July 18, 2011
We’re in the middle of a sweaty, suffocating heat wave right now. Just running across the street to grab the mail this morning was miserable. So, I’d say this means no bike rides for me anytime in the near future. We’re supposed to have temperatures in the upper 90s at least until Wednesday, I think. The dew point is also extremely high, reaching tropical levels (75 deg. last time I checked online). I know talking about the weather is boring and I should be grateful it’s not snowing right now (I am). I do love summer yet the heat and humidity is hard on my body and causes a definite increase in swelling and pain in my joints. My ankles especially are both puffy and very sore to the touch. I’m sure I would be better off living in a drier climate, however Minnesota is home for now – with its sultry mosquito-filled summers and bone-chilling endless winters. Today I’m mostly annoyed that I can’t go on a bike ride or just sit in the backyard reading a book without melting into a puddle on the patio.
In other RA-related news, unfortunately the steroid injection I had in my right ankle almost two weeks ago did not help. I had a feeling it wouldn’t, because I suspect that the problem is in the soft tissue of my ankle and not the actual joint itself. The numerous other cortisone injections I’ve had in the past never helped, but I was really hoping it would be different with this one. I’m dreading calling my orthopedic doctor again about this because I’m afraid he’ll say what he said the last time I saw him in December after he looked at another new MRI scan – “I don’t know what to do.” What DO I do next? Try the Mayo Clinic again? The ankle isn’t that complicated of a joint (not compared to the wrist, for example); I just don’t understand how no one can figure out the problem. I’ve been dealing with these bad ankles since 2005 and it’s come to the point where I’m about ready to have the right one fused. I don’t want to do that but I don’t know what else to do to ease the pain. Does anyone have any insights or experience with this? If so, I’d really appreciate your input.
June 17, 2011
A couple months ago I submitted an appeal to the Peace Corps’ Pre-service Review Board regarding their decision to not accept my application based on my Medical Review. I wrote a post about this earlier when I first got the bad news that I had been rejected from being a Peace Corps volunteer because of having rheumatoid arthritis and the medications I have to take for it. I submitted an appeal to this decision with a statement explaining why I should be accepted and that my RA would not be a problem, citing the fact that I have previously lived abroad. My rheumatologist also wrote a statement on my behalf. Well, obviously my appeal was not sufficient enough and they still rejected me.
“At your request, the Pre-service Review Board (PRB) has considered your case. The PRB has completed its review of your medical information, including the new information you provided, carefully considering it in the context of your medical history and physical findings. We are sorry to inform you the Board has reaffirmed the decision that we are unable to medically qualify you for Peace Corps service.”
Not fair, really, but what can I do? Maybe this is just another case of “it’s not meant to be.” I am getting sick of these not-meant-to-be situations, however. But it probably is a blessing in disguise. Onto the next thing, right. What should that be?
June 17, 2011
I was interviewed a couple days ago for a story about young people with arthritis for ABCNews.com. The reporter contacted me after randomly finding my blog. She was very nice to talk to and I think the story turned out great!
Here’s the link:
June 16, 2011
Sunday night I took photos at Justin Morneau’s Casino Night which has become an annual fundraising event put on by the Arthritis Foundation’s North Central chapter. Justin Morneau is the first baseman for the Minnesota Twins baseball team and started the event in 2009 to raise funds and create awareness about arthritis. He became involved with the Arthritis Foundation after his niece was diagnosed with juvenile arthritis at age two. This was the second year I took photographs at the event as a volunteer, and I think I managed to get some good shots (I hope).
Casino Night sold out this year with over 400 people attending the event. The guests were excited to have the chance to socialize and “gamble” with Twins players while raising money to go toward funding research and services for people suffering from arthritis. Taking photos at Casino Night was a lot of fun, but it was also an added bonus to be able to talk with friends I’ve made through volunteering for the Arthritis Foundation for the last 11 years. Wow, I can’t believe it’s been that long. I’ve been lucky to meet some very kind, supportive, inspiring and fantastic people while doing volunteer work. I can’t recommend it enough.
If you would like to see some of the photos from Casino Night, check out the Arthritis Foundation’s Shutterfly site: http://arthritisfoundation.shutterfly.com
June 4, 2011
May 27, 2011
Another rainy day here. Rain on the outside, tears on the inside. Sometimes. Relationships are hard for everyone, I know, but having a chronic illness makes them even more of a challenge, I think. You’re stressed out, you’re exhausted, you’re in pain, you’re moody and anxious and feeling good one minute and despairing the next. It’s not easy for me to deal with myself, so how can I hope that someone else will want to deal with me? Maybe there are those rare kind people out there who see you for the person you really are, disease or no disease. And accept all of your terrible faults and annoyances, your pain, ugliness and beauty and everything. I really hope they exist, somewhere.
I have a somewhat extensive history of relationships going sour. But I suppose this is normal for anybody who keeps trying to connect and relate to people. Often times even when I’m the one who has been hurt and wronged, the bridge gets burned, yet I still feel the sadness of the loss. I hate fighting with people. And I really hate having to lose people I care about. But again, I suspect that this is a pretty universal feeling unless you are a frigid cold-hearted person and don’t care. Then it’s easy, I assume. Sometimes I wish I could be that way.
