In November 2013, 8 months after having my beautiful son, I noticed a strange rash appear on my elbows. My greatest fear at that time was that my new body wash was giving me a rash. This was the only thing that made logical sense to me at the time even though the rash was only on my elbows (not likely my body wash since I do in fact wash more than just my elbows). Little did I know, this was the start of my battle with an autoimmune disease called Dermatomyositis, although it wouldn’t be until 4 months later that I would be officially diagnosed.
Soon a rash would appear on my upper chest around my collar bone. The constant itching was not only at times unbearable but extremely irritating. As we almost all do, I took an antihistamine in hopes of making this rash disappear and move on with my life. My body had a different plan! Although the antihistamine helped with the constant itching my “condition” moved on to my hands.
Enter another new life event…we just bought our first house! As exciting as this can be there is always stress involved, especially when buying an older home. It was around this time that I noticed my cuticles were so red from inflammation that even the slightest touch would bring me to my knees. It is difficult, to say the least, caring for a baby and moving into a new home all the while not being able to bear much touch or pressure on your fingertips. Of course, not knowing what I was dealing with, I attributed this symptom to all the cleaning I had done. Perhaps a reaction to the chemicals I was using? Meanwhile my irritating and increasingly painful rashes were still present on my elbows, collarbone, and now face and upper back. I also was noticing muscle weakness in my arms, it felt like tingling sometimes, and I assumed it was from the moving.
In a moment of acting like a responsible adult I made a doctors appointment. This doctor, whom I had never seen before, had no idea what was happening and I was told “Sometimes we just get rashes and there is really no explanation. Take a Claritin and get back to me in 2 weeks if the condition has not changed or worsens”. This was a defining moment for me. At this point I knew that I had to take my medical needs by the reigns. We truly are our own best advocates when it comes to making sure we get the care we need. I suppose that in defense of this first doctor, she very likely could have never seen a case of Dermatomyositis before and rashes are in fact common. As you could imagine, I did not wait 2 weeks, it was more like 2 days, before calling her office and asking for tests to be ran. They ran blood tests that appeared normal and they seemed to not know where to go from here. I then asked to be referred to a specialist, a dermatologist specifically. This is when I would start to get answers!
I didn’t have a sitter for my son the day I went to the dermatologist for the first time so my little guy went with me. I thought that this would just be an introduction appointment, maybe get some ointments, and then my hero disguised as a dermatologist walked in! After taking a few looks at my skin, the doctor had a question for me that I did not expect. He asked me if I have a hard time holding my arms up over my head and if I have noticed any muscle fatigue, more than normal. A light bulb went off as I showed him that I could only hold my arms up for seconds at a time without having to drop them down again. My doctor then said he thought he knew what I had but needed to get his colleague to get her opinion. When they both came back into the room, with my son on my lap, they both examined my skin and my arm strength and the colleague was a bit giddy and exclaimed how exciting it was to see my case. While some may have taken her giddiness as rude, I was in fact happy to have answers. They explained that they believed me to have an autoimmune disease called Dermatomyositis. The office staff graciously took my son on a “tour” of the office as the doctor took a skin biopsy on my elbow and knuckle. The results came back quickly and I was then introduced to 60mg of Prednisone daily and was to be referred to a rheumatologist.
Just as things seemed to be lining up (Atleast I had a diagnosis) our health insurance was changing and I was in limbo. Unfortunately during this time I ran out of my prescription of Prednisone and I had to wait for new insurance coverage to meet my rheumatologist. It was during this time that I started to really lose muscle strength. This meant that I was having a hard time picking up my son (biggest devastating reality), holding my arms up to wash or fix my hair and to steer a vehicle (yes I stopped driving), swallowing, breathing, walking, opening anything, etc…you get the idea. It’s amazing the muscles that you take for granted when you suddenly no longer have the ability to use them.
A few weeks had passed and we finally had our new health insurance and a whole new battery of tests and biopsies ensued. One MRI, one muscle biopsy surgery on my leg, multiple cancer screenings, countless blood draws, and numerous prescriptions later I am a functioning autoimmune disease fighter.
I am learning as I go and will post here to decompress, help myself make sense of things, learn, grow, and hopefully help others by being here.