March 9, 2012
I’ve been trying to get more involved doing arthritis advocacy work and recently I’ve been sending emails to my senators and representatives in Washington, D.C. urging them support various arthritis issues and legislation. Here’s the transcript of the email I sent today to Representative Erik Paulsen (R). I have no idea if he actually reads any of these, but I figure that it can’t hurt to try, so I’ll keep sending them. Hopefully someone is reading them.
If you want to send an email or letter to urge your representative to support this legislation, click HERE.
Please Co-Sponsor the Patient Access to Critical Therapies Act!
March 9, 2012
Dear Representative Paulsen,
As someone deeply concerned about arthritis, I am writing to ask you to
become an original cosponsor of legislation to improve access to the
critical treatments that can keep me, and my loved ones, active and
productive citizens. Biologic drugs can now prevent patients with
conditions such as rheumatoid arthritis, lupus, and psoriatic arthritis,
from becoming disabled, seriously ill, or even dying.
Unfortunately, many health insurance policies are moving these critical
medications, such as biologics, into “specialty tiers” that utilize high
patient cost-sharing methods known as “co-insurance”. This
fourth/specialty tier now commonly requires patients to pay a percentage
of the cost of medication – anywhere from 20% to 50%, which can often be
hundreds or even thousands of dollars each month for a single medication -
rather than a fixed co-payment amount.
Congressman David McKinley is introducing legislation later this month,
the Patient Access to Critical Therapies Act (PACTA), that would treat
these specialty drugs the same as Tier III non-preferred drugs. Under his
legislation, commercial health insurers would impose the same co-payment
obligations for specialty drugs as they already do for Tier III
medications. Providing insured patients access to these treatments will
allow me and many more of your constituents to remain in the workforce,
raise their families, and avoid becoming permanently disabled or seriously
I urge you to step forward and become an original co-sponsor of PACTA and
support your constituents who have chronic, life threatening, and
disabling conditions. Please contact the Legislative Health Assistant in
Rep. McKinley’s office, at x54172, to become a co-sponsor of this
I have been on several of these “specialty” biologic drugs since about
2003 and I am also constantly in debt and trying to keep my head above
water to pay for these medications. If I don’t have the medication I will
most certainly become crippled. There are so many people out there in
similar situations to mine, and it’s not fair that we must be at the mercy
of the insurance companies and the drug companies just in order to live a
relatively normal life. People shouldn’t have to suffer because they can’t
afford to pay for medications. Please help.
Thank you very much.
March 2, 2012
Tomorrow morning the Arthritis Foundation, Upper Midwest Region chapter, will be hosting its annual JAM (Juvenile Arthritis March) fundraising walk at the Mall of America in Bloomington, MN. I will be arriving at the event at an insanely early hour to get ready to take photos of the walk. This will be my third year photographing JAM and I’m looking forward to it, of course! It’s always so wonderful to see all of the families and kids who participate to raise money to find a cure for arthritis. Coming together as a group for an important cause really is an inspiration (maybe sappy, but true). I’ll post some of the photos of the walk soon – hope I get some good ones!
For more information about JAM and how to get involved, click here:
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 17, 2012
Ok, I did it. I registered today.
I’M GOING TO D.C. IN APRIL!!! Whooo!!!
February 16, 2012
So…should I go? I signed up last year and then canceled because I was going through a weird time of having anxiety attacks (see older posts for more info on that). I’ve been wanting to go to this summit for a few years now and I keep finding reasons (excuses) to not go. Well, the main reason is that I can’t really afford it. Right now I’m trying so hard to pay off bills and to get out of debt. Yet here come the expensive medical bills once again. It’s a never-ending cycle.
Anyway! I’m also bummed out that I missed the chance to apply for two different travel grants/scholarships offered by the Arthritis Foundation for the summit. I’m always missing deadlines, dammit! But, you know, my instinct keeps telling me to just go for it. I would love to be able to meet with members of Congress to urge them to support funding for arthritis research and other arthritis and health care issues. It’s something that I’m very passionate about and I want to get more involved with the political side of advocacy.
Here’s more info online about the summit:
February 14, 2012
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
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
For more information about this group or to join, please contact the
offices of Representatives Myrick or Eshoo.
Thank you for listening!
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.