My Health: A Perfect Storm of Suck

CATEGORY / words AUTHOR / Fox DATE / December 3, 2016

I am regularly asked why I wear an eyepatch, if I really do need a cane, and in general what’s wrong with me.

The short answer is: a perfect storm of bad luck, crap genetics, trauma, instability, and the many failures of the American health care system.

For a more thorough and in-depth explanation, for my diagnoses and how they have manifested over time, please keep reading.

From the very beginning, conditions for my arrival were not ideal. Even though she was seemingly healthy, I started trying to escape my young mother’s womb a full three months before my due date. My parents were told I had a 5% chance of survival, and that I would most likely be blind or brain damaged.

I was neither. I caught up to my peers, and then exceeded them. I was a brilliant child, reading at age 3, considered for private academies or skipping a few grades (but didn’t). Every standardized test throughout grade school put me at the 99th or 98th percentile. Nobody was aware of the genetic failures slowly unfurling.

On my father’s side, I’ve a great aunt who was born with a visible spinal deformity and died young of unclear causes, and to whom I bear a striking resemblance.

My mother’s side has a history of Tourette’s Syndrome, Obsessive Compulsive Disorder, Trichotillomania, Attention Deficit Hyperactivity Disorder, Autism Spectrum Disorder, etc. This cluster of disorders is also co-morbid with Ehlers Danlos Syndrome, a genetic condition where connective tissue (meaning organs, tendons, joints, skin, etc.) is created stretchy instead of strong. This tissue disorder often leads to pelvic organ prolapse and/or premature birth. It also leads to unstable joints, heart issues, digestion issues, poor circulation, Postural Orthostatic Tachycardia Syndrome (POTS), etc.

My mother’s side is also rife with Poly Cystic Ovary syndrome and endometriosis. Endometriosis causes uterine tissue to grow where it shouldn’t throughout one’s abdomen, and creates a host of issues. PCOS interferes with insulin, alters hormonal balance, and can affect a person’s development in utero, increasing physical and mental masculinization even before puberty. There is a massive correlation between PCOS and transgenderism, and some consider it to be in the realm of intersex conditions.

Lucky me, I ended up with everything above, except for the Tourette’s. It took decades to figure out and find the connections.

I thought it normal to obsessively rearrange my furniture on a monthly basis in grade school. I thought it normal that I was the only girl who could climb the rope in gradeschool gym class, and looked at the other girls with disdain when they tried to keep up with me and my band of boys at recess. I came to the logical conclusion that I was going to be born a boy, switched to being a girl at the last minute, but ended up in-between. Once puberty began, I thought it normal that I only got my period three or four times a year.

When scoliosis was discovered during one of the standard elementary school screenings, it was classified as idiopathic, and nobody mentioned any familial history of such things. It was not until I was 19 that a new doctor pointed out that one of my vertebrae is wedge shaped, which is what causes such a sharp curve in my upper spine, and then two compensating curves.

phantom ears

Physical trauma helped complicate the landscape further. At age 4 I swung upside-down with full force right into an iron fence at Disney World, and needed stitches on my head, right by the temple. Then at roughly six years old, I had a playground accident where I fell with such force I fractured my sternum. I could make it pop with proper contortions. In early grade school I bashed my tailbone on a metal spring loaded seesaw so hard I could hardly walk. I did the exact same thing a year later. I discovered many years later that as a result, my tailbone is fractured and bent at a sharp angle.

Busted Tailbone

At age 12 I fell off a swing onto my neck and had to be wheelchaired off the playground. Before that point I was already seeing a chiropractor for massage and adjustment twice a week. Due to the scoliosis, my spine had also rotated askew, causing my ribs to protrude unnaturally and grow larger on one side. This created a hump, leaving my right shoulderblade without the space to lay flat. My right shoulder is always pressed forward, my right scapula area in perpetual discomfort. A pediatric spine surgeon told my parents that surgery would be purely cosmetic, ignoring my pain, missing completely the malformed vertebrae and rotated ribs. I was simply told to do back exercises, and my ongoing agony was blamed on my lack of follow through.

A crosssection of my ribcage and spine, while laying on my back. The sternum is the small half moon of white centered on top, the white dots above it on either side are the center underwires of my bra. The white oblong shapes are my ribs. The large white pacman ghost shape is my spine.

To further obfuscate things, I moved to a rural area in late grade school, and considering the symptoms that followed soon after, this is likely when I contracted Lyme Disease, which went undiagnosed until my thirties. The grinding sounds emanating from my joints were so audible that the other kids would get grossed out and  run away as I chased them while rolling my shoulders. My mother once burst open my bedroom door in fright of an electrical fire she’d heard through the walls, mistakenly identifying the popping sounds of me laying in bed and sleeplessly rotating my ankles. In sixth grade I started getting stage fright and anxiety. By junior high I developed chronic sore throats, and my tonsils became perpetually enlarged for the rest of my life. My lymphnodes would also swell without clear cause. I developed recurrent heel pain, and missed a full semester of gym class. Instead of seeing a rheumatologist, the chiropractor diagnosed me with tendonitis, and it was left at that.

