilt to be functional (for me to be functional, not the chair). The dimensions they came up with are exactly the dimensions I'd have specified if I ordered equipment myself on my own without help--I need a deeper cushion than most would choose for support, but I hadn't even mentioned that to them. So really, the best case scenario. We found out that my right femur is half an inch shorter than the left (I'm presuming because of the fracture with the growth plate)--but I sit in a way that makes the left leg seem a half inch longer--an inch difference from where I'd normally sit because of pelvic rotation. Plus there's the scoliosis in the low spine. I think I'd find it difficult to find comfortable seating even if I didn't have arthritis there.

Now the question is which chair would work best. I will try a few out at the vendors' soon. The whole process can take 3-6 months because of insurance wrangling (and who knows what would happen if I change insurance--though the same vendor is used for a number of insurance companies).

It looks like an air cushion may work best--this surprised me completely. We also discussed/tried other kinds of cushions. There should be some kind of elevating leg rest, but we're not sure if we can get that powered--I forgot to mention one issue with that since my scooter has an elevated platform.

So we're looking at a bunch of options from Invacare, Pride, and maybe Permobil. I am very thankful that I will get to try some of these out in person since there is just no substitute for doing that--that was certainly true of the scooters. Wish me luck--one thing I don't like about some is that they're not quite streamlined enough in terms of design, though I think the models we'd probably go with are more so, like the Permobils. As a younger female, design/aesthetics are still important to me, though function and comfort comes first.

We talked about the manual with power assist--the seating expert does not think that's a good idea. Really, I could use the tilt-in-space option/high back with a power chair a lot. I'll think about it, but I think she's right. If I were to have more degeneration over the next five years (not unlikely!) and had to have the continuing support, I would not be able to get a more costly power wheelchair (insurance only covers one every five years). Basically, I think of something like that as more of a luxury since I wouldn't have the sitting tolerance I would in a power chair--I'd have to transfer out more. While eventually when life is normal I'd like an inexpensive used but good manual as a backup, that's just not the priority right now. I am not thrilled with the headrest/very high back because I think it makes me look more disabled than I am, but functionally with the tilt in space it would keep me from straining neck/spine trying to hold my head up while tilted--even the slight tilt on my scooter can cause me upper back pain, though it's a wonderful feature to have and does relieve pain. I think I will have so much more maneuverability that I will be able to do far more for myself and will have less pain while out if properly cushioned.

I am in terrible pain now after being there this morning and back lying down--they get to see me at a relatively good point, early in the morning. It's just a huge relief that we seemed to be in such accord--and they're really nice people.

We do have a good attorney who's helping us with some of the other financial/house refinance or not issues. Lots to do, still hoping that contract comes through for my spouse quickly.

Possible Job?--Not Daring to Breathe Yet

2009-12-09T14:42:00.000-08:00

My husband said the job interview went really, really well and he knows the senior manager from his previous company. They have to interview a couple of more people so I'm still holding my breath--we've been on this roller coaster for a long time now. This would start at the beginning of January and is for a 6-month renewable contract. Let's hope for the best (and for continuing insurance--9 months left on COBRA). Congress isn't set to vote on the continuing subsidy until after the holidays--after many people will already have to drop it because of inability to pay.

Bad to Worse

2009-12-08T09:33:00.000-08:00

So we may get foreclosed on--they called today and claimed not to have any of our paperwork from forbearance. They also said we couldn't have our payments modified this month and have the past payments added on, though they had told us before that we could--starting this month. I asked if the bank hadn't recorded all the phone calls with us and if they could replay those calls; they said yes but that they couldn't pull them now. Husband has a job interview tomorrow. God, we need this!

I feel sick. Husband's going to be on the phone all day trying to figure this out, I suppose. We can probably borrow some money from family, but what's the point if we'll lose the house in a few months? Unless we can get that job--soon. Soon, soon, never soon enough.

Update: interview tomorrow, meeting with the mortgage company Thursday. Please keep us in your prayers. We need proof of income coming in. A few weeks even could make a big difference. Have been on phone with nonprofit for advice and the mortgage company, need to find an attorney who specializes in foreclosure if we can afford it. I'd say I can't take this stress but people do. What choice is there? Reaching another point of stasis is important to me, even if it's moving in with our parents. The moving process itself will be extraordinary because of disability. Security, not instability.

Too Cold!

2009-12-07T07:00:00.000-08:00

The pet mouse has been too cold, and I can tell. She's made herself a little hive from nesting materials but I can tell that's not enough. We covered the back and the top of the cage with a towel, and I was thinking of cutting a piece of fleece or flannel but realized that still wouldn't insulate her quite enough--she'd stick it under her but not on top. So I looked up "how to keep mice warm." Gloves--insulated gloves--and we did have an unmatched one, a warm one. She's cozy now, went right to it. It's a funny little house, but it works great. The other mouse we had bought to replace the ex-companion was not healthy and never did well, alas (different pet store, we should have waited for more at the other store). This one approaches like a puppy dog when I call her or make kissing noises at her!

Priorities

2009-12-05T02:32:00.000-08:00

The COBRA subsidies are ending this month, unemployment is at its highest since the Great Depression, families have lost their homes and are homeless, health care reform is debated in the Senate, there's still the war abroad, there is no food at the food pantries, seniors are going hungry because Meals on Wheel is drying up, but--

the news focus on Tiger Woods' affairs? We are stuck with tabloid journalism when the world needs change. Instead the media takes joy in putting pressure on people until they crack. Who cares?

We need change. I see Obamas's ratings are below 50%--why, because he's cleaning up someone else's mess, actually trying to help?

Food stamps have been renewed (don't know what took so long the first time) and we can order Angel Food. Satanic Insurance, Inc. is going to allow my husband to go off insurance--the subsidy will probably come through to late for him. Once you're off COBRA, you're off. My insurance will still increase from $323 to $650 because it's pro-rated for each person you add. So with the catastrophe insurance, we'll be paying $700 a month, double the current rate.

It's not just us--what will be the cost of people not having manageable illnesses treated in a timely way?

Warning: Possible Scam Targeting Disability Bloggers

2009-12-03T05:52:00.000-08:00

Please spread the word to disability bloggers (and other bloggers), just in case. I sent an email to One Sick Mother yesterday asking her to help me evaluate an unsolicited email offering a donation in exchange for an advertising link, a small internal link, which sent off warning bells.

OSM is more computer savvy than I am and suggests this link would likely virus readers' sites when they click on the blog; it could also virus your site with a fix only that company can provide. While I don't want to accuse anyone falsely, I know people's blogs can become virus transmitters in such a way. OSM also points out that the site for the company is pretty rudimentary. I know many of us are in difficult situations, but please don't.

It looks as if this particular company may target some groups of bloggers all at once--so be careful. If it sounds too good to be true, it may be.

Food pantry tomorrow

2009-12-02T22:50:00.000-08:00

We have an appointment with the Catholic food pantry tomorrow to tide us over and the food stamps people will call tomorrow, a phone appointment (permitted with disability). Friday we can call the other food pantry for an appointment for more substantial stocking up. Apparently this is the Big Mama Food Pantry for the area and all other food pantries center around it and its work. You go there every 90 days, but I don't know if you can use the others more frequently if needed.

"I'm feeling much better now," as HAL once said. Somewhat. A rapidly emptying pantry and being out of most food groups makes me anxious. Chief mama job: keep babies fed and happy.

We are juggling too many medical appointments this week, one of them lengthy--three of them around doing this, plus a bunch of other matters to take care of.

I'm remembering The Little Engine That Could--"I think I can, I think I can," and am hoping that things come together. This is hard and scary!

If you have a chance, let your representative and senator know that they should pass the COBRA subsidy extension--otherwise millions are going to have to drop insurance and risk losing coverage, especially coverage for pre-existing conditions. In the health care reform bill, pre-existing conditions will not be covered until 2013.

Just more updates

2009-12-02T08:29:00.000-08:00

Insurance agent I talked to yesterday: "How in the world are y'all making it?"

We are now $12,000 behind on our mortgage but have to start paying it again next month. With the mortgage terms redefined, I'm hoping we can get it under $1000 a month. The kids are on CHIP but my husband's and my COBRA payments go from $323 to $969 next month. My husband wants to get catastrophe only insurance at $50 a month--that leaves him with insurance portability/ability to get insurance with a new carrier. By law, I am supposed to be able to elect COBRA if my husband does not--but his insurance doesn't allow this option. We we may be having to pay twice as much as if they weren't doing this illegally (do we really have the resources to protest?--we are trying to survive). At about $1700 a month (maybe $1850 with continuing slow ebay and Amazon sales) we can't afford the house and insurance, the house and car payment and utilities. I feel like crying but I'm in such fear I can't actually do so.

Our food stamps ran out. The small food bank (you can get a few days' worth while waiting for an appointment with the big one) is closed today because of weather. The big food bank you can only go to every 90 days. I don't know when we'll get food stamps again--it took several months to get the emergency ones we should have immediately received. I'm trying to figure out whether we can get $70 for an Angel Food order by next Monday, but I hate to spend that in case we get food stamps before that. (How am I still overweight?, inactivity plus cheap food I guess.) The kids are on free breakfasts and lunches at school, so that's a help.

My husband has a job opportunity, but it is in software sales and will start off slow at best (a startup in this economy) and it may be a few months before we get a paycheck. It's anyone's guess what that will be. It also offers no insurance. So now I have to apply for disability. Normally people can continue COBRA coverage for another 18 months if they have already received a ruling from the SS administration that they're disabled. Those of us who will be on the waiting list--tough. I can get COBRA for another 9 months. Without insurance, our medical bills would probably exceed what I would make, so there's not an option. There's a two year waiting list to get Medicare once I am approved for disability. So given the one year or more wait to get disability, I may be without insurance for a few years; if there's any lapse in my coverage, I am going to be uninsurable. In other words, if my husband doesn't get a job that has insurance in the next nine months, medically I'm screwed for a long time and will not have the option of going off disability.

My husband's on the phone with a free legal aid service about bankruptcy and disability filings (bless them, I talked to the guy for a minute and he's very kind). Most "things" I don't care about, but I am worried what will happen to some belongings that are very treasured (from grandparents) and whether the people who come in to evaluate our stuff will overappraise it (couches with holes wouldn't garage sale for much; we also have tools for working of which only $1000 is exempt for each of us). I'm also worried about things being stolen from us during this process. Maybe I'm wrong, but I don't trust this process or think that appraisers would necessarily be scrupulous. So yes, there's a possibility of work/money soon, but this isn't established and in the meantime we're hitting the greatest low ever. We're receiving about 15-20 colletions calls a day.

Like so many families, we just want employment--with benefits. I received some notices about another mom whose husband died--people are taking up a collection to pay for her plumbing repair and some other needs. But she has a job and he had life insurance. I mentioned to my friend who's coordinating help that we can't help with food right now since we can't get into a food bank (we have a few things we can eat but can't squander anything), and she said that was okay, she understood. Same with a mom at the kids' school asking for donations of food for a student treat day.

It hurts to see other people getting so much help when someone becomes very ill--where was our help with housework and cleaning services after my surgeries? I'm sorry, that sounds like sour grapes. It is sour grapes and it's horrible or me to think about, to make comparisons. But my husband was and is exhausted--caring for our home, the kids, doing the errands, plus working full time--even the lawn service done by him to save money. I "need" him to do more, but how far can one person be stretched? Sometimes the house really is in shambles and I feel like we're living in piles of junk that can't be cleaned up--it's not the worst imaginable circumstance in that regard, but we need help for a garage sale for what can't be sold on ebay/amazon (we've sold a lot there). He hasn't been able to do that and everything else.

People don't understand that we're in need and I don't know how to explain. Every time I try to, someone talks about people whining too much or not being optimistic (these are people still living in very high privilege). I don't want to hear another person complain about their Christmas shopping. We're having to spend the money we were given for a few presents for the kids. We're in bad circumstances and I worry what's going to happen in the next few months--if we can get through that, I think we'll be okay. My son needs new shoes. They both need slippers. I need socks and maybe underwear. I had to ask my mom for a few shirts. I am NOT asking for money or anything, especially from those with disabilities. But my voice is one of many millions more hurting right now.

Tis the season for giving, but it's not enough and split among so many more people this year. All I want this year is a turnaround in our personal situation and for the economy/other families.

Immediate update: Our personal belongings should be fine. We thought only $15,000 was exempt--and that's easily overestimated.

Wheelchair Seating Clinic

2009-11-10T15:43:00.000-08:00

I have an appointment with the wheelchair seating place at the big elite medical center in mid-December. I love you, Dr. Rheumatologist! I think this process is new for him too, as most people just get a prescription and go to the vendor insurance recommends or directly to a vendor they know about (as I did before). So we'll see--at least getting an appropriate cushion that will fit and that relieves pain will help a lot. I have a full prescription rather than just a cushion prescription so we can do what's needed (a combination of my expertise about my body and a therapist's about chairs). He's also glad to help with forms for the service dogs. He did not realize I often cannot get out of bed by myself.

I have to see a pulmonologist before trying Enbrel (but that was the only specialist I didn't have!). Probably for the best since I have had a mild cough since September--don't want to give myself a b bad infection. Le sigh. No le torture wanted. I am having weird nail changes/finger pain due to arthritis, so dermatologist in January.

Worked it out with a few people who weren't talking to me and found out what some of their fears were with talking to me (something that never occurred to me about me looking like I needed help but not knowing if they should offer). Now I feel more comfortable at one of the kids' weekly activities.

Tired mama.

Advice? Things I should know or consider?

Service Dog Apps and Wheelchair Seating Clinic

2009-11-06T06:27:00.001-08:00

I have started the service dogs apps and met with one of the local organizations. The concern is whether I can make it through the training and whether I could be too disabled to qualify (ironic since obviously there are people with far more immediate physical limitations--but who may be able to be out more and sit up more). I really like the dogs and the training with the local organization--though I will apply to several because of the waiting lists and because I may not be accepted to all (or any). I will apply to three organizations that are local or where friends/family live with whom I can stay during training, as I can't afford the training otherwise.

I am also working on improved wheelchair seating--whether a better cushion or something more customized than the scooter--and let the service dog organizations know I am doing this, because that increases my independence and decreases pain. The process makes me want to cry in frustration, and I don't want to deal with insurance again, but I've started the process and we'll hope for the best. I didn't even know about seating clinics last time--and that's what I'm seeking a referral to this time.

I've explained to my doctor that I'm too young to be this housebound, that my husband may have to work for a year in another state on contract work (leaving me without assistance--but we can't afford two moves a year apart)--I need to do what I can to keep myself independent. Most of these jobs are temp to hire--wanting to try someone out before committing. I've told him to go for it, that we have to have ome kind of income. Besides, he is unlikely to be able to telecommute with a new job even locally, based on what's available--at least starting out. I've explained to my doctor that service dog organizations make the decisions and prioritize their waiting lists, that I'd not be taking a dog from someone else--and many of them do assign dogs to people who have lesser disabilities, even people who can walk but who need the assistance to be independent or hold a job (yes, I need that assistance to hold a job outside my home, as I'd like to do--the longer the hours, the more I need the dog, or rather, a dog will help me maximize my hours). While the waiting lists are two to five years, I am not going to get one by continuing to not apply to new places. One organization with whom I'd applied had tragedy strike (death of owner), while another I had applied to--I really liked the director and the dogs--is out of reach because we would have to fly rather than drive. I had just put everything on hold because of unemployment--even the costs of applying concerned me. No longer--it's not helping.

I have a feeling God needs me to take care of myself before He can take care of more. Right now my husband feels horrible about the idea of leaving me without help--for a workday or more generally if he has to work out-of-state on contract work. But we will figure things out somehow--we will. Even when we're upset with each other, he'll still help me to the bathroom while we're mad or get things I need but can't.

Let's hope for the best--improved seating and a working partnership and companionship from a service dog. I can get up with the help of a quad cane, for example, but often it's out of reach and sometimes it falls.

