My name is Emily and on September 1st, 2011, I went into work feeling a bit drained. I am a teacher, so I brushed it off as I am used to being a bit tired. During my first hour planning period, I noticed what looked like hives on my right forearm near my wrist. It quickly spread midline, so I went downstairs to the nurse. She took my temperature and it was 104. I was told to go home and to make an appointment with my family doctor.
By the time I met with my physician that same day at 1:00 pm in the afternoon, my arms and legs were covered in what looked like quarter sized raised welts and they no longer looked like hives.
The welts did not itch but burned like tight dry skin from a sunburn. My doctor, gave me a shot of steroids and an anti-histamine shot; yet, after 30 minutes, you could see the welts spreading quickly. I was admitted to Deaconess Hospital in Evansville, IN, that evening because I started to have so much joint pain I could barely walk. I was in the hospital for six days without a clear diagnosis.
During my inpatient stay, I saw an Infectious Disease specialist, a new Dermatologist, Rheumatologist, Hematologist, and an allergist. Numerous tests only indicated that my white blood cell count was triple what it should have been. I had clear signs of inflammation, a vitamin D deficiency, and an extremely high total CK (showing signs of muscle deterioration). My joints were so inflamed and muscles were so sore that I was unable to walk for about two days. When I did walk, it was a rigid, uncomfortable, wobbly walk. I felt like I didn’t have control over my muscles. I continued to have fevers of 103-104 only breaking by ice application and large amounts of IV medications. I became so dehydrated from sweating in bed, I also had to have a PICC Line.
The allergist on my case in the hospital confirmed I was not suffering a serum sickness of any sort due to tests preformed while I was in the hospital and tests following my discharge. He believed I had some sort of rare autoimmune disease. A skin biopsy was taken on day six, and since I didn’t have a clear diagnosis, but steroids seemed to make me better and my fever was going down I was sent home on massive amounts of steroids.
While on the steroids, I seemed to be doing a little bit better. I was able to return to work, still very weak, but doing okay. I tapered down on my steroids, and I noticed that the fevers and weakness started to come back with the lowered dose.
It was around Christmas time that while I was at a work meeting, I had fainted. My doctors still had no clue what was going on, or why I was continually getting worse, so I was referred to the Center of Advanced Medicine at Washington University (Barnes-Jewish Hospital) in St. Louis. Within five minutes of seeing me, the doctor on the case told me I had the physical characteristics of textbook Dermatomyositis and Raynaud’s Disease. It took a couple of days to confirm her diagnosis through blood tests, but she was correct.
Unfortunately, Dermatomyositis is a rare autoimmune disease that attacks the connective tissue and skin, and Raynaud’s causes circulatory problems. I am the 4th patient to be seen at her office for the disease, and it can be fatal if left untreated. I’m very happy to say that with mild chemotherapy, physical therapy, and continuing care that I’m doing much better.
I will be forever thankful to those who advocate for rare diseases, and medical professionals that were willing to listen.
Know your body. Listen to your body. Don’t give up on yourself.