Trapped, personal story of life with Dermatomyositis

Leaves were starting to fall, the air was crisp, and the evenings started to feel much cooler. As each day went by, I noticed that I struggled more and more to get out of bed. I was starting to feel weak and I didn’t have the energy to do anything. My hair was falling out much more than usual and itchy rashes were starting to form on the top of my hands.

Hi, my name is Christa and I am 24 years old. I was diagnosed with Dermatomyositis in early 2015 when I was 22 years old. I always considered myself very healthy up until I was diagnosed with DM. I graduated high school in 2011 and graduated Army basic training in 2013. Working out and keeping active kept me happy and I always kept myself physically fit.

It was November of 2015 when I started to notice purple/red rashes on my hands, lower back, and my right thigh. They were very itchy. I went to the urgent care hoping to get some type of explanation as to what these rashes were, but all I got from the doctor was an anti-itch cream. Boo. I would literally drown myself in this anti-itch cream but of course, it wouldn’t help at all. So every night I would take Benadryl before bed to help calm the itchiness.

A month passed by and we are now about a week away from Christmas. As I was laying in bed, I noticed that I didn’t have the strength to go from lying down to an upright position. I had to roll myself out of bed, which I found very strange. I didn’t pay much attention to it and I went on with my day. My joints would ache and my hair was falling out more and more. I also noticed that my face was very red and I had swollen eyelids. Each day seemed to get much worse and all I wanted to do was lay in bed all day.

It was a cold January morning and I was home alone. My husband had gone to work and I had decided to sleep in since it was my day off from work. I rolled to my right and decided it was time for me to get up from the bed. As I was struggling to get off the bed, I slipped and fell off and landed on the floor. I tried so hard to get up but I couldn’t. My phone was on the bed, and there was nothing for me to grab onto. My arms felt like noodles, my thighs had never felt so weak, and I could barely hold my head up. My dog Charlie, barked at me trying to get me to get up, but it was no use. I was so weak. I laid there and cried. I didn’t know what was going on. I was so scared. My husband came home for lunch and found me on the floor crying. He helped me up, comforted me, and I told him I needed to be seen by a doctor immediately. This was not an ordinary rash, there was something more serious going on.

I was seen the following day by a dermatologist, and she was shocked. She explained to me that I had DM and she said she had never actually treated a patient with this condition before. She had only read about it in medical school. She asked if she could get some pictures of my rashes and then she referred me to a rheumatologist. I was happy to finally know what it was that was going on with my body. I was excited to finally see a doctor, and get taken care of. What I didn’t know was that this disease, unfortunately, is incurable.

My treatment started with 60 mg of prednisone, 50mg of azathioprine, 10 mg of ranitidine along with some vitamin D pills. I quickly saw the weight gain, the moon face, and I noticed that I was always hungry, thanks to the medications. The prednisone especially, having to take that high of a dosage has so many side effects that I wish it didn’t have. The medicine kept me stable for a while, I had no flare ups, and so the doctor started to slowly taper me down.

I know I have to depend on medication for the rest of my life, but I’m thankful that I can see, hear, and get around without any help, and that I have a loving family that’s always been there for me. I will never let DM get in the way of me living my life!

In October of 2016, I was down to 20mg of prednisone and I was taken off the azathioprine. I moved to South Korea and I noticed that the cold South Korean winter was definitely not for me. The rash started to reappear, I started to feel weak, and my hair started falling out more than usual. I got back to the states in February and decided to go to a different rheumatologist. I was told on several visits that I had a very high blood pressure. I was sent to do blood work and the doctor noticed that I was at risk for kidney failure. In the results, they noticed that I had high levels of protein in my urine.

I was quickly sent to the ER and they hooked me up to so many IV’s. I spent two weeks in the hospital and had so many different tests done. I was then introduced to IVIG and I could definitely say that I felt better after that was given to me. I am currently on 20mg of prednisone, 1500mg of CellCept, and I am also taking blood pressure medication.

It’s been almost two years that I’ve had to live with DM. I’ve learned to live with it and just be thankful to still be alive. I know I have to depend on medication for the rest of my life, but I’m thankful that I can see, hear, and get around without any help, and that I have a loving family that’s always been there for me. I will never let DM get in the way of me living my life!

Author: Christa (Cmazariegos92)

 

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Hi, this may be interesting to you: Trapped! The link is included below: https://understandingmyositis.org/trapped/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.