If anyone else is on the spondylitis spectrum, here's an article on someone with spondylitis who has a service dog:
http://www.abilitymagazine.com/current/animals.html

Laura Hillenbrand on Chronic Fatigue

2009-11-03T07:25:00.001-08:00

If you haven't had a chance to read Laura Hillenbrand's essay on the development of her chronic fatigue and how she managed to write Seabiscuit paragraph by paragraph, it is well worth your time to do so:
http://www.cfids-cab.org/MESA/Hillenbrand.html

New Podlett, New Doctor

2009-10-29T16:57:00.000-07:00

My new fleece Podlett came in the mail today--the first thing I've bought for myself since I can remember (before the layoff; reimbursed medical products excepted). The Podlett can be used as a wheelchair blanket and there's a pocket for your feet that comes up behind the knees. No more hypothermia on campouts and fall events and getting blankets muddy and grassy as they fall off my lap, while the back of my legs and my feet still freeze. I'll still have to wear thermal underwear when it's really cold. I love it! You could probably also fit another lightweight layer/blanket inside it if you needed.
http://www.podlett.com/
I bought this with our ebay money--maybe I shouldn't have, but I would have to stay at home a lot otherwise. The scooter wheels do not like blankets, and I can't steer and hold one in place. It will be used--at home too. On last year's annual campout I got hypothermia quickly and could not get completely warm the whole weekend. This time, I sweat in my long johns on the way down rather than waiting to change, and the Podlett will be on immediately and can be used in the tent. My husband will also go down earlier with someone else to set up the tent and start a fire.

The new doctor/internist: I like her a lot. The door in her office was hung on the wrong end of the door frame so it's *very* difficult to get in and out of the patient room because it can't be opened all the way--wondering if I should suggest that this be moved to the other part of the door frame. Yes, we called first.

High pain/going. I will catch up on emails to several of you soon.

On Disability and Rudeness

2009-10-28T20:31:00.000-07:00

I feel like I am Sappho without the poetry, writing in fragments. I'm adding to and posting several bits at once, though now I'm behind on correspondence! This is a piece that I started before my daughter came home ill from school a few weeks ago:

"Hands off me, creepy guy at Starbucks, before I karate chop your man bits," a female friend of mine wrote recently, recollecting a moment with an overly flirtatious stranger. She only thought this and did not say anything in person; women have often been taught to be polite to people who are invading our space or our privacy. Women who are disabled often experience additional sticky terrain and unwanted confrontations. Men with disabilities also experience many of the same difficult interactions.

Putting aside gender for a moment, when disability is involved, the rudeness of others is often deflected back onto us--we are considered rude for not complying with the rude behaviors of others or for requesting our rights. I've seen myself expected to answer personal questions that I'd rather not answer--in front of family members. I know that not answering, no matter how gently I aver, would be taken as rude; it's a break in the back-and-forth of conversation, a refusal to interact. Assertion can be double-edged--if we speak up for ourselves, we make it less likely for that person to do the same to others, but this does not help interactions. Even though Miss Manners does tell people not to ask questions or invade our space, they do. In a nutshell, we are considered the rude ones for not answering nosy questions, for defending our personal space or bodily autonomy, or for making requests for accommodation for others. Sometimes we are considered rude for existing, for being in the way, our bodies regarded as physical obstacles, nevermind that people who use grocery carts or baby strollers, also assistive devices, occupy the same space.

Take the examples of Wheelie Catholic, who has been repeatedly rammed into with a grocery cart because someone is annoyed with her existence and Laurie Clements Lambeth, a poet with multiple sclerosis who must claim her space in the store. And Katja at Broken Clay, who was recently denied a comfortable theater seat by someone reading the signage so strictly that she would not move over one seat for Katja and her husband. By refusing to move because Katja did not state her requests "properly" and did not give the full explanation requested, this woman was able to see her own act of unkindness as righteous and could ignore the physical and social discomfort of another person without guilt or a sense of wrongdoing.

I don't understand why kindness goes away, why we are treated as lesser or our lives seen as not worthwhile. In a more extreme example, when my grandfather died, within an hour or two a stream of visitors showed up to my grandparents' home. So many people said that he was in a better place, which accorded with my grandmother's beliefs but isn't much comfort during immediate grief. But they also said that he was suffering so much, had suffered so much, had been so ill and so housebound, and now that he's better off. They said this in front of me. It made me feel like they thought I should die. I don't agree with this rudeness--it was not comforting at all. He wanted to live and had even changed his mind about his advance directives. He wanted to live! Even at the end, he preferred life as long as he could, despite pain that made him restless and made him grimace and close his eyes tight. What a view of disability people have. The church woman who leaned over his bed, telling him to "let go, just let go"--that wasn't her place. He was disabled. I am disabled. People said he never complained or mentioned his pain. They just didn't listen. They don't listen to us.

How do we protect ourselves without obscuring our point? How do we respond to others--or not respond to them, without becoming doormats or being labeled as bitches? I don't have the answer, only the thought, again, that others project their rudeness onto us if we don't accept what they say.

Denied, A New Book

2009-10-28T19:51:00.000-07:00

The photos in the short book Denied (linked below and discovered in New Mobility) show the life-changing effects of good versus poor wheelchair seating and explain the Medicare in-home restriction, which insurance companies also adopt:
http://www.blurb.com/books/869705

See the text of HR 3184 at:
http://www.opencongress.org/bill/111-h3184/text

What I Want to Write to Abled People But Don't

2009-10-28T12:51:00.000-07:00

Personal updates to follow at end.

How do you talk to a disabled person?

Twice this week, two people who were listening to me talk about the social changes that coincide with disability told me that people just don't know how to talk to someone in a wheelchair. Now one of these people, a friend, certainly talks to me and the other person works with a service dog group, so they don't mean themselves. I've found what they said to be true. My suggestion is to at least try, because often you'll be the only person who does. This is often more damaging to my children than to me. Converse with me as you would with anyone--about the kids' school or activities, education, politics, the arts, travel, our children, the odd weather, upcoming holidays, disability issues, health care reform. If you don't know me, make the same small talk with me as you would with anyone. If you already know me, I'm truly the same person. If you're feeling awkward about wheelchair use, work on overcoming that; I don't feel awkward about it at all but I do sometimes feel absolutely unwelcome when you won't make eye contact, say hello, or speak to me anymore. If you're so concerned that you'll be rude that you'll freeze up, here are some suggestions, most of which have little to do with what you say and more with safety or manners:

-Don't race me to the elevator, jump on, and let the doors close before I can get on. Don't offer to hold the heavy glass door for me and then let it slam hard on me. Don't illegally hog up all the disabled parking at the school without a permit. Don't make your child get up when she tries to sit next to my kids. See, you're nicer than that--what do you have to worry about?

-When my eyes open wide with fear, like this -- OO -- back away slowly. *Please* do not tear up my wheelchair or allow your kids to do so. I cannot protect myself and often can't move out of the way quickly.

-This one's tricky. Don't stare and point--I will stare and point back. But don't avoid talking to me and looking at me. It's very weird and lonely to sit next to people for an hour or hour and a half and not have them look at or speak to you.

-Don't squeeze past like Borat! Please be aware that your rear end or crotch is at my eye level--Nancy Mairs was being polite when she wrote "Waist High in the World." Please give me time to move or go around and be aware that you can cause me a lot of pain if you force your body between my wheelchair and a wall, push me in the back, etc.

-Please do ask if it looks like I need help with something--I'm reluctant to ask because of people who have snapped but I may need assistance. But please accept if I say no--I may want to push an automatic door opener myself so it doesn't close on me when I'm halfway through and trap me between double doors--again, I can be injured if you try to push me in the back to "help" me over a bump, I can't get my chair off the lift if you overtighten the hooks, etc.

-Don't hit me in the head with your shopping bag or backpack or prevent me from moving or seeing by placing yourself or objects in front of me. Give me time to move or go around.

-If you have placed a long scratch on or dent my wheelchair, especially intentionally (and squeezing past rather than going one step around is intentional), you might consider parking your car far, far away from the disability parking. My wheelchair is part of my physical appearance and I like it the way it is.

-Please do not ask me or my friends what's "wrong" with me. Please do not dig for details so you can tell me how I need to fix it, especially if we've just met. Don't whisper "acupuncture" at me every time I roll by. Chances are that I've tried everything, alternative and traditional, that won't harm me and have invested huge amounts of money and time into it, to little end. Please accept the way I am. If we know each other well, you can ask/discuss more privately, but please protect my medical privacy if I entrust you with it.

-Please do not test my reflexes and electromagnetic braking by hurling your body in front of me. I could end up in a wheelchair (joke recalled from Wheelchair Kamikaze).

-I don't want to find out what cartwheeling backwards on a ramp is like, so don't play with the anti-tip wheels on the back--they are not calling your name, nor your kids'. Don't climb over my lap, lean on the scooter, or climb over into the front end to get by. I am not your footrest. Please do not scratch up the paint, whirl me around in my seat, or pat me on the head.

-Unless you're a close friend or family, don't feel up my wheelchair, rubbing your hands all over the hand controls and seat back, even if I'm not sitting in it (this happened a lot at the hospital ICU, with church members and families of other patients--they did not listen when I asked them to stop). I am going to be dragging out the Purell when I get home, not from OCD (that's CDO alphabetized), but because I don't want pneumonia again. Trying out the scooter is by special permission. I don't run up to the chair you're sitting in and start pulling on or caressing it.

-Even if I demur, I love compliments ("what, this old wheelchair?") and people who are positive. Please don't make jokes about my wheelchair unless you can be original (speeding ticket and beeping noises, not so much). But again, don't make fun of me. I am as much a nerd about wheelchair use as about everything else and will be quick to bore you with technical specifications if you show interest.

-No, I don't know that other wheelchair or scooter user who always drives in the street. Unless it was me because of a lack of curb cuts at the hospital/medical complex. Yes, I know you were almost in a wheelchair once. So was I. :)

Most of these are pretty obvious and people adopt them easily when they know.

Miss Manners covers this better than I do--she's a liberal and very feminist (start one page back; she discusses visual impairments in the next section and then has another section on wheelchair use).

This lacks a nice wrap-up, but that sums up my life right now. I originally wrote this in a more neutral tone but switched to a more humorous tone (I hope it sounds this way rather than sarcastic)--I think some people are so worried about making mistakes when talking to disabled people that they won't try.

Personal updates:
I have been writing some but not as much, not getting around to final editing and posting because of fatigue and pain or other things that must be done when I'm not fatigued or in pain. We have been at a truce in our household, thank God (though it's not really an equal truce--"he's decided" that it's not fair to ask that much of me when I'm in very severe pain or ill). I talked to an assistance dog organization last week and get to meet with the dogs next week--this really good organization typically helps veterans, but they do take applications from others and have graduated some non-vets. I had dropped the application process because I can't afford the couple of weeks' hotel and other travel expenses. Two other state organizations are now defunct and one requires financial commitments and fundraising. I also found a new primary care doctor who is highly recommended--and only five minutes away. This will be a lot easier logistically, in terms of fatigue when I'm sick, etc. She is a mom to two boys and wants to keep a small, unrushed practice--she has just one assistant and plenty of time for people, my friend says. My last doctor's religious beliefs sometimes caused problems in our interactions and with my friends' interactions with him; I am hoping this doctor's do not.

Grandfather Passed Away

2009-10-04T19:19:00.000-07:00

My grandfather passed away this morning at 11:00 with as many family members who could get there quickly enough there--I rubbed his head and Grandma and my aunt held him while my uncle and church members said prayers and words of encouragement. The hospice workers were wonderful.

Going Crazy

2009-09-29T19:27:00.000-07:00

Warning--skip this rambling rant if illogical rants get to you. I feel like I am about to drop into an abyss right now. Family members' ostracism of a cousin is bringing back bad memories of my own experience of being "disowned" for getting engaged (family truly believed my sister and I were property) and the aftermath of being excluded until the past few years. I reached out to her to offer a listening ear, others found out about it, and now they're all infuriated with me. I guess because I'm not picking on her like a fish ripping the fins off the unchosen one in the aquarium. My sister and I were abused as kids and I can barely talk about it. But a big "fuck you" to Frida for being nice to her, to someone who was badly abused as a child, kicked out as soon as she turned 18, and had so few skills that she had to live out of cars and steal to survive and feed her babies (could not survive on minimum wage alone).

People took my mother aside today, talked shit about me, and told her to call me so that I could be told what I needed to think. Yeah, Frida, rip people's fins off like everyone else! No, my mom didn't participate as they expected and instructed.

I'm upset everyone's bothered my grandmother with all this crap (let's call it what it is) right now. This is not a good idea since she had a mental breakdown and had to be hospitalized after her mother died and I don't think things are going well. My grandmother has, though, continued to participate in the shunning of this cousin. I'm tired of people's racism, prejudice, unfairness to each other, gossip, and just plain negativity. No one seems to have anything positive to say about any family member (and yes, I fully understand the irony that I'm complaining right now). If people are there at their house, they're annoyed. If they're not there, they're also annoyed about that. They're nice to church people and visitors but let themselves get so exhausted by that they take it out on everyone else. Whether you're helping or not helping, you're just wrong, wrong, wrong. There's just no way to win. It's your responsibility to call and others shouldn't have to call you to help, but call to help and you're interfering and taking up others' time. They're gossiping about my mother to me. Oh, no, she has to work (she and my dad are barely keeping a roof over their heads). They're gossiping about my great-uncle to me (oh no, he's there for them). About my sister. I just feel sick about it. I don't respond to it. But I feel sickened by it.

They're using my developmentally disabled uncle like a pawn.

My husband's upset with me because I can't "put out" twice weekly because of extreme pain right now and I'm ready to say to hell with it at all and move with the kids to my sisters' (this arrangement has been agreed on by everyone already--no illegal moving across state lines with kids). I am stressed out enough to feel like I can't unwind at all. I feel sick at my stomach. He's been emailing my friends. Nothing else that I do matters if I can't meet that one need, which he can't meet himself. I feel reduced to a biological function. He's saying I shouldn't have gone to the gardens this weekend because I can't meet my "responsibility." This is not an atypical argument for us. I think this verges on abusive but hey, I'm just one opinion that doesn't count for anything anyway. As a near autistic himself, he's always been lacking in the empathy/other points-of-view department. Like why my friend might want me to get her a birthday present for her birthday party.

Two of my son's three teachers have not been responding to phone calls and emails with brief questions that we desperately need the answers to. One gave him a behavior mark because we turned a signed paper into his weekly signed-papers folder rather than his homework folder (no specific instructions were given for how to return it). Other crap crap crap with them. I have not done anything to them or said anything rude to them.

I can't get my own crap done.

I hate my goddamned life.

"New" Wheelie Friend

2009-09-26T21:44:00.001-07:00

I have a new wheelie friend today--she's new to me as a wheelie, but not new to me as a friend. My second cousin, herself a twin, whom I mentioned a while back, has arachnoiditis and uses a manual wheelchair when she's out and a small scooter at home since she can't power herself. She's so tiny her husband can carry her and her manual wheelchair up the steps into my grandmother's house. I will never be that tiny even if I were very, very thin. It's not the tininess I'm jealous of, but rather the ability to get herself inside in her chair.

When I visit others, I can't get my scooter in. So often I can't attend or must sit in one spot, or I must build in some real "suffer time" for recovery later from being unable to use the scooter or sit comfortably. And yet some people's perceptions of me can be that I'm not very disabled (because they've never seen me using a wheelchair or scooter), or that I'm lazy (not getting up = "giving in," "not fighting it"). Very close relatives--my husband's sister and grandmother, friends we've known for many years whom we see regularly (well, I'm absent a lot) have never seen me use it. Since I can get around my own home well, it really bothered me that my mother-in-law refused to have my own son's (!) and my husband's birthdays here, even though we have the space. I run into this kind of thing a lot. (We can get the smaller scooter in but I have trouble sitting in it for long--transferring in and out multiple times also increases pain unendurably).

Here's an argument for universal design--everywhere. Disability cuts us off from family and friends first. Often I can go to public places for a while but can't go to others' homes because the pain of getting around without the scooter is too much. I can't go out to the pool area where everyone else is, or up to a game room, etc. I can't carry portable ramps in dozens of possible configurations--and thresholds are still a problem. Even when I walk to get in, big steps or a series of steps are a huge problem. I can't gather in the kitchen with everyone else because I can't stand up long and hard chairs hurt--very badly, even with a cushion.

Seeing my cousin's level of disability makes mine seem like a walk in the park--no, a jog in the park--in comparison. It was strange seeing myself looking as if I have high energy compared to someone else my age. She's on a lot of pain medicines, speaks slowly from that and pain, has trouble with word retrieval, etc. She's rarely able to leave home at all. Arachnoiditis causes severe nerve pain, and she has tremors when she tries to hold something. She had questions about wheelchair lifts and vans, and we compared a lot of notes about household assistance (from husbands--hers also helps a lot), how our children cope, and how people react. I'm glad that we both will have each other to talk to.

