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As an infant, I had immunodysfunction so severe that my parents were told I would not live to grow up.
No clear diagnostic label was applied, just that my immune system wouldn't work right. I had measles, mumps and chicken pox multiple times each. Doctors who saw me for more than one of these incidences of a single illness were baffled. Later, when I was moving around a lot, doctors were disbelieving, assuming the previous diagnoses had to have been wrong. Many times I have been told, "that just doesn't happen."
The first iatrogenic disease I can identify with certainty was from a defective batch of smallpox inoculants. I was one of many people who got sick. I had a high fever and seizures for
days. This was when I was about sixteen months old. My mother, through this experience and the many high fevers that accompanied measles and other illnesses, spent a lot of time sponging me with cool
water or wrapping me in wet sheets. I recall several times, at various ages up until I was a teenager, watching the steam rise from my cocoon of wet sheets.
My parents took opposite views of my poor prognosis.
My mother was extremely protective, trying to guard me from any source of infection and then from allergens when we discovered that I also was allergic to many things. I never had a puppy or kitten for more than the few minutes or hours it took my mother to find out and make me return the animal. My father thought that if my life was to be short, I should pack as much experience as I could into the time I had. My natural inclination was to do it my father's way. I wanted to explore and try new things. Books became a compromise that accommodated my curiosity and appeased my mother's fears. After my father's death when I was seven, I think my mother tried to fulfill his wishes for me. She always seemed to be in conflict over whether to let me follow my instincts, or to keep a close eye and firm hand on me.
In the years right after my father died, my mother and I moved from California to Kansas and I became even sicker, exhibiting what seem to be my first symptoms of fibromyalgia. In fourth grade,
I was treated for an ear infection with a new antibiotic, aureomycin, and had a bad reaction to it.
When my mother called the pediatrician who prescribed it and told him I had gotten worse, he told her to double the dosage and see him on Monday. Over the weekend, I became much worse and she got an on-call physician the next time she called, which probably saved my life. He recognized the drug reaction and discontinued that treatment.
In fifth grade, there were many days when I'd awaken both weak and stiff, sometimes literally unable to get out of bed except by rolling out. For many weeks I'd follow the pattern of going to
school on Monday, being too sick to get out of bed on Tuesday, and gradually recovering until by the weekend I was able to be up and around so that my mother would send me back to school on Monday again. I was
accused of malingering, but there were some doctors who took my symptoms seriously. That year the diagnoses I received included rheumatic fever and glandular fever.
My mother, around this time, was showing many of the same symptoms that I have now, such as brain fog, odd skin sensations, and muscle pain, which are associated with FM.
Menarche came early for me, at age ten. My periods were always irregular and often extremely painful until after my first child was born.
They never became regular either in spacing or in quantity of flow, but eventually they were less painful.
I had been intellectually precocious and was sexually precocious, too.
When I wanted to get married at age 14, my mother naturally objected but I was able, possibly with the help of my father's memory speaking in her mind, to persuade her to sign the consent. In two months I was pregnant, having my first daughter when I was fifteen. The part of my life from that pregnancy to my third pregnancy, when I was twenty, was the healthiest time of my life, physically. My mental health was another matter. The breakup of my marriage, followed by two intense relationships and a wild lifestyle that resulted in trouble with the law and my giving up my two daughters for adoption, seems now like an extended nightmare. I recall only bits of it.
I married again when I was twenty and soon became pregnant again. About that time my allergies changed. I was no longer having a lot of "hay fever" nasal/sinus symptoms, but had
severe asthma.
I also had intermittent inexplicable fatigue and sometimes I hurt all over. Once again, some doctors thought I was malingering and others treated my symptoms. In one of the high points (or low points) of my career as a patient, an Air Force doctor in Japan decided my asthma was all in my head and put me in the psychiatric ward with the suicidal wife of an officer and about thirty men just out of Viet Nam, who were waiting for their Section 8 discharges.
I can't imagine where that might have led me, if an allergist had not heard about my case in a staff meeting and ordered allergy tests for me.
The battery of skin tests had to be done twice because some of the pin-pricks on my back reacted so strongly that the large swellings obscured results from surrounding patches. Finally they listed about thirty allergies for me, including tobacco smoke, black pepper, trees, grass and many weeds, flowers, house dust, mildew....so much that I became convinced this planet was not my home. They let me out of the cuckoo's nest.
My husband was transferred back to the States when our son was about a year-and-a-half old.
