How Being Careful Instead of Carefree With Scleroderma Saved My Life

I remember as a child literally having no fear! I would throw myself headfirst into any and everything I could. Not caring whether it was safe or the right thing to do, I just let go of all of my inhibitions and made that leap. I wish I could say my fearless characteristic stayed with me years later, now that I am in my 30s, but if I am completely honest with myself, I am scared of almost everything now — and I will tell you exactly why.

When I turned 19 years old, I was diagnosed with a rare chronic autoimmune disease called systemic scleroderma. This disease has no known cause and currently no cure. At 19, I had no idea of what the long-term ramifications of this disease were going to be. I had no concept of planning ahead or of conserving my energy or of healthy lifestyles. I was barely an adult — I was in college and going out four nights a week drinking until 4 a.m. Self-preservation and responsibility were not even bleeps on my radar. I quickly learned I might want to continue on with my life as is, but my body and this disease had other plans for me.

After my initial diagnosis, my health declined pretty steadily. I was fatigued all the time. I was having constant pain in my hands and wrists, they felt like someone lit them on fire. My stomach was upset 100 percent of the time from all of the medications I had to take and there was no reprieve in sight! How could all of this be happening to me? Did I do something to deserve this misfortune? My life was in complete and utter shambles. Eventually, school became too much to bear and I had to drop out. I physically could not make my body cooperate with my brain and the things I wanted to accomplish mentally sounded reasonable, but physically, my body was not on board.

I’d like to say as the years passed, it got better, but that would be a lie. My disease became easier to manage because I knew my body and what worked and didn’t, but my disease continued to progress and I started to be very cautious of my surroundings and the people in those surroundings. At my work, if someone was sick, I avoided contact with that person completely. My immune system was basically nonexistent from all of my medications, so the last thing I needed was to catch a cold from a person at my job. Germs were my enemy and I disinfected my work area diligently and regularly. I found out the healthier I stayed, the better I felt and the more I was able to accomplish. So getting a simple cold that took a normal, healthy person maybe a week to work through, could have me laid up for days and even put me in the hospital. I needed to be very careful.

Gone were the carefree days of my childhood, gone were my wild nights of barhopping with my girlfriends and staying out until 4 a.m. I completely changed my life to accommodate this disease, not because I was letting it take over, but because to have my life, I needed to change how I lived. And that started with the way I took care of my body. I needed my rest and I needed to preserve my strength. So, I was in bed at 10 p.m. If I wasn’t, forget about having the energy to go to work at 6 a.m. the next morning. I changed what I ate to help me stay healthy and keep my body going.

I also changed my hobbies, because let’s face it, late-night drinking wasn’t helping anyone. I grew to be very fearful of trying new things, mostly because of my fear of getting injured. I knew now what my body would do and what it would not. This didn’t bode well with some of my friendships because people were used to the wild and carefree Amy who was down for any and everything, and the new Amy was much more cautious and calculated about what she did, how she moved, where she stood and how she took care of herself. Some of my friends did not like me and we lost touch. Which, of course, hurt, but hey, if you can’t love me at my worst …

This was how I needed to live my life now. Yes, some might think I’m overly worrisome about my interactions with people, places and things, but in the end, it helps me stay healthy and push through life battling this disease. When I was first diagnosed, doctors gave me 10 years or less. That was what the prognosis was for people living with scleroderma at that time.

Now, if that doesn’t scare someone into changing their habits, I don’t know what would. For me, it forced me to take control of my life and start to grow up. It helped me to see some of my choices and ways of living were hurtful to my body and my spirit. Honestly, scleroderma got me to live in the now, even if it is more cautiously. I weeded through the toxic things and people in my life, and I am better for it now.

Eighteen years after being diagnosed with scleroderma, I am still here. Living my best life. Advocating for this disease and trying my damndest to stay healthy and enjoy my life as long as I am able. Yes, I might be overly careful and not at all fearless anymore, but I’m alive, healthy and blessed. And that is all I can really ask for!