Staying Gluten Free

2009-09-25T12:24:00.001-07:00

Gluten-free is not as difficult as one would think--definitely not as difficult as ten years ago, when I was first diagnosed with wheat allergy and threw in the towel pretty quickly. Dealing with the symptoms from eating wheat was easier than dealing with lack of alternate products; and what there was tasted "dog foody." You do get used to it quickly, definitely within thirty days, though I advise stocking up on some items if you don't have a specialty grocery close. Even WalMart now carries gluten free pasta at a lower price than specialty stores, several gluten free cereals, and the new Betty Crocker mixes. Another local grocery carries Bob's Red Mill flour and mixes. Items such as pancakes and muffins can be made in advance and frozen to save time. I do miss the occasional bagel--the alternates I tried were awful, but most everything else is great. Some products are far better. Some great finds: Mary's "Gone" Crackers, Glutino breakfast bars and plain and vegetable crackers (great with hummus or cheese), Erewhon rice cereal, Betty Crocker cake mix for birthday or company. Bob's Red Mill website carries a lot of recipes, and you can also use standard recipes, substituting the GF flour and add xanthum gum (sold in a package) for binding. The pizza crust we made was superb. I don't eat rolls/breads except sandwich bread for sandwiches or toast--I miss eating these occasionally but had mostly been skipping these anyway to save calories. We have made muffins--pumpkin and blueberry. We once made cornbread, but I need to find another recipe. Oh, yeah--Tasty Bites Indian Food for something fast. The tikka masala is pretty good, and GF.

I have remained gluten-free for three months, with two small exceptions. I accidentally ingested some in artificial crab meat and was sick in thirty minutes; my daughter ate the same food but was not sick. I researched the ingredients on the web (the ingredients for artificial crab meat are not listed!), and yep, wheat. Then a week and a half ago, frustrated by time constraints, sharing the van, and trying to visit my grandfather before picking up my son for a long appointment and convincing myself this was just a big bother, I ate some regular pasta and a roll. Result: major psoriasis outbreak, nail pitting, a little more hair loss. I am allergic to wheat but ate it anyway for many years (just 2 on a 4 point scale, mild). Regardless of whether gluten causes my health problems, wheat clearly contributes. To go wheat free, one must use gluten free products. So I'm staying on this diet. I wish I had known this years ago as a teen with self esteem issues (and severe itching) from psoriasis.

I don't regret my "experiment," as now I know for sure. Some of my GI issues have been a lot better too--whether that relief is from eliminating wheat or gluten, I don't know, but either way, I'm glad to have some relief in that regard.

With careful food shopping, we've been saving so much on other foods that I don't mind the extra we're spending here. My arthritis pain has often been better--to the point that I haven't scheduled an appointment with the wheelchair seating specialist because my scooter is doing its job again! I won't hesitate if I get another bad flare at this point (as in May and June), but for now...I will keep my fingers crossed. I can't sit in it all day, but I am not in agony just from going to one of the kids' activities and back home. My thoracic spine is killing me, but that is my own fault for moving improperly--well, it wasn't intentional to hurt myself, but hopefully this will go away soon.

Good news: I was told after my son's recent OT evaluation that he's now average or above average in most motor skills, so does not need OT now. That is good since I was worried about him missing school or his grades dropping from being too tired from doing one more thing a few times a week. He does need some downtime! He does not need to see the autism specialist for another year.

Bird's got an after-school orchestra party and her first volleyball scrimmage tonight. 3 of the girls she already knows, and I think this team will work much better! It wasn't just the disability issues with the other team--some of the players would chide others for missing a volley (causing my daughter to lose concentration and not do as well) and one repeatedly argued with the ref!--a 10-year-old, almost causing us to have to forfeit a game. I think we've got a sweet bunch.

I've actually been spending less time at my grandparents' this week--they're having so many people drop by that they're worn out from the company. I think my grandmother feels she needs to entertain people, while she really needs to go nap. She normally needs to, and she's been under a lot of stress. We've sent over several meals and kept visits short. My grandfather actually eats pretty good meals at dinner and we've been trying to make some of the things he really likes--salmon, hamburgers, spaghetti. Not culinary masterpieces, but food he enjoys and has asked about.

"Help Crippled Children" ??

2009-09-21T13:31:00.000-07:00

On Saturday my family escaped to a large local craft festival for a few hours before visiting my husband's grandmother and making two dinners simultaneously, one to send over to my grandparents, aunt, uncle, and cousin, and one for us and my parents and sister here. After navigating some sidewalks with some terrifyingly steep dropoffs and finally finding a panic-inducing series of steep ramps to descend into the square, we found all kinds of lovely crafts and handmade items. We can't make purchases right now, but we could feast our eyes and enjoy being out after some recent bad weather and too much time in--there were dichronic glass necklaces, candles that smelled like sugar cookies or chocolate, some nice silk cosmetic bags for travel, reversible bags and aprons, beautiful scarves--any of which would make wonderful gifts. We did get some kettle corn for the kids. It was good to be out for a while--not so long I put myself in bad pain, though I definitely had to use the scooter in the kitchen later. I keep hoping to run into someone from a very local assistance dog organization (I think they're housed downtown there) but haven't yet.

As we made our way through the booths, we saw a couple of Shriners with buckets collecting money. I was shocked that the sign said, "Help Crippled Children." I'm pretty sure the shock registered on my face. The kids asked questions, so I explained. Later, at multiple intersections, we saw other Shriners collecting--these buckets read "Help Crippled and Burned Children." I have to say when I was a patient, I never considered myself crippled (even when I used a wheelchair, walker, crutches, and cane over time) and am not sure how my son feels if/when he makes the connection between this group and the hospital he will go to for evaluation. I have referred to myself jokingly an adult as a "crip" or "angry gimp." But honestly, I feel confused by but don't really like the term "crippled" in this particular context. It does make it more clear what kind of disabilities they treat (orthopedic). But do other people then pick it up? I just felt a stab of pain about it. To me they are trying to evoke pity with their particular use of the term. Does using "crippled" rather than "disabled" net them more funds?

As a friend who is doing a nursing rotation at the local Shriner's hospital pointed out, not only is the medical care free, but insurance does not dictate that patients must leave before they are ready, turn down necessary procedures, and nurses don't have to over-monitor medical supplies. All of these things are good. Co-pays and coinsurance even for those who have insurance can be financially devastating for people whose children require multiple surgeries or frequent casting or bracing, as can the loss of one parent's income to caregiving, home and vehicle modifications, and costs that insurance will not pay for at all (minor to major DME and personalized equipment needs, nursing care, etc.). Yet a part of me as a child felt "weird" about Shriner's versus my orthopedic visits, like I and others were set apart or marked in some way as different, pitiable or wrong. Perhaps my impression now is tinged by my pre-teen resistance to other people messing with my body, not feeling I had control over what happened within my body or what happened to it.

The work they do is good, and maybe I'm overthinking this, but I just didn't like it as a child when people would treat me with pity rather than as an equal--I don't like it now, either.

Hospice Care for Grandfather

2009-09-15T21:55:00.000-07:00

My grandfather finally got the results of the needle biopsy back yesterday: lung cancer. And yesterday finally got the tumors on his elbow/arm biopsied: metastasized lung cancer. He'd had x-rays, sono, all kinds of stuff, and had been told those additional tumors were just hematomas from sitting in his chair. I don't think so--his elbow had been double its normal size, and he doesn't sit that still. I think we've all known where this was headed when he started coughing up blood and had a spot on his lung. He's already developed a new spot on his head.

So he's been told he has about two months to live. He's been told he will have to move into a nursing home because of the care required, but none of us, not one, want that to happen and are trying to find out more information about getting hospice care at home. A lot can be done by all of us in shifts, though we can't administer IV medication when that time comes and stronger family members will have to help with restroom needs.

I don't like any of this and am in a probably immature "why do people have to die?" frame of mind. My dad disowned me when I was in college; he was so violent that I had to call the police and was afraid he would kill me. My grandparents acted as my parents for many years, and I feel very close to them. They gave me a lot of support, came to visit me in college and graduate school, gave me a lot of encouragement, invited me over for to visit them during the holidays when my own parents wouldn't, celebrated my birthday when no one else did, welcomed my daughter--on my grandmother's birthday, no less. I don't know what else to say except I am not sure how I would have continued living at times without their support.

I'm trying to shore up for what's to come. And realizing that I've got to keep things as normal as possible while balancing that with not shielding my children or making them afraid. My son has 2 grades that are 89's on his progress report, but I think that would have been higher without all the shuttling around after school and me being gone some in the evenings or weekends. This is quite a different problem from first grade, where he was failing classes. I had been tutoring him in math, and his average is now a 99 there. He's picked up violin this year too at school but it's hard to get him to practice when something is unfamiliar. At first the positioning and plucking were difficult but he practiced readily once he got that down; now he's working with the bow rather than just plucking. I think he's such a perfectionist he doesn't like mistake after mistake as he learns. It is neat to see him master this, though, getting better after 15 minutes of trying.

I am feeling sick at my stomach about the job issue. The interviews did not pan out, though it really looked like one would. He was told they would call back for one more interview, and that one had gone well--but they never did. Now there are very few jobs for him to apply to, though there was a wave of them about six to eight weeks ago.

I hope everything improves soon.

Using Gates' Disability to Discredit Obama

2009-09-14T08:56:00.000-07:00

Today's post by Lene of The Seated View confronts the comparisons people are making between Hitler and Obama. Reading her post, I am reminded of an email my tea-party giving attorney "friend" sent me, using a photograph of Gates navigating some steps with his cane while holding onto the arm of another person; Obama is a step ahead and looking forward. I ignored the email at the time, though I realize I missed an opportunity to educate (her) and to share this with others. Conservatives have certainly never as individuals or as a collective advocated for our rights and needs. Here's the email:

July 31, 2009
Obama's revealing body language (updated and expanded))
Thomas Lifson
This picture truly is worth at least a thousand words.

I am stunned that the official White House Blog published this picture and that it is in the public domain. The body language is most revealing.

Sergeant Crowley, the sole class act in this trio, helps the handicapped Professor Gates down the stairs, while Barack Obama, heedless of the infirmities of his friend and fellow victim of self-defined racial profiling, strides ahead on his own. So who is compassionate? And who is so self-involved and arrogant that he is oblivious?

In my own dealings with the wealthy and powerful, I have always found that the way to quickly capture the moral essence of a person is to watch how they treat those who are less powerful. Do they understand that the others are also human beings with feelings? Especially when they think nobody is looking.

Hat tip: Rick Richman Update from Thomas Lifson:
I think this photo constitutes another major Obama blunder.

As some AT commentators point out, this picture becomes a metaphor for ObamaCare. The elderly are left in the back, with only the kindness of the Crowleys of the world, the stand up guys, to depend on. The government has other priorities.

One of the major subtexts of the health care debate involves the public's fear of indifferent, powerful bureaucrats ruling their lives. It is one thing to wait in line at the DMV to find out which other line you should wait in, in order to begin the process of waiting for multiple bureaucrats to go through the motions of processing your request. I have spent entire afternoons going through this process.

But when we get to health care, waiting often means enduring pain and dysfunction longer than necessary, sometimes a worsening of the condition, and sometimes death.

That's why I think this image will have genuine resonance. It captures something that older Americans in particular can relate to. The President presses ahead with a program that will tell them to take painkillers instead of getting that artificial hip.

At every stage of the entire Gates affair, Obama has provided a revealing tell. The "acted stupidly" blunder revealed that he automatically blames the police and thinks they really are stupid to begin with. It didn't trigger a single alarm bell in his mind as he figured out what to say.

Then, the non-apology apology revealed an arrogant man who
cannot do what honest people do: admit it when they make a mistake.

Now at stage three, the beer photo op looked OK. It didn't turn into a disaster.

But then in a small moment that nobody in the White House had the brains to understand, Obama goes and send a body language message like this. I think he is going to get deeper and deeper into trouble. He is no longer repeating the familiar scripts dreamed up for the campaign. He was a master performer.

But when he goes improv, as a president must do, he lets his true character show. This helps widen the level of doubt that Obama is the same guy a majority voted for. Those doubts can only grow.

Andrew McCarthy has assembled an overwhelming case that Obama has lied about who he is. I predict that more and more Americans will become open to the argument that they have been had by a sophisticated and ruthless effort to foist a phony on America. Page Printed from: http://www.americanthinker.com/blog/2009/07/obamas_revealing_body_language.html
at July 31, 2009 - 04:59:44 PM EDT

I have never known a conservative who is not a relative or a very close friend to offer me assistance in the ways this email suggests, not that we know if Gates needs or wants help beyond what he is getting; in fact, I've had some conservatives abandon me mid-field trip and leave me in a dangerous situation. Most conservatives never offer me help where I very obviously need it (such as waiting for a door or not being able to reach overhead; someone also let a glass door slam on me in my scooter last weekend rather than continue to hold it), or even in their own homes. The woman who sent me this email certainly has never done anything to allow me accessibility in her home or more comfort within it, and in fact chooses to make fun of those who do request accommodations (see the tea party post). Conservatives do not care about accessibility either privately or publicly, whether I can attend events or must stay home. They do not care about my health or how I am doing. I have been told by this person that she always changes the subject (which I've noticed) when it's about "health" (read "disability"). This common kind of attitude is dismissive of others' experiences and the important social and legislative aspects of disability that apply to a lot of people. No wonder people don't understand why my friend who's been through chemo for cancer just after surviving a near-fatal heart infection can't make it to events or help as much and don't understand the day after she's had chemo why she's sick. No wonder this woman can make such conclusions about other people and about universal health care, also deciding, in her words, that I feel sorry for myself. The irony here is that she obviously expects people to feel sorry for Gates.

My husband and daughter both said "no" and looked shocked when I asked them if I ever felt sorry for myself. People who have not known me from childhood don't realize that none of this is new for me; I found myself having to comfort other people about wheelchair/scooter use, which was really strange since it didn't bother me. I do get tired of being repeatedly cursed at in public (especially in front of the kids), lack of access in buildings, refusal to provide service, etc., but observing and commenting on these things is not self-victimization--these issues affect all disabled people and should change. These things are what make disability difficult, not the actual health issues. When one person asked, "why you?", I've responded, "why not me?" While I'd gladly accept better health, I am not going to waste energies on wishing for the impossible that can be put to better use.

More Thoughts on Advance Directives

2009-09-14T06:59:00.001-07:00

Wisely, my grandmother never showed her medical power of attorney or my grandfather's advance directive to the hospital, recognizing that didn't need to be done yet. Had this been given to the doctor before his biopsy, he would now not be with us, even though intubation would have been temporary. I am saying this to people with disabilities now: if you give staff an advance directive saying you don't want to be revived if you're deemed to be terminal, that may end your life years and years before your time, even for younger people.

I was surprised that my grandfather had said, "no tubes," including trach, before, because a tracheostomy is not a fate worse than death. It is a shame to me that end-stage COPD patients are not told this is where they're headed and generally a decision will have to be made. When they are told about trachs, they're not given much information about it. I looked up and printed information for my grandmother on hospice (including at-home hospice), the forms of ventilation, pictures of what a trach looks like (on my friend), and how it works/the care that's needed. While I understood where things were headed, that doesn't mean they can hear it from me or would think I would understand.

I am equally surprised that he changed his mind when he was in the moment. My aunt kept saying over and over that he had always said he didn't want "tubes," overlooking what he was saying at the time. She also did not think he should be informed about the choice or asked--which is just not ethical. I think her unconscious motivation is that she's doing a lot of the caregiving and would continue to do so and she is exhausted, exhausted by sitting in the ICU with my grandmother 11 hours a day, driving my uncle to and from work and taking care of some household needs when she's not.

The doctor also asked my grandmother if she was sure, and she told the doctor, "ask him," and pointed to my grandfather, and he did. I think in ICU they have so many patients who cannot speak for themselves that sometimes doctors and nurses forget when they can--and that's terrible. I can see that someone's rights can disappear in an instant just because it's more difficult for them to communicate.