Good news – I have recently made up and reconnected with one of those friends. I’m trying out this forgiveness thing, because I know that in the end it’s better for all involved. I’m really grateful for our recent reunion. I’m also incredibly grateful and appreciative for the support of new friends. Cutting “bad” people out of my life is usually very hard for me to do because I don’t want to lose the good things about them, I suppose. And I probably give people too many chances and therefore end up getting screwed over a lot. I know I need to step back and really evaluate my relationships and which ones truly matter. It’s a balancing act. Who do you need or who do you just simply want? And who needs you? I try to keep reminding myself to appreciate and love the people in my life who genuinely do care and continue to support me amidst all of the messes I get myself into. I just wish people would be a little bit kinder to each other. Myself included.
“Live or die, but don’t poison everything” – Anne Sexton
May 19, 2011
This afternoon I rode my bike around Palmer Lake (3 miles around the trail plus a mile each way going to the lake). I haven’t done this for over a month and it felt great to just be outside. Everything is in bloom now and the air smells of beautiful flowering blossoms, which I love. I really hope I can continue to go on these rides and that my knees don’t start acting up again. Getting my bike adjusted might also help. It’s amazing how much better I feel overall getting exercise on a regular basis. The debilitating tension headaches disappear, energy increases, sleep comes much easier and is deeper, and my arthritis usually improves. I must find a way to continue doing this despite the fears of crossing that fine line and overdoing it. The mental and emotional benefits of riding along these trails alone in the silence of the trees and wind and sunshine are also much needed.
I didn’t get very much accomplished today, but that’s okay. I have felt a bit beaten and broken lately. I need to rest and find peace somehow, yet at the same time keep moving forward. Life is waking up again and so am I.
May 2, 2011
April has been such an insane month, full of extreme ups and downs, highs and lows. Where do I begin? I lost my full-time job at Fraser the first week of April. This was a very unexpected blow and I was freaking out for the first few days after hearing the news. Luckily, by some strange twist of fate, another job landed in my lap – a job at a company where I have worked before as a temp. This was a huge relief despite it being temporary. I had been working so hard to pay off my debt and the ever-growing pile of medical bills. The new job actually paid more than Fraser even though it was only part-time. Relief! Happiness! Freak-out over (or so I thought). Long story short, the new temp job was going very well. I was happy to be working there and earning a bit more money while I looked and applied for other jobs that actually interested me. I was excited to find a job opening for a non-profit book publishing company called Milkweed Editions. However, hours spent perfecting my cover letter and resume became hours wasted. I applied and never heard a word from them – even when I sent a follow-up email. This was very disappointing. But, things were going well. I was still off prednisone (it’s been seven months now, I think), I was starting to finally lose a bit of weight (thanks to patience and hard work), and the person I had started dating (I think we were dating?) was proving to be a fun and happy addition to my life.
Fast-forward a couple weeks. My health and RA is good, I’ve got a new job, I’m motivated to apply for interesting jobs that I really want, I’m looking forward to photographing my friend’s wedding in North Carolina in May, and I’m seeing someone that I feel like I have a good connection with and really like a lot. LIFE IS GREAT! Until I get punched in the gut the last week of April.
April 4, 2011
I dragged my bike out for the first time this spring and went on a couple short rides this weekend. I’ve been anxious about doing this again because of the problems with my knees that developed last summer (exacerbated by biking, most likely). The first little ride I did went fine, and it felt so good to be exercising and just being outside in the fresh air. Yesterday I went for a longer ride around a small lake near my house; the trail is about three miles plus the distance to and from the lake. I don’t know if I pushed myself too hard too soon or if my knees are just permanently messed up. But almost immediately after I got off the bike they began to hurt. They’re still hurting today and I’m shuffling around like an old lady. This is very depressing; I was hoping so much to be able to go on bike rides again. Now I’m not sure if I should just wait this out or if I should go back to the orthopedic doctor whom I saw last fall. I want to exercise, dammit! I guess my final option is doing aquatic workouts at Courage Center with a bunch of geriatrics (who probably pee in the pool). Great.
March 28, 2011
Sorry it’s taken me so long to post about JAM, but I’ve been dealing with a particularly painful flare-up for the last few weeks. My right wrist was especially bad, which made typing difficult. GOOD NEWS – the flare-up is much better! And, I didn’t have to go back on prednisone. I just kept trying to eat healthy, stayed off caffeine, took fish oil capsules consistently, and tried to get more sleep. With this mysterious disease, who knows really why the flare-up occurred and/or why it’s now better. I wish I had some answers instead of guesses. I’m so happy to not be in such pain anymore though – I hope it lasts.
Here are a few photos that I took at the Juvenile Arthritis March (JAM) at the Mall of America March 5th. It was my second year photographing JAM for the Arthritis Foundation and it proved once again to be an excellent event. My only complaint is that I feel I maybe got better photos last year. For some reason, the Arthritis Foundation had TWO additional people taking photos. These two girls really got on my nerves by the end of the walk because they kept jumping in front of me “stealing” my shots. I don’t know why three people were needed to take candid shots. But anyway, it was a great experience again and really inspiring to see all of the people who participated in the walk and who raised money for the Arthritis Foundation.
If you’re interested, you can see more photos on the Arthritis Foundation’s Shutterfly site: http://arthritisfoundation.shutterfly.com