Columnist Lisa Weber and her dog Tebow are the perfect match If a dog could have Raynaud’s phenomenon, my Tebow would be the one to have it. His tiny frame has the thinnest white coat that barely covers him. His pink skin is visible through his fur. And, like me, he’s always seeking out warm spots to cuddle up in.
Sometimes I can’t find him because he’s wedged himself between the pillows on the couch. I get it, though. I always cover myself in blankets and socks when I’m lounging around. Loving relationships have unique challenges when scleroderma is in the mix by Amy Baker A person meets their person. If they are lucky, they fall in love. They may or may not get married. Either way, they lovingly pledge for better or for worse, in sickness and in health.
Too often, the vows we speak to one another are taken for granted. We believe things will always be good, fair, and happy in a relationship. We all have our fairytale version of how a relationship should be. Creative treatments are sometimes the way to handle the phenomenon
by Lisa Weber | September 9, 2022 I survived years of being laughed at and called names because I am different
by Amy Gietzen | August 31, 2022 I may not be able to blow out all 44 candles in one breath, but I did get to live another wish. I’m here, and I’m celebrating another trip around the sun with nothing but gratefulness and love in my heart.
As a woman with scleroderma I’ve faced many unknowns regarding my body and health over the last 21 years. Every day is a new adventure in my own “series of unfortunate events.”
Since my diagnosis, I’ve restructured my life to make my health a priority and become hyperaware of any potential illnesses or infections. I now stay away from people who are sick, use all-natural products, and avoid touching surfaces such as door handles, railings, and elevator buttons. It may seem ridiculous to some, but this is my new normal now that my immune system is compromised. How many times have you asked yourself, “Is this scleroderma?” Odd sensations, abnormal changes, pain, and even visible deformities — there’s no shortage of strange symptoms with this disease.
I used to embark on a fruitless journey to discover answers, spending hours researching and probing fellow patients in support groups. I never found answers that helped. I only found people experiencing the same thing, but not an explanation for why it was happening. Nothing I discovered helped to stop the pain or heal the damage. The day after my high school prom, a group of us went to an amusement park to continue celebrating. After navigating the ticket line, I noticed a new attraction that looked like one of those free-fall water slides. As I looked up at the endless zigzag of stairs while shielding my eyes from the sun, my heart dropped when I saw a person falling from the top, screaming.
The screams stopped when she bounced up gracefully. I hadn’t noticed earlier that she was attached to a bungee cord. “Who’s with me?” I excitedly asked my friends. My adrenaline was rushing and I couldn’t wait to leap off the edge. Lately, my life has been at a standstill.
For the past 15 years, I’ve found purpose in being a scleroderma advocate, using my voice to share my journey and help others. But I feel like advocacy has started to lose its shine. Six years after my diagnosis, I decided to be open about my journey with scleroderma. Until that point, I’d remained silent about my struggles, as a part of me was afraid of people’s reactions. Would they be able to connect to my story? Another part of me was angry at the hand God had dealt me. |
AuthorScleroderma Queensland Support Group Archives
April 2024
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