Thursday, December 24, 2009

Happy Holidays

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

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

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

Tuesday, December 22, 2009

Advice on Quantum 6000Z versus TDX SP?

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

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

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

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

Enbrel, Round 2

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

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

Lead weights on.

Saturday, December 19, 2009

Doing the Hard Drugs

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

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

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

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

Thursday, December 17, 2009

Frida and the Sea Monkeys

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

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

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

Wednesday, December 16, 2009

How Many Days Until What, O'Henry?

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

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

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

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

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

Tuesday, December 15, 2009

Wheelchair Seating Clinic

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

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

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

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

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

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

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

Wednesday, December 9, 2009

Possible Job?--Not Daring to Breathe Yet

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

Tuesday, December 8, 2009

Bad to Worse

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

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

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

Monday, December 7, 2009

Too Cold!

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

Saturday, December 5, 2009


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

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

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

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

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

Thursday, December 3, 2009

Warning: Possible Scam Targeting Disability Bloggers

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

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

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

Wednesday, December 2, 2009

Food pantry tomorrow

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

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

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

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

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

Just more updates

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

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

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

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

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

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

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

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

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

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

Tuesday, November 10, 2009

Wheelchair Seating Clinic

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

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

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

Tired mama.

Advice? Things I should know or consider?

Friday, November 6, 2009

Service Dog Apps and Wheelchair Seating Clinic

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

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

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

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

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

If anyone else is on the spondylitis spectrum, here's an article on someone with spondylitis who has a service dog:

Tuesday, November 3, 2009

Laura Hillenbrand on Chronic Fatigue

If you haven't had a chance to read Laura Hillenbrand's essay on the development of her chronic fatigue and how she managed to write Seabiscuit paragraph by paragraph, it is well worth your time to do so:

Thursday, October 29, 2009

New Podlett, New Doctor

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

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

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

Wednesday, October 28, 2009

On Disability and Rudeness

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

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

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

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

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

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

Denied, A New Book

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

See the text of HR 3184 at:

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

Personal updates to follow at end.

How do you talk to a disabled person?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, October 4, 2009

Grandfather Passed Away

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

Tuesday, September 29, 2009

Going Crazy

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

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

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

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

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

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

I can't get my own crap done.

I hate my goddamned life.

Saturday, September 26, 2009

"New" Wheelie Friend

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

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

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

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

Friday, September 25, 2009

Staying Gluten Free

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

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

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

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

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

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

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

Monday, September 21, 2009

"Help Crippled Children" ??

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

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

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

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

Tuesday, September 15, 2009

Hospice Care for Grandfather

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

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

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

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

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

I hope everything improves soon.

Monday, September 14, 2009

*Using* Gates' Disability to Discredit Obama

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Andrew McCarthy has assembled an overwhelming case that Obama has lied about who he is. I predict that more and more Americans will become open to the argument that they have been had by a sophisticated and ruthless effort to foist a phony on America. Page Printed from:
at July 31, 2009 - 04:59:44 PM EDT
I have never known a conservative who is not a relative or a very close friend to offer me assistance in the ways this email suggests, not that we know if Gates needs or wants help beyond what he is getting; in fact, I've had some conservatives abandon me mid-field trip and leave me in a dangerous situation. Most conservatives never offer me help where I very obviously need it (such as waiting for a door or not being able to reach overhead; someone also let a glass door slam on me in my scooter last weekend rather than continue to hold it), or even in their own homes. The woman who sent me this email certainly has never done anything to allow me accessibility in her home or more comfort within it, and in fact chooses to make fun of those who do request accommodations (see the tea party post). Conservatives do not care about accessibility either privately or publicly, whether I can attend events or must stay home. They do not care about my health or how I am doing. I have been told by this person that she always changes the subject (which I've noticed) when it's about "health" (read "disability"). This common kind of attitude is dismissive of others' experiences and the important social and legislative aspects of disability that apply to a lot of people. No wonder people don't understand why my friend who's been through chemo for cancer just after surviving a near-fatal heart infection can't make it to events or help as much and don't understand the day after she's had chemo why she's sick. No wonder this woman can make such conclusions about other people and about universal health care, also deciding, in her words, that I feel sorry for myself. The irony here is that she obviously expects people to feel sorry for Gates.

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

More Thoughts on Advance Directives

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

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

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

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

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

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

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

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

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

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

Sunday, September 13, 2009

Disabled Scooter Users Ticketed?

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

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

Saturday, September 12, 2009

Things Going Better Again

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

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

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

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

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

Friday, September 11, 2009

Difficult Decisions

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

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

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

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

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

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

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

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

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

Tuesday, September 8, 2009

crap, offline for a while

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

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

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

View from a Wheelchair

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

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

Monday, September 7, 2009

Automatic Page Turner

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


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

Sunday, September 6, 2009

Thoughts on a Tea Party

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

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

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

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

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

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

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

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

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

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

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

Saturday, August 29, 2009

Long Time, No Post

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

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

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

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

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

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

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

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

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

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

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