Kansas City, Kansas (United States)
JENNIFER ADDINGTON
Scleroderma Stories Issue 1
Please introduce yourself
My name is Jennifer. I am 49 years old. I was diagnosed with lupus at age 18 and began developing scleroderma in 2008. I am married with two kids: a 23-year-old son and an 18-year-old daughter who is a freshman in college. After divorcing for three and a half years around our 10th anniversary, my husband and I have been happily remarried for 10 years and counting.
We live in Kansas, not too far from Kansas City. I enjoy decorating for events, home decor, artsy stuff, photography, social media, inspiring people, and my family and church. I also love to travel.
What symptoms did you have at the time of diagnosis?
I had major swelling of my limbs and tightness of my skin. My belly was hard, and the skin on my neck, face, chest, and hands was hardening. On both hands, my fingers curled in. I ended up with digital ulcers for the first time when my Raynaud’s got out of control. I had extreme itching all over as well as difficulty swallowing. I would wake up at night with acid shooting out of my throat. My mouth shrunk, and my face changed, which really affected my self-esteem. I also experienced shortness of breath. I’m sure I can think of more with time.
I felt terrified. My doctor said I was gravely ill, and we were praying that I wouldn’t die. I felt alone and isolated because this disease is so rare. It felt like I had zero control over what was happening.
What happened after you were diagnosed?
I ended up having to take several months off due to severe illness and gangrene in two fingers. I had worked in the Mental Health field for 13 or so years as an office manager, but then I was failing.
My doctor advised me to quit working and spend time with my family. I spent 3 years or so on the couch sleeping, pretty much. But, now I am working part-time at my church so I can have social interaction and a reason to get out of bed.
How has scleroderma affected you mentally and physically?
It has been very difficult. I had mostly learned to cope with lupus, but scleroderma brought about physical changes that also caused mental anguish. I lack the confidence I once had, for numerous reasons; one being the way I look, and the other being that I often cannot do what my mind wants to do because I don’t have it in me physically. Stress of any kind is bad for me.
I am much more protective of my time and energy. When I know I need rest, I rest, for the most part. I know in advance that the extra stuff I do will cause stress and induce flares, so I try to be selective about what I put my energy towards.
Having an extra disease to deal with has definitely slowed me down, but it has also made me appreciate each day that I wake up even more. Scleroderma has so many complications that come with it that I often fear that I won’t wake up. But, my faith and my support system help a lot.
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 contact@sclerounited.us
