Last week there was an article in the Register about Joy Fawcett, who was part of the U.S.’s gold medal-winning Olympic soccer team in Athens. Fawcett is an O.C. wife and mother of three and was diagnosed with rheumatoid arthritis in 2002. It’s an interesting article that you can read here.
The article said that, according to a survey of 1000 people with RA, two out of three felt that their family and friends underestimated the impact of the disease. I found that very interesting, but I understand why. RA is such an invisible disease. And most people don’t know anything about it. I think most people think it’s a boring old person disease. I didn’t know anything about it until I was diagnosed with it. Let me assure you, it’s definitely not boring! Many of my friends don’t even know the story, so here we go:
During my second year of college I slowly started developing pain in my wrists. First it was just my right wrist; I felt like I had fallen on it and it was sore, except I hadn’t fallen and it was sore for months! Then the same pain started in my left wrist and thumb. Soon, I was not able to move my hands in the mornings when I would wake up; they were so stiff that I could not bend them. My wrists felt like they were bound with duct tape! I had to run them under warm water in the mornings to loosen them up and had difficulty doing everyday tasks like holding a newspaper, pulling clothes out of my closet, brushing my hair, and turning the ignition on in my car. When this was at its worst, I could barely get through a day of school…my hands hurt so much that typing and writing were excruciating and I was so exhausted, I would come home, collapse into bed, and take a four-hour nap to get through a day. I had no energy, was in debilitating pain, and didn’t know why I felt so terrible all the time. I literally could barely function.
After being misdiagnosed for a summer with tendonitis in my hands and doing painful physical therapy, wearing braces on both my hands (not the hippest of fashion statements), enduring a painful cortisone shot directly into my wrist, and trying all sorts of medications (with no relief and only bad side effects), I was finally sent to a rheumatologist. My doctor ordered x-rays, blood tests, and a bone scan. After the results came in, he diagnosed me, at age 21, with rheumatoid arthritis. Yikes.
It took another year after a correct diagnosis to figure out what medication worked for me. I’ve probably taken every anti-inflammatory medication known to man, and two of them have actually been pulled from the shelves because the F.D.A. found them to be unsafe. I took a steroid drug that made me feel horrible, an anti-inflammatory drug that gave me 8-hour headaches, and a chemo drug that made me nauseated for weeks at a time. Nothing was working…
But once we figured out the magic formula, things turned around. I now take a couple of powerful medications, including one that I have to get through a 3-hour IV infusion every eight weeks. I also have to get my blood drawn regularly and get plenty of rest since these drugs suppress my immune system and I still struggle with bouts of fatigue. But really, you would never know I had RA unless I told you. There are some things I can't do, obviously, but I can type 100 words a minute, get through a day of work with very minimal discomfort, and swim four miles a week.
I’m not sharing this for you to pity me or anything. I feel better now than I have in years!! But isn’t this a crazy story? Arthritis is actually a really bizarre disease. There are over 100 types of arthritis, including gout (thanks, Jared Leto, for making gout cool.). RA affects more than 2 million Americans, mostly women. That’s about 1% of the U.S. population. There is no cure but you can treat symptoms and prevent future joint damage.
If you want to be in the know (and who wouldn’t?!) about RA, here’s an informative website.
The article said that, according to a survey of 1000 people with RA, two out of three felt that their family and friends underestimated the impact of the disease. I found that very interesting, but I understand why. RA is such an invisible disease. And most people don’t know anything about it. I think most people think it’s a boring old person disease. I didn’t know anything about it until I was diagnosed with it. Let me assure you, it’s definitely not boring! Many of my friends don’t even know the story, so here we go:
During my second year of college I slowly started developing pain in my wrists. First it was just my right wrist; I felt like I had fallen on it and it was sore, except I hadn’t fallen and it was sore for months! Then the same pain started in my left wrist and thumb. Soon, I was not able to move my hands in the mornings when I would wake up; they were so stiff that I could not bend them. My wrists felt like they were bound with duct tape! I had to run them under warm water in the mornings to loosen them up and had difficulty doing everyday tasks like holding a newspaper, pulling clothes out of my closet, brushing my hair, and turning the ignition on in my car. When this was at its worst, I could barely get through a day of school…my hands hurt so much that typing and writing were excruciating and I was so exhausted, I would come home, collapse into bed, and take a four-hour nap to get through a day. I had no energy, was in debilitating pain, and didn’t know why I felt so terrible all the time. I literally could barely function.
After being misdiagnosed for a summer with tendonitis in my hands and doing painful physical therapy, wearing braces on both my hands (not the hippest of fashion statements), enduring a painful cortisone shot directly into my wrist, and trying all sorts of medications (with no relief and only bad side effects), I was finally sent to a rheumatologist. My doctor ordered x-rays, blood tests, and a bone scan. After the results came in, he diagnosed me, at age 21, with rheumatoid arthritis. Yikes.
It took another year after a correct diagnosis to figure out what medication worked for me. I’ve probably taken every anti-inflammatory medication known to man, and two of them have actually been pulled from the shelves because the F.D.A. found them to be unsafe. I took a steroid drug that made me feel horrible, an anti-inflammatory drug that gave me 8-hour headaches, and a chemo drug that made me nauseated for weeks at a time. Nothing was working…
But once we figured out the magic formula, things turned around. I now take a couple of powerful medications, including one that I have to get through a 3-hour IV infusion every eight weeks. I also have to get my blood drawn regularly and get plenty of rest since these drugs suppress my immune system and I still struggle with bouts of fatigue. But really, you would never know I had RA unless I told you. There are some things I can't do, obviously, but I can type 100 words a minute, get through a day of work with very minimal discomfort, and swim four miles a week.
I’m not sharing this for you to pity me or anything. I feel better now than I have in years!! But isn’t this a crazy story? Arthritis is actually a really bizarre disease. There are over 100 types of arthritis, including gout (thanks, Jared Leto, for making gout cool.). RA affects more than 2 million Americans, mostly women. That’s about 1% of the U.S. population. There is no cure but you can treat symptoms and prevent future joint damage.
If you want to be in the know (and who wouldn’t?!) about RA, here’s an informative website.
1 comment:
wow i never would have known. but seriously we have way too much in common. i mean not the arthritis but the misdiagnosing and crazy doctors and insane pain. i'm so glad you're able to get through your life still. i'm still learning to try to get past it so kudos to you!
Post a Comment