Thanks to Yanub and OSM for your comments the other night--they were extremely helpful. You were right; why were they discussing what he said in his living will when he was still lucid? Why did the nurse tell my grandmother she had some difficult decisions to make when my grandfather could speak (albeit he had difficulty making himself understood on that oxygen mask and with his dentures slipping, but he could communicate that much).

I also don't understand why physicians don't communicate more clearly about trachs, how they work, and the care required. I imagine that many more people might opt in if they understood, while others might choose otherwise. I had to explain to my sister later why he was making this decision because she did not understand and I could sense that she was aghast when my mother phoned her. To her, if not to most, life support means indefinite survival on a respirator in the hospital while unconscious.

Most of all what surprises me is how simple many advance directives are--a couple of yes/no check boxes only on my grandparents'. My own decision making would be a lot more complex and have a lot more conditionals than that. Here is a sample of an advance directive from the American Academy of Family Physicians that has a few more choices than some advance directives:
http://www.aafp.org/afp/990201ap/617.html
Check the language on artificial nutrition/hydration, for example:

I do not want artificial nutrition and hydration started if they would be the main treatments keeping me alive. If artificial nutrition and hydration are started, I want them stopped.

I don't know that I would refuse a feeding tube or rehydration if I could not take food in by other means, though I'd probably not want that not be done if I were not conscious or aware, having to be tied down, and would not live long. But dehydration or starvation would be horrible ways to go. There are children and adults walking around with feeding tubes, so I can't say I'd want to end life on that basis alone. I've seen someone express that she would, though. I wouldn't want to be intubated indefinitely but I really don't think that I'd turn down a trach.

There's just so much gray area between those fill-in-the-blanks! And what do people consider terminal, and at what point?

Disabled Scooter Users Ticketed?

2009-09-13T08:53:00.001-07:00

It amazes me when local or state legislators and individual business owners think they can bypass federal legislation such as ADA and prohibit people from public access. Mobility scooters and wheelchairs that fit certain dimensions are both covered by ADA (and most do fit; I gather the reason others don't is not exclusionary but simply that they won't have the same tight turning radius, there's a limit to what will fit on a bus lift or what can be lifted, etc.).

But in Florida, it's illegal to ride scooters on the street or sidewalk, though Segways are allowed. And now one man has been ticketed:
http://www.heraldtribune.com/article/20090830/COLUMNIST/908301064?Title=LYONS-Scooter-ticket-shows-law-could-use-update
While the author suggests that such tickets should be banned, a sheriff's department spokeswoman said officers can't be instructed not to enforce laws. Discrimination such as this ticket is already banned under ADA, which allows people with disabilities public access. ADA is a law that is in effect in Sarasota. It's a law in place to prevent such discrimination, and simply making more laws in an attempt to bypass it is not legal. It's the Florida lawmakers and police officers who are breaking the law, not the scooter user.

Things Going Better Again

2009-09-12T13:14:00.000-07:00

To my surprise (shock?), my grandfather was back off the oxygen mask this morning, eating fine on his own, and talking well. So he was able to say exactly what he wanted and didn't want in very clear terms. This makes it much easier for everyone. What annoys me is that the nurse wrote in his chart last night that he did not want to be intubated again at all and that is absolutely untrue. They are considering a trach and hospice, intubation if needed for a while again briefly. The nurse had no right to do that, and no one said that to her.

We may be on this roller coaster a while until a point of stasis is achieved or if he passes away soon. He has strong willpower! That's good--it's gotten him very far in his life and allowed him to be healthy and strong as long as possible.

Anyway, it is good that he can express what he wants very clearly and others don't have to make that decision right now. My grandmother is fine with his decision, and that's what counts.

My grandmother is wearing herself down, insisting on being at the hospital 15 hours a day.

Now my husband's grandmother was hospitalized this morning with COPD too, at a different hospital, but not in ICU. Everything at once!

Difficult Decisions

2009-09-11T20:07:00.001-07:00

My grandfather has taken a turn for the worse again today and is back on some kind of pressurized oxygen mask rather than just the cannula. He is alert and as intelligent as always in his life. He has a living will and did not want to be intubated at the end of his life, but right now he's conscious and cannot breathe well at all. His O2 rate drops to under 90% within 30 seconds when it's removed briefly for him to try to eat a bite. If an emergency happens, does he want to be intubated again? Right now, his answer is yes. That's what he told my grandmother tonight. Others think his living will should stand as is, for him to go naturally, even if that's not what he's currently saying. I'm staying out of this and leaving this to my grandmother and his children and him. I thought the will stood as it was. I feel torn several directions.

I can't say he's irrational at all. He is clear-headed. Honestly, I understand. He loves his family and loves living.

Everything changes when people are in medical crisis rather than hypothesizing about it. I'm told Elizabeth Kubler Ross made some changes to her beliefs at the end of her life. Yes, he cannot live indefinitely but he loves life. How when someone can't breathe can you tell them no, that they won't be intubated again?

Another option is that he could get a tracheostomy and be put in hospice at home. I don't know that he would survive that procedure, would survive full sedation--he's not been able to have needed surgeries because of the risks to him. My friend lives with a tracheostomy, but she is much younger, my age.

This is heartbreaking. It feels like killing someone to deny a trach. People can live with them, though I don't know how much time he'd have without. He lives at home with my grandmother and uncle and is not faded at all, sharp and bright. I don't know what to say, what to think right now. I know disability is okay. I know this. I know trachs (as opposed to intubation where your hands are tied down and you can't speak) are okay. But what would that procedure do to him if a needle biopsy did this? Not giving him air feels like murder. And yet if a trach didn't go well I wouldn't want him to be in agony from that.

He loves my son dearly--I am told if he has a favorite that it's my son--and he hadn't been able to see him in a few weeks. I wish they could see each other again, just once, but those nurses are being strict about no under-12. Yes, my daughter's been in to see him many times. She's okay with this, really okay with this, has been holding his hand.

Nothing about this is easy. I thought the outcomes and decisions would be clearer for everyone. This big grayness is awful. I don't mean to sound like I'm overly distraught--while I've done some crying, I am thinking maybe too much right now. I'm also hating it that my pain has been so high (after a few really good days) to allow me to be at the hospital as much as I'd like to be--for my grandmother more than anything.

Note: I will make myself available tomorrow morning, when they meet together to make this decision, to give an informed lay response about trachs, hospice, etc. if they have questions (I was asked a few).

Umm, oh yeah. He called my grandmother late last night after visiting hours (a nurse can bring a phone in) saying he'd just been given the wrong medicine and felt really funny/wrong and that staff were shouting at each other about it at the end of the hall. I don't know if that's what it was really about or no, and the feeling may or may not have had anything to do with the medicine. But that's when he took a turn for the worse. God, I wish for clarity in all of this. This sucks.

crap, offline for a while

2009-09-08T10:28:00.000-07:00

My grandmother just called from the ER about my grandfather; today's procedure didn't go well and resulted in a medical emergency. Have to get my uncle when he's off work. Anticipating being offline for a while.

Update: Thanks for the good wishes, am hoping to sleep tonight. To everyone's surprise, not only did the pneumothorax resolve, but he was alert this morning and they were able to wean him off the ventilator and extubate him (that's a needle biopsy gone very wrong, where the patient comes in fine and ends up on a respirator a few minutes later). He ate all the broth and popsicles and jello for lunch and fed himself most of his supper. Yesterday things looked so bad we didn't anticipate him waking again. Needless to say we're glad he's alert and comfortable. This isn't the way he wanted to go--he didn't want all these interventions and wants to live out the remainder of his days at home. He only went in for a fast needle biopsy!, and they said they wouldn't have done it if the risks had been explained in advance rather than right before they wheeled him off after his hearing aids had been removed. At this point, if he has cancer, he has cancer but not much could be done anyway.

I spent last night at my grandmother's so I could have her there first thing this morning, didn't sleep last night, was at the hospital most of the day, *pain,* am going to bed... will talk to everyone soon.

View from a Wheelchair

2009-09-08T08:18:00.000-07:00

Nancy Mairs strikes me as much nicer than me or else she sits much taller on a better cushion--I generally find myself at butt or crotch level with the world rather than waist high, which can be unpleasant and awkward. (I know others have made this observation, but I also realized that as soon as I started using a scooter, fresh from reading one of her essays on her website--"Wait, I'm lower than that!"). People generally seem not to recognize this and place themselves too close. Wheelchair Kamikaze points this out in his great videos of Manhattan; if you've not seen them, they're very enjoyable. In a recent post (go to September 2), Lene Andersen of the Seated View shows how crowds and street fairs can be difficult for us to enjoy when there's not good planning. In addition, one of her favorite restaurants, which is usually accessible, even blocked off the entire sidewalk for additional seating and put a temporary ramp into the street. People with disabilities are thus deliberately excluded from the restaurant.

Even when we can get access or a good view, people often step around us and then directly in front of us, blocking our line of sight. My husband often wants to know whether I saw something or other while we were walking, but the answer is generally no, that I don't see a lot until I stop. I am generally busy navigating carefully through people and paying attention to the sidewalk or bumpy ground unless I'm on very familiar turf, the path is reasonably smooth, and it's not crowded. This is one reason of many that we like to go places at times that are less likely to be crowded.

Automatic Page Turner

2009-09-07T21:18:00.000-07:00

I don't know if this product would be helpful to other people, but I've posted a link below for an automatic page turner for books. With this automatic page turner, books are held open hands-free and pages can be turned with the push of a button or with a sip-and-puff or foot pedal. For those who have trouble holding a book, keeping it open, and turning pages (even bookholders require frequent repositioning), this may be of some use. I have not tried this product myself but researched for one before I stopped working.

See http://www.pageflip.com/

It looks like someone must adjust it every 20 pages read, but still, it does give some additional independence and allow books to be read where they can't. One of my friends has had to give up reading everything but electronic texts on the computer--she cannot afford a Kindle or books for it and cannot hold books or turn pages.

Thoughts on a Tea Party

2009-09-06T23:28:00.000-07:00

Photograph publically available on the web. There's another full page of it which I'm just too embarrassed to share.

This image is from a murder mystery tea party. This page from the online photo album features a character named Barbara, complete with her pretend neck brace, complaints about her wheelchair, etc., while others point out that she's a hypochondriac and a hypocrite (or is at least perceived to be) since she can go swimming, pole dancing, and has been caught skating. Thoughts? I'm interested since people don't understand why I, an intermittent wheelchair user, am sensitive about it (actually some do, others don't). Yes, these are people I know. The young woman in front is a newly minted PhD from my school, the woman hosting is a lawyer whom I've known for sixteen years, and my mother-in-law also attended and participated. The lawyer is also one of my mother-in-law's two best friends.

You can click the image to make it larger, though the text is still difficult to read. The caption reads: "Barbara looked so ill, we wondered if she would survive the party." And the relevant commentary (the characters are accusing each other of murder) reads:

Dear Big Feather Betty,

Shakespeare also said to kill all the lawyers. Methinks this to be a good idea. Your insulting words are to me "like the breath of an unfee'd lawyer".

You know I am in very delicate health and must watch exposure to every sort of contamination and upsetting situations. I also try to get the proper amount of exercise and pole dancing is an excellent form of exercise. I go to the facility at which Rachel saw me Sat. night for the pole. I breathe through my mouth, a technique I learned from old Marilyn Monroe films, while I exercise there so I don't inhale the smoke. Barbara

Rachel, Do you have handicap parking in front of your house? I require a special parking place due to my frailties.

Barb

Barbara,

Cut the crap! I saw you at the skate park last week and my PI took the following footage, and that was before Rachel saw you pole dancing. Bring your motorized wheel chair if you can't walk to the door! I believe Rachel's sidewalk is safer than the skate park...

Betty

Betty, I saw BABBLING BARBARA at the Water Park on Thursday trying to get someone to take her in as they would not let her come in a motorized wheelchair. She was drooling and whinnnning all over the gate. I think if she needs a handicap parking she should park at the library and motor on over, just give herself enough time as we can't wait for her when it's time to sipppp the tea. I am looking forward to this party and I know I don't have to sit next to the babbling whinning Barb.

As loving as always, AGNES

Truly I can't help but see it as a personal attack. While my sisters-in-law don't think so, they (unlike Rachel and my mother-in-law) actually understand me and have been my friends (one of them since childhood). My mother-in-law, in contrast, has been mean for the past two full years. The more ill I am, the more mean she is. There has been a marked change in our relationship since I've become more disabled. She sees me as lazy and thinks I just need to be more positive, to use better posture and to exercise more. Her own daughters have told me she will never understand my health issues. Ironically, she has multiple but mostly more minor medical problems herself. She doesn't understand intermittent disability or changing pain levels. She doesn't understand why I need a scooter out but not at her house (I actually do, but can't get it into her house).

Because of my in-laws' continuing criticism, I recently finally told my in-laws, at my husband's suggestion, that I want privacy about my health and don't want to discuss it with them.

Even if this is from a boxed game, I still find it highly insensitive and reprehensible. All of the other characters just had a photo and a short phrase to describe them, none of this at all.

Long Time, No Post

2009-08-29T09:24:00.000-07:00

This post was written/added to September 6 but most was drafted earlier (thus it posts as last weekend):

We've been busy with the kids' schools and paperwork and new activities, so I've not been writing my own posts. Busy for me is, of course, less busy than it is for other people, but I have to watch so pain levels don't spiral out of control. I've also been helping my son to focus so he can get through violin practice, multiplication facts (eep, he forgot everything), handwriting practice since he takes an hour to write out a few pages and that keeps him from finishing work, and reading about 40-50 pages of fiction on the days he has time (as he needs to do). All that's in addition to regular homework, plus have been trying to guide my daughter through the organizational changes and grooming issues (new earrings, more attention to appearance, a tiny amount of makeup). My friend will be my daughter's volleyball coach this year (yay!, you can bet this will make my life easier), and since she also coaches her other daughter's team who's just a year younger, my daughter can double practice if she wants and has time.

The hip and ischial bursitis is good enough to allow me to do a reasonable amount (most people would not consider being out a few hours without being in total agony a reasonable amount, but I've lowered my standards), though now the arthritis in my shoulders is killing me the same way my hip and SI did late spring/early summer when the changes showed up on x-ray. Go figure. Did a lot of cleaning out of kids' rooms (this involved a lot of me-deciding and everyone else doing) and ebaying (I write up descriptions, he sorts and takes pictures, does the mailing). Appointments. And am exhausted/in pain when I'm not doing something for someone else.

My grandfather is not doing well and so my sister and her children visited for a weekend. His difficulties are maybe to be expected since he's 87, though sad. I've also been dealing with guardianship issues again (another relative wants my uncle with her) and this has been a strain--that's an understatement. I am glad to do what I am asked to do but don't deserve others' anger for being willing to do so. I was called and told to "back down" about his care (it wasn't my idea, though I'm beginning to see why they may have asked me) and again to "back down" when we called to offer my grandfather help in getting to an appointment, told that I wasn't his daughter (this from another relative, not him). He had missed his last one because he was too ill and tired, though it was an important one. My sister was also called and told not to come by this relative, which left her in tears. She did come, and it was good to see her.

So I've not disappeared, but have just been busy.

We also have a small stack of referrals for my son. The little guy went to the new pediatrician on CHIP recently. Instead of nodding over hypothesized connections between my issues and his when taking his history, about his heel pain and back pain and headaches, she put out some effort. She had him take off his shirt and, so that she didn't have to tell us directly, asked us if his shoulders looked level. No. Obvious problem. His right foot also turns out some when he walks, which she noticed and we hadn't. This is new and could account for the heel pain. He'll see the Shriner's hospital for scoliosis (he had an x-ray already), podiatrist for the heel pain (we went last week but the doctor's daughter was in labor!, reschedule), may have to return to the PCP based on podiatry appointment for an additional rheumatology referral at the Shriner's hospital. Plus he has an upcoming 6-month visit with the autism specialist and new visits with a new OT due to the change to CHIP (including another long assessment, siggggghhh, exhausting, missed school) and should be in the autistic spectrum social group at the university. I really hope his scoliosis is minor and stays minor, that all we need to do is monitor it, that the heel pain and headaches are just normal childhood issues or within the range of normal anyway. I'm feeling sick from the stress of all these appointments given our challenge getting through our daily lives but for now have temporarily pushed down my fears that he will have some of the same problems I do. I just want things to be easier for my kids. I really don't like seeing pain on his face. I'm hoping the right shoe insert or support will relieve the foot pain and maybe in turn some of the back pain. The Shriner's appointment is in December--they do take a while, and maybe some of these others will be out of the way soon. Really, he could stand to have his tonsils out, and I should have had done it right about the time I got my scooter and was struggling; my husband would take him to urgent care for strep throats since that was fast and we could sign in at home rather than wait at the clinic. He's already been sick this school year again and people are commenting on how easily he gets respiratory infections. Scccrrrrrreeeeeaaaaam. I think that just may need to wait right now. Christmas break after seeing how he does this semester?

