A Fork in the Road
Thirteen years ago, I was diagnosed with RRMS: relapsing-remitting multiple sclerosis, at the age of 57. I denied the diagnosis strongly: my family had a history of Parkinson's Disease, and I had long assumed that my beginning tremors would be attributed to that.
My dad, his mother, and his two brothers had all been diagnosed with PD in their late seventies after retirements, when it was reasonable to expect to slow down, take it easy and let others pick up the slack. But MRIs and Lumbar Puncture and a contentiously resisted but finally agreed to traditional cerebral angiogram to rule out vasculitis confirmed the neurologist's diagnosis .. at least, to his satisfaction.
Synthetic hormone injections and a biomarkers study
So I began injecting a synthetic hormone nightly with great reservations and a lot of help from my husband, who is a retired metal worker, volunteer firefighter, and first responder. I still had my doubts and resentment of the "treatments" and fear that they might do more harm than good if erroneous, which brought me down into a deep depression, that remains today.
I continued the injections for four long years, nightly, marking their locations (on seven different body parts) on location maps made of paper towels, so that each injection was always at least two square inches away from the previous one. I recorded data as my blood pressure routinely dropped at least twenty points, and often thirty or more, following each night's injection. No one was concerned by that drop, except my loving husband who encouraged, counseled, and consoled me throughout that part of my journey.
Soon after that MS diagnosis, I joined a study run by the National Institute of Health and traveled to Bethesda once every 18 months for four years. This study was looking for early familial biomarkers of PD, as I believed I was a good candidate. Their neurologist confirmed the MS diagnosis and denied any early signs of PD, to my dismay.
My MS symptoms worstened
After those four years, my cognitive impairment symptoms were increasing. I was losing my ability to learn new things. My short term memory was failing, my sense of smell and taste were diminished, and hand tremors (called intention tremors) were worsening. On hot humid days, my vision blurred and sometimes doubled, and optic neuritis was confirmed ... another tally in the MS score sheet.
I had to retire from my teaching position two years earlier than I planned. I immediately quit the MS injections as they had not met my expectation of delaying symptoms of MS. And suddenly, within a month of retirement, I was at the dermatologist and diagnosed with skin cancer.
Diagnosed with non-melanoma and melanoma
The doctor told me that only a small percentage of people were diagnosed with all three skin cancers ... basal, squamous, and melanoma ... but I had all three. In my rebellious mind, I blamed the nightly injections for having diminished my immune system and allowing the skin cancers to 'blossom.' I sent my suspicions in a letter to the FDA. They never responded.
Years of skin cancer treatment and surgeries
I have been without MS treatment now for nine years, and during those nine years, I have had more than a dozen skin cancer surgery sites; six different malignant melanoma sites, five squamous sites, and four basal sites. One melanoma site on my forearm was the first surgery site, taking three days of Mohs surgeries. Three years after, two more Mohs surgeries, as the same site recurred. Today, two years later, I am looking at another brown spot on that very same scar line and will see the dermatologist in a week or two, and no doubt the surgeon soon after for another round of Mohs.
Meanwhile, my younger brother was diagnosed with Parkinson's Disease at age 59; two years older than I was when I was diagnosed with RRMS. My neurologist has agreed that what I have is now called 'benign relapsing remitting' multiple sclerosis, which would never need the nightly injections. I have nearly no mobility issues; it is, truly, all in my head. Cognitive issues continue to progress downward. Depression remains. My loving husband, who had become a woodworker and loved making battery-free old fashioned toys for children, died on Christmas morning four years ago. I am facing Covid-19 virtually, alone. I have four grandchildren but don't see them as I'm 'vulnerable' and they live far away.
I keep busy making fabric face masks and leaving them on a bench at the end of my driveway. I have a small fabric shop and donate fabric to many other fabric face mask makers, believing that in this way I can continue to be worthwhile. I miss my husband every day, and long to be with him.
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