 I was diagnosed with some sort of autoimmune disease about twelve years ago. It was not clear at that time which form I did indeed have, but lupus was suspected. I had swollen lymph nodes and Raynaud's. Overall I did not feel bad. I was twenty six years old.
Since that time, it has been a slow progress and I have felt very blessed. Within the past year though, everything has seemed to surface. I go to Thomas Jefferson University Hospital in Philadelphia. My doctor there is wonderful. Having a doctor listen to me is essential. I have found that it is difficult to find a doctor who listens to me and who treats me as an individual rather than a subject.
I suffer from small airway disease, Raynaud's, severe heartburn, high blood pressure, inability to eat without moving my bowels, costochondritis, phlebitis, and joint pain. I am in therapy for my upper extremities. I cannot sleep at night. My skin is flawless and not showing any signs of hardening. I am close to forty and have the appearance of a twenty-something. I think that's cool!
I am currently on many medications, including anti-inflammatories, muscle relaxers, antacids, blood pressure pills, lung medication, iron supplements, pain medications, and sleeping pills. I recently finished a round of steroids for inflammation in my rib cage and breastbone.
I do not look sick, so I can fool people easily. My antinuclear antibody (ANA) titer is 1380. My mother has rheumatoid arthritis (RA) and my thirteen-year-old daughter has what is believed to be early lupus.
I sometimes think that being sick and not always appearing to be sick makes it difficult. People in general do not understand this little-known disease, and keeping it bottled up inside is painful in itself. It would help if the world had a better understanding of scleroderma. Is there anyone out there like me? |
Judith Thompson Devlin is the ISN Story Editor