When my pain medicine was refilled this week, the rheumatologist's office called since it's been a while since I've been in to schedule an appointment. Hahahaha, yeah, lots of time and energy to take care of myself.

I am worrying about my son missing school for some appointments (some of these places assign times, take it or leave it, absolutely). At least the appointments will be near free, but really, does he need to be missing "kid time" to go to OT and to the social program for autistic kids at the university (which would mean leaving school early)? And getting behind on homework and missing activities for appointments after school? I guess this is something I can bring up at the autism appointment. I want to maximize his success but don't want him to suffer to get there or to have academic problems from missing school time. What a catch-22!

My only positive memory from the Shriner's hospital (though the incident horrified me as a teen, it makes me laugh now) is that of a young visiting German doctor asking my mother if my sister and I were heterozygotes or homozygotes. My mother, misunderstanding, lit into the doctor. The doctor did not know the English "fraternal" or "identical," and my mother had not had much biology. Oddly enough, that's because she was in high school a half day on hardship so she could care for her siblings while my grandmother took my uncle to the Shriner's hospital. Anyway. When I had to go, which wasn't often, I hated going, hated missing school, always felt too old for pediatrics and thus felt really embarrassed, hated the exercises which my parents made me do at home when I wanted to do my schoolwork, and was always uncomfortable there and felt under the microscope, good as the care is. Ah, grumpy pre-teens and teens.

My son's teacher did lighten all of his materials at school so he doesn't have to carry heavy items and books class to class (at the GT school, he changes every class, and they typically carry two heavy books around all day plus all of their supplies--not just pens and pencils--and some spirals/workbooks in a plastic tub). So a lot of his materials will be kept in the classes. His violin weights 7.0 pounds with the case, so we may still have trouble keeping everything light enough for him. Extra textbooks will be kept for him here at home, so no trekking back and forth with the math book.

My cousin has arachnoiditis, not ankylosing spondylitis. So she definitely knows about pain issues. Haven't talked to her yet. But I did talk to another disability blogger on the phone--that made my Friday! And I've spent lots of time with family, some of it just watching movies or talking, but that's been good. My mom bought a copy of Jodi Picoult's book about OI for me at a used bookstore, so I'm finally reading through that.

Genetics?

2009-08-19T12:26:00.000-07:00

My mom says that one of my cousins I haven't seen in a long time uses a wheelchair, and that her husband sometimes has to carry her around (she is tiny, but there are also a lot of steps where she lives). She said it was something with her spine and that it started with an "a."

"Ankylosing spondylitis?"

"Yes, that's it."

My son is getting heel pain a lot, sometimes back pain. Hopefully normal childhood issues; we'll see.

Cancer Email from "John Hopkins"

2009-08-18T20:38:00.000-07:00

Last week I received the email at the bottom of this post by someone who was pretty upset about it. There are a few, but not many, facts, and those that do exist are skewed to support illogical conclusions.

Unfortunately, the text of this email has been reproduced all over the alternative medicine web as fact. The "facts" in it are laughable; distilled water is perfect at a 7.0 pH--it is not acidic! This is very basic science. It's funny that someone concerned about dioxin in plastic bottles would recommend covering microwaved food with paper towels--plastic doesn't contain dioxins, but paper towels are bleached with dioxins. There is truly bad science and lack of logic in every numbered item in this email. But again, it's reproduced all over the web. People believe it.

This kind of misinformation below harms, however; it is not at all innocuous and can lead patients to very bad decisions that can take their lives. According to one study, many people believe that surgery will spread cancer (a misunderstanding of metastasis or recurrence) and would not have lung surgery even if a doctor dispelled the myths (http://caonline.amcancersoc.org/cgi/content/full/54/1/2). While chemotherapy is toxic, your chance of surviving breast cancer, for example, is 92% with it but very small without.

The email seems to ignore the ever-increasing survival rates of cancers that result from surgeries, chemo, and other therapies. I have been told that my pre-cancerous uterus was caused by eating sugar and not eliminating it absolutely 100% without exception. Anyone who's taken biology and thinks about it remembers that food is broken down into lipids, proteins, sugars, etc. Sucrose is not different from other carbohydrates that are metabolized into glucose (milk sugar becomes lactose and fruit sugar fructose), though unrefined carbohydrates and a balanced diet are best for a number of reasons. If food is to blame, and we can't know for sure, it is far more likely that I was harmed by drinking soy formula and then soy milk daily until I was 11 because of milk allergy (excessive soy causes cancer, though it's recommended below) and other hormonal therapies to try to control my bleeding for many years.

Increasingly, people encourage an "alkaline" rather than "acidic" diet. This is nonsense. While vegetables are good for you, so are fruits. Quick fact-checking suggests that the normal pH of the blood is 7.3-7.5 and should not go over or under this much (dire circumstances can occur). There is little most people can do to change their blood pH, however; blood pH is an example of homeostasis--the body maintains it.

Both Johns Hopkins and Snopes dispel this email, though I am a bit disappointed they do not address more details, such as the nutritional ones; brevity perhaps helps people to read through all of it. http://www.hopkinskimmelcancercenter.org/index.cfm/cID/1684/mpage/item.cfm/itemID/1016 http://www.snopes.com/medical/disease/cancerupdate.asp

While I don't think anyone would make their decisions on a single email, hearing this kind of material over and over (as with the acidic/alkaline garbage, or that chemo directly causes recurrences) can lead people to poor decisions not based in fact, to alternatives that have little effect or that can even harm. I am not opposed to alternative and complementary medicine that has evidence to support its claims, but this kind of nonsense is harmful.

-------------
FW: JOHN HOPKINS MEDICAL - Good Article!

Don't know how true it is but sure makes sense....

Health Info that I think we can all use.

Subject: JOHN HOPKINS
MEDICAL

Very informative !!!

John Hopkins
Update - Good article
AFTER YEARS OF TELLING PEOPLE CHEMOTHERAPY IS THE ONLY WAY TO TRY ('TRY', BEING THE KEY WORD) TO ELIMINATE CANCER, JOHNS HOPKINS IS FINALLY STARTING TO TELL YOU THERE IS AN ALTERNATIVE WAY.
Cancer Update from Johns Hopkins :
1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size.
2. Cancer cells occur between 6 to more than 10 times in a person's lifetime.
3. When the person's immune system is strong the cancer cells will be destroyed and prevented from multiplying and forming tumors.
4.. When a person has cancer it indicates the person has multiple nutritional deficiencies. These could be due to genetic, environmental, food and lifestyle factors
5. To overcome the multiple nutritional deficiencies, changing diet and including supplements will strengthen the immune system.
6. Chemotherapy involves poisoning the rapidly-growing cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastrointestinal tract etc, and can cause organ damage, like liver, kidneys, heart, lungs etc.
7. Radiation while destroying cancer cells also burns, scars
and damages healthy cells, tissues and organs.
8. Initial treatment with chemotherapy and radiation will often reduce tumor size. However prolonged use of chemotherapy and radiation do not result in more tumor destruction.
9. When the body has too much toxic burden from chemotherapy and radiation the immune system is either compromised or destroyed, hence the person can succumb to various kinds of infections and complications.
10. Chemotherapy and radiation can cause cancer cells to mutate and become resistant and difficult to destroy. Surgery can also cause cancer cells to spread to other sites.
11. An effective way to battle cancer is to starve the cancer cells
by not feeding it with the foods it needs to multiply.. *CANCER CELLS FEED ON:
a. Sugar is a cancer-feeder. By cutting off sugar it cuts off important food supply to the cancer cells. Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses, but only in very small amounts.. Table salt has a chemical added to make it white in color. Better alternative is Bragg's aminos or sea salt.
b. Milk causes the body to produce mucus, especially in the
gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk and substituting with unsweetened soy milk cancer cells are being starved.
c. Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little chicken rather than beef or pork. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer.
d. A diet made of 80% fresh vegetables and juice, whole grains, seeds, nuts and a little fruits help put the body into an alkaline environment. About 20% can be from cooked food including beans. Fresh vegetable juices provide live enzymes
that are easily absorbed and reach down to cellular levels within 15 minutes to nourish and enhance growth of healthy cells.. To obtain live enzymes for building healthy cells try and drink fresh vegetable juice (most vegetables including bean sprouts) and eat some raw vegetables 2 or 3 times a day. Enzymes are destroyed at temperatures of 104 degrees F (40 degrees C).
e. Avoid coffee, tea, and chocolate, which have high
caffeine. Green tea is a better alternative and has cancer fighting properties. Water-best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap water. Distilled water is acidic, avoid it.
12. Meat protein is difficult to digest and requires a lot of
digestive enzymes. Undigested meat remaining in the intestines becomes putrefied and leads to more toxic buildup.
13.. Cancer cell walls have a tough protein covering. By refraining from or eating less meat it frees more enzymes
to attack the protein walls of cancer cells and allows the body's killer cells to destroy the cancer cells.
14. Some supplements build up the immune system (IP6, Flor-ssence, Essiac, anti-oxidants, vitamins, minerals, EFAs etc.) to enable the bodies own killer cells to destroy cancer cells... Other supplements like vitamin E are known to cause apoptosis, or programmed cell death, the body's normal method of disposing of damaged, unwanted, or unneeded cells.
15. Cancer is a disease of the mind, body, and spirit. A proactive and positive spirit will help the cancer warrior be a survivor. Anger, un-forgiveness and bitterness put the body into a stressful and acidic environment. Learn to have a loving and
forgiving spirit. Learn to relax and enjoy life.
16. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to get more oxygen down to the cellular level. Oxygen therapy is another means employed to destroy cancer cells.
1. No plastic containers in micro.
2. No water bottles in
freezer.
3.. No plastic wrap in microwave.
Johns Hopkins has recently sent this out in its newsletters. This information is being circulated at Walter Reed Army Medical Center as well. Dioxin chemicals cause cancer, especially breast cancer. Dioxins are highly poisonous to the cells of our bodies. Don't freeze your plastic bottles with water in them as this releases dioxins from the plastic. Recently, Dr. Edward Fujimoto, Wellness Program Manager at Cast le Hospital, was on a TV program to explain this health hazard. He talked about dioxins and how bad they are for us. He said that we should not be heating our food in the microwave using plastic containers. This especially applies to foods that contain fat. He said that the combination of fat, high heat, and plastics releases dioxin into the food and ultimately into the cells of the body. Instead, he recommends using glass, such as Corning Ware, Pyrex or ceramic containers for heating food You get the same results, only without the dioxin. So such things as TV dinners, instant ramen and soups, etc., should be removed from the container and heated in something else. Paper isn't bad but you don't know what is in the paper. It's just safer to use tempered glass, Corning Ware, etc. He reminded us that a while ago some of the fast food restaurants moved away from the foam containers to paper. The dioxin problem is one of the reasons. Also, he pointed out that plastic wrap, such as Saran, is just as dangerous when placed over foods to be cooked in the microwave. As the food is nuked, the high heat causes poisonous toxins to actually melt out of the plastic wrap and drip into the food. Cover food with a paper towel instead.

This is an article that should be sent to anyone important in your life.

On Crucifixion and Dying from Pain

2009-08-17T09:46:00.000-07:00

This weekend my husband and I watched a History Channel documentary on crucifixion. (The kids were spending the night at their grandparents'; this program is not kid-safe material.) The program demonstrated some important aspects of intractable pain and disability for people of any belief.

I can't summarize in an ordered beginning-to-end way. But some of the highlights are this:
-Crucifixion was a routine torture in the Roman empire used as control and preventative. Jesus and the two next to him were not by far the only ones crucified.
-Christ died quickly on the cross, after about six hours. This was a short time after crucifixion--the agony sometimes lasted from three to nine days. The Romans liked to prolong the torture.
-Volunteers have demonstrated some of the physiological effects of crucifixion (they are secured with ropes and not nailed, and the feet placed into a cuplike holder on the cross). For these athletic, healthy volunteers, their heart rate immediately goes up from 75 to 175 and the body is under immediate distress. Their muscles shake and they begin to sweat. Breathing capacity immediately drops by 10%. The volunteers could not endure it over about ten minutes, and this is without nailing and breaking of bones.
-For Jesus, it's hypothesized that he would not have been able to speak at the end if he was already so short on lung capacity. Instead, this early in the process, he probably had bruised his chest and heart from falling with the 100-lb. cross. The high heart rate caused by the pain would have made his heart unable to bear the strain and would have given him a fatal aneuyresm (thus he could still speak and was aware something sudden had happened).
-The question was asked, "Can pain kill?" The answer: "Yes." For most people who were crucified, pain caused death. The documentary refers to the collapse of the body's functions and organs due to the severe stress on them. In part, autonomic dysfunction secondary to pain. Despite the effects of dehydration, loss of blood from beatings, and reduced lung capacity, death resulted from the pain, not from asphyxiation or other causes as originally believed. (The theory of asphyxiation is that people move themselves up to relieve the pain; lung capacity is measurably reduced by the physiological stress.)
-Crucifixion was considered to be shameful, a shameful way to die.

Some suggest that Jesus' sweat turning into blood was hematohidrosis, a documented reaction that occurs from severe anxiety, and that Jesus also experienced severe shock. Shock occured from the flaying and the breaking of bones during nailing as well as from dehydration.

I have seen some nonbelievers mock the crucifixion; while I understand dislike of organized religion and its effects, Jesus was a rebel against the government, a hippie who ignored laws and rules that were harmful, putting people first. When people can mock this kind of pain, I am reminded of John Donne's "No man is an island." The Nazis also used crucifixion, as did the Japanese (though they killed their victims faster). Many have suffered and died without just cause, for thinking differently or undermining an authority. Who can hear about a poet dragged through the streets of an Eastern European country to his death and not be moved, thinking of one's own friend who lived there and also wrote poetry against the government, who narrowly escaped with his life?

However, people like to think that pain can't kill. Sometimes we hear that pain doesn't kill or can't harm people. We also like to think that people can't feel pain as much when they're in shock or having autonomic dysfunction. So long as they're reasonably conscious, this is absolutely untrue, although they may not have the reserves to complain or respond. The shock that occurs after a major fracture can and sometimes does kill. Prolonged unmitigated pain, whether or not trauma is involved, can result in cardiovascular complications, including heart attack and stroke (http://pain-topics.org/pdf/IntractablePainSurvival.pdf, among others).

We often hear that chronic pain does not harm and that people should push past the pain and do more, but for some patients pain can harm. While it is good to keep or build one's capacities to maximize independence and health, to endure some fatigue or pain temporarily to increase endurance and to lower pain for the long term, for a small minority of patients, pacing is particularly important and pushing oneself can have difficult and even dire consequences. I don't really know how to explain how bad the pain is that results in autonomic dysfunction; I only know that most doctors and other people cannot and do not understand it. A resting heart rate of 150 is not normal! Would it be 175 without the beta blocker? Probably.

I do not mean to suggest at all that pain and suffering makes people Christlike; most of us do not choose to be in pain and take measures against it. Enduring pain does not make us better or worse than another. What I do suggest is that that we should be alert to the pain and suffering of others and do what we can to alleviate it, not increase it. I think more people should know and understand what severe pain is like. We can never fully know the experience of another, but we can approximate and understand. Pain is not something we can just overcome with mental strength or will; Christ did not overcome it but died from it. The severe anxiety that turned his sweat into blood, the beating, the falling with the cross, the betrayal, the mocking, the unjustness: vasogenic shock occurred even before the nailing.

Pain is not weakness or a failure of character. It is not shameful. It just is.

A number of people have told me that when they have become ill or disabled that some people, Christians (an atheist wouldn't say this) blame them for it, say that they must have done something wrong to deserve it. They forget about the crucifixion. They forget that in healing people, Jesus did not condemn. There was no ADA, no wheelchairs (as far as I know), no access; to be disabled was to be unable to work and to participate in daily life. Too often we are labeled as sinners and wrongdoers by those who misunderstand, by Christians and non-Christians who believe that those he healed were the worst sinners or who believe in the Law of Attraction or karma, who forget this passage:
"His disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?' Jesus answered, 'Neither this man nor his parents sinned; he was born blind so that God's works might be revealed in him'" (John 9:1).

