Being Careful Instead of Carefree Saved My Life With Scleroderma

Learning to live with a rare disease has been a long process that continues today

Amy Gietzen avatar

by Amy Gietzen |

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I remember as a child having no fear. I would throw myself headfirst into any and everything, not caring whether it was safe or the right thing to do. I just let go of all my inhibitions and made that leap.

I wish I could say my fearlessness stayed with me years later, now that I’m in my 40s. But if I’m frank with myself, I’m scared of almost everything now — and I will tell you exactly why.

The shock of a lifetime

When I was 19, scleroderma exploded into my life. Being so young, I had no idea what the long-term ramifications of this disease were going to be. I had no concept of planning ahead, conserving my energy, or maintaining a healthy lifestyle.

I was barely an adult — I was in college and going out four nights a week drinking. Self-preservation and responsibility were not even blips on my radar. I quickly learned that as much as I might’ve wanted to continue with my life as it was, my body and this disease had other plans for me.

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After my diagnosis, my health steadily declined. I was fatigued and had constant hand pain. My stomach was upset 100% of the time. At first, I assumed it was from late nights and junk food, but I quickly learned it was a combination of my medications, unhealthy eating patterns, and scleroderma. How could all this be happening to me? My life was in complete and utter shambles.

Devastating life changes

Eventually, something had to give. I couldn’t continue at the rate I was going. Very soon college became too much to bear, and I had to drop out. I physically could not make my body cooperate with my brain. The things I wanted to accomplish sounded reasonable inside my head, but physically, my body was not on board.

Gone were the carefree days of my childhood; gone were the wild times of staying out all night. 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 how I took care of my body.

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Amy rests and recharges after a recent surgery related to her scleroderma. (Courtesy of Amy Gietzen)

Finding balance amid chaos

I found out that the healthier I stayed, the better I felt, which allowed me to accomplish more. Getting a simple cold, for instance, was something I worked hard to avoid. What might’ve taken a healthy person a week to work through could have me out of commission for several weeks, or even lead to the hospital. I needed to be very careful.

I also needed to preserve my strength. I drastically altered my sleeping schedule: no more all-nighters for me. I changed what I ate to help me stay healthy and keep my body going. Fast food and candy were confined to special treats.

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 I was afraid of an injury. If I cut my finger or got a brush burn, it could potentially take months to heal or turn into a serious complication. I understood now what my body would do and what it wouldn’t.

My friends were used to the carefree Amy who was down for everything. The new Amy was more cautious and calculated about what she did, how she moved, and how she took care of herself. Some of my friends didn’t like the new me, and those friendships suffered and we lost touch. That hurt, of course. But hey, if you can’t love me at my worst, then you don’t deserve me at my best.

Moving forward

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 to stay healthy and push through life battling scleroderma.

When I was diagnosed, my life expectancy was 10 years or less. 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 how some of my choices hurt my body and my spirit. Honestly, scleroderma taught me to live in the now, albeit more cautiously. I weeded through the toxicity in my life, and I’m better for it today.

Now, 21 years later, I’m still here, living my best life and fighting like hell. 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 got to know my body while living with scleroderma — and what worked and didn’t.

Yes, I might be overly careful and not fearless anymore, but I’m alive and healthy. That, to me, is an even trade.

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.


Dinah Watkins avatar

Dinah Watkins

Great article Amy! I definitely can relate. I’m passing this onto my family as some of them don’t understand why I’m so cautious and instead think I’m paranoid - Sheesh!

Jackie Stewart avatar

Jackie Stewart

Thank you Amy. I'm 69 years old and learned I had Scleroderma about 6 years ago. It started with pulmonary fibrosis about age 55. It was many years before the Scleroderma registered on tests my pulmonologist tried. I've been lucky I think that it is progressing slowly but now that I'm aging at 69, it's hard to know which of my problems are due to aging and which are from the scleroderma. I appreciate your comments on trying to stay healthy. It gives my more incentive to do the same! Thanks!


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