January 26, 2013
It’s official – I’m going to D.C. again for the Arthritis Foundation’s annual Advocacy Summit! The Summit this year is March 4-6th and I can’t wait. I registered for it yesterday – the last day to get the “early bird” discount. Hopefully I can get a travel stipend again like last year, because my financial situation is even more dire than a year ago (is that possible?). But being a part of the Summit is really important to me, especially since last year was such a positive, incredible experience. I’m going to contact some people at the Arthritis Foundation who are involved with the event to see if I could also photograph and write about the Summit in some sort of official volunteer way. I’d love to do something like that in addition to being one of the delegates.
Here’s a photo from last year’s Summit of Emily, part of our Minnesota group, reading a letter she wrote for Representative Keith Ellison (I think), sharing her story of living with arthritis.
And here’s a photo of Emily again, along with two other awesome kids (Sammi and Ali) who were part of our Minnesota group. I met and got to know so many nice people last year at the Summit – can’t wait to do it again!
January 22, 2013
“We hold these truths to be self-evident, that all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness.” - The Declaration of Independence, 1776
So I am a day late posting this, but better late than never, right? I didn’t tune in to ALL of the inauguration coverage that was happening yesterday (and before yesterday), but I did catch some of it and listened to President Obama’s speech, which I liked. I’m glad that he mentioned health care reform in it, because of course that is something I am passionate about and support. Publicly debating politics or getting preachy about political issues isn’t really my thing, but I will stand up for what I believe in and I don’t expect others to agree with me. I voted for Obama again this election, as I did four years ago and I’m incredibly happy that he won. I suppose I would consider myself a Moderate Liberal – more fiscally conservative but socially liberal. I’m not for outrageous wasteful government spending (who is, really?), but I also believe in many of the social programs that exist to help people. And of course health care is a huge issue for me and one that has affected my own life, very personally, in so many ways. Speaking of that – I’ve been having some major health and arthritis-related things going on over the last month, which I will update about after this post. I promise!
Health care should not be a luxury or privilege for few, but it should be seen as a basic human right, and this I believe with my whole heart and mind. I don’t blindly think President Obama or the Democrats are perfect by any means, but I do sincerely hope that the President and people across all parties will realize the importance of improving our corrupt, archaic, and broken health care system and will do something about it. There are too many people suffering just in our own country because they can’t get decent, affordable medical care when or if they need it. This is wrong and must change.
Anyway, here are some quotes from President Obama’s speech yesterday that stuck with me:
“For we, the people, understand that our country cannot succeed when a shrinking few do very well and a growing many barely make it.
We, the people, still believe that every citizen deserves a basic measure of security and dignity. We must make the hard choices to reduce the cost of health care and the size of our deficit.
We do not believe that in this country freedom is reserved for the lucky or happiness for the few. We recognize that no matter how responsibly we live our lives, any one of us at any time may face a job loss or a sudden illness or a home swept away in a terrible storm. The commitments we make to each other through Medicare and Medicaid and Social Security, these things do not sap our initiative. They strengthen us.
It is now our generation’s task to carry on what those pioneers began, for our journey is not complete until our wives, our mothers and daughters can earn a living equal to their efforts.
That is our generation’s task, to make these works, these rights, these values of life and liberty and the pursuit of happiness real for every American.”
To read the entire transcript of President Obama’s speech, go here:
December 15, 2012
I went down to Rochester very early Thursday morning for an appointment with an ankle surgeon at the Mayo Clinic. My ankle surgeon recommended I see this guy and I had been waiting many months just to get an appointment. Well, I have the sinking feeling that all of this is just going to be a huge waste. The doctor didn’t seem very positive that there’s anything he can do to help me. He (like so many other doctors I’ve seen) said that since my X-rays and MRI scans don’t show anything, he doesn’t think surgery would help. Or it could make my ankle worse. He does not want to fuse it (I don’t really want that either, but…). He doesn’t think scoping it again will help either. The only idea he had was to refer me back to my rheumatologist to manage my RA. Okay, great. But my rheumatologist doesn’t know what to do either. Since the rest of my joints have been pretty good and stable, my rheumatologist doesn’t really want to switch my medications. WHAT AM I SUPPOSED TO DO? My ankle is constantly noticeably swollen. It’s painful every day. I can’t walk or stand on it for very long before the pain becomes close to unbearable. I’ve been dealing with these stubborn ankles since 2005 when they both flared up out of the blue. The left one got a lot better (it’s still not normal) but the right one has remained in pretty bad shape. I’m at the end of my rope. Do I just have to live with this? I can’t believe that nobody can figure out exactly what’s going on or how to fix it. But anyway, I need to go back to the Mayo next Friday to have new MRI scans for each ankle. And then a follow-up appointment with the doctor after he reads the scans. The only appointment I could get for the MRIs is at 7 AM, which is really annoying. So either I’ll have to drive the almost two hours down to Rochester, leaving my house at 5 AM. Or I’ll have to go down there the night before and spend the night. None of this is very cost-effective, of course. But, I will go back and have the MRIs. I’m not feeling very optimistic right now, but I hope something good will come of this after I have the new MRI scans. If anybody has any advice or insights, please let me know.
December 2, 2012
First off, many apologies for my absence. I’m embarrassed at how long it’s been since I’ve posted on here. I’ll write a proper update post after this one, I promise!
