April 18, 2012
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:
Ok, time to pass out.
April 16, 2012
Well I made it to Washington, D.C. today and through the first day of the Arthritis Advocacy Summit. Most of the day was spent traveling though, so I am really exhausted (I only got about three hours of sleep last night, which didn’t help). I made it in time for the group dinner and first advocacy training which outlined our agenda for the rest of the summit and especially our Senate and House meetings on Capitol Hill. Tomorrow are the Senate meetings. This morning and during my flights I was feeling kind of anxious and nervous about participating in the summit – not knowing what to expect, I suppose. But after meeting up with my friend Trish (who works for the Arthritis Foundation’s Upper Midwest Region chapter and is our group leader) and then meeting the other people in our group, I feel much more comfortable and excited about being here. Listening to other leaders speak about what we’ll be doing on Capitol Hill was also really inspiring. So yes, I am VERY GLAD I decided to do this! I’m excited to see how the meetings go tomorrow and to just be on Capitol Hill and being a part of our governmental process. I hope I’ll be able to pull myself together and sound halfway intelligent when I have to speak to the legislators to tell them about my passion for arthritis advocacy and about my own personal story of how arthritis affects my life. I think I can do it though.
Anyway, I just wanted to give a little update on Day 1 of the summit. I’ve already met some really nice people from all over the country who all have incredible arthritis stories of their own. And I’m quite impressed with the event so far. I’ll try to update every day while I’m in D.C., but now I must collapse into bed.
IGNORING ARTHRITIS IS UNACCEPTABLE!
April 11, 2012
Yesterday I began taking photos again for the non-profit Cycles for Change at one of their Learn to Ride classes. Despite the very chilly weather, it was great being outside and getting back into the swing of photographing these bike classes and events. All of the students were young adults; half had never ridden a bike before and the other half were fairly new riders. It was heartwarming and humbling to see the students trying very hard just to ride a bicycle. Many of them are immigrants and want to be able to ride a bike for exercise, transportation, and to help make integration a bit easier, it seems. As Americans, most people learn to ride a bike as a kid and don’t give it much thought afterwards. I was silently (and a few times not silently) cheering them on yesterday remembering my own frustrations and excitement as a child trying to finally ride my bike for the first time all by myself. Yesterday’s class only reinforced how impressed I am with Cycles for Change and the work they do in the community. Volunteering there also makes me want to be healthier, more physically active, and maybe even a “real” biker someday.
Speaking of bikes and trying to be more physically active (despite these bad ankles at the moment), I’m disappointed that I haven’t been able to stick to my goal of a bike ride a day (yet). But! The sun is shining this morning and I think I will bundle up and head over the Palmer Lake and its three-mile bike path. I’ve been wanting to go on some rides in the morning but so far I haven’t been able to drag my butt out of bed early enough. Tonight I’m photographing one of Cycles for Change’s Bike Library orientations. This is another excellent program offered to members of the community through the organization and various other Twin Cities organizations. I’m looking forward to it!
Here’s a nice recent article about Cycles for Change if you’re interested:
April 3, 2012
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.
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: