It’s not Monday, I realize (sorry, I’m so terrible at keeping with a posting schedule), but here’s another update. Tapering off the prednisone is done for now, thankfully. I’ve been totally off of it for about a week – let’s hope this lasts for a long time! My ankles are doing very well at the moment. I also haven’t been drinking caffeine for a few weeks, which I really think helps keep my arthritis better under control. I can’t prove it, but I have a sneaky suspicion that if I started drinking a ton of coffee and Diet Coke again my ankles would get worse. I shouldn’t be drinking caffeine anyway so this is all good news.
Last weekend I actually left the house and took some photos of the West Bank area in Minneapolis. The tower block apartment buildings I keep taking photos of really fascinate me for some reason. I suppose I find their bleak architecture strangely romantic in a Cold War/Eastern Bloc sort of way (don’t ask, I’m weird like that).
What do you do or want to do when you’re not busy managing your arthritis? I keep trying to remind myself about how important it is to make time to do the things that actually make me happy in life. Photography is one of those things, of course.
Check out the new photos I posted if you’re interested: Flickr photos
It’s icy and snowing here today so I think I’ll just stay home from work. Yes!
I sent emails to my senators and representatives in Washington, D.C. this afternoon urging them to join the Congressional Arthritis Caucus – Senator Al Franken (D), Senator Amy Klobuchar (D), Representative Keith Ellison (D), and Representative Erik Paulsen (R).
To write to your congressmen and congresswomen about joining the Caucus, click here.
Here’s my letter:
Arthritis is our nation’s number one cause of disability-costing the U.S. economy over $128 billion a year. I know firsthand what it’s like to live with this painful disease. And there are almost 50 million Americans who share my pain. That’s why I urge you to join the Congressional Arthritis Caucus.
Please join! I’ve suffered from rheumatoid arthritis for the last 14 years – since I was 18 years old. RA has had a tremendously negative impact on my quality of life and it will continue to have an impact regarding my future. While so many people become disabled by this painful disease, they also are finding it harder to even pay for medications and treatments. I am constantly in medical debt myself due to the high cost of drugs and treatment. I am sad to see that there is NO Minnesota representation in the Caucus yet. I urge you to remember your supporters back home, many of whom suffer from some form of arthritis, and to make arthritis an important issue to address in Washington. Please join the Congressional Arthritis Caucus.
For more information about this group or to join, please contact the offices of Representatives Myrick or Eshoo.
Monday morning. I’m still trying to taper down on the prednisone – at 10 mg now. My ankles feel a little better, surprisingly. I hope this isn’t just a fluke. Too many pills; no wonder I always feel like throwing up in the morning. I suppose I should try to spread out taking them but then I’d probably forget. I’ve started taking plaquenil again too. I had kind of “decided” on my own to stop taking it. Well, it was mostly laziness and forgetfulness that decided for me. I’m determined to get these ankles better so I can take a trip in June. If that means choking down all of these pills then I’ll do it.
Good news! I passed my class at KFAI last night. Well, I’m pretty sure I passed it. After I completed the practical portion, my teacher said I passed as long as I pass the written part (which I think I did). Backing up, for the last five weeks I’ve been taking a board certification class at a community radio station here in Minneapolis. During the class we learned how to use the equipment in the studio and run the board so that we can engineer radio shows if we get board certified. It’s been a really fun class, I’ve met some very nice people and I’m excited to start working on some shows. And who knows, maybe someday I’ll even end up with my own show there.
KFAI is volunteer-run and is made up of a great mix of creative, diverse people and shows, which I find impressive. Whatever happens, I’m just really happy that I completed the class and that I’m starting to make some real efforts at doing things in life that I’m actually interested in. I’ve neglected this for far too long, for some reason. It also feels good to actually finish something. Usually I’m the queen of starting projects and then becoming distracted and forgetting about them. Not this time! And I’m excited to see what comes my way next – at KFAI, with photography stuff, writing, and whatever else I want to try. It’s hard when I’m in considerable pain most days, lethargic, cranky, depressed – but I know I have to keep moving forward. This little class at KFAI has been good inspiration for that. I want to feel like a living human being again and not just some robotic lump of flesh that swallows pills and goes to doctor appointments.
I had my Remicade infusion yesterday and it went fine, as usual. And it was boring, as usual. There was a young girl in the “infusion bay” next to me who was watching TV and had Ru Paul’s reality drag show blaring. So annoying. There was a young guy in another bay blabbing really loudly too, which was also getting on my nerves. If I have to sit hooked up to an I.V. for three hours I’d prefer it to be quiet, but eh, what can you do? I had planned to read a lot more of my book but instead wasted a lot of time playing with my new iPhone. So addictive! That’s all I have to report, really. I’m glad the infusion is done until the next one in eight weeks. Then I’ll have to start fighting with my insurance company and deal with the stress of getting financial assistance for the year. My insurance “starts over” January 1st AKA turns to crap. I know I shouldn’t complain though because at least I have insurance. I can’t imagine what it must be like for people who have RA or other chronic illnesses who can’t afford insurance. It’s criminal, really. I end up paying a ton in out-of-pocket costs, but I’d be so far in debt if I didn’t have any insurance.
Ah, what else is new? I drove again tonight for a bit. Exciting! I also have not taken any pain medications today, although I might have to pop a Percocet before bed. Ok, I’m going to go watch a movie or something.
Sorry I’ve taken so long to post again. I’ve been busy, ah, lying around being bored and feeling pathetic, I guess. Actually it’s been almost four weeks since the surgery and my ankle does feel better, which is wonderful. I drove for the first time today which was very exciting (it really was). I only drove a short distance though so I’m not sure how far I can go without it hurting too much. I don’t want to aggravate it and set myself back, of course. I’m dying to get out of the house though!