Anyway, I have some exciting arthritis news! I’ve been given the opportunity to write two articles for Arthritis Self-Management magazine, which is based out of New York City. And, I’ll even be getting PAID to do it. Amazing! The first article will focus on young people who have RA and how they deal with challenges related to school and work. The second article will also be about young people with RA and how they deal with issues of relationships, dating, social interaction.
My question for YOU – are there any of you young adults with RA who would be interested in getting interviewed for either of these articles? I have a couple of people already, but I need some more help. Please let me know ASAP. I’d really appreciate it! The first article is due mid-January. Email me at firstname.lastname@example.org.
September 11, 2012
Okay, so I finally called and spoke with someone at the Mayo earlier this week and was told that I wasn’t rejected, but I’m on a waiting list for the physician I want to see. So I will see the doctor, but who knows when. I emphasized my desire to be seen ASAP if possible because my health insurance goes back to crap January 1st. The nurse made a special note of that, apparently. Mm-hmm, sure. Waiting, waiting…always waiting.
Another health update: I was recently rejected by the Mayo Clinic to see a doctor in their Orthopedic Surgery clinic for my right ankle. I had surgery for the second time on that ankle last October and the surgery hasn’t helped and possibly made it worse. I’m beyond frustrated. When I got home from my trip last month, I got a referral from my surgeon to see a foot and ankle specialist at the Mayo Clinic. I guess I’m not totally surprised at this rejection, since it’s difficult to get in at the Mayo. But I’m still pretty upset. I’ll have to get on the phone tomorrow and try to talk to someone about it and see if there’s anything that can be done. They just sent me a lame, generic letter in the mail so I didn’t even get to talk to anybody about it. Wish me luck, please! This ankle must be fixed.
September 11, 2012
It’s getting to be mid-September already and the weather has been cooler and less humid. However today it was a bizarrely balmy 95 degrees. What? Crazy Minnesota weather, I guess. Fall is my favorite time of year anyway, but I love it even more because the drop in temperature and humidity makes my body and aching joints feel so much better – especially my stubborn right ankle. Since returning from my trip to Europe a month ago, I admit I’ve been having trouble staying energized and motivated to get my life together and to get back on track with health stuff (diet, exercise, weight loss, doctor appointments, ankle). However, I did go on a long bike ride around Palmer Lake a couple days ago – twice around the trail! So that’s about eight miles total. My hardcore bicycling friends would probably find that distance rather wimpy, but it was the first time I ever did that, so I was pretty happy and proud. But, um, I haven’t been on my bike since then. Er. TOMORROW! I just can’t ride my bike or do any kind of exercise in 90 degree heat, and I think that’s understandable.
August 14, 2012
August 13, 2012
Hello from Minneapolis! I am actually somewhat glad to be back, surprisingly. Usually when I come back from trips abroad I’m depressed for quite a while afterwards. Since arriving back home from Dublin late Friday night, I’ve felt pretty energized and motivated and in a decent mood. I miss my friends a lot, of course, but I’m feeling positive about finally making some important decisions about my future, regarding my career, moving, creative projects, etc. While the trip was really fun, it was also physically demanding and exhausting, so I’m glad to be home to finally get some rest and to attend to my joints which seem to be exploding with inflammation. This afternoon I left a message for my rheumatologist’s nurse about wanting to discuss with my doctor other treatment options and needing help with what to do next about this stubborn right foot and ankle. Hopefully she will return my call tomorrow and we can get the ball rolling. Strangely, the weather here right now is cooler and less humid than in Dublin and Berlin, so that’s making me feel better.
Also in health news – sadly, I think I have gained back some of the weight I lost just before I left on my trip. Even though I was walking a lot, my careless mass consumption of Croatian/Bosnian/German/Irish beer and delicious bread and pastries probably didn’t help the situation. So now it’s back to tracking calories, self-sacrifice, and near-starvation. I’ll find out what the damage is when I weigh-in Friday. Can’t wait. I did go on a little bike ride today though and that felt good. I’ll have to work my way up to two rides a day again and I’d also like to start swimming on a regular basis, if I can muster the energy to drag myself to the pool (I blame laziness and inconvenience for current procrastination). But seriously, during the entire trip I kept thinking about how much I really do want to be healthier physically and to continue losing weight. It will be a challenge to get back on track after nearly a month, but I think I can do it.
So, that’s the update for now. I took a million photos and I’ll post a link once I get them uploaded if anybody wants to see them.
As always, thanks for reading!
July 31, 2012
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!
July 14, 2012
I received some wonderful news today when I went to my doctor appointment -
I’VE LOST SEVEN POUNDS!!!
Incredible! Especially since I’m currently taking 15 mg of prednisone. Wow. I’m beyond happy about this. And, if I keep doing what I’ve been doing, I should continue to lose more weight (says my doctor). The last time I was weighed there was about three weeks ago. I’m so ecstatic and relieved that my “dieting” and tracking calories is finally starting to pay off. Maybe my metabolism isn’t dead after all?
Well, I just wanted to write a quick post to share with you all my good news. I’m going up north early tomorrow morning for an annual family event and I’m really looking forward to that. However I know there will be a lot of bad food temptations there this weekend and I’ll have to work extra hard to control myself. But I can do it, right? The temperature is also supposed to be in the 90s with high humidity again. Ugh. Maybe it will be too hot to eat. Ha.