Toward the end of sixth grade, I started having bad pains in my legs. I went to my doctor and was told it was a pulled hamstring, and would go away within a few weeks. I waited and waited but the pain gradually moved into my back. My grandma sent me to a doctor in a bigger city who did MRIs and thought I had a slipped disk. I was excused from gym class during seventh and eighth grade. By the end of eighth grade I was getting sick in the mornings. This continued during the summer and intensified when I started high school. I was sick every morning and lost a lot of weight. People said I looked anorexic and I had no energy.

I got a really bad ear infection and went to my doctor who discovered my blood pressure was dangerously high. My doctor thought maybe it was because of the ear infection and told me to come back in 10 days. When I returned, it was still high. She did tests and my blood showed I was anemic and possibly had diabetes.

I was sent up to Des Moines to see a pediatrician who then sent me to a heart doctor. He said I had a minor heart murmur, nothing to worry about. He sent me to the other side of the state to Iowa City where I saw a kidney specialist. He discovered that my kidneys were not getting enough blood because my arteries were narrowed. He set up an appointment to get a stint (a rubber tube placed into the arteries) inserted to open them. This explained my leg and back pain.

After the surgery, I was able to keep food down again and my blood pressure decreased. The surgeons who put in the stint noticed that the artery to my bowels was also narrowing.

A few months later I started feeling sick. Since the surgeon was concerned why my arteries were narrowed, I stayed in the hospital for six days. The second day they told my mom what they had discovered: Takayasu’s arteritis, a narrowing of the arteries which is usually found in young Asian women (even though I am not Asian). They wanted her to call my dad to discuss what to do, but then proceeded to tell us it is fatal, which, of course, scared us to death.

I had not eaten for days in preparation for the surgery and now a doctor told me I could not eat because they were afraid it would clog my arteries. All of this made me so mad. I was given multiple medications, among them prednisone and cytoxen for my arteries; baby aspirin and plavix for blood thinners; prevacid for my stomach, and more.

A few months later they finally did the surgery but afterward I started feeling leg pain again and wasn’t able to walk very far. I was put on a daily injection to thin my blood which didn’t help. So I ignored the pain for months but later an MRI showed that my aorta had shrunk from 1.5 to 0.3 cm, which scared me a lot. I was given a new injection: Enebrel, normally for arthritis, but it helped.

Then my dad got laid off, which meant I lost my insurance and the Enebrel shots are each $500 every two weeks. He got a new job but his insurance won’t cover us. Now I am just hoping I can get this pain in my legs to go away and be the normal me. I weighed 136 before this disease and now I weigh 220. This disease has really gotten me down but I made the honor roll for the first time in tenth grade, which made me feel really good. It is very hard to get through but I hope to somehow overcome this!