In 1995, I was reassigned to Diego Garcia in the Indian Ocean. I thought that this assignment would help my "arthritis" since the weather was very warm. I think it probably got worse but maybe felt better sometimes because of the heat. I also started to have what I thought were symptoms of pluerisy (a condition I had when I was younger). This would come and go but I still did not seek medical attention. During this period, I also noticed that my scalp would be very tender to the touch after sitting in the sun for a while. In late 1996, I accepted a transfer to Thule, Greenland. As this location is near the North Pole, I did not think it would be long before the weather conditions forced me to seek medical attention for my "arthritis". What really happened was that I began to feel much better, at least where my joints were concerned. I should interject here that throughout this story I was always extremely tired but I was working very long hours and thought that it was normal to be tired all the time.

In December of 1998, I moved from an apartment on the first floor to one on the third floor. It was then that I noticed I had a very difficult time climbling the staircase. My mouth was so dry all the time that I developed an addiction to eating ice -- (Can you imagine that in the Arctic?), and I also noted that I was having a very heavy monthly flow. I still chose to press on, without medical attention. By August 1998, my condition had worsened to the point that I could no longer walk from my desk to the coffee pot without experiencing shortness of breath. I decided then that I could no longer call this "arthritis" with miscellaneous annoyances.

I returned to the States on the next plane and checked into an emergency room. Initially, I was told that I was having congestive heart failure. I was examined a few minutes later by the resident on duty who said that I was "extremely anemic". A blood transfusion was started and I was admitted to the hospital. The next day I had numerous tests which detemined that I had a leaking heart valve, and uterine fibroids. I was released from the hospital five days later feeling what I thought was 100% better. However, during my follow-up exam, I was told my heart valve would have to be repaired or replaced, that the fibroids would eventually have to be removed, and that the anemia was in check so long as I took my iron pills. I had pretty much resigned myself to having heart surgery when I was contacted by the doctor from the ER who diagnosed me with anemia. He had performed some additional tests and at first thought I had rheumatoid arthritis. Further investigation led him to believe that it was Systemic Lupus rather than RA. He explained Lupus to me and I felt crushed. For some reason, having Lupus upset me more than being told I needed heart surgery.

The doctor explained that he believed the Lupus had attacked my heart and that was why it was leaking. He didn't agree that I should have the operation. Instead, he made a agreement with the cardiologist to treat me for six weeks and if the condition did not reverse itself then they could proceed with the surgery. The cardiologist agreed to wait even though he indicated that he thought the other doctor was dead wrong. I was started on 60mg of prednisone daily for two weeks, then 30mg for two weeks, then 10mg for two weeks. When I returned for my follow up in November 1998, the leaky valve had improved to the point that the cardiologist conceded that there was no need for an operation at that time. My rheumatologist then lowered the prednisone dosage to 10 mg every other day and I continued with the 200mg twice daily of plaquenil.

I returned in August 1999 for a follow up. The heart valve still looked good but the doctor was very concerned with my weight gain (approx. 55 lbs) which could lead to high blood pressure. During the same trip my rheumatologist discovered that I was anemic again. I was subsequently scheduled for a hysterectomy in November 1999. I have just returned from medical leave for that surgery and all went well. I experience a little ache in the joints every now and then. Sometimes my skin feels very sensitive (sore) to the touch. Now that I feel better than I have in 5 years the tendency towards fatigue is very noticeable. I become very depressed sometimes because I know that I may never completely beat this. I am trying to concentrate on getting myself in optimum physical shape. It is often sabotaged by the recurring attacks of fatigue and my laziness. I am afraid but I press on. In the past, before my diagnosis, no one could understand the pain and fatigue involved when I would not want to get up once I had sat down and did not want to pick my nephew up. My family understands better know because I can pick him up and swing him around now and he's three years older and pounds heavier. Friends do not understand the fatigue when I don't want to socialize, but my family is quite supportive.