Member Spotlight: Richard Bozanich - Nov 22
- Last Updated: 29 November 2022 29 November 2022
"One morning in October 1991 my alarm went off and I woke up and life was never the same again."
At age 5 I became ill with mononucleosis and missed most of kindergarten. During my junior year of college, I fell ill with mono again but I did graduate college and then moved from California to Boston where I worked at the Harvard Business School and lived on Beacon Hill. My career as a writer and editor then took me from Boston back to Los Angeles, then on to Washington, D.C., Tampa, Dallas and back to Los Angeles (there’s time in Denver, too!).
My bachelor’s and master’s degrees are in journalism and I loved the field and was good at it eventually being hired to be the managing editor of a daily newspaper before age 30. It was a demanding job but I thrived on it. One exciting aspect of working in news is that once the newspaper was put to bed we got to start all over again the next day.
One morning in October 1991 my alarm went off and I woke up and life was never the same again. My then-primary care doctor ran tests and he said: “You have something called Chronic Fatigue Syndrome but you need to find a specialist because I don’t know how to treat it.” Unlike others, at least I had a name and a diagnosis. Using what little energy I had, I approached investigating my illness the way a reporter researches a story — since this was pre-Internet, I began making calls and learned about the CFS outbreak in Incline Village, Nevada, and about Dr. Paul Cheney, who had moved his practice to Charlotte, North Carolina. My mother put me in a wheelchair, got us on a plane and we went to see Dr. Cheney. He knew which tests to run such as a Neuro-SPECT Scan by Dr. Ismael Mena and neuro-psych testing from Dr. Sheila Bastien in Berkeley, California. The results of the tests proved that the unending fatigue, pain, brain fog and unrestorative sleep and the myriad other symptoms were NOT “all in my head.”
Aside from prescription medications, Dr. Cheney instructed me on how to give myself deep intra-muscular doses of vitamin injections as well as taking a prescription dose of sublingual troches of an enzyme from a specialty pharmacy. A referral to a nutritionist in Arizona led to an unfortunate detour causing me to waste away to 119 pounds necessitating my mother to fly us to Charlotte to see Dr. Cheney, who had me admitted to the hospital in February 1994. Most of what I remember from that time is the 1994 Winter Olympics in Lillehammer on the TV in my hospital room and being on a morphine drip. It was a 30-day hospital stay. One night in the hospital I remember saying to myself: “You’re a tough old bird.”
After getting some weight back on my bones, I asked Dr. Cheney for a referral to a CFS specialist closer to home.
I realize this illness is different for different people and the treatments may help some. In 1999 my then-physician prescribed an anti-viral for me and in two weeks my body felt a difference as the anti-viral seemed to be working on the illness as a whole. It was not a cure, but I was better. And then that particular medication stopped working and I went into a terrible crash — similar to the one on that first morning in October 1991. Finally, a different anti-viral was prescribed and while it didn’t provide the boost that the previous prescription had, it did allow me a better quality of life.
I am very grateful for Massachusetts M.E./CFS for allowing me to participate in the online support groups. Mass M.E./CFS is a wonderful organization with incredible people who help those who are suffering. Those of us with chronic illnesses often become invisible — who aren’t able to find adequate medical care and/or do not receive support from friends, family members, the medical community, etc. The support groups provide a place where we are able to feel supported and support each other and they have been a lifeline for so many of us.
Some years ago a journalist with a chronic condition was asked if he ever thought about what his life would be like if he didn’t have that condition. “What if your life took a different path?” And he answered that this is the path that he is on. It is the only path. While we all might ponder “What if’s?” this is the path that our lives took. I choose to believe that I am not “less than” because of M.E./CFS. As difficult as it might feel at times, I still get pleasure from interests that give my life meaning.
Member Spotlight - Phil Chernin - Oct 22
- Last Updated: 04 October 2022 04 October 2022
In 1983, at 22 years old, I was diagnosed with spondylolysis and spent 11 months in a back brace. After a few months, I began having bouts of fever, sore throat, diarrhea, bronchial and sinus infection. I had been active in the martial arts and because the back brace limited my physical activity, my doctors believed these symptoms were “metabolic readjustment” to being sedentary, and that they would resolve on their own. After a year, it was evident that no such resolution was going to happen. I was spending about a week of every month bedridden and most of my remaining time managing intense muscle pain, fatigue and what I now know to be brain fog. I consulted dozens of health providers to no avail. Many were troubled by their inability to understand why I was experiencing these symptoms. Some were dismissive. One explained that I was malingering and referred me to a psychiatrist. In 1987, I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) by Dr. Anthony Komaroff.
I served as librarian and telephone counselor for the Massachusetts CFIDS Association (now MassME/CFS & FM Association) for several years following my diagnosis. I continued to work full-time, married and had children, struggling constantly to manage the effects of my symptoms on our family life and in my work. We lived through hundreds of crashes, made accommodations in every aspect of our lives and simply trudged through the day to day, fighting off the despair for lack of any effective treatment. Then, quietly and undramatically, my symptoms became milder and the need for bedrest less frequent. Eventually, round about the year 2000, my family and I began to talk about the illness in the past tense. Bewildered yet grateful, it would remain a mystery how, after 17 years, it just went away.
But twelve years later, in 2012, it returned with a vengeance. 2012-2014 were very dark years, which shook up my family, nearly collapsed my business and altered the course of my life. In 2014 my family and I travelled to England where I went to see Dr. Sarah Myhill. Using blood tests that were unfamiliar to my doctors at home, Dr. Myhill diagnosed me with mitochondrial myopathy. She prescribed a mitochondrial cocktail, including Ritalin, Glutathione, Ubiquinone and several other supplements. Having an actionable diagnosis was encouraging and led me to Drs. Felsenstein, Systrom, Sassower and Kaara in Boston. These doctors confirmed the mitochondrial myopathy diagnosis and identified other disorders including disordered ventilatory control, orthostatic intolerance, vestibular migraine, low IGA, preload failure, and rhinitis. In 2015 I underwent sinus surgery, started Mestinon and made some alterations to the mitochondrial cocktail. In 2016 I began shiatsu treatments, oxygen therapy and a Chinese herbal anti-viral formulation.
In 2018 I was well enough to begin volunteering again with MassME! I am grateful to be able to apply both my professional skills and my hard earned experience managing a chronic illness to help this great Association continue to grow and provide critical support to those of us who suffer with this dreaded illness.