I finally finished editing the photos I took at The Walk to Cure Juvenile Arthritis a couple weekends ago. The event is an annual 5k walk that brings out tons of people to raise money to help find a cure for Juvenile Arthritis and support the kids and families who live with the disease. This was my fifth year photographing the walk for my local Arthritis Foundation chapter, and as always, it was great to see all of the people who participated in the event and to be surrounded by so many people who are dedicated to and passionate about arthritis advocacy.
I, myself, was diagnosed with RA when I was 18 (although I started having symptoms at age 17), so I was on the cusp of juvenile vs adult rheumatoid arthritis. My pediatrician gave me a preliminary diagnosis and immediately sent me to see an adult rheumatologist who I stayed with for the next 10 years. During the end of my teen years and into my 20s, I lived a very isolated and lonely life regarding my RA. I didn’t know any other teenagers or college-age people with the disease and spent these young years battling the physical and emotional pain essentially alone. To say it was hard would be a big understatement.
Volunteering at the walk this year, like the previous years, it made me feel happy to see all of these young people and their families coming together to support each other, and to nurture the friendships and relationships they’ve made over the years, as well as forming new ones. It breaks my heart to think of little kids having to deal with the intense, debilitating pain of RA, but I do feel better knowing that many of them are not alone.
It’s 1:15 AM and I’m exhausted but I want to write a little update about yesterday’s events. My Minnesota group met with Senator Al Franken yesterday evening at his office on Capitol Hill. The meeting went well, I think, and he seemed interested and receptive to what we had to say regarding him supporting arthritis issues and the Patients’ Access to Treatments Act of 2012 (H.R. 4209). Supporting this bill would help improve access to medications for people with arthritis which can prevent disability. It would also end the discrimination and excessive cost-sharing of these medications with regard to insurance companies forcing patients to pay incredibly high co-pays and co-insurance because of how many of the drugs are designated as “specialty tier” medications (i.e. biologic medications which cost thousands of dollars per treatment/month – I currently take one of these, Remicade). Even though Senator Franken spent about 25 minutes with us (which is a long time for these meetings, we were told), I admit I am disappointed that I didn’t get a chance to talk to him and tell him my story of living with arthritis. I didn’t even get to say my name! So, yeah, that’s a bummer – especially since he is the one legislator with whom I was looking forward to speaking. Oh well. Hopefully I’ll get another chance sometime.
Today was a really good day though. The weather was warm and sunny and beautiful. Walking around the Capitol was a surreal experience – I couldn’t believe I was actually there. Our group also sat in for a bit on a session of the House and that was really interesting to see. Other fantastic things yesterday included inspiring, motivating speeches and training we had before our Senate meetings. I continue to meet really nice, wonderful people from all over the country who are here for the summit. And, kind of fun, yesterday evening after dinner I did a little radio interview and talked a bit about how arthritis affects my life. These “hometown radio interviews” are supposed to get passed on to our local stations, however nobody can tell me more information about when they’ll air. It was fun to do though! After Day 2 of the summit, I’m incredibly wiped-out and my ankles are killing me, but I’m also more energized and motivated now than I have been in a long time. The inspiration and excitement continues…to Day 3, I hope!
And – I did start to upload some photos to Flickr if you’re interested:
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.