Monday, February 25, 2008

Help a Friend of a Friend Out?

A good friend from college (and someone I admire more than I can say) needs your help. While in college, she discovered she had (and still has) rheumatoid arthritis (RA). She needs your help. If you all can donate any money at all to Arthritis Foundation, I hope you will.

This is her account of what happened. These are her words from her Livejournal:

As many people who read this journal already know, I have rheumatoid arthritis (RA). I'm working with the Arthritis Foundation again this year, this time as the Event Chair of the Roanoke Arthritis Walk, and I thought I would share my arthritis story in the hopes that people would like to contribute to the cause.

I developed RA, an autoimmune disease that causes the body to attack its own joints, five years ago when I was 21. At the time, my biggest worry was finishing my thesis. I thought that arthritis was something that only happened to the elderly.

But I had started developing strange symptoms. I had a swollen spot on the back of my hand and my back hurt when I got up in the mornings. At first, the Health Services doctor thought I had an overuse injury from working out. She said it was unusual for someone my age to develop arthritis. But my symptoms kept getting worse.

In December 2003, I was a healthy college student who exercised several times a week. By March of the same year, I was having trouble dressing myself and putting my shoes on because my hands were so swollen and stiff. Many of the buildings on my campus (Hollins) were old and had no elevators. I remember that trying to walk up two flights of stairs to get to Spanish class was very painful and difficult. I stopped eating breakfast in the cafeteria, because it was too hard to walk from my dorm to the cafeteria, a distance that is probably equivalent to a little more than a football field.

I was officially diagnosed with rheumatoid arthritis in July 2003. My symptoms got even worse after I graduated college. I literally couldn’t close my hands into fists. I tried not to get down on the floor because I was afraid I wouldn’t be able to get back up again. I had to start taking showers instead of baths because it was too hard to get in and out of the bath tub. I turned down invitations to go to the movies because sitting in the same place for two hours was so painful it felt like someone was sticking knives into my hips and back. Every morning when I got out of bed, I had to grab the edge of my desk to keep from falling. I had to move my glasses from my bureau to my desk, which is only about five feet closer to my bed. But those five feet felt like five miles.

I started taking a drug called methotrexate to suppress my immune system. It makes me feel nauseated, fatigued and spacey for at least one day. The best way to describe it is I feel like I’ve had the flu one day every week for the last four years. I also started taking one of the biological drugs, Humira, which I inject into my stomach every other week. Right after I began taking Humira, I had a strange feeling whenever I got up out of a chair. Then I realized the reason I felt weird was because my hips didn’t hurt when I stood up, the way they had for the past year. Since starting my drug regime, I have improved so much that most people don’t even realize that I have health problems. Sometimes my mom tells me, “You bounce around the house just like the old Kelly again.” There are times now when I forget that I am sick, until I type or staple a lot of papers or stand up to cook and it starts hurting me and I remember that it's not normal for these tiny, everyday things to cause pain in a twenty-six year-old person.

Even though I know I’m one of the lucky ones, I still grieve for the life that I should have had. When I was diagnosed, I thought I had another 40 or 50 years of good health ahead of me. Instead, I never got to be young and carefree and healthy again. The expense of this illness is devastating. I can't be a 100% sure about this, but I estimate that my out-of-pocket medical expenses over the last two years have been close to $10,000. I’ve had to spend more than $1,000 on medical expenses in a single month. I never imagined that I would have to live with my parents at my age, but I can’t afford to pay for my medications and live by myself.

I don’t know how to plan for the future when I don’t know if I’ll still even be able to take care of myself. I can’t imagine losing the ability to brush my own hair or dress myself. I don’t know how to tell a potential boyfriend that I have a chronic, incurable illness. People think about having to care for a disabled spouse when they’re 70, not when they are 30. I may never have my own biological children, because you are not supposed to get pregnant on the extremely toxic medications that I take. If I wanted to have a baby, I would have to stop taking my medicines, which would put me in a lot of pain and risk irreversible joint damage if I stayed off them too long. I don’t know what will happen to me after my parents die if I do become disabled. I feel like will always be a terrible burden on the people who love me.

I know I’m so lucky to have gotten this second chance at leading a normal life—to be able to exercise again, open jars by myself and go on walks with my dog. Four and a half years ago, it seemed entirely likely that I would be significantly disabled by this point. The most important thing that I am doing with my second chance is working with the Arthritis Foundation to help educate people about arthritis and raise money to fight this disease. Volunteering with the Arthritis Walk has given me the opportunity to help myself and other people who suffer from arthritis.

Much of the money that is donated to the Arthritis Foundation goes toward sponsoring research. The medications that have allowed me to get better were only developed in the last 15 years. Without the medical breakthroughs that the Arthritis Foundation helped fund, I might be in wheelchair at this point. Fifty, thirty, or even twenty years ago, it would have been inevitable that I would become disabled. The research that the Foundation supports is giving me a fighting chance to have a normal life.

If you are interested, you can donate to the Arthritis Foundation at: If you would like to post a link to this entry in your own journal or blog, I would greatly appreciate it.

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