Tuesday, 18 June 2013

Update time

I believe it's time to give a bit of an update of what is going on in my life at this point. As the Depo-medrol shot continued to slowly wear off, I started treatment with Methotrexate last week. It's kind of strange, but I'm almost in a balancing act at the moment between the slowly declining and the (hopefully) slowly improving. I know it will take a long time for the MTX to work (if it IS going to work) and that I likely will get far worse before I get better, but I can deal with that, I think. At the moment I have maybe 6 "useful" hours in a day, the rest having to nap or just rest. I can read during some of the "non-useful" hours (so they're actually useful after all), but nothing very deep. I can also watch old movies on TCM during those down times; I do feel like something of a slug, though. Mornings are....well, they just are. It takes a long time and some Tylenol 3 to get me going and I have a lovely relationship with my new recliner. I'm trying to journal things carefully so we track any changes. I can't drive, but I can sit in the car for longer periods of time, I'm still able to get out of bed and the recliner on my own and can dress myself (except for socks). I am walking (albeit very slowly and carefully) without a cane. I can shower, but it takes a looong time, LOL, so still definitely much better than before that shot.

The prevailing "wisdom" about exercise and RA is "do it if you can; don't if you can't", referring to the fact that one shouldn't exercise during flares or through pain as it can exacerbate the joint damage. There has also been some research done about muscle mass in RA patients, even those who exercise a lot, and it has been shown that the disease prevents some of the building of muscle mass. Sigh. Since this disease began its attack in late March, I have lost about a sixth of my weight through lack of appetite and inability to exercise. Please don't say, "Oh, you're lucky - I wish I could lose weight like that". It is NOT a good thing and quite distressing. I have watched my very fit body literally waste away before my eyes, hard-earned muscle mass melting off, leaving wasted limbs. My BMI is presently "very underweight". It's hard to pack in enough calories when you just don't want to eat, but we're working on it. I believe this might be improving as I make an effort to eat at certain times of day whether I'm hungry or not.

One thing I have been doing when my wrists cooperate is that I've been drawing cartoons from an RA perspective. I'm sure people without RA will find them kind of strange but it is cathartic to draw them and the feedback from the RA community has been good.

I guess that's about it right now. Kind of feeling like I'm in limbo.....

1 comment:

  1. Thanks for the update. I do get the sense that you are "on top of this disease" in regards to finding everything out about that you can and understanding what you can and cannot do about it.
    Keep fighting!