My grades started to slip. Between the undiagnosed PCOS and Lyme, I started to gain weight and lose all stamina. My back started to twitch and throb in strange muscle spasms. I grew embarrassingly hirsute and given the nickname “Facial Hair Rachael.” I developed severe heat intolerance, and would grow lightheaded with ease. By high school, Trichotillomania kicked in, and I began uncontrollably pulling my hair out, strand by strand.

I started to feel the completely new sensation of not being able to learn something. I’d never had limits on my brain before, but suddenly, no matter how hard I tried, certain subjects/concepts wouldn’t stick.

I’d kept insisting I needed glasses, but when I was brought to the optician, my vision was 20/20. I didn’t realize it then, but the Lyme Disease was weakening all the muscles on my right side, the smallest and most vulnerable being my eye muscles. I’d been someone who loved climbing, prided myself on my strong hands, and ability to scale structures. Suddenly one day, I couldn’t get down from my roof, and felt uncharacteristically uneasy. I also started having difficulty riding my bike in the woods, having issue keeping track of the ground. My eyes were having difficulty working in tandem, and my depth perception was starting to falter. I did not understand.

When I went to college at 18, the Lyme symptoms flared considerably. Double vision became more apparent, and I thought I was hallucinating. I couldn’t read, couldn’t concentrate. I sank into deep depression. I started getting lost driving on well known roads, and developed difficulty remembering my right from my left. I went through a complete persona shift. I broke up with my boyfriend, dropped out of school, started shoplifting. I was a scattered manic depressive mess. I went suddenly and strikingly cross-eyed, my right eye muscles too weak, my eye turning inward. This all should have been a sign of significant illness, but I was doubted at every turn.

At age 21 I was diagnosed with “organic brain disorder,” an outdated diagnosis, but indicating that my psychological issues were borne of tangible sickness. However, the root cause of my brain dysfunction was not sought out. I was struck with bouts of agoraphobia, calling my roommate at work to bring home cigarettes for me, spacing out what few I had left to fill the hours, rather than walk a block away and buy them myself. Severe neuropathy overtook most of my twenties. It felt like ground glass was floating through my bloodstream, the worst of it settling in my hands and feet, always more painful on the right side. My right arm and calf ached constantly. My limbs were wracked with sudden stabbing pains, or pins and needles that felt like I was made of fire. These sensations were the Lyme Disease killing off my nerve endings, working its way inward. It was torturous agony, in both experiencing the pain, and the utter dismissal from family and doctors alike.

map of pain

With no concept of my having Lyme Disease, but well aware of my spinal issues, my nerve related pain was assumed to be from my worsening scoliosis. And yet, every scan of my spine showed little nerve impingement. As a twenty-something with purple hair, doctors overwhelmingly assumed I was simply a drug seeker without a true condition. I spent the entirety of my twenties desperately trying to get or keep health insurance, hoping that a doctor would figure it out and fix me, so I could finally pursue my creative aspirations. I only worsened, while being severely over-medicated with every sort of anti-depressant, anti-psychotic, muscle relaxant, or nerve blocker on the market. Drawing was frustrating and painful. Writing was filled with missing words. Reading was a sisyphean task with the memory retention of a goldfish.

A neuro-opthalmologist opted to give me corrective surgery on my right eye. He shortened the muscle on the outer edge, so my eye is now physically unable to turn all the way towards my nose. He said it would fix it forever. While I am no longer visibly crosseyed, my eyes didn’t work properly together, and after less than a year, the double vision returned, and I was back to thick prism lenses.

By age thirty, my right arm was noticeably weaker than the left. The stabbing pain lessened, but a kind of clumsy painful burning numbness, similar to frostbite, settled in my hands and feet, exponentially worse in my right side. My stamina had continued to fade, my body filled with an all-over aching my doctors now referred to as “fibromyalgia-like pain.” (In fact, one doctor told me that I probably had fibromyalgia, but they didn’t really know much about it, so he couldn’t really help me, and his only advice to me was to move back home with my parents and go back to college.) My teeth are see-through, and began chipping and crumbling, and cavities are rampant. Thanks, EDS!

I fought to get diagnosed with PCOS. The doctors refused to believe I had it, because I wasn’t “fat enough,” even though I’d been struggling with my weight my entire adult life, would only get my period three times a year, and was embarrassingly hirsute. Eventually, out of mad frustration, I went to a doctor without having shaved or waxed in over a month. I clearly had the goatee of a teenage boy, and to my grim amusement, when the male gynecologist in training attempted to examine me, my bush was so prodigious that he couldn’t find his way in, and needed assistance from his elderly female supervisor. I had finally gotten my point across. They agreed to give me an ultrasound of the lady bits, and sure enough, they found cysts on my ovaries. Not only that, but endometriosis was present, and one of my ovaries was so overtaken from the disease that it was designated an endometrioma. Half of the few times I’ve been on a plane in my adult life, I’ve had what I can only assume is some kind of cyst rupture as a result from the change in pressure. I can’t even begin to describe the pain. Hyperventilating, sweat drenched, “I think I might die” kind of pain. I’ll need some surgery to remove it all.

