Summit recap

April 30, 2012

Ali, age 8, Washington, D.C.

Apologies for taking a while to post again, but I’m dealing with an RA flare-up now – my right thumb and forefinger joints are painful and swollen from yard work I did last week. I know I shouldn’t have been raking and pulling weeds, etc., but I was working for a friend who agreed to pay me to clean up his yard. As I am currently unemployed, well, I needed the money. But in retrospect I wouldn’t have done it if I had known my hand was going to flare up. I have a rheumatologist appointment tomorrow and I’m hoping he can give me a cortisone injection to make this go away. I’ve been taking 20 mg of prednisone for weeks and I’m pretty desperate to get off of it.

Anyway, onto the Summit news! I can’t stress enough how glad I am that I decided to attend The Arthritis Foundation’s Advocacy Summit in D.C. The event was incredibly organized and professional which I found impressive. It was also exciting and empowering just to be with people who were all passionate about improving the lives of those who suffer from arthritis. I met so many nice, interesting people who either have arthritis themselves or have children who have the disease. I loved talking with many of them and hearing their own stories. The Summit also ignited much more of an interest and passion in me to continue doing advocacy work. Actually, I think I would really like to move to D.C. if possible. I fell in love with the city almost immediately and could seriously see myself living there. I don’t know how difficult it would be to relocate, but I decided I’m going to try.

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Update

April 3, 2012

Palmer Lake, Minnesota

Spring is here and change is in the air, it seems. Lots of things are happening right now – good and bad. My long-term temp job at Fairview just ended last Friday so now I am unemployed again. I have a few job applications in the works, so hopefully I’ll get some good news regarding those. My RA has been flaring up out of control over the last few weeks – my ankles are really painful. I’ve been taking 20 mg of prednisone and it doesn’t seem to be working, so I’m really worried. The doctor’s office is supposed to call me back today sometime. Still waiting. My knees and hands have also been bothering me somewhat so it seems RA is probably the culprit regarding my ankles. My surgery ankle (the right one) has been especially painful. I’m almost tempted to wonder if something else is wrong with it. The D.C. trip is coming up in two weeks and I just hope and pray that my ankles will calm down significantly by then. My remicade infusion is scheduled for Friday so I hope this flare-up will get better once I have that.

Good news – Despite the current flare-up, I’ve started riding my bike again! I rode around Palmer Lake (about three miles) two nights ago and it felt really good to just be outside and getting exercise. My goal is to try to go on a bike ride at least once a day, even if just for a short ride. I want so much to be healthier and to lose weight. I know I can do it if I work hard enough. Sticking with healthy eating and exercising is the challenge though. Cutting out Diet Coke again is another difficult challenge. Ugh.

We’re going to the condos

February 29, 2012

The West Bank, Minneapolis, MN 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!

Monday

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.

Happy Monday!

Baby steps

February 7, 2012

The West Bank, Minneapolis, MN 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

Taper time

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.

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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.

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Infusion time again

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.

Vioxx settlement

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”

New haircut, new ankle?

November 26, 2011

The new 'do

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!

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