Hi! Welcome to my blog!
I know these “About” things are supposed to be short, but I have a gazillion health issues. To make it easier to skim, I divided it by topic: the thyroid history is first, the endometriosis is second, the repetitive strain injury is third, the Lyme disease is fourth, and the allergies are fifth. If you want to read my Lyme disease story in more detail, go here. This section is a work in progress, and I’m trying to figure how to make it shorter and easier to read.
1) Thyroid: I only had a working thyroid until I was five. I developed hyperthyroidism seemingly out of nowhere, and the local doctor wanted to remove my thyroid. My mother looked up the possible side effects of thyroid removal in kids and freaked out: morbid obesity, severely stunted physical and mental growth, and other pleasant things.
She somehow found the weirdest alternative doctor in New York City. He was a frightening, scowling man with a musty office filled with children with twisted limbs and odd neurological tics, refugees from “normal” pediatricians. I hated him and would cry before office visits, but whatever medicine he used allowed me to keep my thyroid. (I seem to remember my mother’s mentioning Lugol’s Solution, which is a very old remedy for hyperthyroidism, but I’m not 100 percent sure.) Anyway, after he had “fixed” my thyroid, he had the nerve to retire and then die, and my thyroid, as if in protest, decided to swing in the other direction. I was diagnosed first with hypothyroidism and then with Hashimoto’s thyroiditis, the autoimmune form of hypothyroidism. And so began my many years of taking Synthroid (the crappy synthetic thyroid pill). In early 2014, I switched to Armour Thyroid (naturally derived thyroid hormone).
2) Endometriosis: When I was in my late teens, I had serious pelvic pain, and I began my history of self-diagnosis by deciding I had endometriosis. My gynecologist, who had the worst possible name for a gynecologist (Dr. Penisi), refused to listen to me, so I found another gyno who diagnosed it through laparoscopic surgery. At the time, there were three medications for endometriosis: birth control pills (which can cause candida overgrowth, which can make endometriosis worse); Danocrine, which causes anxiety, weight gain, depression, and sprouting facial hair; and Lupron. Even in those earliest days of the Internet, Lupron had its very own “Lupron Victims Page,” although my doctor said it was perfectly safe. After I ditched that doctor, I found a real endometriosis specialist, and over the years I’ve had three more minimally invasive laparoscopic surgeries.
3) Repetitive strain injury: Despite the thyroid disease and endometriosis, I was more-or-less functional. I got a B.A. and a job in financial publishing, copyediting newsletters, creating basic computer illustrations, and performing administrative grunt work. The job required eight to nine hours of uninterrupted computer use each day.
My boss insisted I worked too slowly. He, of course, did everything super fast. I ascribed his hyperefficiency to his being extremely smart: Choate, Yale, able to quote Shakespeare and Homer, the whole nine yards. Actually, he worked fast because he was addicted to crystal meth. He dashed around our small office, giving orders at such breakneck speed you couldn’t even take notes. That should have been a clue, but at the time I was really naïve. I began to work harder. I didn’t realize I was setting myself up for repetitive strain injury (RSI). By the time my boss left for a fancy drug rehab, my new boss expected me to keep up the pace. And my workload grew and grew.
I stuck it out for seven more months, wearing finger-to-elbow braces on each arm. I kept hoping my physical therapy would kick in, but in the end I had to leave the job. By the time I left, I had carpal tunnel syndrome, cubital tunnel syndrome, radial tunnel syndrome, and tendinitis.
I lost my ability to type and eventually I got surgery for my severe pain and numbness. While the surgery took away much of the symptoms, I still need to use voice-recognition software and I draw on an iPad (there’s less pressure on the arms and wrists). In the last few years, voice-recognition software has improved. It’s far from perfect, but without it, people like me wouldn’t have access to the Internet and all its important information (and cat videos, of course).
4) Lyme: After I left the job that caused my repetitive strain injury, I decided to go to grad school to find a career that would be easier on my arms. I was getting straight As and loved the program, but somehow I herniated a disk in my lower back. The resulting screaming agony led me to get a bunch of MRIs, which showed more herniated disks. Still, no doctors wanted to operate on my back because the herniations were small, and they couldn’t figure out why they were causing me such misery. Finally, because of my pain and my sensitivity to smells, light, and sounds, I was diagnosed with fibromyalgia. I quit grad school. I was studying to be an English teacher, and it was obvious my body couldn’t handle it.
But the fibromyalgia was not, as I had been told, due to “unknown causes.” The doctor who diagnosed it neglected to emphasize that I had had a positive Lyme disease Western blot test. Her exact words: “You have a few positive bands on the Western blot, but I don’t think it means anything.” Mind you, this was one of the crappy Lyme tests, the ones with so many false negatives. I was positive on the “new infection” (IgM) part of the test even according to the standards of the CDC, yet she dismissed the test, possibly because I did not have exactly five IgG (past infection) bands the CDC also requires (these tests were designed for survey and not diagnostic purposes, but they are used for diagnosis even though they are notoriously inaccurate). She told me Lyme tests have many false positives, which I now know to be untrue; false negatives are the real problem. She didn’t even give me the few weeks of doxycycline that many mainstream doctors believe is enough to cure Lyme. She sent me home with a prescription for pain meds and the news that I would have fibromyalgia forever.
In 2013, a friend got Lyme and convinced me to search for that old test. My friend told me that fibromyalgia symptoms were often caused by Lyme.
I didn’t even remember that the test had been positive: I just remembered that I had been tested and the doctor said not to worry. Famous last words.
I found an LLMD, and started getting the treatment that should have started in 2009. I’ve been treating since early 2014.
5) Skin and Food Allergies: In 2010, almost a year after the positive Lyme test that had been ignored, my immune system and my skin decided to go nuts. Hives, rosacea, seborrheic dermatitis, rashes, you name it. I went from “you don’t look sick” to “oh my God, what happened to your face” in a few months.
I went to seven dermatologists, hoping one could make the horror disappear. The seventh was an allergy specialist, and he thought maybe allergic contact dermatitis might be contributing to my skin problems. Of course, I didn’t think I was going to be allergic to anything.
So, it turned out I had TONS of allergies. I’m allergic to:
1) nickel (the most common metal to cause allergies)
2) gold (also a fairly common allergy, but less well known. Gold had the dubious distinction of being voted the 2001 “Contact Allergen of the Year”—this is like Miss Universe for allergens.)
2) two preservatives found in beauty products, diazolidinyl urea and methyldibromonglutaronitrile/phenoxyethanol (that took me a while to learn how to spell)
3) a chemical found in fragrances, cinnamic aldehyde
4) two dental compounds, methyl methacrylate and 4-tolyl-diethanolamine
5) one natural substance, bee propolis
I had become allergic to all my haircare and skincare products and much of my dental work (I had a separate patch test for dental allergens.) I also had new food allergies:
1) all milk, even goat milk
And some food sensitivities, including:
I now have an app which tells me which skincare products I can use, and I follow a low-carb, low-histamine, no-sugar, dairy-free, gluten-free, very boring diet.
I spent the first few years of my illness undiagnosed, coping with pain and and not dealing with the root causes. Coping with pain takes a lot of time and money: acupuncture, physical therapy, osteopathy—you name it, I’ve tried it.
I have lots of brain fog, yet I need to research; this is one of the reasons I started this blog. I spent the last few years being too depressed to do anything at all. Now I want to find others who share my illnesses or relate to me, and to tell the crazy stories of my life, because life with chronic illness is truly crazy!