February 29, 2012
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!
February 13, 2012
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.
February 7, 2012
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.
Check out KFAI online: www.kfai.org
February 4, 2012
A lot has been going on lately with my RA and I really haven’t wanted to talk or write about it. But, I suppose I should give some sort of an update. I’m still on the evil prednisone, but I’m starting to taper down as of today. I saw my rheumatologist last week and he increased the dose to 20 mg (I think I was on 10 for a week or so) for a week and then told me to call him, which I did yesterday. My flare-up has definitely improved since starting the prednisone again but I’m still having pain in both ankles. After speaking with my doctor’s nurse yesterday afternoon, she relayed the message that I’m supposed to start tapering down to 15 mg for four days, then 10 mg for four days, then call the office again. She said that since I haven’t seen a lot of improvement increasing to 20 mg that I should start to taper down. That’s certainly fine with me – I hate being on the stuff. However I’m willing to put up with prednisone’s nasty side effects or just about anything else to make the flare-up and pain go away. My Remicade I.V. infusion was also last Friday so hopefully that will start to kick in.
January 18, 2012
Wow I haven’t posted in nearly two months – sorry for that! Things have been crazy and busy and…challenging. I’m still recovering from my ankle surgery in October and I’ve actually been suffering through a pretty bad flare-up for the last 2-3 weeks. BOTH ankles have been really painful making it difficult to walk or be on my feet much. My hands and wrists have also been bothering me during this time, so I’m fairly confident it’s the RA flaring up and not something else. But who knows. My next Remicade infusion is Jan. 27th so hopefully that will help get rid of it. I also finally managed to speak with my rheumatologist’s nurse today and she told me that my doctor wants me to go on prednisone again for the next couple weeks until I see him on Jan. 26th. Great, PREDNISONE. I’ve been trying so hard to stay off this drug; I haven’t taken it since August. Before that I was able to be off of it for an entire year before a bad flare-up forced me to go back on it again. The thought of taking it now is very depressing and makes me feel anxious and kind of sick inside. But what can I do? The pain and swelling in my ankles is driving me crazy – it can’t go on like this.
November 29, 2011
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.
November 27, 2011
I just read this article on BBC.com about the drug firm Merck & Co. agreeing to pay almost $1 billion to settle criminal and civil charges regarding the drug Vioxx – which was often prescribed for people with rheumatoid arthritis. I remember when Vioxx got pulled from the shelf but I had never taken the drug myself. I did take Celebrex for a while which also has major health risk warnings related to heart attack and stroke (like Vioxx), but it never really did anything for me so I stopped it. Has anybody else had any experiences with Vioxx? Or Celebrex? I’ve been really lucky over the years that I’ve never had any bad side effects from all of the different medications I’ve taken. *Knock on wood* that continues! It’s scary to think about, but a lot of these drugs for RA are very powerful and can be quite dangerous. However it can also be dangerous to not take the medications, which is frustrating.
Check out the article – “Merck & Co. agrees $1bn Vioxx settlement in US”
November 26, 2011
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!
November 1, 2011
My surgery went well yesterday and I’m feeling pretty good recovering today. In addition to the general anesthesia I was given, the anesthesiologist also gave me a localized nerve block for my right ankle/foot, which meant it was basically paralyzed for 24 hours. So, needless to say, I didn’t feel much pain at all yesterday after the surgery. This morning I could wiggle my toes again and the feeling in my foot is starting to creep back. My ankle is starting to hurt now, too. I’m drugged up on some percocet and vistaril, which is pretty nice, I must say. However I’m already bored just lying around on the couch with my foot up. Trying to walk at all is a huge challenge – especially with cumbersome crutches I can’t really seem to get the hang of. I will also have to wear this attractive giant black boot for at least two weeks, depending on how fast my ankle heals. This means I can’t drive until I can wear a normal shoe again. Hopefully I can bribe friends to pick me up and help me escape from the house during the next few weeks.
Good news – after I came out of surgery my doctor/surgeon went to speak with my parents about the operation. He said that the scope showed that my ankle joint is not damaged, so this is really great. He also said he removed scar tissue and damaged/inflamed tissue that was from the RA. I wish I had been able to talk to him myself, like last time, but maybe he figured I was too out of it from the anesthesia. I might call the doctor’s office tomorrow or something to see if I can speak with him.
So that’s the surgery news. I’m glad it’s over. And I really hope it works this time and that removing all of that inflamed crap will cut down on my pain, swelling and immobility. I just want to have a normal ankle again.
October 11, 2011
A lot of things have been happening regarding my RA, and well, with everything really. I’m having surgery on my right ankle again on October 31st (I hope my surgeon doesn’t play any “tricks” on me in the operating room). It’s the same surgery I had five years ago – the doctor is going to scope my ankle to try to see what’s going on in there. Like last time, I have a feeling that he’ll also end up removing inflamed synovial tissue. The frustrating thing about my ankles, the right one in particular, is that nothing ever shows up on the MRIs and X-ray scans yet I continue to have debilitating pain and swelling. As the surgery date gets closer, I’m starting to get more nervous and scared, but I just hope the surgery is more of a success than it was last time. I had my pre-op physical yesterday and I’m good to go. Whoohoo! Happy Halloween, eh?