It was 1976 and Theresa Michelle— a newlywed working at the Department of Justice in Washington D.C.—was having trouble holding on to heavy pots and pans. She was soon diagnosed with rheumatoid arthritis, but couldn’t have imagined the two decades of health troubles that would follow.
Theresa quit her job in D.C. to go to nursing school and graduated in 1980. She started working as a full time nurse a few years later and found that hospitals weren’t focusing much on sterilized and sanitary conditions.
At that time, not too much attention was paid to infection control. Our hospital ran out of gloves more than once…Chemotherapy in those days was extremely toxic. There were many times we thought nothing of cleaning up spilled chemo using towels with bare hands. No one is crazy enough to do that now.
Chemo today has a warning of “must be handled with gloves”
After two bouts with pneumonia in 1988 and new symptoms of a fever, chest pain and shortness of breath, an x-ray showed Theresa had enlarged lymph nodes. Her doctor suspected lymphoma and ordered MRI scans that were inconclusive. Finally, a bronchoscopy uncovered sarcoidosis and Theresa was put on a high dose of tapering prednisone.
After a back injury at work, Theresa had two surgeries to repair a ruptured disk in 1996. While it’s not possible to know for sure, she feels this is when she developed sarcoidosis in her central nervous system. Over the next decade, Theresa’s condition would worsen, with painful numbness in her legs, feverish night sweating, and a variety of symptoms relating to her sensory perceptions.
My ears were “misperceiving” ambient noise as music (mostly Billy Joel). I would awaken in the middle of the night to the aroma of cooking bacon every few nights, but no one was cooking. I went to a neurosarcoid specialist. He did two punch biopsies on my right leg in 2007, because of the strange symptoms I had. The path report came back as moderate-to-severe neurosarcoidosis.
Unfortunately, like many sarcoidosis patients, Theresa’s health complications went far beyond just a diagnosis of sarcoidosis:
In 2009, my mucus membranes were always dry and thyroid values were off, so I went to the thyroid specialist. The diagnosis was secondary hypothyroidism. My neurosarcoid specialist put me on Humira injections once a week. I had to stop it in early 2011, due to a presumptive cellulitis, which went away with antibiotics. I restarted it later that year, but stopped it for good in late 2012 because of more cellulitis.
Early in 2013, I was hospitalized twice for cellulitis. During 2013, my gastrointestinal doctor told me I had Crohn’s Disease. The day before Christmas, 2013, I developed a (thankfully) mild case of shingles. And during this long period, my rheumatologist said I had “mixed connective tissue disorder.”
In September of 2013, I had surgery on my left hand for a finger that snapped a tendon. Surgery was repeated in February of 2014, and this time, I developed a severe wound infection… In addition, I developed sepsis, and was admitted for treatment for almost two weeks.
Two months later my left elbow developed cellulitis, and I was admitted for debridement. The whole summer was spent mostly in bed with an open elbow wound and a contraption that maintained suction to keep it clean. The wound was finally closed by a surgeon in October, 2014.
In November, 2014, I cut my left foot while packing to move. By March, 2015, I couldn’t bear weight on the foot. Three months later, I came within hours of losing my toe; it was being strangled by this strange lump that didn’t show on X-ray or MRI. The growth turned out to be a sarcoid cyst. The surgery had to be repeated in January of 2016.
Theresa credits her husband for his patience and dedication, taking her to all of her appointments. She believes that along with genetics, environmental triggers played a main role in the development of her health problems. From growing up in Army housing, time spent in moldy buildings, working in a hospital with low hygienic standards, to various other toxin exposures. Theresa wants other patients to know that they are not alone in seeing specialist after specialist and having so many appointments. She also hopes to see increased awareness of sarcoidosis by physicians in the future.