Who am I? On some days, I don’t know how to answer that question. But I can tell you with certainty that I am not defined by my autoimmune disease.
Scleroderma, my systemic enemy, is trying to destroy me. Every day it does its best to damage my body, both inside and out. Still, I won’t let it win. Today, I am “Stronger Than Scleroderma.”
Onset and diagnosis
Scleroderma began waging a war on my body in 2014, when I was 36. In the prime of my life, I was happily married and had two little girls. But one day, my hands and feet turned dark blue, and my life changed forever.
That day’s events led to appointments with specialists that eventually revealed the name of my personal terrorist. My diagnosis has no cure. Doctors can treat my symptoms, but they can’t heal me. Nor can they prevent whatever lies ahead. For someone who dedicates her life to fixing things, hearing that there is no way to get better is torture.
There’s no doubt I’ve been changed, and it’s impossible to share all of these changes in one column. This disease may not own me, but it plays a big part in shaping the person I have become.
Physically, I’m not doing too badly on the outside. My hands are tight though, leaving me with an inability to grip things or make a fist.
My mouth has shrunk, too, which has twisted my teeth and thinned my lips. My smile was once full and complete, but now, my lips can barely cover my teeth. My nose has become bony, and my skin is pulled tight. I look like I get Botox regularly — and not from a skilled doctor.
I’ve come to accept these outward changes. What I can’t accept is the internal scarring that has destroyed all of the muscles in my esophagus and stomach, leaving me with esophageal dysmotility and gastroparesis. I’m limited by what, how, and when I can eat. Gravity is my only friend when it comes to digestion.
Worse, my lungs are damaged badly enough to force me to limit my activities, a complication known as interstitial lung disease. This is caused by a restriction that leaves me unable to take normal breaths. Recently, this restriction has worsened, and I had to start using an oxygen tank when I exercise. I can endure the facial changes and the challenges with my hands and feet, but my internal organs keep me alive. Now that they are “breaking,” my life is in danger.
Which leads me to the emotional damage that scleroderma has inflicted on me. I constantly feel guilty about worrying my family. I become angry with myself when I believe I am holding my young husband back.
And of course, my heart breaks for my daughters. No matter how hard I try, I can be out of commission for days, weeks, or months at a time, making it difficult to be the mother they need. While I have the most supportive and understanding family, I can’t seem to shake that powerful feeling of guilt that consumes me every minute of this new life.
Fighting and thriving
To truly get to know who I am, don’t focus on my disabilities and ailments. My will to survive is stronger than scleroderma. I’m a fighter, and I plan on thriving on this planet for a long time.
I continue to make things with my awkward hands. I still jog — maybe a bit more slowly than I would like — despite my lung involvement. Some days, I cook dinners from scratch and enjoy large glasses of wine.
When my body is not in a flare-up, I live it up! This is something that scleroderma hasn’t — and can’t — take away from me. My life may look different, but I’m still alive, and I deserve to be.
I’m not here for sympathy or attention. I want this column to be a place where people can obtain firsthand information about scleroderma and feel inspired to fight. I also hope to raise awareness about invisible diseases like mine, and to help this world be more accepting of patients with debilitating conditions.
Join me on the journey, and I will share how I find ways to keep moving forward despite the many hurdles thrown in my path. I’ll be here to encourage you and to let you know you are not alone.
We all have our battles in life. They may look different, and our abilities may not be the same. But I believe that together, we can be stronger. Together, we can find the strength to keep fighting!
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
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