Tuesday, June 23, 2009


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

Monday, June 22, 2009


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

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

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

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

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

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

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

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

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

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

Friday, June 19, 2009

But This I Know for Sure

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

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

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

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

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

I was very ill.

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

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

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

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

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

Wednesday, June 17, 2009

Do I Have Celiac? Is That the Answer?

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

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

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

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

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

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

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

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

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

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

Monday, June 1, 2009

Supracor: Advice Needed, Please

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

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

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

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

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

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

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

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