Guess my weight? No, really, please

I am not sure anyone not already living it can understand life in a wheelchair. Well, except the readers of this blog.

For instance, the last time I was really weighed was eight or nine years ago at NIH and even that was sketchy.

I was there to see the neurologist for what would be the last time. There's nothing more we can learn from you, the neuro said, so don't call us, we'll call you. I am still waiting for that call.

But before he booted me, I asked him for a scale I could use. He found one with grab bars to pull myself up and then balance. Anyway I did, and I was shocked to find I weighed 135 pounds. I rarely weighed more than 100 when I could use scales.

My primary care doctor was thrilled that I was approaching a normal weight for my height.

Since then, I have tried sitting on a scale with questionable results and just trying not to think about it.

I resolved then to ask my primary care doctor if she had a way to weigh me. Her answer, to put it simply: No.

She said they have bed scales in the hospital but nothing for me. She was sending me to a rehab doctor so she said to ask the rehab doctor.

The rehab doctor had good ideas, I guess, as long as I didn't mind being weighed at a vet or a warehouse.

Who needs to know their weight anyway?

I want another option

While caring for a patient trying to quit smoking, a doctor noticed that the patient's ataxia symptoms and balance improved. Sweet!

I found this out in an email from the Friedreich's Ataxia Research Alliance, which also told me that a study of the smoking-cessation drug -- varenicline -- was looking for participants.

It was a double-blind study, so in the first phase I would not even necessarily get the drug, but I would be assured of getting it during the 2.5-month phase 2. It was in Philadelphia, so it wasn't far and they give you $150 for each of the eight required trips to the clinic. I told Mom about it and said I wanted to do it.

They didn't really list side effects, but I figured it was an FDA-approved drug already; how bad can they be?

Pretty freaking bad, it turns out.

The story offerings that popped up when I clicked on varenicline in my email took me to New Zealand. It seems that the New Zealand government had just added "a new warning on mental health risks" to the drug, known as Champix. Depression and suicidal thoughts were real possibilities, New Zealand decided.

Who cares, I thought; New Zealanders are just not tough like me.

But then I googled Chantix, which is what the drug's brand name is here, it actually got worse.

The drug works by blocking the nicotine receptors in the brain so the nicotine does not give you pleasure. I take anti-depressants, but I think in general it is a bad idea to screw with the brain.

Last year, the FDA said "it appears increasingly likely that there may be an association between Chantix and serious neuropsychiatric symptoms." Later the FAA said pilots and air traffic controllers could not use it. The Wall Street Journal's Health Blog reported a big drop in Chantix prescriptions.

The kicker for me was an article in New York Magazine by a reporter who took the drug. It was good, and had a disappointing look at drug trials. Not surprising, just disappointing. But I did not get to the end of the article; I had to stop when he started talking about the suicides.

I get suicide.

I understand the appeal of wanting pains and sadness and frustrations to end. But when you get further than that, to talk of actually killing yourself, I start to feel really oogy and sick to my stomach.

Needless to say I won't be joining this study. In addition to the psychiatric issues, there also side effects of nausea, diarrhea and constipation, so forget it.

With my luck, this drug will kick Friedreich's ataxia's ass, and I will have to choose whether to be suicidal or wobbly.

Don't go there, but I did

I should not go on to the front porch in my wheelchair, even just for a bit to watch the Memorial Day parade.

I used to be able to go in and out easy enough, and this chair rumbled on out OK, but getting back in was miserable.

The lip of the door hit my footplate so I could not go froward. I had to go up backward, and my chair never gets traction going backward.

Dad wanted to lift the chair up over the lip, but I told him he couldn't because it was too heavy. That was about when everyone started watching. I knew how the guy with the stalled Kena race car felt.

Finally, I said loudly I was going to wait till everyone had left to go in, and I did wait for a little, but I decided it would be a bad idea because I might be stuck out on the porch forever
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Finally, I tried again and my brother and uncle pulled the chair up the lip.

It's not the help I need, it's the attention from everyone wanting to help.

Rolling Drizzle

Around the time my 4-year-old nephew was born, my sister, his mom, bought two versions of the stuffed animal that became his thing to sleep with, carry around, etc. I guess my sister figured that if one ever got lost, stolen or nastified, she could swap in the duplicate. She probably had the idea because she was never able to find an exact copy of her oldest child's Bear Bear.

But my nephew's Blue has never been lost and has been too nastified that a wash did not fix him.

Blue has never been stolen either, despite my best efforts. I tell my nephew I need Blue for work, or to keep away my bad dreams or whatever. He never gives in ... until today.

He came over with Blue and handed him to me. "You're giving me Blue?" I asked. "It's not Blue; it just looks like him. Mom picked it up. Now we can both have one."

Then he had a granola bar and left.

I felt bad that my sister had actually bought me a stuffed animal -- if people are going to buy me things, I want them to count. But I later learned that he saw Blue 2 as I will call him under my sister's bed, where it has been for years. After getting him out, my nephew told his mom "I better take this over to Uncle Matt."

Now what do I do with Blue 2?

He currently is riding on the back of my chair as you can see. Mom said it would be like the Rolling Thunder guys who have teddy bears on their bikes like this.

I suppose it is although Blue 2 is not as manly as the sarge there and my chair is nowhere near as manly as a motorcycle. They have earth-rumbling roars when they gun their engines. I have a wee little click when I start. The only one who moves when she hears it is Claren because she knows I am likely to run over her because I am a bad driver.

I could leave him in my bed, though my nephew sees my bed all the time and would ask why.

I could put him in my cubicle at work.

Or I could leave him on my chair. It would be a conversation starter, that's for sure, unless people find it weird and off-putting, and stay away from me.

Where should Blue 2 live?

My cursing needs to get its priorities straight

A friend sent me a link to a T-shirt recently, offering it if the blog needs an official shirt. It is a design featuring the ubiquitous wheelchair dude from parking signs only he had fallen out of his chair. He is lying facedown and the shirt just said "Crap!"

I like it, although it occurs to me that I don't curse when I fall -- too focused on how I can get up without calling for help.

This morning, for instance, I fell getting into the shower, and if ever a fall deserved cursing, it was this one.

My foot slipped off the rug and I fell. The problem is I had seen that the rug was out of place on my way into the bathroom, but I did not feel like doing anything about it. It is not something I can fix on my own because if I wheel close enough to pick up the rug, my wheels are on it and I can't move it. And I did not feel like calling for help. So I fell. I got up and showered all without a curse in my mind.

I saved the curses for when my socks and shorts fell on the ground when I grabbed them, the "goddamn bastards."