Happy Memorial Day! Or, Happy Memorial Day weekend! I hope you’re all having a lovely weekend. Mine has been kind of a blur when I stop to think about it. What did I do anyway? Yesterday I went with my parents to visit my grandparents who are buried at Fort Snelling National Cemetery, as well as my aunt at Lakewood Cemetery and my other grandparents at Crystal Lake Cemetery in Minneapolis. I don’t go to cemeteries that often but whenever I do, I’m always glad I went. I love how peaceful they are and how they give you a chance to stop and really remember those you love and the part they played in your life. It’s sad, but comforting as well, I think.
We don’t get out to Fort Snelling that often because it’s kind of out of the way, but I was really glad we went. I still miss all of my grandparents very much; I think I actually miss them more as time passes. I especially miss Nana and Papa, who we visited at Fort Snelling yesterday. My grandma, “Nana,” suffered terribly from rheumatoid arthritis herself until her death. She was such a strong woman though, in so many ways. She always wanted to do things and go places and keep learning in life despite being in so much pain and increasingly disabled from the RA. She also always encouraged me and the rest of her grandchildren to live the same way and to not take life for granted. “Get your education!” she always said. Even though she used to drive me crazy sometimes (she was an opinionated Italian from New Jersey), I admire her immensely. She was her own independent person and most importantly, she was a loving, caring woman who selflessly gave so much to those she loved. All of the work I do to support funding for arthritis research, arthritis advocacy, and arthritis awareness I do not only for myself and the friends I know who also have the disease, but I do it for my grandma. I grew up watching her suffer so much from RA, yet she didn’t let it drag her down. She deserved to have a pain-free life, as do so many others living with the disease today.
Apologies for taking a while to post again, but I’m dealing with an RA flare-up now – my right thumb and forefinger joints are painful and swollen from yard work I did last week. I know I shouldn’t have been raking and pulling weeds, etc., but I was working for a friend who agreed to pay me to clean up his yard. As I am currently unemployed, well, I needed the money. But in retrospect I wouldn’t have done it if I had known my hand was going to flare up. I have a rheumatologist appointment tomorrow and I’m hoping he can give me a cortisone injection to make this go away. I’ve been taking 20 mg of prednisone for weeks and I’m pretty desperate to get off of it.
Anyway, onto the Summit news! I can’t stress enough how glad I am that I decided to attend The Arthritis Foundation’s Advocacy Summit in D.C. The event was incredibly organized and professional which I found impressive. It was also exciting and empowering just to be with people who were all passionate about improving the lives of those who suffer from arthritis. I met so many nice, interesting people who either have arthritis themselves or have children who have the disease. I loved talking with many of them and hearing their own stories. The Summit also ignited much more of an interest and passion in me to continue doing advocacy work. Actually, I think I would really like to move to D.C. if possible. I fell in love with the city almost immediately and could seriously see myself living there. I don’t know how difficult it would be to relocate, but I decided I’m going to try.
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:
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.
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:
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 Fairviewjust 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.
I finally got around to uploading the photos I took last Saturday of the Juvenile Arthritis March (JAM). I think I managed to get some good ones. Check them out on Flickr if you’re interested! Also, all the kids (and some adults) wearing orange T-shirts have some form of arthritis.