When Living With Scleroderma’s Challenges, I Search for Inner Peace

Amy Gietzen avatar

by Amy Gietzen |

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Most of the time, I try to remain positive and open-minded. I learned this a long time ago while dealing with the ups and downs of scleroderma. If I can push through the painful emotions that scleroderma causes, I can live a much more enjoyable life with a positive perspective.

Don’t get me wrong, not every day is a walk in the park. I’ve had more days than I care to count when it was a major battle just to crawl out of bed and start the day. It has taken me a long time to come to terms with my diagnosis and to be able to sit in peace with the trajectory my life has taken.

My emotions tend to zigzag all over the place, like lightning bolts during a storm. At times, I have found it extremely difficult to put a positive spin on the events prompted by scleroderma, such as undergoing toe surgery or having eight teeth extracted to avoid eating with rotten teeth. These events were far from easy, and the choices I faced were equally difficult. But I took a deep breath and looked at the bigger picture.

What I saw was that I am lucky to be alive and still able to make the most of my life, even in adverse circumstances. I can enjoy moments with family and friends and live in the here and now. That sentiment has saved me from major depression and heartache on several occasions.

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This has been true even in times when I feel like my life is at its lowest point, like when I had to drop out of college due to medical complications or when I had to stop working and go on disability. I try to maintain a perspective that things could be worse. Somehow, somewhere, someone is worse off than me, which makes me feel grateful.

Gratitude can make anyone turn a frown upside down. This attitude led me to meditation to combat the unpredictable nature of life with scleroderma.

I have found that during times of extreme adversity, when nothing is going my way, a moment of quiet gratitude can make the impossible seem like it is within my grasp. I’ll close my eyes and just feel, letting every emotion run through my body, good or bad. I’ll sit with these feelings, mentally sorting through all of the gray areas that come with life as a scleroderma survivor.

I’ll remind myself that it’s OK not to be OK, and that I am human. Then, I’ll dry my eyes, roll my shoulders back, and take my day one step at a time. Taking my life too seriously can cause an overwhelming sense of anxiety. So even in times of dire stress, I try to keep it light.

Turning to positivity in negative situations can make it a little easier to bear, which makes all the difference. When I’m just trying to get through the day, finding peace within myself is a must.

Living with scleroderma will never be easy — it’s just the nature of the beast. But learning to calm my nerves and take the good with the bad has helped me learn to live amid the chaos that is scleroderma.


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.

Comments

Anita avatar

Anita

Dear Amy, a lovely, heart-warming column as usual. When you talk about our bad days, I can feel them. But then I bring my mind to the beautiful moments and days for which to be grateful. I too meditate. Often just mini meditations--looking out the window at the trees and blue sky, being quiet and thankful for a few minutes. Or sitting comfortably on a chair in the living room, closing my eyes, hands in my lap, relaxing with my breathe, letting my thoughts just float through the back of my minds--just watching them without attachment, remembering to keep my whole body relaxed.. I can set the alarm for 10-20 minutes or not. It's nice to pick a gentle, melodic tone on my cell phone as an alarm. Blessings to you.

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Amy Gietzen avatar

Amy Gietzen

Anita,
I appreciate you sharing your journey with me and all of the similar life paths we have endured. Scleroderma can be complicated at best, right? I admire you will power forward and how you are not afraid of the hard stuff!

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Robert Lyon avatar

Robert Lyon

Amy you are a Hero after diagnosis at 58 ScleroSsc male your writings and Struggles Inspire :)

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Amy Gietzen avatar

Amy Gietzen

Thank you so much for your kind words.

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Sedrick Pace avatar

Sedrick Pace

Amy I’m new to the blog but not Systemic Sclerosis. I was diagnosed 1983. My illness started during military training and that ended my military career. I’m now 62 and I do have a huge to share with the community. I’ve been living this disease for 43 years - one of the oldest African American male with this disease. Amy mentioned the pain. Right now using one finger on my left due deformity of right hand and active painful digital Ulcer. I’ll glad to give to any younger who have recently or older patients.

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