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 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