It is a known fact that discouragement visits everyone from time to time. Well, I can tell you that I received a whopping dose of discouragement when I was diagnosed with Pulmonary Sarcoidosis.
About 8 years ago, I went to my primary care doctor, at Cleveland Clinic Florida, to check out an itch that seemed to be coming from the inside of my body. Scratching, applying topical creams and using all the home remedies recommended did not help at all. The primary care doctor referred me the Gastroenterology Department then the Liver Transplant Department and finally the Pulmonary Department, where after much testing, a final diagnosis of pulmonary sarcoidosis was made. Who would have thought that an itch would affect your lungs.
Sarcoidosis, is a rare condition that causes your immune system to overreact and make lumps or nodules called granulomas. Granulomas can form almost anywhere in the body, but they are commonly found in the lungs or lymph nodes. There is no specific cure and no known way to prevent sarcoidosis. Only treatment.
My treatment plan would require daily doses of steroids and have blood and lung function tests every few months. When I heard steroids and the undesirable effects, I refused to take the medication. My pulmonologist tried to put my anxiety at ease. However, what I heard was I could die from this disease, just like other people of color if I didn’t take the medication. However, taking the medication would result in “moon face”, weight gain, breathing issues and other bodily changes.
Talk about discouragement! Before this diagnosis I was on track to become a National Sales Director with Mary Kay Inc.
Well, I took the medications, showed up for the many lung function tests, experienced the many physical changes to my looks and body and fought with much determination to get my health and life back.
Fast forward to today.
I am still a patient living with pulmonary sarcoidosis
I continue to have lung function tests done quarterly
I no longer have a “moon face”
I am 20lbs lighter
I am currently off steroid medications
I am a Patient Advocate for the Foundation for Sarcoidosis Research
(Awareness for others…. therapy for me)
I tell people dealing with sarcoidosis or any lung condition, to follow their doctor’ regimen and take the meds. It’s not always easy, but please do it. Yes, it’s a difficult time, emotionally and physically, but just know that life doesn’t have to end with the diagnosis. There are phenomenal doctors available, with resources to help people with lung related conditions.
Debra Thompson