I also think the program holds some promise for Christians to have better understanding of the suffering of those within their congregation through understanding the Christ's suffering. Suffering comes not only through physical pain or disability; it also comes from others who mock us, blame us, abuse us, or attempt to shame us because we are disabled. Christianity is not the only religion that has been used to blame people for disability, and atheists as a group can be far easier to talk with about disability and more humane about it. This idea would surprise many. There are exceptions: the uber-fitness, we're better than weak and unhealthy people, "you can-overcome-anything with the right pill, exercise, drug, thought" line of thinking, whether based in conventional or alternative medicine, judges and insults with presumptiveness, misinformation, and poor logic. But I find spiritual and religious people (who are not themselves ill or disabled) far more likely to propagate such beliefs. It's time to correct that.

Again, pain is not weakness or a failure of character. It is not shameful.

Second rounds of interviews

2009-08-11T14:18:00.001-07:00

Second rounds of interviews (both jobs), coming up!

More on unfair quizzes and...interviews

2009-08-05T08:37:00.000-07:00

A quick google tells me there are a lot of quizzes gauging how "retarded" someone is. Also there's a quotation by David Sedaris about being retarded that about 350 people voted that they liked on a literary website. This is GoodReads. You, too, can vote on it as your favorite quotation, but you can't indicate anywhere that it's discriminatory. I know I didn't grow up using the term because I knew what it meant and how it could harm--I remember the first time I heard it used as a slur on the playground to another child. I was shocked. My husband has never used that word. He's always accepted my family readily--I also have a cousin who is very severely autistic. And honestly anyone who didn't wouldn't have been with me any longer. My sister's boyfriend, now husband, was the same way. Unfortunately, this can't be said of absolutely everyone.

When I was small, I remember my mom becoming angry and leaving a church event because someone was making fun of people. Not just using the word, but making fun of them. A few years later, this woman's own child was left permanently brain damaged after a car hit her when she was on her bike when she went into traffic. An instant can change everything. I hope her beliefs changed, but I know that many people don't find their disabled children fit in with their lifestyle.

I didn't remember anything being different about my uncle. I didn't think it was odd that he lived with my grandparents--my aunt did too until she was married. My great-grandmother was always there and other relatives visited and stayed. I remember he was an endless source of art supplies as well as my favorite cassettes, and in retrospect, he showed a lot of patience. My mom had to explain eventually to my sister and me, as I did with my kids.

How do I expect to be changed by being his guardian? More patience and more calm, and not for the reasons people would expect--not patience and calm with him, but patience and calm because of him and the way he reacts to the world. He shows these virtues himself and is a good role model for others. He doesn't speak poorly of others and though he will get angry, he doesn't act on it. He does have good insight into others' emotions, able to point out that someone was just jealous and thus reacting negatively to others (an observation without speaking badly of them). He would like to live with us, and it's important to me that our home be a comfortable place for him. As my mom says, he's good company and she'd rather be around him than someone who would make fun of others.

My cousin is more profoundly impaired and I haven't seen him in a long time due to circumstances more complicated than I can write about here (not my choice, or his sisters'). I can only hope that he's not in one of the terrible state institutions now that he's reached 18, though I can't see him fitting a step-parent's lifestyle since his sisters didn't. But I cannot see making fun of him--what he has difficulties with is not funny. And what he enjoys doing--listening to books read by others, cuddling with his sister, playing with his toy cars--is heartwarming to think of. I worry about him, as do his sisters.

Yesterday I found out that my son has been bullied for three years by four older boys on his bus. He sits at the front and my daughter at the very back and she reports not knowing (which I believe, by the amount of noise emanating from the windows when the bus pulls up). Plus it sounds like these boys hid it, briefly standing up over the bus seat to hit him, for example. He is vulnerable even though he is just a little different--he doesn't initiate conversation with a lot of people and generally doesn't converse or respond as fully as others do (this can be really frustrating when I need information). He doesn't defend himself unless it's with his sister, and I've never known him to "tell" on another child before, not once. He just doesn't take initiative like that, even when he should, even when people took his supplies at school (I asked why he didn't have them anymore). An observer in his classroom noted that another child picked up his chair and moved him over and he did not respond at all--most every child would at least object. There's some concern now since his sister is going to middle school and will not be on the same bus. This situation makes me really sad--I guess somehow I expected he'd tell me if something came up. Instead, he'll often refuse to do something or go a person's house if he's been uncomfortable, without telling me why. I am not pleased about having to pick him up--not upset because of him, but because it victimizes all of us--that uses about 35 minutes of my 2 hours a day of sitting up. What do I do on days I'm more bedridden? We also share a car, making it more difficult--this means picking up my husband before and after work as well if he gets a new job, without him just taking the van and leaving me here about 50% of the time.

I am also worried about the bus driver's abilities and judgment for a few reasons too.

Sigh.

Parents have got to talk to their kids about difference and bullying. Difference doesn't mean you pick on someone.

Anyway. My husband has some upcoming interviews and is at a couple of specialized job fairs today for companies actually doing some hiring. Some of the opportunities he's called about would require a cross-country move, but that could be nice, depending on where. Wish us luck!

FW: Im 45% Retarded! Rock on

2009-08-03T22:53:00.000-07:00

At the bottom of this post is an email my daughter has received many times over the weekend. She initially replied to it, and now I've started to. It disappoints me that so many preteens (and even adults) think that this is okay, that using the word "retarded" as a slur is acceptable. I have a hard time believing how wildly popular this email is compared to all the other junk they forward each other.

As my husband says, we have an uphill battle against the use of the term in such a way. My daughter's response:

"please don't use the word retard or retarded or forward this to other people. It's just as bad as racist terms. I have a great-uncle who is developmentally disabled and he's a great person! Thanks!"

So far we've only received one "yes ma'am" back (goodness) and one "you can't control me." Others have apparently not read what she wrote and forwarded it again anyway.

The email:

This is funny!

This is interesting to see if u can remember if u did this
Lets find out how retarded u r.
1st read mine then press forward and erase my answers and put an X between [] if it is true. Wen ur done mark ur grade @ the top and reply to every1 u can (including the person who sent it 2 u)
>>>> 1. [x] You have choked on water before.
>>>> 2. [x] You have tripped into a pole
>>>> 3. [x] You have walked into a door.
>>>> 4. [] You have pushed a door the wrong way
>> 5. [x] You have walked into a wall.
>>>> 6. [x] You have fallen going UP the stairs. >>
>> 7. [x] You have jumped off something.
>>>> 8. [] You have been electrocuted
>> 9. [] You have put metal/aluminum in the microwave.
>> 10.[] Right after a commercial comes on you have forgotten the show you were watching.
>> 11. []You have forgotten something that someone said.
>>>> 12. [x] You barely ever understand stuff / jokes, or it takes a long time to figure them out.yea
>>>> 14. [] You have bled and not even noticed it. >>

15. [] You've worn something backwards / inside out the whole day without knowing.
>>>> 16. [] you have stuck a fork / knife in a toaster before.
>> 17. [] You have played with fire.
>>>> 18. [] You've stepped on a flat iron / curling iron / straightener.
>>>> 19. [x] You didn't even notice there wasn't a number 13 in this quiz.
>> 20. [x] You just checked to see if there wasn't a number 13.

>>>> Now count how many x u have and find out the percent>>>> So how retarded are u??
>> 0% - 0/20 x's>> 5% - 1/20 x's>> 10% - 2/20 x's>> 15% - 3/20 x's>> 20% - 4/20 x's>> 25% - 5/20 x's>> 30% - 6/20 x's>> 35% - 7/20 x's>> 40% - 8/20 x's>> 45% - 9/20 x's>> 50% - 10/20 x's>> 55% - 11/20 x's>> 60% - 12/20 x's>> 65% - 13/20 x's>> 70% - 14/20 x's>> 75% - 15/20 x's>> 80% - 16/20 x's>> 85% - 17/20 x's >> 90% - 18/20 x's >> 95% - 19/20 x's>> 100% - 20/20 x's

>>>> write the percent u got and send this to all of your friends and send it to the person who sent it to u.>>

More non-updates-doing fine

2009-07-27T16:34:00.000-07:00

I am continuing to do fine so far! And I'm very pleased with that. Not much pain or bleeding and very thankful I had surgery when I did--I know I'd have been very upset with myself if I had let it go. And glad the doctor paid attention--she said people my age just absolutely don't get this, not for another 15 years, and even then, it would have only been 1/200 chance of being cancerous (she said 1/100, but I'd also looked it up). She said she was shocked by how things turned out. But I think we're both relieved now.

I keep getting locked out of my gmail and blogger account (password has been the same forever), so I've got to run more extensive spyware and virus protects and get my husband to help with computer security; husband says its probably some malevolent software. This means prying the computer out of my hands when he gets a chance and not giving it back for a bit. Nothing really that I'm worried about being compromised but sick of it. We've had our credit card number taken before and charged up years back, and if this happens again, I think a better punishment than jailing someone is transferring all our debts to them, and I actually would propose it as a serious solution. I am mad and was madder last night. That's just wrong. I will be in the middle of writing an email (or a blog post yesterday), and I'll get logged out because someone has opened the account on another browser (not my spouse, not me in another window or using another browser). I know that's what's happened because I got the same error message I did when two of us at work would log into the same account at the same time (joint account for a shared project). And then the same password I've had forever won't work when I try to log back in. And I tell you, after the work I put into the blog post yesterday, which vanished into the ethers, except for a few sentences, I was ticked, ticked, ticked. If someone's been in my account for other reasons, they are in a lot of trouble and I am not.

Still unsure about Enbrel. I asked today, and it does not increase the risk of gyn cancers, just other cancers. I know other people say they're healthier on it because they have an overactive immune system that attacks everything. You should see me waffle when I have to make bigger life decisions!

Driving to the hospital today, I looked at every business we could as we passed and estimated that about half lacked disability parking at all (many small businesses, thirty minute drive) and about a third to a quarter were completely inaccessible. There's something to be said for new construction! I still don't think I could get into Starbuck's by the hospital (my parents gave us a gift certificate). There is one curb cut at the end of the lot, but there's a big concrete planter-trashcan by the Starbucks that I don't think I could steer around. There are other places I can get into, though. I have traveled to al ot of other cities and states and don't think this is atypical. In fact, it may be more accessible than other places, especially with a lot of new construction.

Glad I Had Surgery

2009-07-24T15:29:00.000-07:00

I'm glad I had surgery when I did because there were pre-cancerous cells; the doctor called this afternoon. Nothing else needs to be done for now, but if I have any more bleeding after this stage (she anticipates I'll still have it in the next week or so), I will have to have a hysterectomy.

Dear body: seriously?! Stop!

A Little Humor

2009-07-24T09:45:00.000-07:00

My father-in-law's comment last night when dropping off the kids:
"I don't know about this hospital--you looked a lot better when I dropped you off."

Not much pain today at all--just on regular pain medicine. Really can't complain. :)

And take that, Peter Singer. I feel back to myself--after having surgery. Having needed medical care increases quality of life. He fails to acknowledge the surveys that show people with disabilities rate their life quality far higher than others guess they would rate it.

from Frida's husband

2009-07-23T17:36:00.000-07:00

Frida is fine - as well as can be expected - and is now home. Lots of pain and nausea post surgery, but the pain is more under control now and the nausea has mostly subsided. Surgery went well; the growths don't look cancerous. No new bleeding issues.

Getting there was interesting. As usual, we were in rush to get out the door. After dropping off the kids, we saw the low air pressure indicator go off and were hearing a strange repeating noise. Yep, the tire was punctured and was losing air FAST; a large Allen wrench was jutting out of the tire. Fortunately, we were close to a Discount Tire, so we drove it there. They didn't have the tire in stock, but while I waited for them to put on the spare (which is ridiculously complicated on our mini-van), my dad picked her up to take her to the the hospital, and I fortunately was able to make it up there in time before her surgery.

She came home to a post card from Elizabeth. Thanks!

My Life Has Gone Down the Tubes

2009-07-21T16:18:00.001-07:00

I feel like I'm at the bottom of a well, calling up. It's sort of hard to talk to people like this. I am emotionally exhausted, burned out, the candle's burnt at both ends.

I do have more to worry about, just a little. I had a pre-surgery test today and got a phone call a few hours but it's probably incidental. Hoping I don't have to have a bigger surgery a few weeks from now. The ramp was too steep at the radiology place and I was terrified my scooter would tip backwards. The office staff was hateful--then the technician who rescued me from the waiting room turned out to be a former friend from when our kids were tiny. Embarrassing to have her there, but I would rather have her there! It's not really the way I wanted to get reacquainted. She assured me of privacy.

I hate all of this. No one in "RL" would even believe me, well, few. Not that I need them to know, but I wish people would extend some patience, some understanding, some recognition why I can't do what someone is asking me to do.

I've learned who I can count on at times like this--those who see me and turn away or even laugh and those who offer comfort. There are a lot of good people, but there are also people who show their character, not that any of us are perfect by any means. I understand busy-ness, no question; it's the response that interests me.

Surgery Thursday

2009-07-20T15:53:00.000-07:00

Surgery Thursday. Goodness, and it took a month to get the gallbladder one scheduled from when I really started having problems. At least that's less time to worry, which I never do...

Just more updates and another, umm... surgery

2009-07-17T21:38:00.000-07:00

Vocational rehab will pay for a course so I can do medical transcription at home--while electronic medical records will eventually make this obsolete, for now there's still some demand and this will work for now (my sister's providing advice and help). This is something I can do to help with money; I can put in as much work as my disability will (or won't) allow without having to worry about losing a job or moving in and out of the workforce. I can take time off and do my other work, do more or less according to whether my husband has work and how much it pays. This also gives me some flexibility in terms of other life decisions, whether we have to move, etc. And it means not changing up our children's lives radically, paying for childcare or having them come home alone (my elementary school child is not mature enough for that). I don't have to worry about missing work because of medical appointments--I will have flexibility. Just as importantly, vocational rehab will also pay the coinsurance on a wheelchair or different wheelchair cushion. So I'm working on getting all of this set up.

Rheumatologist #1 thinks I may have had GB, that the symptoms match up and says that nerve damage to small nerve fibers might not show up, plus yes, people recover. But he also thinks I should give Enbrel a try, so I'm kind of mystified by the phone call the other day, unless he changed his mind because of my level of disability or thinks I really want it. I asked questions but I'm not sure they got answered, and I wasn't feeling well, though he spent a lot of time. Frankly, I'm confused. But regardless, I'll be putting off the Enbrel, because you can't use it presurgery and...

Now I have to have surgery next week. It's not optional, and it scares me witless because I tend to bleed thanks to the connective tissue issues. I called for an appointment Wednesday, had the appointment today, surgery will be set up Monday, sono on Tuesday, all lab work forwarded, surgery on Thursday or Friday, early the next week if there's any impediment, she'll work around our schedule. Not happy about this one at all. The doctor emphasized to my husband it's absolutely not optional but it has to be done even if we have to get a different doctor because of insurance (not sure of coverage). I can't possibly convey how much I hate this and yes, she reminded me I should have had this done years ago. Because of the bone/hip issues/possible labral tear the anesthesiologist won't give me Versed--that means the doctor can position me without harming me, but she warned me the prep is going to awful and since I freak out anyway, I think I'm starting to hyperventilate already and I think we can all see why I've postponed this nine years.

Wednesday I meet with the PM&R doctor and hope that he can help give some advice. The wheelchair provider has changed and I don't think these people know what they're doing, unlike the last woman. The woman on the phone said if I just need a cushion, they can just order that when I asked about fitting. Uh, no, tried that. I don't know the DME market and while I'm an expert on how things need to work for me, I don't know what products are available or how they all fit together. It sounds closer to direct sales with limited providers of wheelchairs and no real PT/OT. I think I need a wheelchair seating expert/clinic as an objective third party.

And so, I'd like to write about bio"ethicist" Peter Singer's lovely little essay in the NYT but haven't been able to bring myself to write about someone who thinks our quality of life is so bad we should just die so other, more healthy people can get surgeries because of their minor inconveniences.

