It wasn't until the day before my first anniversary that I realized that what was going on with me was a bit more serious than I had ever imagined. I spent the day in Cincinnati walking along the waterway, Purple people bridge, and the park living life happy with my husband. It was overcast that day, except for about a half hour or so of bright sunlight. I was in that sunlight without protection, such as a hat and sunscreen. Before heading back to the hotel, my hands began to swell and itch...to the extreme. My knuckles became very inflamed and swollen. At that time, I knew I had something very serious going on. My husband and I tried everything to relieve my symptoms, but to no avail. Having dinner that evening was excruciating. The rest of the evening, I had what I now call Fire Hands.When I returned from Cincinnati, I immediately called my doctor to see if the results of my blood work were back. They indicated that my ANA test was positive, which indicated I had an autoimmune disease. He indicated I had symptoms closely related to Lupus and I would need to see a Rheumatologist. At that time, I had only heard of autoimmune diseases, but never really knew what they were. I started doing research on autoimmune diseases and the different types there are. I realized that it is possible to have either just one autoimmune disease, two, or a combination of many. My symptoms were more consistent with a rarer disease called Dermatomyositis, as I discovered from an informational page from the Mayo Clinics research page. It was clear that whatever disease I have, a flare-up can be caused by exposure to the sun and cause major joint pain, extreme fatigue, and present a hideous-looking rash on my hand knuckles and chest. One symptom was not aware that was connected to this disease was the constant pulsating and pain in my thighs and upper arms.
I knew all the testing for whatever was going to be expensive and treatment for whatever was going on would be twice that, so I decided to use my veterans benefits at the VA hospital in Downtown Detroit. That meant repeating all the tests I previously accomplished. So that meant that the wait for a diagnosis would be longer. I needed answers, so I was willing to wait as long as I needed. Those answers finally came today from the Rheumatologist: I have Lupus, Dermatomyositis, and possible Autoimmune Polyglandular Syndrome.
I knew I was going to get the diagnosis of Dermatomyositis, but not the other two. I had done so much research of the one disease I was more likely to be carrying, I knew nothing of the other two. Tomorrow will be a new day as I am determined to know everything there is to know about my diagnosis. I have more tests coming up, to include blood, urine, x-rays, and tissue biopsies. My next appointment with the Rheumatologist is mid-July. That is when we will discuss a treatment plan. I have a lot to lean before then. I will be happy to share what I learn.Flare-up after spending a day at the zoo, covering up my arms and head didn't work.
