Looking good!

I'm in a good mood today. Finally it feels like my TO DO list is getting shorter. Good thing, since we leave in 5 days.

I got word today that in Ushuaia (Tierra del Fuego) the catamaran tour of a penguin rookery is wheelchair accessible!! Wonderful news. Honestly, I was a little worried that I'd go all the way to the other side of the world and not see any penguins. You know, like when you take a whale watching cruise and don't see any whales? That happened to us on the Big Island in Hawaii. And afterwards we saw a ton of whales from the grounds of the hotel, go figure.

So, the house is ready. You'd think there's nothing to do to get a house ready to be empty, right? But 4 cats (bored, lonely and irritated cats) alone in an empty house - means doing some prep so nothing gets damaged, not to mention having enough supplies for them. I'm set up with 2 cat sitters, and have a neighbor looking after the outdoor plants.

All the plans are ready - 4 plane trips reservations, 2 hotel reservations, 3 different companies for taxi service reservations, 3 dinner reservations, 1 excursion, and of course the cruise documents and check in pass. We've printed out a list of Argentine wines we liked, hoping to buy more. And we've got travel books and a Buenos Aires map (from our last trip there). I even managed to reach my first cousin (once removed), and we've got a dinner date with her and her 2 kids and their spouses... a party! for one night in Buenos Aires. So, it's all coming together.

Still got the jitters though. I always do before traveling. I'm excited, but nervous too.

And now some follow up, because a few of you have been asking me questions.

The cats are doing well. Shakespeare and Marlowe's paws are almost totally healed. They still walk a little more tentatively, but whatever discomfort they feel doesn't slow them down, or stop them from climbing or jumping. The vet said they could be sore for a few weeks. So, if they are still limping after we get back, we'll take them in again. But they healed well, and forgave Jim for capturing them, and forgave me for ignoring their cries while they were locked up. They are 2 very sweet and loving kitties.

I don't expect to get a new wheelchair till about June. But I'm putting dates down for when stuff happens related to that purchase, just to show long it does take. The chair before my current one was a disaster purchase, but perhaps I'll tell that story another day.

And my wrist is doing a bit better today after just a few days of rest. If I hit it just wrong, it will hurt a lot. But overall it isn't aching all day long. And a note to my PT - I am not writing a long blog all in one sitting! I know that's not good for my wrist, so it gets written in smaller bits, and then posted all at once, ok?

The rheumatologist's office called TODAY to say that they can't do the wrist ultrasound this Friday after all, something came up and everyone is rescheduled. Since I'll be away for 3 weeks, and they only do these on Tuesdays and Fridays (used to be just Fridays!) it's now rescheduled for March 12. I'm hoping they'll at least give me a call back with the blood test results before the end of the week, but I'm not holding my breath.

OK, any more questions for me? Post a comment.

It's getting frustrating!

My right wrist hurts. All the time now. Though it's not a high level of pain, it's pretty steady. And an awful lot of my activities seem to make it hurt more. It feels like something squeezing my wrist all the time, and my hand tingles. There's no strength in that hand any more.

So, this week I'm being "good" and staying home, trying not to stress my wrist. My main goal is to keep it from getting worse, so that my wrist pain won't ruin my vacation. I'm even hoping that real rest (is that possible?) might make the pain go away, but I think I'm dreaming on that one.

The pain first started late last spring or early summer. It wouldn't be there all the time, but could be acute with some activities, bending it just so or picking up something heavy like a pot full of water and cooked spaghetti. I had my PT work on it, and tried my own home solutions like ibuprofen, heat, wrist splints. And it might go away for a day or 2, then it would come back.

So, in July I saw my internist, who referred me to a hand specialist, who diagnosed deQuervain's tendonitis. Let's see - there was a wrist x-ray in there, and my internist took some blood samples, including requesting a test for rheumatoid arthritis, though at the time I didn't know he ordered that test. Anyway, the hand surgeon gave me a cortisone shot, and it was like magic! Within a week, the pain was gone.

