Friday, March 28, 2014

Expect the Unexpected

A few weeks ago, the joystick on my wheelchair started feeling weird. Where it normally moved smoothly and effortlessly, now it felt sticky and as if I had to push harder to get the same effect.

That paragraph made it sound as if I’m right on top of how my wheelchair feels at all times. And mostly, this is true. In many ways, it is an extension of my body and I know exactly how it’s supposed to feel. A small variation can make things feel wrong enough that it’s obvious something’s gone wonky. That was not the case this time. This time, it all started with the muscles between my ribs hurting. They don’t normally do that — blessedly, they’re some of the few muscles in my body that I normally don’t notice much — but an injury in my back around Christmas has meant that I’ve been more aware of these tiny little muscles on my left side. Now the right side joined them. So did the right-side muscle so evocatively named the pectoralis major, along with every place it adhered to my sternum. This happens sometimes, so at first I powered through it, loading up on Pennsaid during the day and muscle relaxants at night.

And then I got a clue and finally figured out that this was all because it was slightly harder to push my joystick. Being a physical wreck is annoying.

I called Dave the Wonder Repair Guy and we set up an appointment for me to get a new gimbal. This is the doohickey that translates movement of the joystick to movement of the chair. On the appointed day I get to the shop, Dave dismantles my joystick and this is when things get interesting.

Because there’s moisture inside. There’s not supposed to be moisture inside the joystick. There are electronics inside the joystick box, including a circuit board, wires and all sorts of things that you very definitely do not want to get wet. Which is why I put a protective sandwich bag over the joystick whenever I go out in the rain or snow. Said bag is referred to as my “joystick condom.”
Brief pause to allow you to snicker.
Back to my dismantled joystick. I’m dumbfounded. I am always very careful not to get my joystick wet. Sure, occasionally Lucy the Doofus Cat has caused things to up-end which have brought moisture perilously close to the area, but I’ve always managed to get it wiped off before any damage happened. But no, the moisture is inside the silicone sleeve, as well as on the bottom of the joystick box, near the circuit board. And this is when things get even more interesting.

Dave puts his finger on the moisture and realizes that it’s oily. If I was dumbfounded before, now I am struck completely IQ-less, as I don’t get near any oil whatsoever. Dave sniffs the joystick sleeve, comments that it smells somewhat familiar, almost like furniture polish.

I haven’t been near furniture polish in decades. He persists, saying it might smell a bit like the lemon oil used for wood. I remark that my mother uses orange oil for her antique wood furniture, but because of the smell and my asthma, I have been nowhere near it for decades.

Deeply puzzled, I poke at the joystick sleeve and yes, indeed. It’s oily. I sniff the joystick sleeve and there is a very faint scent, something familiar. I almost know what it is, but not quite.

By this time, both of us are confused and annoyed at our collective inability to identify this almost-familiar scent. Then Dave starts reaching for the impossible, mentions peanut oil and it all comes together. I swear a bell clanged out ding-ding-ding somewhere in the vicinity.

“Could it be olive oil?” I inquire.

Two weeks prior to the session in the shop, I’d started making a new dish. A very yummy dish. You cook some spaghetti. Then you get out a frying pan and start frying up chopped garlic with red pepper flakes in a bit of olive oil. When the garlic is just starting to turn brown, you throw in the pasta and toss it around in the garlic and pepper flakes. Add baby kale (or baby spinach) and some leftover pasta water. Let it sit and steam covered with a lid until ready to eat.

I’ve always used butter for cooking, but do have some olive oil is in a pump spray bottle that until recently was never used. When telling one of my attendants how to make the dish, she held the frying pan in front of me like a shield, almost vertically while spritzing three quick sprays of oil. Part of one of these spritzes had escaped the edge of the frying pan and snuck in between the joystick box and the cap that holds the sleeve.

The result: my joystick was literally sticky. The good news is that all that was required was a cleaning, saving me $350 for a new gimbal.


Thursday, March 27, 2014

Losing Weight with RA and Chronic Pain

I`ve been feeling pudgy lately. What better way to deal with it than to recruit weightloss buddies on a grand scale? This is my new post for HealthCentral:

"How do you lose weight with RA? That’s a good question, one that I’ve been stuck on for a while. These days there’s more of me than there used to be and it’s getting harder to ignore. Especially at this time of year. The promise of warmer temperatures has me thinking about spring jackets and T-shirts instead of being buried in sweaters. Closely on the heels of these thoughts came the realization that perhaps the winter added a few extra pounds. For insulation, y’know.

The formula for losing weight is a deceptively simple one: take in less calories that you use. This is often translated into the maxim “eat less, move more.” That’s difficult enough for healthy, able-bodied people, but when you have RA, you have some extra challenges to take into account. How do you make the formula work with a chronic illness? This post will give you tips on how to lose weight with RA."


Monday, March 24, 2014

5 Randoms on Monday

Hello, blog people! Did you miss me? I wandered off there for a while. Not deliberately, but life happened rather a lot and there has been very little time to write. 

Here are five thoughts from the last two weeks that may shed some light on what I’ve been up to:

Be careful what you wish for. The problem with working really hard to help people become empowered is that when it works, sometimes it puts you in a situation that you didn’t expect. I am now the newly minted member of a Board of Directors, thanks to a group of very empowered individuals who unexpectedly expressed their opinions. Yay for success! I think?

Inflammation Schminflammation. My rheumatologist likes for me to get blood tests done before I see her. At my latest appointment, she told me not to bother with CRP and ESR (inflammation markers), but to focus on cholesterol, kidney and liver function tests. Because CRP and ESR tests indicate the level of inflammation in the body, they are sensitive to any inflammation, not just that related to inflammatory arthritis, such as RA. Have an infection? They go up. Feeling under the weather? They go up. And so on. Since they’re not an accurate indication of disease activity, I’m supposed to focus on how my organs are doing. And they're doing just fine. (knock wood)

I have muscles there? Did you know that we have muscles between our ribs? And did you know that said muscles can be affected by mysterious events and factors, causing intense pain every time they are affected by body movements? Which, as very few moments do not include some aspect of your torso, is a lot?

Does rat poison work on groundhogs? Spring is here! 

Which we celebrated by having a snow and freezing rain “event” this weekend. It’s getting hard to summon up energy and enthusiasm. The entire northern part of North America is curling in on itself in weather-related depression. I am no exception.

Filthy lucre ain’t so filthy after all. Being paid to do accessibility assessments is really satisfying. Busy and intense, but satisfying.

What have you been up to?