I have written up much of a post on JFK's disability but haven't finished it yet. My body keeps getting in the way of cerebral issues right now. I hate my life right now but *that is temporary* and will be better in a few weeks. I am so angry about Peter Singer that I can't even think straight. My husband asked if Singer's going to have Kevorkian on speed dial when he gets infirm or disabled.

Drama in Real Life: A Reader's Digest Exclusive

2009-07-14T13:17:00.000-07:00

I let both rheumatologists (former and current) know about the neurology appt. yesterday. Rheumatologist #1's office just called insisting I see him even though he's not my doctor anymore because he absolutely does not agree with the safety of me going on Enbrel. The nurse wanted to know whether I had already ordered it or started it. They said they can work me in in an hour today (no, can't move) or early in the morning Thursday--this from the office where it takes six weeks to schedule a visit for acute matters. So maybe not putting me on it last fall was not a matter of not believing me about the arthritis. Yes, I'll go in--it's probably important to hear what he has to say. Apparently he doesn't own stock in Enbrel.

Roller coaster.

Ride the roller coaster

2009-07-14T00:10:00.001-07:00

Well, what the doctor said is not what the research says for the relapsing or chronic kind, but I'm not going to play bat-the-journal-articles around. I'm getting off that ride. The spondyloarthropathy and related pain are what currently disable me more than anything, and I want help with that. I'm not pleased re-reading through the Enbrel adverse effects again, but I am not pleased with living life on the couch either.

Yay, good news

2009-07-13T12:05:00.001-07:00

The neurologist says I don't have nerve damage, which I'd still have if I had Guillain Barre--he thinks I was so weak because of blood poisoning/effects of that much bacteria from being that ill. So I get to cross one more specialist off my list again. My husband looked kind of queasy/squirmy during the nerve testing--they stick needles in pretty far.

My husband asked if this changes my mind about my internist. No, I was not to blame for not recovering after four rounds of antibiotics. I was really sick and not to blame for it. (Don't read this sentence if you get grossed out--incessantly coughing up copious green fluids for weeks was scary.) If he thought I were less ill, giving me reassurance and his evidence that I was and should be okay would have helped far more. Ultimately, our styles are just too different, and we just could not have worked together. When I started going out of my way to avoid him for routine problems, that was a sign I should have changed doctors. I still believe that he's a good person who cares about his patients; I still think I am a good patient who cares about my health and a good person who shows more consideration than most for my doctors' time and efforts. Whether I needed reassurance, whether I was experiencing drug side effects, or whether I had something more serious, I did not need blame.

Maybe some patients who are giving up and not trying improve with straight talk--I don't know. But I need encouragement. The doctor today was encouraging and not blaming, and I feel good about that. The dermatologist Friday gave me news that she said she knew I did not want to hear but she did not blame me for not coming in earlier, though I should have. Instead, she gave me help for where I'm at so that we can go forward without more damage, telling me at what point to come in at the future so more loss doesn't occur. That's encouragement.

I did call to get Enbrel set up. I don't know if this is a good idea or a bad one, but all I know is that I'm having very, very few good days. Saturday was a rarity. I'm sitting on ice packs just after going to the neurologist. I'll give it a try. I'll be careful--I will. It can always be discontinued if I need to.

Note: I looked up blood poisoning and sepsis and related diagnoses and don't know that I agree with that unless I had some slow-cooking version of it that the change in antibiotics reversed, but anyway, I was pretty darn sick with that infection, staggeringly sick, and it wasn't my fault. I'm glad I got better. You can bet if my kid or spouse or parent was that sick--not just the respiratory symptoms, but getting that physically weak and worsening, I'd have been fighting for better care. And I'd do the same for myself if it happens again. I'm not accepting blame anymore for what's not my fault. If there is something I can change, fine. But not for what's not my fault. I took my medicines, drank my liquids, followed directions, avoided others with illness (though I got sick again then from a nurse with a cold). It is beyond ridiculous to blame a patient for upper respiratory infections when many people had upper respiratory infections then.

I haven't had an upper respiratory infection in many months. It is not because I am virtuous or changed my attitude or have followed some obscure practices. It's a matter of weather and luck and avoidance and an immune system that's not already down from other infections or inadequate pain control (pain was less relieved then).

How Long Does It Take You To...?

2009-07-12T22:03:00.000-07:00

...do housework?! How long does it take you to do chores? Which chores do you always want to do but can't ever squeeze in or do yourself?

In five hours this weekend, with three hours of help from the kids, I:
-loaded the dishwasher (I rinsed, my daughter had to bend to put the silverware and plates in)
-washed a lot of pots and pans that had not been done (four days is my guess)
-cleaned the sink and counters
-cleaned most of the half bath and master bath (not the shower or tub)
-picked up and sorted through some papers and put away a bunch of items that needed to be put away
-dusted the furniture in three rooms, though I couldn't dust lower shelves
-put in two loads of laundry and folded at least two loads of laundry that had been sitting out
-unloaded the dishwasher again
-I managed a shower by myself (sitting down for part)
The kids also took their sheets off and cleaned the upstairs bath and put a lot of their clothes and toys away while I was doing some of this, like the pots and pans and the laundry folding. My daughter helped me load the dishwasher while my son sorted and flattened boxes for recycling and wiped several of the counters. I taught them how to clean the downstairs bathrooms while I did it so that they could do the upstairs bathroom themselves, because it goes too long between cleanings, and they don't like that either.

Can I do this all the time? No! No matter how much I really want to. The planets lined up or something. And standing a lot is not the same as walking a lot--I did a lot of standing on my right leg to keep the pressure off my left SI.

The kids prefer doing chores together periodically rather than having individually-assigned chores on a daily basis--though it's been too long since they've pitched in (my husband tends not to ask for help, doesn't like to). Everyone does what they are physically able to do.

Because I am so slow now, the list above took five hours, with help. I had to sit down for some of it, like laundry folding. I also sat down in the bathroom to work since I have a chair there. How long would these chores have taken me when the kids were small? A few hours, without help. But I'm grateful that I could do some yesterday, and I should when I can. My husband was mowing, cleaning out the mice living quarters, vacuuming, taking out the trash, and doing the grocery shopping--he could not have done these chores and the ones we did as well yesterday. There would have been a choice between them: clean the kitchen or mow?, vacuum or clean the mouse habitat? That's why we were so far behind on the house chores--choices.

I am so frustrated that there is so much more I need and want to do that I can't. Like--clean the garage. Hang up my own clothes--this is often difficult for me. Work on photo albums--I miss this! Take items to the consignment store myself. Steam clean the carpet. Vacuum the window sills and blinds. Take the light fixtures and lightbulbs down and wash them (yes, really--the light fixtures have bugs and some of the bulbs are really dusty). Repaint the baseboards--I used to regularly clean them. Raid my husband's workspace and start a massive cleanout (well, this wouldn't be appreciated...). Do more of the grocery shopping myself. We don't have a fair workload between us, and yet I feel irritation at what's not getting done (it's often a choice between bigger projects or daily tasks).

Yes, I'm paying for it with muscle pain, but the severe pain episodes for a few weeks per month have left me mostly lying down and terribly, terribly out of shape for my condition. And now things are piling up again. I'm hoping I can do more than I have been over the coming weeks. My pain cycles haven't always been so long as they've been.

I had some remission of my pain this weekend. I still can't sit long because of my hip and ischial, but my SI's would let me stand up without wishing to collapse in a heap or circling madly and unable to actually accomplish anything. Today I just managed a shower and mixing up my own pancake batter from scratch (peaches and blueberries), but that's a lot better than I've been able to do some days recently. Friday was awful! We had to turn in benefits documentation in the afternoon and had to sit three hours to do it. Between that and the dermatology appointment, that was all I could do that day--all the sitting beat me down, and I was in such pain that I could just lie down at 5:00 and otherwise couldn't move until 11:00 Saturday. And then somehow did all of that--and didn't move until 12:00 today.

One Reason Not to Skip Dermatology

2009-07-10T09:15:00.000-07:00

Wisdom for this week: don't skip your dermatology appointments. I now have scarring from relatively minor psoriasis where hair won't grow back in, though fortunately the area is not too huge and can be combed over. Yay, me, trying to save time and money by skipping one more specialist.

I don't want more of this, though, and hope I can keep it under control so more of this doesn't happen. Where I've lost hair from pain, that will grow back in. I'm in an endless cycle of new growth versus fallout from pain--when I made the appointment, I was panicky and had far less hair. Now I have more--which will fall out again from the pain the past few weeks.

I really like this dermatologist--without me explaining, she understands I can't follow complex routines and need the easiest solutions possible. So we'll hope for the best. My skin is a lot better with going wheat-free. I'd have done that a long time ago if I'd realized.

Ramps and Bridges

2009-07-02T21:18:00.000-07:00

I was thinking about how we don't have a ramp in front of the house, just one in the garage, so I haven't been out with the kids for their bike rides or walks in almost two years. We go other places than outside our front door when I want to go.

I did burn a bridge with my former internist this week and let him know some of how he made me feel and the consequences of that, sending him the documentation I sent to the neurologist. Predictably, we got the letter of doom today. That's okay. I feel better for expressing myself. I waited one year too long to do it, while still under his care and repeatedly enduring the same criticism for being sick. When a patient runs through four rounds of antibiotics for the same infection and a doctor is both unconcerned and blames the patient for it (his other women patients but not men patients also report blame), I'd say that another doctor is a better choice. I haven't been able to bring myself to go back to him for anything after he called the gallbladder problem a cardiology problem and refused to help. That was over six months ago. Still, missed diagnoses are one thing--people are human. The blame for what was absolutely beyond my control was the problem. I mean, blaming patients for getting respiratory illness and pneumonia? I avoid people who are sick! I hate being sick, hate it.

Why did I accept and internalize what he said rather than finding someone else? I guess anyone new is an unknown. I found my new rheumatologist from others who work with him, and he's just not like that. He's empathetic and good at what he does. My gyn isn't like that; my urologist talks fast but isn't like that. I always wonder when the other shoe will drop with a doctor. I liked my internist for a long time and recommended him to others even after he said this to me, telling me I was making myself sick, bringing it on myself, and that if I were more positive and more spiritual or something I would get well. Add that to a number of bad decisions after that based on such beliefs, and it was borderline malpractice.

And thus Frida attempts to enter a new mindset. From emails, insurance records, and my calendar, plus my memory of course, I was able to reconstruct a chronology of my symptoms with more detail than I'd imagined I could do. Who knows, maybe I can turn it into an essay someday, or a few of them, like Laura Hillenbrand's about her chronic fatigue.

My high fever is back with unremitting, severe bone pain in multiple places, feels like I have a stress fracture in my femur (I've had them) as the only symptom, while I am on day 8 of an antibiotic. I have a feeling I may need antibiotics for a long time. What am I doing blogging? There's nothing else to do except circle the house in pain, which I am doing a lot on foot, briefly pausing to rest on a chair or the bed, despite the extra pain from that, because I cannot bear being still (well, I am now for a while). Yet I can't *do* anything while walking around. I stop to do the dishes and start circling slowly again because I can't stand to do anything. It hurts too much to do something focused. I can't shower. I can't concentrate on paperwork. I haven't been able to sleep except in brief snatches the past few days. I can't follow movies, though the documentary on bears was interesting. When I'm sitting I want my hip and leg in one position.

I am bored out of my skull and sick of this. I am sick of being sick. I keep circling back to this post to add more. My mind is going, Dave. Daisy, Daisy, give me some pain relief, true, something something something about a scooter built for two.

Ableds are mean. I need crip friends right now. One relative regaled me with a story of someone with MS who will be at her house this weekend, who has a "positive attitude" about it and "you'd never guess she has MS" since she enrolled in a clinical trial for a couple of years and now shows no signs of it. She keeps asking me if I don't need to exercise more (hell, I'd like to, I'd love to) and telling me I need to "fight it with all the strength I've got." Conversely, I've learned fighting things with all the strength I've got makes me very, very ill. I can do it when I have to do something. Pacing works a lot better, and rest when I'm in acute pain. I am tired of her criticism. When I was in the midst of acute pneumonia, she told me to exercise more--she had acute pneumonia a few weeks before herself (I probably caught it from her), and she couldn't exercise then! I am dreading this weekend, having to deal with the MS patient who has the "good attitude" and cured herself through positive thinking and who just "goes and goes" and has a lot of energy and loves to cook and blah blah blah. Good for her, that really is great. But she's not sick right now, okay? I am. I am increasingly realizing that she is thinking of someone who is more disabled as having a negative attitude, while she sees people who are capable of doing more as "fighting it" and "having a good attitude." My husband's had a couple of talks with her already but I think needs to have a very long one.

Bursitis and X-Ray Changes

2009-07-02T15:13:00.000-07:00

I have hip and ischial bursitis, thus a lot of my extra pain recently. The pain has an explanation! That part is good. It means that pain will go away again. I'm also trying a new anti-inflammatory patch that seems to help, though I can only use it in one area at a time. That is also good.

A plain film x-ray now shows damage to my hip and SI joint. I did not even show changes on MRI a year and a half ago, when the pain began to be so consistently intense, or on x-ray a year ago. Goodness. Not happy about that at all, though yes, it proves it's not my imagination. I think it was better not to have damage rather than inflammation, even if I sometimes had to argue about the pain level. I'm too young to have damaged joints! Grrr.

FDA Slated to Hand Out Guns Rather Than Hydrocodone to Chronic Pain Patients

2009-07-01T02:30:00.001-07:00

An advisory panel to the FDA has recommended pulling Vicodin (hydrocodone) and Percocet off shelves because of the danger of overdose and liver damage.
http://www.cnn.com/2009/HEALTH/06/30/acetaminophen.fda.hearing/index.html
I have a better proposal. Why don't we remove all drugs from the market because of the potential for overdose and for most of them, liver damage and other serious side effects? Once we pull the sleeping pills and antidepressants away from health care administrators and insurance execs, they might spend their time awake making good or at least ethical decisions and experiencing stress, guilt, and grief for decisions that harm people. Can't and shouldn't liver counts be monitored for people on serious meds for the long term? Mine are.

Hydrocodone is the drug I take because of the effects of anti-inflammatories on my stomach; many anti-inflammatories have also been pulled from the market. It makes living as opposed to existing possible, allows me to extend my time out sometimes and enjoy a day out, though I may be bedridden later. Why doesn't the FDA just hand out guns instead of hydrocodone? Or do they want us on stronger narcotics, like Oxycontin, or oh, oh, what's the one that starts with a D? Dilaudid? And morphine! They think suicides and overdoses will go down if they pull these drugs off the shelves? Yes, I have been suicidal from pain though have recognized it will get better again and I have tried to relieve it in other ways. Adequate pain relief makes life bearable.

So we'll have more people more drugged on stronger stuff up on the streets, because stronger drugs don't have any side effects. And, I know! Let's put all the arthritis people on the TNF inhibitors--they only cost $15,000 a year, paid for by the advisory panel (or wait, do they own stock?). Those don't have any serious risks! Or do they want us all smoking pot?

Ibuprofen also causes liver damage--let's ban that, too.

Let's also sign up the FDA advisory panel for clinical trials using themselves as volunteers for spinal surgeries following voluntarily induced disability. No pain medicine for you!

See also, "Guns, Not Hydrocodone."

Oof

2009-06-23T08:15:00.000-07:00

My neighbor with MS, a wheelchair user, just passed away at home. My husband is choking down a fast breakfast and going over to see if she needs help until family gets there. I can't stay out of the bathroom (stomach virus? thought it was UTI/kidney and tested positive) and feel bad I can't help. This feels like a blow. He was retired, but not much beyond.

Redux

2009-06-22T18:17:00.001-07:00

Rheumatologist #1 mentioned last week that he thought IVIG would help with my immune system/energies. I wasn't considering treatment--I was just considering whether I had it, as it does need to come into medical decisions. I forgot to mention I'll probably have to go back to him because of insurance until there's employment (important lesson: generally never burn bridges, and I didn't). Maybe it's an oversight, but my insurance doesn't cover for IVIG for Guillain Barre, even though the insurance health info site says that's the primary treatment. Regardless, it's not standard or covered by any insurance unless diagnosed in the first two weeks except for general severe immunodeficiencies (which given the list under my celiac post, well...).

He called in reply to that email and said that he thinks I have a chronic form of Guillain Barre (it has a complicated name) and that I should consider IVIG and it might help with a lot. Okay. Maybe. Can't really afford a lot of copays now. Maybe later or if I get that sick again. I'd say I don't have the chronic form but I was sick with 102 fever over the weekend and almost resorted to crawling to the bathroom while the family was away. And there was the usual dysautonomia.