And the pain stayed gone.... for 4 months. It came back a week after visiting my mother in Huntsville, AL. At that time I had a removable rigid back to my chair, which you put on by lining up pins on each side with sockets mounted onto the canes of the back of the chair. My chair is getting old, as I'm mentioned before, and the canes are not really steady now. Plus I suspect the mounts had gotten bumped slightly from travel inside the belly of the plane. But after that trip, I found the back even harder to put on, and to remove. When removing it, it would get stuck and I'd have to jerk it really hard. To get it in I had to hold it carefully, steady, and slowly lower it down first on one side - but not too quickly or the lock would click on the first side, and then it would be too low to get the second pin in! So, you had to be reallllly steady. All of this matters, because every time I got in and out of my car, I had to remove the back before folding the car to load it in my ChairTopper. And I had to do it one-handed, yes, with my right hand, while my left hand held my body steady. I'm a high level para, so I have no trunk muscles, no muscles lower than shoulder height. Which means no balance, and no way to get myself upright if I keel over. So, picture this - sit in the driver's seat of your car, feet already in place. Twist your body to the left and one by one, remove foot pedals and seat cushion. Then spin the chair around, so you have the back toward the car. Then, with left hand holding the side of your seat, or maybe one wheel of the chair, as you lean out of the car - with your right hand yank unlock the 2 pins on the side, and grab the handle at the top of the seat back and yank up. It wasn't easy. And made harder by equipment that wasn't fitting quite right.

One of those yanks, possibly a few together, brought back the tendonitis pain. I suffered with it for a month, and on Christmas Eve finally begged for another cortisone shot. The doc said this was the last time though, after this I was looking at surgery. The shot did it's work again, but the pain really only stayed away for about a month. This time when it came back, I couldn't point to a specific event that caused it. And this time, it is a steady pain, worse at specific moments, but it doesn't even totally go away either.

Meanwhile also in December, I was back to my internist, for a physical this time. My RF (rheumatoid factor, the first screening test for rheumatoid arthritis) was high, so he ordered a retest. It also came back high, so I was referred to a rheumatologist.

I saw the rheumatologist in late Dec, and he took more blood, and I have an appointment for this Friday for an ultrasound of my wrist. From what I understand, I'm not really presenting a normal pattern for rheumatoid arthritis, but the later blood work and ultrasound will better answer that question. He's more inclined to think all I have is overuse of my wrist, resulting in the deQuervain's, though it is possible that this is just the first sign of a larger problem.

Anyway, all this is background. What's getting to me today, is that it seems like there's no way to reasonably rest my wrist. I'm so dependent on my arms for everything. I'm not driving anywhere this week, unless I see it as super essential. Even my PT appointment got cut. Driving hurts a little, and the transfers in and out of the car are painful. So, Jim is doing all the errands like picking up cat litter, and returning library books. I've come up with another way to do my carseat transfer, but I do worry I'll strain some other muscle or joint. So, I have to be careful. Last weekend, when Jim and I went out, he drove and gave me pushes.

I'm cooking simpler fare. I'm taking Aleve and applying heat. I've stopped wrist stretches and exercises. I'm pushing myself less, since I'm not going out. I'm skipping showers - that eliminates 4 transfers. If I don't shower I get dressed on the bed when I first get up, then 1 transfer from bed to chair. If I want a shower, then it's bed to chair, chair to shower seat, shower seat to chair, chair back to bed to get dressed and then bed to chair again - 5 transfers. Hey, I'm not doing anything to get sweaty, and not seeing anyone either, so skipping a shower or 2 won't hurt me.

Resting my wrist any more than this, or if I get surgery then recovery as well, would mean asking others for help. Jim would have to take on a fair amount of helping me, and I really hate to ask him. I'm not entirely sure where this comes from, but I don't want to be dependent on him. I want to carry my load in our relationship, and if I can't do my usual share of taking care of the house, I'll feel dependent. I also have this fear that this dependency will become permanent. It's like becoming disabled all over again, learning to live with less, and I'm fighting it.

I know quads who need personal care attendants daily. I have always expected I'll end up needing assistance eventually. But I'm not ready yet, and I honestly don't think my wrist is going to bring this about. All the same, I can't seem to figure a way around this pain, to make it stop. It feels like nothing I do will help. At least, nothing I do alone.

I'm about to have 4 weeks of reasonable rest. This week at home. Then 3 weeks of travel, where I'll have fewer transfers in and out of cars, no driving, someone pushing me most of the time, no cooking or laundry, and no care of cats (cleaning cat boxes for example). I'll be as rested as I can be. If I still have pain when I return, and I suspect I will, it'll be time to really figure out what is going on, and what to do to make it go away, and stay away. If it is truly only de Quervain's tendonitis, I'm headed to surgery and will need help for a while. I do want to try to understand why I got the tendonitis in the first place though, so it doesn't come back. If something else is going on in my wrist, I want to know.

