One winter while I was in the midst of applying to medical school, I began having muscle and joint pain in my arms, legs, and hands. The pain was accompanied by a fever of unknown origin. The symptoms came as a sudden onset, not gradual. I made several trips to the ER and had a ton of blood drawn to determine the problem. After a month of ER visits, I was referred to an Internal Medicine doctor for further evaluation.
After a few visits and many labs, I was told I was severely anemic and needed to see an Oncologist and Blood Disorders Specialist. I was given iron pills that made me sick to my stomach so I was taken off of them. I had lost 20 lbs and I lost the color from my skin. I was so pale and skinny, I looked like death walking. I was tired all the time and the pain was so bad it was a struggle to get up and take a shower. I had to withdraw my medical school applications because I was too sick to go on interviews in the secondary phase. My iron level kept going down, my white blood cell count kept going up, and my sed rate was 95 (normal value is 1-20). They thought I had cancer so I underwent a bone marrow biopsy. The procedure was pretty painful, but the results were cancer free. I was started on iron infusions to help the anemia. This didn’t help with the pain though.
For two years, I had undergone multiple doctors visits, cat scans, MRI’s, iron transfusions, weekly blood draws, and a great deal of pain and frustration. I would still go to work but it felt like I was 95 years old in the body of a 22 year old. I didn’t go out with my friends because I was so pale and weak. I didn’t want anyone to see me looking like that. If I went out, I didn’t take any pictures because of the way I looked. I developed GI issues and had a colonoscopy, upper GI, and barium swallow. I developed IBS and terrible reflux. A rash appeared on my face across the bridge of my nose. I wore concealer daily to cover the discoloration. I was miserable and tired of being in pain. I wanted to die, I felt like no one should have to live in pain everyday. My doctor had retired so I was sent to a new doctor and after 2 years of pain, I was finally diagnosed with systemic lupus. I didn’t know a lot about lupus then. I just knew that people get really sick and can even die from it.
After I was given the diagnosis, I was started on a very high dose of prednisone. It was the worst thing ever. I developed migraines from the prednisone and I later developed Cushing’s disease from long term steroid use. My face was so fat and puffy. I was still very miserable. I felt like I had lost a battle and wasn’t getting any better. My doctors did not have a good prognosis. They didn’t think I would live past 25 years old. I was at peace with dying at that point. I just wanted my life back. Just when I had given up, I started getting better. I was weaned down and eventually off the prednisone. My pain was decreasing day by day and I was starting to feel like myself again. I developed some minor respiratory issues and reproductive issues also.
I am 32 now and have been in remission for almost 6 years now. I went back to school and became a nurse. I still have minor flare-ups from time to time but have been off prednisone for 5 years. I can honestly say I fought and I am a survivor. It definitely wasn’t easy. I still see my doctors just to make sure everything is okay. I had to make some life style changes to keep my lupus at bay. I feel like I missed out on 2 years of my life fighting lupus and I feel like this is my second chance to live life to the fullest. There is nothing in this world I can’t do. Fighting lupus was the hardest thing I have ever done.
I Fought Like A Girl and Won!!!!!! Lupus messed with the wrong girl 🙂
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.