Home Community Member Stories Krista Roy

Krista's Story

NZippy1@aol.com 

Where do I begin? I was born in 1972. In the spring of 1975 I was diagnosed with systemic severe Juvenile Rheumatoid Arthritis. It began with one swollen joint, followed by pain. My parents researched doctors and everyone
recommended Dr. Jerry Jacobs to them. From 1975-1995 I was taken care of by Dr. Jerry Jacobs at Babies Hospital at Columbia Presbyterian Medical Center.

In 1976 I almost died twice. I had a gastructomy operation and lost one-fourth of my stomach. At the time I had a 50/50 chance of surviving. I also had pericarditis due to the large doses of steroids I was put on to
control my arthritis. From 1977-1988 I had many hospitalizations. I had many flares in my disease. When I flare, every joint is involved. I also become
severely anemic. I have always needed many medications to control my disease.

I am still on many medicines, even now at the age of 28, including but not
limited to daily steroids, Enbrel, & large doses of Ecotrin. In 1988, I had a bilateral femoral osteotomy operation. Both knees were straightened out. In 1990, I had a scoliosis operation and now I have CD rods in my back. In 1992 I had an inguinal hernia operation and in 1995 I had cataracts surgery. Through the years, I have had many hospitalizations due to my arthritis and complications from my arthritis. By the time I hit the grave, I may be considered the next "Bionic Woman."

In 1997 I had atypical pneumonia and was on a respirator for several days.
This year I also had a severe devastating flare in my illness. All my joints
were affected. I could not move and had to go on many serious immune
suppressive medications. The cumulative effect of 25 years of JRA and this
devastating flare put my hips and knees over the top. I could not walk on
them, leaving me dependent on others. Every time I took a step my hip would lock. Surgery was my only option left. In 1998, I had both my hips replaced and then in August 1998 I had both my knees replaced. I had a knee revision surgery in July 1999 because the plastic part of my artificial knee had cracked all the way through. In October 1999, I had a Hip Revision. I had devastating pain in my left hip that put me back walking with a walker. My artificial hip had literally moved down and out of the socket. In March 2000, the same thing happened with my right hip and I had a Right Hip Revision Surgery. This flare also extremely damaged my shoulders and elbows. I need all four replaced. On March 6, 2001. I had my left elbow replaced. The first two weeks after surgery are always terrible. The pain from the surgery is unbelievable and your joints need to be supported at all times. Once it drops, the pain is unbearable. The first few days in the hospital this time were terrible. My surgeon was supposed to operate on March 5 but due a bad snowstorm he was delayed. Being the last case of the day, he did not get to me until 8pm. By then I was in the recovery room for several hours and that was difficult. Listening to people moan in pain did not help my mood, as I still had not even gone into surgery as of yet. Also, the first few days are tough because I am so limited. The intravenous tubes, my physical limitations, the sling on my left arm, and being 4 feet 8 inches makes it very hard to do even the most basic tasks for yourself, like getting your tray table and eating. In1995 I graduated from college. I have a BA in psychology. I graduated with a 3.1 overall GPA. I went away to college and had a normal college life. July 15, 2000 I married my husband. I have worked. From 1995-1999 I worked at several different jobs. I enjoy reading, investing, trading, and shopping.

From the looks of these pictures, you may see a healthy woman. But make no mistake, I have very damaged and deformed joints. I have extreme limitations. These limitations affect me every day. Not to mention, I am four feet eight inches tall. My small stature is due to my taking steroids during my growth years. My husband and I have to live with my parents because I am dependent on others for constant help with my activities of daily living. I cannot work because I cannot drive at all. My constant pain in my arms or legs makes me very tired. I need rest breaks often. I have very limited range in my arms at this point. Once again, surgery is my last option, as I want to be an independent woman. I have worked very hard to stay as mobile and healthy as I am. I always take my medicine, wear my splints and get plenty of rest. I have always had wonderful doctors and a great support network. I am a brave and self-motivated woman. I am determined to become more independent any way that I can.