Louisville, Kentucky (United States)
Scleroderma Stories Issue 3
Please introduce yourself
I’m Michelle. I am 37 and a single mom of two kids. My son is fifteen, and my daughter is eight. I currently live in Louisville, Kentucky. I like reading books and musicals, the movies, and just anything art related. My favorite movie is “The Princess Bride.
Has scleroderma impacted your hobbies and interests?
Yes. My hands are pretty much the worst right now. They’re contracted, so it’s hard to hold a book in my hands, or my phone, or just really anything in general. What has helped is that I have a phone stand that I can put my phone on as well as a thing called a Pillow Pad. You can set a book or notebook on there so you don’t have to hold it in your hands. And then, you can just read that way.
When were you diagnosed?
I was diagnosed unofficially on November 11th, 2016 by an Emergency Room physician, and then I got an official diagnosis in January of 2017 when I saw a rheumatologist for the first time.
Leading up to the diagnosis, my hands would swell overnight but typically go down during the day, for the most part. My index finger on my right hand became contracted, and I couldn’t really use it. That happened over the summer of 2016. Around October of 2016, I started to get face tightening, and my mouth became smaller, so it became harder to eat.
How did you feel when you were diagnosed?
I’m not really sure. I had googled my symptoms, like everyone does, and Google was actually right, so I guess I was scared. More so scared that Google was right and that something serious was wrong, but also kind of relieved because I knew right off the bat. I didn’t have to go through as many doctors to get an official diagnosis. They knew what it was, so I could go ahead and start treatment.
My last job had actually involved patients that had scleroderma. However, I wasn’t personally working with the patients. I worked at a specialty pharmacy, and the drug program that I was on was used for patients with scleroderma.
After I was officially diagnosed in January of 2017, I googled scleroderma so I could find more information. I found the scleroderma organization.
What symptoms have you developed since your diagnosis?
What is the scariest part of living with scleroderma?
Did bosses or friends understand what you were going through?
What lifestyle or mindset changes have you made?
Have scleroderma’s effects on your physical appearance influenced your confidence or view of yourself?
What helps you get through difficult times?
How have your kids helped you or learned about scleroderma?
Have you had to make any adjustments because of COVID?
What treatments or medicines have you tried?
What advice do you have for those with scleroderma or other chronic illnesses?
Is there anything else you would like to share?
Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.
Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at firstname.lastname@example.org