I had just begun allergy desensitization shots. My doctor gave me my files and three vials of the prepared serum. The first vial was what I'd been getting. It was a pale yellow. The second vial, amber, was 1,000 times stronger, and I was to start getting it when I had used up the first in increasing doses. The third vial was dark brown and was 1,000,000 times stronger than the first, 1,000 times the second. The envelope with the vials and orders went in the fridge on the plane with me, and I was to take them to the infirmary at the terminal when I landed at Travis AFB.
That's what I did.
A young Air Force MD received my package of serum and my file of records, left me sitting in the hall long enough to have read everything, and then called me in and gave me my daily shot. The next thing I knew I was slumped in a wheelchair in the hall, too weak to move, with several people hovering around. I owe my life (that time) to an old master sergeant with combat experience who recognized what had happened (the doctor had given me a million times the dose I was ready for) and revived me with a shot of adrenaline to my heart muscle.
The next months...years, are full of memory holes for me. I was too sick to take care of myself and my son. My mother-in-law came and took my son home with her.
My marriage disintegrated. I went through several jobs and lost each one when I missed one-too-many days' work. I got a series of diagnoses, including multiple sclerosis, systemic lupus erethematosus, cranial aneurism, arthritis, borderline diabetes....I don't recall them all. I was given numerous different painkillers and developed allergies to most of them. I never saw my son again. My mother-in-law moved and left no forwarding address. I didn't have the energy or the money to search for them.
After a short prison sentence for possession of marijuana, during which I met two women who had lived in Alaska and said I'd like it here, I moved north. I got here when I was almost 29 years
old, with a wide variety of job skills and a patchwork of education gained in several different colleges, OJT, and vocational courses. I worked as a crisis-intervention counselor at a hotline on weekends, a
48-hour shift, and when I got off at 8 AM on Monday, I went to work as a counselor and job developer for ex-convicts returning to society, a total of 96 hours a week. The job stress led to group therapy, which
got me over a lifetime's supply of neuroses. Mental burnout and physical illness got me out of that dual career after a year.
What followed on that was perhaps the lifetime peak for my fibro symptoms, before I started learning how to handle them.
When I was 32, I had been going to an internist for a year or so, getting prescriptions for asthma and chest pains. He was giving me nitroglycerine for what he called angina, but later EKG
results showed no sign of heart disease. This, of course, I didn't know at the time. I just assumed the doctor knew what he was doing.
I'd gotten to know him pretty well, and I liked him, so, being in what now seems to have been a fibro flare, I told him I hurt all over and couldn't sleep. I was also congested and nauseated, especially in the morning, which I now associate with low blood sugar. My friend the well-meaning internist gave me four new prescriptions for my four symptoms. That night, after the first dose of each, I started having seizures.
knew that my friend Martin had no ill intent.
I didn't blame him. I also knew that I'd had enough of medical incompetence to last me a lifetime. I just quit going to doctors. As I started to recover enough to walk around unsupported, the man I was married to at the time brought me books on natural health and alternative medicine. The first help I got was from Adele Davis's books. I identified part of my problem as hypoglycemia and went on a low-carb diet of frequent small protein snacks. Within a few months I was well enough to walk to the mailbox with my husband's help.
In the years that followed, I started taking cognitive enhancers which helped not just the brain fog but the insomnia.
I learned to switch off pain with focused attention. I developed carpal tunnel syndrome and severe arthritis in my hip, and treated them with vitamin B6 and glucosamine and chondroitin. I went on and off my hypoglycemia diet because I've always loved gooey sweets and sometimes the cravings were enough to make me convince myself I could handle the carbs. All this time I was reading a lot, still trying to find the cause of my muscle pain and the "stumbling and fumbling" that came and went with no discernible pattern.
When I was in my early fifties, sitting with an old friend at a community yard sale, talking about our troubles, I first heard the word, "fibromyalgia". A year or two later, I had read
enough to think that this was what I'd had all along, maybe not the only health problem I had, but certainly a major portion of it. I saw Devin Starlanyl's first book, bought it, read it and started wishing I
could find a way to get some guaifenesin without drinking cough syrup.
I have yet to see any tablets or capsules on a drugstore shelf and didn't know that it was available without a prescription until I'd gone online when I was 56 years old. A year before that, I had a health crisis, probably a virus or other infection that exacerbated the asthma I'd put into remission for more than a decade through diet and prayer. After waiting a few months for the illness to improve on its own, and just getting worse, I went to the local clinic for some asthma meds. While I was recovering, I took Devin's book and a file of clipped articles to the clinic and talked the PA there into prescribing guai for me.
I'm still fiddling with the dosage, wanting to find one that will get me better fastest.
March 11, 2001
Kathy Lynn, 56; Upper Susitna Valley, Alaska;
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