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.

Thank you for listening!

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

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.

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!

Read the rest of this entry »

Day 10

November 10, 2011

My ankle hurts a lot and I’m still lying around all day resting it, going crazy from boredom. I’m actually waiting for a call back from my doctor’s office. My ankle seems to have gotten worse and more painful over the weekend and I’m wondering if that’s normal. Basically I can’t put any weight on it unless I’m taking the pain meds. When I first wake up in the morning and try to stand on it, it’s so sore and painful. Torture. I hope this is normal for it being Day 10 after surgery. I really don’t want to have to go into the clinic until my scheduled two-week appointment next Tuesday. But really, I’m just worried that something is wrong. I can’t remember it hurting this much last time, five years ago. However I probably blocked a lot of that out of my memory. I hope my doctor’s assistant calls me back soon. HYPOCHONDRIA!

In other news, it was my birthday on Monday. It was a pretty nice day despite being an invalid. My sister took me to a movie during the afternoon – The Rum Diary. Then I went out to eat with the family. It was also my dad’s birthday on Monday so we were celebrating with him as well. My good friend Kenneth in Dublin sent me a really nice birthday gift that arrived yesterday. He gave me this cool graphic-design kitchen towel thing from The Cake Cafe in Dublin. He also sent me a bunch of really awesome postcards of Berlin during the Cold War era. I love that kind of thing and I spent the day messing around taking some photos of the postcards. Oh yeah, and he also gave me these delicious mint chocolate biscuit things. Embarrassingly, I admit that I ate them all in one sitting. Well hey, what else am I supposed to do? They were really good.

Palast der Republik, Berlin, 1982

If you want to see more photos of the postcards and other random stuff I posted recently, check out my Flickr page – http://www.flickr.com/photos/meinherz

Recovery

November 1, 2011

Hi, it’s me again.

Recovery right now includes:

-Green tea
-Bag of ice
-Painkillers
-Netflix DVD: Faraway, So Close! (1993)
-Books: Down and Out in Paris and London by George Orwell; Outliers by Malcolm Gladwell
-Magazine: current issue of Newsweek
-Crochet and knitting projects
-The Internet
-PAIN
-BOREDOM
-Zzzzzzzzzz

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