September 2, 2011
The New York Times article: Williams Says She Struggled with Fatigue for Years
Tennis star Venus Williams just recently withdrew from the US Open tournament announcing that she has Sjogren’s Syndrome, which is an arthritis-related auto-immune disease. I heard the news on the radio when I was driving home from work last night and I immediately felt surprised and really sad. If she has been having any joint pain and fatigue similar to RA, I can’t imagine how she can continue to play tennis. Hopefully she will get on a good treatment regimen right away and that she won’t have to give it up.
In 2004 I was diagnosed with Sjögren’s myself after waking up one morning with extremely dry and inflamed eyes. It was horrible and probably the worst pain I have ever experienced in my life. My vision became blurred and I felt like I had shards of glass cutting into my eyes. The only relief I got was when I was asleep; my time awake was torture. After waiting a month to see a dry eye specialist (I fault my former rheumatologist for this), I finally got in and had tests done to try to determine what was really going on. I was scared to death that the inflammation was attacking my tear glands and that my eyes would never be normal again. Luckily, my tear glands were fine and were producing enough tears. It was my tear quality that was bad resulting from inflammation of my eyelids, also known as blepharitis. After using steroid eye drops and other drops and tedious home remedies, my eyes finally returned to “normal” after about a year of dealing with this. I have little flare-ups from time to time but thankfully my eyes have never gone back to being as bad as they once were. However, I still can’t wear contact lenses (which makes me really mad and depressed because I hate glasses).
My heart really goes out to anybody who suffers from Sjögren’s Syndrome because I know how incredibly painful and frustrating it can be, emotionally as well as physically. I hope Venus will get the care and support that she needs having this chronic disease.
August 31, 2011
My ankles are worse again – puffy, swollen, painful. They had gotten a lot better recently and now they’re back to how they were before. I was so happy because I (wrongly) thought they were going to stay better.
Will my life ever stop being such a roller-coaster?
August 22, 2011
Both of my ankles are extremely swollen and I’m sitting here with a bag of frozen corn on the left ankle and an ice pack on the right one. The right ankle is especially huge, and I’m trying to not freak out. They’ve never been like this before, so it is worrying. And of course I made the stupid mistake of trying to find some information online. After typing “What causes swollen ankles?” into Google, I was immediately bombarded with a million posts warning of heart attacks, strokes, blood clots, lupus, kidney failure, etc. etc. So now of course I think I’m suffering from all of those afflictions (at once) and that I’m probably dying. Umm, anyway. I guess I will give this a couple days before going into any sort of panic mode. But once again I’m faced with the frustration of something going wrong with my body and not knowing if it’s from the RA or something else. I’ve learned how to deal with the “devil(s) I know,” but find myself feeling incredibly anxious and scared when something new and strange pops up. I really hate my body sometimes and all of the unnecessary worrying and pain it causes.
Well, on that note, my corn is thawing so I better dig in the freezer for some peas. I really hope this goes away soon.
August 15, 2011
Several months ago I was interviewed by a Stanford University student for a project she was working on involving art and biology. More specifically, she decided to focus on rheumatoid arthritis as an example of an auto-immune disease. The student, Catherine, had randomly found my blog and emailed me asking if I’d like to participate. She described the project a bit over email, which sounded really interesting, so I said sure, give me a call. It was maybe a week later that we spoke on the phone and I became quite impressed with Catherine and her ideas after hearing more about the project. She explained it better than I can, but basically she said that she planned to interview several people with RA and then in a series of drawings (of cells, body systems, etc.) she would use their exact words to form the images she would illustrate. As we spoke, I became very excited and inspired hearing her tell me about her studies and what she was doing. The biology and science of RA is something that I’ve been forced to learn about, you could say, and it is a constant presence in my life. I have also always loved art and seeing new ways one can express him or herself through it. Catherine asked me a lot of questions about my history of having the disease and about my life in general. She wanted to know what it feels like having RA and what my fears, hopes, and joys are (if any). We chatted for about two hours with her also tape recording me. She was a very lovely, sweet person to talk to and I feel grateful to be a part of her work at Stanford. But anyway – last week she emailed me a video clip of her presenting her project. She’s also supposed to email me scans of the actual artwork sometime in the near future, which I will post when I get them. So here’s the video clip. Arthritis and art, crazy huh?
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?
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 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.
February 23, 2011
Living with a chronic illness such as rheumatoid arthritis can be so unbearably frustrating and maddening because of the unpredictability of the disease. I live each day with much uncertainty, never knowing when RA will strike next and where and how strongly. Having RA continues to teach me new things in life, and many of these lessons are often painful, defeating and anxiety-filled. It constantly tests my patience, and when I stop to think about it, I’m not sure if living with this disease has made me a more patient person or the direct opposite. When it comes to dealing with problems I am a very impatient person in general. I want to know WHY something is happening or going wrong. I want to analyze it to death in order to find an answer (so I can then fix it somehow). Usually all this does is cause more anxiety while driving myself absolutely crazy. Why is this happening to me? Now what’s wrong with my body? Is it the arthritis or a “normal” health problem? Is another part of my body going to become damaged? What’s going to happen to me? Will this ever go away? The difficult questions go on and on.
I just started reading Speaking of Faith by Krista Tippett (I like her radio show a lot despite that her voice annoys the hell out of me). In the book she quotes the German poet Ranier Maria Rilke and the quote has really stuck with me since reading it the other day. When first reading the passage, his views on dealing with questions in life seem very straight-forward and maybe even easy. It’s not so easy though to shut off your brain, those anxious questions and worries, and to instead just live. Regarding all of the RA questions that are constantly running through my mind, I do try to live life one day at a time. If I really stopped to think about all of the frightening possibilities RA can bring, I would probably be locked up somewhere in a straight jacket in a constant state of panic. As I wrote about in some previous blog posts, I have been having a difficult time dealing with a strong bout of anxiety lately. I’m working on it and I know I’ll get better, even when my neurotic hypochondriac self doesn’t think so. But reading Rilke’s advice in Krista Tippett’s book hits home. I hope you like it and can find some reassurance in it as well.
…to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.
-Rainer Maria Rilke, Letters to A Young Poet
*Ich glaube an alles noch nie gesagte – I believe in everything that has not yet been said – Rilke
February 22, 2011
Sorry, I know I forgot to post yesterday. However it was a strange Monday which felt more like a Sunday, so…ah, yeah. I also didn’t get out of my pajamas all day (lazy). Surprisingly my work was closed due to a crap-load of snow we just got Sunday and yesterday. I’m so sick of this weather. CABIN FEVER. Will Spring ever come? I am growing more and more doubtful. And restless.
In RA news, my right hand and wrist are starting to flare up. I’m a few weeks overdue for my Remicade infusion, so maybe that’s why. I just scheduled my Remicade appointment for Friday afternoon, so it will be good to get that over and done with until the next appointment in April. Not surprising, but I also found out recently that PANF (Patient Access Network Foundation) is currently out of funds, so after this infusion Friday I will have to pay all out-of-pocket costs for my future Remicade infusions unless they get more money. This is worrying, but it has happened and worked out in the past so I hope by the time I need another infusion they’ll have more funds for RA. I just can’t afford to pay $1,000 every two months for one medication.
TONIGHT is Week Two of the karaoke contest at Grumpy’s. The theme this week is “the 70s” – I think I’ll be singing Hanging on the Telephone by Blondie and Heroes by David Bowie. KARAOKE MANIA! When my RA or the weather or any other little stupid thing is getting me down, it’s always really great to get together with friends. I can’t wait for tonight. Hope I don’t bomb.