I want to take some time today to share my experience living with an autoimmune disease.
I have scleroderma morphea.
At 18 years old I began developing plaques on my abdomen. I had never heard of an autoimmune disease, and I honestly thought I just had a bruise that wouldn’t go away. Eventually it was there long enough that I knew a doctor’s visit was needed. A few months later I had an official diagnosis and a treatment plan. I also had a lot of fears and concerns.
About four years later, as I began my last semester of college, I faced another flare up. My initial plaque tripled in size in about one month. I shutdown, burned bridges with friends and isolated myself. I felt like the doctors were unable to help, so I went it alone and my plaque grew to be over a foot long. Then I started growing a second one. All the time this was going on, I was angry, my grandma passed away, I graduated college into the great recession, I got a kidney infection and kidney stones. I was stressed, lonely and tired. I had support from my family and my boyfriend at the time, but I felt horrible. I needed to own up to how unhappy I was and really deal with all of the stresses in my life. It took a long time for me to get to the doctor. Once I did, my plaques stopped growing in just a few weeks!
I never know when I’ll have a flare up or how long it will last.
What I do know is that having large masses of unexplained scar tissue makes me feel uncomfortable and kind of unattractive. It makes me nervous and scared to have children – I don’t want to pass on this faulty DNA in case it is a contributing factor. I’m uncomfortable and afraid and it’s had a huge implication on the decisions I have made the past ten years.
Over the past year I’ve been experiencing a flare up. From having difficulty getting over colds, to new plaques developing, my immune system is not behaving quite the way I expect it too. Last February I started growing a new plaque under my right arm – honestly I thought I must have done something weird when shaving. By August the plaque went from shaving nick to large lump and needed to be checked out. Shortly after that, I recognized small plaques on my right arm. I’m still treating all these new plaques and in a state of fatigue. It’s frustrating because with scleroderma morphea and autoimmune diseases in general, there are no answers.
It is an undulating experience. There are waves of good times and waves of bad, waves of fear and courage, and especially waves of living healthily alongside waves of reckless junk food paradise. Right now, it’s time to focus on health and keeping life stress free!
Here’s to 2015, a year full of promise, getting my symptoms under control and living a lifestyle devoted to true health! Wish me luck!