My Journey With Dermatomyositis

Along with March being Women’s history month, it is also Autoimmune disease Awareness month. There is no way I could let this month pass with out sharing my personal story living with a rare autoimmune disease for the last 6 years. I’ll try not to make it too long.

It all began with a purple itchy rash on the back of my hands. I thought it was the usual eczema that would pop up during the winter months and disappear by spring. But this was different. I made an appointment to see a dermatologist and within weeks of me waiting for my appointment date, the rash spread to my chest, face and back. It was unbearably uncomfortable. It itched so bad I thought I would injure myself from scratching so much. I went to 2 different dermatologist and one allergist and none could figure out what was wrong. During that time my hair began to fall out, then muscle pain, and facial swelling. A long time friend urged me to visit the ER directly after work and I did. The doctor that saw me knew I had some sort of auto immune condition and recommended I see a Rheumatologist.

My health continued to go downhill, my muscles became even more weak, I became a choking risk because I was having trouble swallowing food or drinks. I was fatigued. I was a mess. When I finally met with the Rheumatologist, I was desperate to learn what was wrong with me. He ran lots of tests and was able to rule out lupus. He came to the conclusion that I was having an auto immune response to a viral infection I had a few months prior. He told me all the symptoms would resolve on their own and that I would be fine in 3 months…Huh??? It didn’t feel right so I got a second opinion.

One of my good friends who is a doctor recommended a practice her mother went to for the treatment of lupus. Im so glad I went. Within one visit I had a name for what ailing me for the last 5 months. I was told I had a chronic illness called Dermatomyositis (DM). I’d never heard of it nor could I pronounce it. I was afraid but relieved that I now knew what I was dealing with. DM is a connective tissue disease that weakens the muscles in the arms, legs, esophagus and lungs. Its caused rashes on the skin, hair loss and extreme sensitivity to the sun. It isn’t genetic.

Managing DM was tough in the beginning. I initially I was on high doses of prednisone, which worked but had crazy side effects. Then I tried a couple study medications which were unsuccessful. Finally, my current Rheumatologist put me on a monthly infusion treatment called IVIG. IVIG is blood plasma that helps boost my immune system and fight the disease. This has been a game changer for me. I finally look and feel like myself again. The only downside of the treatment is in order to successfully continue the treatments I had to get a port placed in my chest to get the treatment. I only considered it a “down side” because I didn’t want a scar on my chest. I have always had very small veins that were deep and rolled getting blood drawn and iv were truly tough for me. Besides that the treatment has been awesome.

Dealing with chronic illness can be tough. I still find myself asking “Why me”? But my faith in God allows me to power through. I am grateful for every thing I have the ability to do because at one time I couldn’t. Things like the ability to dress myself without assistance or the ability to walk up a flight of stairs or cook a meal. I don’t take anything for granted.

I have hope that one day a cure will be available for all who are dealing with All of the various Autoimmune diseases out there. Until that day comes I encourage you to seek joy and try to remain hopeful and do what makes you happy.

2 thoughts on “My Journey With Dermatomyositis

  1. I’m glad you were able to get your disease under control and live comfortably again. I have a rare autoimmune skin disease too called pemphigus vulgaris, It causes blisters and skin erosions and can affect the mucus membranes and scalp. I take a low dose of Prednisone but I manage the disease mainly by avoiding triggers, eating healthy and other lifestyle changes. Check out my website if you’d like. Coincidentally I also had eczema before getting the disease. Since childhood. Do you think there’s any connection?

    Liked by 1 person

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