Okay - I'm going to get all grumpy on you, so bear with me. Patience is indeed a virtue, and an absolute necessity when dealing with this disease, but there are times I feel far from patient. There are times I want to rail against the fates, tear my hair and rend my garments, to get classical. It's impatience with a dash of "why me" thrown in, which could easily escalate into a pity party. I get this way when my major daily triumphs are getting dressed mostly on my own and being able to open a freaking applesauce cup. How did I get to this place? Then I think back three months, to when this all started. Three months. That's it, and I'm already undergoing treatment. People go through years and years of this before getting help and being diagnosed and finding the right combo of meds for relief. How do they do it without going mad? I stop and do a quick assessment of how I feel right at this moment and compare it to May 12th, my lowest point thus far, and realize there is no comparison. I really have come a long way, in this short time.
So suck it up, Chiquita; time to get virtuous again.
For those of you who follow RA Comix, there has been a short hiatus from production as I'm sure you've noticed. My wrists have been very uncooperative for about the last week, especially my drawing hand (in fact, I've been typing with one finger of the other hand up until today; the new skills you learn as an RA patient!). Comix will resume ASAP, hopefully within the next day or so, as my wrist seems less swollen and broken-feeling today. Can't wait to get drawing again!
Thanks for your patience!
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.....
I keep this monster disease at bay using humour, so I decided to draw some comics based on RA as therapy. Obviously, I know firsthand that there isn't really anything funny about the disease, but those who have it and have experienced the situations in these comics will "get" it.
I truly hope no one is offended by them, but this is one of the ways I deal with the beast.
So, without further ado, here is installment #1 of RA COMIX:
This will not be a race report per se, but a report on a small victory that perhaps was not so small.
On my first visit to the Rheumatologist in May, we found some pamphlets from the Canadian Arthritis Society, including one for a fundraising walk on June 9th at a local park (there were venues all across Canada for the same day). That seemed impossibly distant and also physically impossible for me to do at the time. After getting a steroid shot to alleviate symptoms, it seemed more likely that I could do the walk, so I started fundraising, eventually raising $465 (thank you so much, everybody!!!). Symptoms started creeping back in two weeks later, but I was still good enough to get there and do the 1 km option today.
The weather was lovely, some friends had come out and there was lots of great food, music and cool incentives, as well as info tables from some PT places and the Society itself, where I picked up some great lit.
It turned out that I was the only person doing the 1km, so although I started with everyone, the finish line was a lonely place, LOL! At least I didn't get lapped my the 5Kers. I hobbled slowly along (see my warning sign on my T-shirt below). Mike shadowed me every step of the way in case I couldn't make it and it was wonderful having his moral support. In all honesty, I would say this took me as much effort as a 10K at race pace. I went home and had a 2.5 hour nap after lunch.
So, long story short, it was a big victory for me, especially because yesterday was a bad day and I didn't think I'd be able to do this.
Here are some pics from the Big Day.
I should have had a flashing light on my head, too!
Yes, I'm afraid the party's over. The Depo-medrol shot is showing signs of wearing off. Not full-blown yet, of course, but the pain and swelling is definitely on the rise again. At least I got two weeks of feeling relatively normal. I see my Rheumatologist in nine days (yes, I'm counting) to start treatment. That can often take two months to begin working the way it should, if its going to work for me. In the meantime, I have my Arthritis Walk in less than a week, depending on how I can move. Mike has offered to walk with me or in place of me if need be. Many, many thanks to all of those who've donated so far. We've surpassed my goal by a long shot!