Wednesday, August 11, 2010

About Pain Meds and MJ

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.

Given such considerations, I was highly surprised and alarmed 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? 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? Physically, I wonder if many people would be better off if they could use medical marijuana, at least at night to control breakthrough pain.

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 even discussing the topic.  But we need to speak up more, and not just for ourselves--I've been selfish not to do so.  

Monday, July 26, 2010

ADA: Coffee by Internet

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!

Thursday, July 8, 2010

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

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.

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.

Tuesday, July 6, 2010

Frida Kahlo's Birthday

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

Wednesday, June 23, 2010

Busy Weeks

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?

Tuesday, June 1, 2010

Medicine's Dark Secret

***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 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.

Wednesday, May 26, 2010

"Small" Blessings

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.

Friday, May 14, 2010

Target Ad Redux

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.

Thursday, May 13, 2010

Honesty, Not Kindness

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.


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.

Wednesday, May 12, 2010

Wheelchair User Featured in Target Ad

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.

Monday, May 10, 2010

Coming Soon to a Theater Near You...

...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.

Thursday, May 6, 2010

Equal Opportunity Silence and Portraits in Miniature

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.

Saturday, May 1, 2010

Blogging Against Disablism: Some Suggestions for the Medical System

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.

Tuesday, April 27, 2010

First Person Singular and Blogging against Disablism

Blogging Against Disablism Day, May 1st 2010

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.

Thursday, April 22, 2010

Spring Has Sprung

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...

Thursday, April 15, 2010

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

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.

Wednesday, March 31, 2010

Health Care Reform 2010

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:

Immediate Provisions (2010):
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:

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

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:

Sunday, March 28, 2010

Thank you, Pride Quantum

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.

Friday, March 26, 2010


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...

...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.

Thursday, March 25, 2010

Notes on a Film: The Doctor

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.

Wednesday, March 24, 2010

Friday, just in time

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.

Saturday, March 13, 2010

Say No to Colloidal Silver

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 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.

Friday, March 12, 2010

I Don't Deserve This

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.

Wednesday, March 10, 2010


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...

Monday, February 15, 2010

Website for Potential PCAs/Household Help

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.

Sunday, February 14, 2010

Valentine's Day: Sex and Disability 2

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.

Friday, February 12, 2010

Snow Day!

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.

Monday, February 8, 2010

Thursday, February 4, 2010

Good News

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.

Wednesday, February 3, 2010

Please Help a Friend

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

Most but not all of my readers also read Elizabeth's blog ( 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:

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.

Tuesday, February 2, 2010

Hi, Dear Readers

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.

Tuesday, January 19, 2010

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

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:

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?