Guten Tag! Hello from Berlin, Germany. I arrived late Saturday night from Dubrovnik, Croatia. Sorry I haven‘t posted until now but I‘ve been running around with friends in Croatia and Bosnia for the last week and finding fast, convenient Internet access challenging. There have been many challenges on this trip, not surprisingly, but I‘m glad that I decided to do the trip and meet up with friends over here. Croatia and Bosnia were beautiful and incredibly interesting places despite the oppressive heat of Croatia. Swimming in the Adriatic Sea felt surreal, surrounded by gorgeous, towering mountains. We tried to hit the beach quite a bit which was cool and swimming in the sea helped ease the pain and throbbing of my continually swollen right foot and ankle. The intense heat and humidity of Croatia (Bosnia was better, thankfully) definitely was not good for my RA – my foot and ankle ballooned to a disturbingly large size by the end of each day. But I just tried to deal with it the best I could, like I am doing right now in Berlin. Luckily the weather is much cooler here so I feel better overall physically. Traveling is exhausting though – I always forget that until I‘m back doing it again, dragging heavy luggage and bags, walking miles, rushing through airports. Then I think, Why am I doing this to myself? Because I love to travel. I think? No, seriously, I do love traveling to new places, and especially to different countries. But traveling while living with a painful chronic illness is very difficult. And it takes patience and empathy and understanding from those around you, your traveling buddies and friends, and from yourself. I have to keep reminding myself that it‘s okay to go slow and to take my time and to listen to how my body feels. Getting upset because you can‘t make it to all of the sights isn’t worth it. It also isn‘t worth it to feel guilty or anxious that you might be holding others back or slowing them down because of your own physical limitations. However, that is easier said than done. I admit I‘ve been struggling with that since the start of the trip. I hate feeling like a burden or that my RA is annoying other people. They are friends, so they should be understanding of course. But even friends can‘t really understand what it‘s like to just get through a normal day while being in considerable pain, never mind running around to different countries and cities.
Anyway! I am having a great time and it‘s been fun seeing old friends again, whom I haven‘t seen since 2007 (wow -it’s also kind of freaking me out thinking about how much time has passed). Visiting Croatia and Bosnia (Mostar, Sarajevo) are my favorite parts of the trip so far and I definitely want to go back there. It‘s been cool seeing old ‘haunts‘ in Dublin and Berlin too, despite feelings of disorientation and bittersweet nostalgia I‘ve been experiencing. I‘m mostly just trying to have fun with friends and to do my own thing a bit (taking photos) which will hopefully give me some much-needed motivation to get my own life in order when I get back home.
Well, I think it‘s time to end the rambling here. The sun is shining in Kreuzberg now (the area in Berlin where I‘m staying) and I should get out of the house and go for a bike ride or hit some museums. Time flies when you‘re drinking giant mugs of beer and embarrassing yourself speaking broken German.
P.S. Good news – I am still losing weight, despite basically having to throw my pre-trip “diet” out the window. I‘m guessing I‘ve lost at least a total of 10 lbs by now. I‘m excited to weigh-in once I get back home!
I can’t believe it’s July already; so many things have been happening – good and bad, as usual. I’ll get the bad out of the way first, I suppose. With great frustration, I’m back on prednisone again because my right foot (toes, ball of my foot) has been flaring up pretty bad for the last 2-3 weeks. It’s definitely swollen and my toes hurt and are tender to the touch. My right ankle has also been worse, so basically I just want to chop off my entire right foot starting at the ankle. For the past month I’ve been working so hard on improving my diet and tracking calories in order to lose weight, and being back on prednisone is making this even more of an uphill battle. I’m simultaneously really angry and depressed about it. And about the fact that I don’t seem to have lost one single pound yet, despite drastic calorie cutting and an increase in my bike riding. I don’t know what to do except keep on with it and try to have patience. I did make an appointment to see an endocrinologist at the University of Minnesota Medical Center’s Weight Management Clinic. I have to wait FOREVER to get in to see the doctor though. But once I get in for my appointment I really hope someone can help me. Doing all of this work with no results is really disheartening. I think my metabolism is dead.
Well! I just got a good surprise! I discovered that my guest blog post for Creaky Joints was published last week. I didn’t even know! It’s really cool to see it published and I’m grateful they gave me a chance to post something for their site. Hopefully I can do more of it sometime in the future.
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.