The following article was written by for Scleroderma News, which is a digital platform intended to provide the scleroderma community with the most recent news and information on the disease, as well as first-hand community perspectives from our patient and caregiver columnists.
Amy resides in Buffalo, New York, with her amazing, supportive family, friends, and her three cats. Her passion in life is helping others, and her hope for the column that she writes on Scleroderma News is that rare patients who read it will feel empowered and use their voices to speak up about their own medical journeys to incite change and awareness for the rare disease community.
Amy writes;
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.
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.
I was initially diagnosed with Scleroderma back in November 2018 as my wife and I with our youngest daughter were in the process of relocating to Wellington from Invercargill (New Zealand).
Since then I have been sporadically sharing my own health journey online and providing links to other interesting posts, articles, news and more in an effort to help raise awareness of this rare and incurable disease.
Why not check out them out here, as well as the page I’ve created to help people get a bit of an understanding of Scleroderma, Interstitial Lung Disease & Raynaud’s.
I have learnt the importance of thankfulness and being grateful in the everyday moments of life. I’ve found ways that help relieve stress and enable me to relax and rest so that I can enjoy life to the full.
So, if you’d like to explore ways in which I can help you cultivate an attitude of gratitude in your life, or just need someone to help support and encourage you then contact me via Spiramentum Ministries.
Blessings ’til next time 🙂
The life and times of Perry... 