This isn't the first time I have had tingling in that hand. Some years ago I had a similar problem, but it was mostly tingling without the wrist pain. After extensive testing, they didn't really have a diagnosis, but found I had a cyst on my spinal cord near the injury level. Perhaps the cyst has become a syrinx? Perhaps it has moved and caused me to lose some muscle strength in my wrist? Though I'm right handed, I have often favored my wrist. I don't use my right thumb while typing for example.

Yes, my right wrist hurts. It's consuming my energy, even robbing me of sleep, when I still have a lot of thing to do to get ready for our vacation. This trip is beginning finally to feel real and I'm pretty excited about it. Everything will be done in time. Most of the prep already is done. The most time consuming thing left is packing. And I think I can do that without hurting my wrist more. Argentina and Antarctica here I come. Probably just one more blog this week, then the next one will be from the other side of the world.

buying a new wheelchair

December 29, 2009, Step 1

On that date, I stopped by my physiatrist's office to ask for a referral to the PT dept for a wheelchair evaluation. I was over at Sharp Rehab that day to get my weight. I could have called the office for this referral, for it was something his office assistant would handle, no need for an appointment - not yet, but I was there anyway. The reason I go to Sharp for my weight - it's hard to be weighed on most scales when you can't stand. At Sharp they have a platform scale, large enough for a wheelchair to sit on. So, if you know the weight of your chair empty, you can take the weight with you in the chair and subtract the empty chair. I weighed in at 169 pounds, time to count calories and lose weight, again.

About 2 years ago, I was part of a weight management class for women with disabilities. I tried counting calories and watching carb consumption and dropped from 172 pounds to 155. I knew I had gained weight back, but so much? It was almost the new year, so I gave myself a new year's resolution. Which I will admit that today, Jan 28, 2010, I haven't really done yet. But I might still.

So on Dec 29, I made an appointment to see my physiatrist, and asked for the PT referral. The PT department called me back around a week later and I made that appointment for Tuesday Jan 26, almost a month later.

Tuesday Jan 12 step 2

Met with my physiatrist - a general checkup of sorts. Mostly talked about my disability related health issues - vertigo and wrist problems, irritable bowel and diverticulosis. I hadn't seen him in 2 years, and typically see him when I have some health issue that is so clearly related to my disability, AND is something my internist cannot handle, which really isn't much. The last time I was there? I think I was shopping for a new cushion. This time, a new chair.

It isn't that I don't like my physiatrist, it's just that I really wish I could handle everything from sore throats to pressure sores with one doctor and my internist is better able to handle disability issues as well as general ones, whereas my physiatrist is much more just a disability doc. So, I see them both, but one a little more frequently than the other.

My appointment that day was more for form's sake than a really helpful appointment. In the end he'll be the one that writes the prescription for the new wheelchair, so it is appropriate for him to see me at this time. I don't mind going really.

January 26, Step 3

Wheelchair Clinic at Sharp Rehab, with a PT and a rep from Mobility Solutions, a seller of wheelchairs.

This was a useful appointment, the rep had a lot of information for me. My current wheelchair is a Quickie 2, the workhorse of the Quickie brand, and it seems to be the standard in the folding chairs for active people. My chair is 6 years old, and what they sell now isn't much different, because it's a good solid product. 2 other companies make similar chairs - Invacare makes the ProSpin, and TiLite makes the aero-x.

So, now, I need to do my own research - evaluate the 3 brands, figure out the subtle differences. All 3 chairs can be make to my measurements, have removable foot pedals and arms. I can reduce the weight by getting a lighter design of arm, by getting spoke wheels instead of mag wheels, and getting rid of the frog's legs. I'll have to think about that one. But cutting off 4 pounds would be really nice. I'll change the brakes so I get fewer bruises when I transfer, and probably get a new cushion.

The rep also told me that if I move the wheels forward even 1/2 or a full inch, it would reduce the strain on my shoulders and wrists pushing. That would be so nice.

But none of these chairs really has a good solution for the back of my chair. I want a folding rigid back! It doesn't exist. I want something rigid to help my posture, and reduce my vertigo. But something that folds like a regular upholstery back, or that is easy to pull off, without hurting my wrist. I was told there are some after market back solutions, so I guess I'm not the only one with this problem.

Anyway, I have to do more research. Perhaps I'll get to it before our vacation, perhaps not.

Then the next step, is to pick which chairs interest me, and which cushions I might like, and ask the rep to show them to me. We'll have to do the measurements, and there's a pressure mapping machine at Sharp PT to help figure out which cushion is the best choice, which will give the most even pressure on my bottom, and ischials. It'll probably happen towards the end of March.

Anyone with experience with the Invacare or TiLite chairs?