I don't know what I think. But it's been eighteen months, no need to make a rapid decision.

Part of me feels suspicious about all this but he has more than enough business, truly, enough to keep a few more rheumatologists busy. But why bother now? Because of my internist chiding me, I have this fear that I'll get in there and he'll say I have a mental disorder instead (well, paranoia is a mental disorder) and want to treat that.

I guess this explains all the dysautonomia and may play into the bladder dysfunction at the same time. That I could move the top half of my body the day of surgery but couldn't move it the day after or weeks after, that I couldn't use any muscles to roll myself to my side or pull up--that's the Miller Fisher variant. Didn't recognize it because my legs were okay though slow. Darn nurse charted me as okay in self-mobility even though she saw it and commented negatively on it.

All I can say is thank God I had the mild version. People (not family) would have just yelled at me to do more after spine surgery. If not for my husband, if I were single, I would have had to stay in rehab and I could just imagine them yelling at me for what was not in my control, for not trying harder. People have no idea how much I actually push (though my husband's taught me not to do it to the point of it backfiring--sometimes I'm stubborn anyway).

Rheumatologist #1 said he definitely wouldn't do Enbrel because of this since it's been known to cause it. And that kind of thing is why I brought it up--it affects my medical decisions and when it hasn't, sometimes I've run into problems.

I'd go back to Rheumatologist #2 and discuss--but $$$.

I want tomato. Tomato with eggplant. Tomato with okra. Okra bhindi (okay, okra is bhindi--the kind that's very soft with tomato and curried). Bhaigan bharta. Chopped tomato over (rice) pasta. Grilled tomato on grilled cheese sandwich (yes GF bread).

Update: Now I've pinpointed my distrust. It was the Enbrel carrot followed by no Enbrel last fall when my life changed in every way because of pain. If I have to go back to him I think we need to talk about that. Not that it's a good option, but at the time I felt it was.

But This I Know for Sure

2009-06-19T21:01:00.000-07:00

I had Guillain Barre in December 2007-January 2008, just before I began blogging.

I can write more about what happened later. I just want it out. I am tired of feeling embarrassed and apologetic about being sick so much. I am tired of feeling guilty, as my primary care physician made me feel. I want to trust people I know I can trust. I'm tired of hiding diagnoses and illnesses. I shouldn't be this sick all the time. I have a lot of autoimmune problems and orthopedic problems and they fit together somehow. I didn't have autoimmune illness before that except allergies and the arthritis if that qualifies. There can't be answers if I deal with one piece at a time.

That's what necessitated the need-a-scooter-right now-today, not the spine pain only--though I had already started the insurance process for a scooter because of that. Before yesterday I had not discussed Guillain Barre with others, with anyone (update: no, I told it to Elizabeth who has understanding from similar experiences and to one person online who showed every sign of it herself after biologic drugs). I did not write of what my disabilities were at first, not for a long time--I was a new blogger, and this was my safe space. I saw how people questioned other female bloggers and I didn't need that.

I had to make an appointment with a dermatologist yesterday (any more hair loss and I will be my own horror movie). On a whim, I fired off a quick email to my first rheumatologist in the same office, letting him know that insurance did not cover the scooter (he had provided medical necessity info and supporting documentation) since it occurred to me he would not know that and it may happen to others. I also told him I thought I had Guillain Barre when I was so sick the year before. He called me on the phone and said he agreed with that. He had diagnosed me with an immunodeficiency and myopathy, more general categories.

Last night my mom said she thought at the time that I had Guillain Barre. She recognized the symptoms from a friend who had it but did not tell me--it is rare and she may have also been second-guessing herself. To my surprise, she immediately agreed to what I said as soon as I said it.

I was very ill.

I was not treated for it thanks to my primary care physician berating me so that I would not seek emergency help when I became very ill. I am stubborn to a flaw. It took me a few weeks to get in to see the rheumatologist despite pleas to the office staff--and that was squeezing me in; by that time I was stable but still very unwell. I do have this to say--my rheumatologist never chided me for being sick and worked to fully investigate the problem and help me with it.

Why is this important? Just now I know that people with GBS have dysautonomia; I believe I had a relapse after my surgery because I could not sit up, roll over, use large muscle groups without assistance. I've learned I am running risks when I'm under anesthesia or when I make medication decisions if I don't tell people about this.

Sometimes I get fatigued, really fatigued. I have never had the same energy level after I got that ill.

Surely I will have no further problems and no further relapses. I am very lucky to have recovered as I have. But I am not going to let anyone chide me for being very ill again. This shouldn't be a dirty secret. It's just me, and I'm tired of hiding me.

Celiac? Yes, I still think that's possible. All the symptoms match up. I cannot know but it's irresponsible for me not to go GF. There's no way to know for sure unless I go GF for a long time and do better. With this much wrong with me, I want to get better, not worse.

Do I Have Celiac? Is That the Answer?

2009-06-17T21:43:00.000-07:00

Some problems caused by celiac that, coincidentally, I have:
Sjogren's, arthritis, osteoporosis, antithyroid antibodies, ANA + (indicator of heading toward lupus or other autoimmune issues), psoriasis, menstrual irregularities, bad intestinal issues that I don't talk about a lot, the liver issues, neurological symptoms, brain fog and memory issues, anemia, menstrual issues, vitamin deficiencies that I should not have given my diet (magnesium), chronic fatigue, extreme hunger after I touch anything with wheat.

The first rheumatologist gave me the blood test for it five years ago, before I had any of these problems except the orthopedic ones, I guess to see if that caused my fragile bones. I thought celiac was something people had at birth or not and didn't realize people could get it at any time.

I kept getting sicker and sicker over the course of the last month or two. We brought our grocery budget for a family of 4 under $100 a week by shopping for what's on sale and planning menus around that. That also means buying cereal that's on sale and that we can use triple coupons on (50 cents for Raisin Bran) rather than Rice Chex or oatmeal cereals I often ate. We are eating healthy but almost all grains were from wheat.

I can't afford the copay on a biopsy; the blood test is often inaccurate. I am going completely gluten free. I can't know for sure whether I have celiac or just a complex of interrelated autoimmune symptoms. But, frankly, it seems irresponsible to not try a gluten free diet. Apparently people can get really, really ill from celiac and I do have symptoms that match up. It's worth a try and I'm glad to do what I can and excited that it may work.

When I eat as wheat free as possible, I feel better overall, with more energy--I feel smarter and that my brain will work. I was noticing that I still would feel bad after eating a rice cake, though--cross contamination, maybe, because of the flavorings on it.

The cost is a concern and is the main reason I had not tried gluten-free more before. Now WalMart now offers a gluten-free pasta for under $2.00 and Chex has a good cereal that is cinnamon flavor and far more tasty than Rice Chex. Corn chips and corn tortillas that aren't contaminated are good options. Too much corn will also me itchy, so I need to find some other options too. I found about Bob's Red Mill from Gluten Free Girl, so we can make some things far more cheaply ourselves. I can't afford a lot of the gluten free cereals, crackers, granola, etc. on a regular basis, but I'm sure I'll get some on occasion. It would be nice to have some convenience foods on occasion, though I don't normally think of bread or pizza dough as a convenience food!

Between my daughter's violin camp, my son's Scouting day camp, and trying to get some other things done I have not had a chance to go to the specialty stores yet, so I've had a lot of rice this week, sweet potatoes, and small baked potatoes--I need some carbs. We're out of quinoa! We need to get that too.

I don't have a lot of physical energy from pain so the idea of making my own breadcrumbs is daunting even though I used to love to concoct new recipes. I'm having a few food cravings but also enjoying some really good food--my husband made eggplant Parmesan this weekend. The eggplant is not breaded--it's baked with balsamic vinegar in the oven before layering it with cheese and homemade chunky tomato sauce (hardly a sauce because the tomato retains its texture). We've had a lot of free tomatoes this year from some of my parents' customers who sell at the Farmer's Market--tastes so good on grilled cheese sandwiches (have got to get the gluten free bread mix, not an option now) or chopped up and cooked with basil, Vidalia onion, a touch of sugar, a mix of Italian spices and a touch of white wine. Incredible flavor!

I only just now found out you can acquire it at any time, that it's not something you're only born with. I did wheat free for a while as much as I could and felt better but slid off; I'd been tested a long time ago and didn't have it then--before all of these other things. I got really sick the past few weeks from eating as we have but feel excited that there may be some pretty simple solution to most of it; I doubt it will cure the arthritis completely but it may help some.

Still not sure on the wheelchair cushion--I do have Katja's extra one. Goodness, my hip is hurting me all the time, and my sacrum and I'm wondering if I could sit up very much even in a wheelchair with a good cushion. I don't want to invest lots of time and energy and insurance money on something that won't work better.

Supracor: Advice Needed, Please

2009-06-01T21:05:00.000-07:00

The cushion arrived. The cushion itself is perfect. But there are new problems because of it.

1. My heels don't touch the platform of the scooter because of the thickness of the cushion (3") unless I wear shoes with a good heel, like my Keens. I'd rather not look like June Cleaver or a hiking version thereof around the house--I can't really see going in shoes all the time; it's not practical. Not having my feet supported well gives me more back pain.
2. I can't use the armrests or the lucite desktop because they're too low. I need the armrests as much as I can use them (they're a little low for me even without this cushion) for support/relief of pain. I might be able to get some padding for the armrests. I don't know. It's possible I could get the post of the scooter shimmed off by our service tech by an inch or so--he said he could do that to give it a slight permanent tilt while in motion if I needed, but I'm not sure if he could shim the whole base.
3. The tiller feels too low.
4. I can't get full function from the tilt-in-space because this means the seatback supports less of my back--I'm sitting higher. And I can only tip back so far this way without straining my neck/back.

But the cushion itself is perfect for my rear and spine and relieves pain. And I can only sit a few hours at a time otherwise, and am in great pain later. Does this help anymore? I don't know. The slimline cushion might give me an inch but is still going to cause a lot of problems--the original padding for the seat is very, very thin. The reduced thickness also means not sitting up as much--I need the padding for my spine and SI joints to be able to sit up.

So here are my questions:
1. Do I live with these additional changes as is?
2. Or exchange the cushion for another thinner one, the Slimline, from Allegro, which will take another month? This cushion might not help as much with pain.
3. Do I make an additional attempt to get a wheelchair, which could be more customized, from my insurance company (info below)? Even if I could get insurance to pay for a wheelchair, would they consider my specific seating needs medical necessity? I can't pay any money out of pocket.
4. If so, should I seek referral from my rheumatologist (who knows my limits) to a seating expert, which I didn't even know about a few years ago, or should I go to a PM&R doctor who works with SCIs and amputees and see if they can make recommendations and give a referral? While I have a PM&R doctor, he specializes in injections and spine procedures, and I don't know that he's prescribed any wheelchairs in the few years he's been in practice.

Sometimes I've shorthanded by saying insurance won't pay for DME--in theory they might, in reality not. Sparing you the long details of insurance bureaucracy, which I'm glad to type out if anyone's interested, I am wondering if I would be more likely to get them to pay for a wheelchair, which can be more customized, if I went directly to a PM&R doctor. Before deciding just to outright shelve and deny my claim, they told me that only PM&Rs and certain physical therapists can prescribe (which I only recently found out is illegal--internists and rheumatologists can prescribe and document medical necessity). I doubt I could get the tilt-in-space function since a friend with very high level of disability can't, even though my seating tolerance is very low. Now that I'm primarily couchbound I may qualify under the Medicare rules my insurance company uses too.

What cruelty, the Medicare rules--how many people are housebound, virtually imprisoned, by such archaic laws that deem if you can make it a very short ways in your house that you don't need a wheelchair, that shopping and medical appointments and participation in the world are not necessary?

I could weep. I have wept. Writers are not supposed to say this. I see why seating is considered an art rather than a science--there are tradeoffs that can truly compromise quality of life. I'm sorry to be a downer. I was thrilled when I first sat down.

Why didn't I get an engineering degree? This really is not so difficult. I know what I need. It's just apparently an impossibility. There are so many wonderful products out there, products people can't get and that inventors can't succeed with. What is the economic and social cost of people being on disability and needing more care rather than being more active? The right cushion and the right ergonomics--basically my home office chair with power, almost--can make a lot of us functioning rather than having to choke down hydrocodone just to enjoy a day out, a day out that will cost days and days of functioning later.

The Best Laid Plans of Mice and Men...

2009-05-25T11:54:00.000-07:00

My apologies that I am behind on posting comments and on replying to them. I'll try to be back more soon--last week was a high pain week but also a high activity week--it was Fine Arts week at the kids' school, which meant events every night except Wednesday, on which my daughter had a violin audition for middle school. And double events Monday, barely making it to my son's Cub Scout crossover ceremony on time.

I'm sorry to say it's been a bad pet week or two. My mother-in-law called this morning to say not to come over for lunch, that she was having to put her 9-year-old dog to sleep--kidney failure from Cushing's disease. Thirty minutes later we discovered one of our son's pet mice, Corn, had passed away. My husband thought about pet replacement rather than telling my son since my son grieves so hard about his little pets. When Mousie died when he was six, it just about broke his heart. My son keeps trying to think of what might have caused Corn to die, but she was healthy (so we thought), and very cared for. I feel bad, too, wondering if there's something else we could have done, though I don't think so. Spots, Corn's sister, seems somewhat surprised about being by herself.

Last week, my daughter's aquatic frog that we really thought was going to die at several points before passed away last week. The big tumor this froggy had spontaneously disappeared, and she had many more months, though she couldn't swim a lot at the end. The froggy was a gift from her teacher, so that was hard. Now her betta fish that she's owned for a few years is in grief and doing very poorly. Yes, the aquarium is in good, clean condition, water quality appropriately controlled. I know the betta has a dot sized brain, but he really liked the frog even more than he likes to watch us (always drawing near when we're washing dishes or sitting on the couch--he's in an aquarium on the ledge between our kitchen and living room). The first day was the hardest for him. One of my son's baby African dwarf frogs has been AWOL for a while. The frogs actually have been replaced a few times (shhhhh!). I'm torn between wanting him to know and sparing him unnecessary grief for animals that have very short life spans. Years back, he lost two tadpoles that never turned into frogs but lived an unnaturally long time as tadpoles (almost a year).

As Lene at The Seated View points out, Mercury's been retrograde a while. No, we don't have the house on the market yet though we're making it so far (with fear in our chests)--I don't always remember what I've updated people on here and it would make sense for people to assume that we've been able to do so since I haven't said otherwise. In April I had some other big matters to take care of for most of the month since I didn't want years of work to go down the drain, though we still worked on house projects and ebay too as we could. My pain has been so bad I've been having trouble keeping up with daily tasks, which means my husband must take up more of those. With that, applying for jobs full time (really) and dealing with financial matters, going to several stores to save money (six stores on the list this week, but who can pass up 88 cent Triscuits or Cool Whip for free since the kids eat it with their berries), various applications for all kinds of programs which save money but require a lot of paperwork, we are a bit beat, though we're still muddling through. We have done a lot of ebay though need to do more--setting up auctions can take us a half day on Sundays, then we have packages to mail out Monday and Tuesday. House projects we still have left to do: repaint the trim on the baseboards, scrub and wash the window screens and windows outside and in, clean the light fixtures, clean out the garage, some of my old clothes to a consignment store, ebay more of the kids' clothes (or consignment store--harder to find those for the 'tween ages), retile half-bath, fix trim near bathroom shower, steam clean the carpet, repaint two rooms that really need it. Sigh. If only my pain were less I could keep up with more of the daily tasks so that my husband could keep up with these bigger projects. Yes we can let some things go for a while and do--but even then we are having trouble keeping up. I'm feeling a little overwhelmed by our inabilities sometimes. Yes, we're doing things, but at a turtle's pace. My in-laws are exhausted helping out with my great-grandmother and my parents are not in good health and really can't help a lot physically. My mom has helped get shoes for my son, swimsuits for the kids, and other items that my daughter needs for camp, so yes that helps, so we've been shopping for that. Plus there's been all the kids' activities.

Maybe with April projects and kids' activities winding down we can make more headway soon. Maybe my pain flares will diminish. The past couple of days were a little better, though today's not great.

Frida Writes

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