A Sarcie’s Story
In 2002, a routine doctor visit revealed a “shadow” on my right lung. For the next six months I rode the merry-go-round of diagnostic tests. The initial CT scan came back “probably lymphoma” and things, frankly, went down hill from there. I had just escaped a really bad marriage, I was helping to raise my 5-year-old grand daughter and frankly, the LAST thing I needed to help my spiritual recovery along was a devastating illness.
Long story shorter, when they took a tissue sample to stage the cancer lo and behold no cancer. Miracle? Medical anomaly? Misdiagnosis? None of the above, sarcoidosis. Never has there been a woman more thrilled to discover all she had was a devastating, chronic, incurable, disease with no known course of treatment. Yeah, I was doing a happy dance!
What is Sarcoidosis? According to Stopsarcoidosis.org, “Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue. This disorder affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure” click here to read more.
What’s living with it like? Well, take asthma, pulmonary fibrosis, rheumatoid arthritis, glaucoma, sjogren’s syndrome, multiple sclerosis, fibromyalgia, neuropathy, cardiomyopathy, arrhythmia, depression, parkinson’s disease, raynaud’s phenomenon, hypertension, cirrosis, eczema, gerd, influenza, pneumonia, migraines, soul-crushing fatigue, and sudden death, throw it all in a blender and hit “frappe.” That’s kind of what it’s like. Sarcoidosis is know amongst medical professionals as “the great mimicker” it can mimic pretty much any disease and I’ve dealt with a lot of them.
Over the next few years I learned, slowly, to cope with the soul crushing fatigue and the chronic cough that had my enlightened and ever compassionate co-workers (yeah that’s sarcasm) silently closing the door to my office and following me around with a can of lysol which, coincidentally, made me cough more. My pulmonologist was the first doctor to ever tell me “we don’t understand your disease, there’s no cure and no clear treatment plan but you and I will learn and get through this together.” Yes, there are still some wonderful medical people out there and I’ve been blessed to know more than one.
During these years a couple of wonderful things happened to me. I took charge of my own life and shook myself out of the depression that so often follows freedom from abuse. I started a healthy diet and exercise plan, lost 74 pounds. I was on heavy doses of steroids for the first two years which made that weight loss a real challenge but I threw myself into it and I got better, not well, but less bad. The second was a turning point for me that came while sitting in a friend’s office, complaining about the fatigue when he said “I have MS, I know how it is.”
Wait … what? YOU have MS? My first reaction was to feel really, really stupid for complaining *ahem whining* about my silly little disease. The reaction that I voiced was “OK WOW! What’s your secret? C’mon SHARE!!!” This led to a many years of animated discussions about allopathic vs. integrative vs. holistic vs. natural medicine, shared recipes, movie dates and ultimately true love.
Ah but that’s a tale for another day.