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.

Fatigue is a common issue for people living with scleroderma. It’s one of the top three symptoms that bothers people living with scleroderma.

What is fatigue? People describe fatigue as feeling tired, mentally exhausted, or physically overwhelmed day after day, no matter how much sleep they’ve had or what they’ve been doing, even if it’s just everyday tasks.

The effects of fatigue can have a significant impact on your pain and can diminish your quality of life.

Kedron-Wavell Services Club has generously provided a community donation of $300 for the cost of room hire for our event with Associate Professor Tony Kenna in September.

Generous donations such as this from #kw allows Scleroderma Queensland to raise such important funds for much-needed research and awareness.

THANK YOU AGAIN to Kedron-Wavell Services Club. We gratefully acknowledge their support.

#KW #KedronWavell #eventsatkw
https://kedron-wavell.com.au/​

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. 

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.
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“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.