Seattle, Washington (United States)
Scleroderma Stories Issue 3
Please introduce yourself
I am an avid thrift shopper. I love vintage fashion and the enthralling hunt for a good find. Furnishing a house with second hand items is rewarding, and it gives a nice lived-in vibe. I particularly like old wicker shelves. I am also a dedicated pet mom and wife. I really enjoy spending time doting on my two kitties and betta fish. I’m also a bit of a daredevil… If I could start everyday with a skydive I would!
When were you diagnosed with scleroderma?
I was diagnosed with Systemic Sclerosis in 2011 after experiencing severe Raynaud’s, which led to a hospitalization for an infected digital ulceration. I often found myself hospitalized for ischemia and infections, and eventually the disease began to heavily reduce my organ function.
In 2014, I began to rapidly lose weight and was diagnosed with Digestive Tract Paralysis and malabsorption. I was placed on my first surgical feeding tube, which was a massive lifestyle adjustment but also an incredible life saving intervention.
Scleroderma went on to attack my heart and lungs, greatly reducing their proper function.
What medications or treatments have you tried?
My physicians have prescribed the gambit of medication, treatments, and procedures to keep my body functioning. I’ve endured everything from immune modulators to immune suppressants, from chemotherapy to clinical trials. I’ve had surgeries to increase circulation in my hands, and I’ve undergone a complete reset of my immune system via Stem Cell transplantation.
Unfortunately, due to the treatment resistant nature of my case, I do not experience a reduction in symptoms for prolonged periods of time on these standard treatments. However, I have hope for the future as medical science and research continues to evolve.
Have medical expenses affected your family’s financial stability?
How has your family supported you through the years?
How has scleroderma affected your work?
What mindset changes have you made since your diagnosis?
Do you have any goals or dreams for the future?
Have you met anyone else with scleroderma?
Could you please share how and why you started your blog, “The Tube Fed Wife”?
Are you in any other online scleroderma communities?
What is your advice for people with scleroderma or chronic illnesses?
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 email@example.com