When I got new Xrays and MRIs taken, the techs often assumed I wasn’t born in this country, because of the condition of my spine. I’ve got sometimes three, sometimes five, sometimes more bulging discs; sometimes spondylolisthesis, sometimes stenosis, sometimes plain old arthritis. It all depends on the quality of the scan and report, and how seriously the doctor would take me. I’ve been told by more than one doctor that I have too much going on for them to be willing to take me as a patient.

The many times I was given brain MRIs looking for evidence of Multiple Sclerosis always came up negative (whew!). However, there has been repeated mention of an irregularity with my pituitary, possibly a pituitary adenoma.

It was in my early thirties that I was tested for Lyme Disease for the first time. For treatment, I was given just two weeks of antibiotics. Soon after, a neurologist decided to give me a spinal tap to see if the Lyme had infected my Cerebra-Spinal Fluid (CSF). The test came back negative, but the puncture took weeks to heal properly.

It was at this time that I sent my MRIs to The Chiari Institute (TCI) for evaluation. TCI specializes in treating only Chiari Malformations, which is when your brain protrudes out of the hole at the back of your skull, putting pressure against your brain stem and blocking the CSF from its natural pulsing flow. A Chiari Malformation fits my many symptoms, is also common with Ehlers Danlos Syndrome, and some of my scans do indeed seem to indicate some degree of herniation. TCI responded, telling me that I was a candidate for corrective surgery! Huzzah!

Unfortunately the brain surgery is costly, and TCI took no insurance but Medicare. My only option to get Medicare was to be on Disability, and since I was only able to do freelance work at that point anyway, I applied. While waiting it out, I was staying with my aunt in suburban New Jersey, where my incredible luck at life continued.

It was there that I was infected again by a tick bite. I had been spending time in the deer-laden back yard when I saw the bullseye rash on my thigh and thought, “oh no, tick bite!” but then dismissed it as my being alarmist and hypochondriacal. Comedy ensued. Shortly after, a new age of sickness fully blossomed and made every symptom I’d ever had flare into a pyre of doom. I was a complete mess. My worst symptom was new, a perpetual headache at the back of my head, a pressure that was only made bearable by laying completely flat. Any incline was too much. I was literally bedridden for some time. I couldn’t be upright for more than a few minutes. I was put on morphine pills, and still in agony.

The many weeks of being trapped laying down in bed finally inspired me to start using an eye-patch. Initially, this was only so I could watch movies while laying on my side, but I soon realized it dealt with the double vision much more effectively than my bulky prism glasses.

bed pirates!

My pain management doctor tested me again for Lyme Disease, and the positive result led him to assume the headache was from Lyme, and prescribed the antibiotic Doxycycline. The Doxy improved my condition almost immediately, and I was able to bathe for the first time in weeks. However, the pressure at the back of my head remained, feeling like someone was choking my brain, the waxing and waning based on external factors like stress and weather and having a constant feed of antibiotics. Over the next year the agonizing pressure slowly decreased to a steady dull pain, but I was then left with chronic, near constant migraine. When I woke, I’d have an hour or two of human existence before the pressure and sharp crazy pain of migraine descended on my world. Botox shots every three months helped reduce the migraines, but daily migraine became my normal for the next ten years.

I finally got approved for Disability, which took three years. As soon as my Medicare kicked in, I once again sent my records to The Chiari Institute. They’d changed their insurance policies since then and had been involved in some lawsuits. This time, they said I wasn’t a candidate. They didn’t say why.

survey.
Other symptoms began and worsened since the new tick bite. Irritable Bowel Syndrome descended on my life, so if I wanted to leave the house, I’d have to not eat for four to five hours in preparation. I developed a searing burning in my muscles, primarily the backs of my arms and fronts of my thighs, making it excruciating for me to style my hair or go up stairs. Most insidious of all, I developed a crippling and debilitating pain in the soles of my feet. Absolutely ANY time spent standing was agony. My feet would be in such pain that I’d have to put a pillow under my calves at night, because even just the pressure of the bed against the back of my heels when lying down was too much. As a car-less person, this was more isolating than ever.

I suffered chronic nausea, and spent countless days laying in bed next to a kitchen pot. Daily nausea medication helped for a while, but didn’t solve the issue. I visited a geneticist who finally diagnosed me with “some kind of Ehlers Danlos Syndrome. We don’t know all the kinds yet” which was vague, but still an incredible piece of the puzzle to have officially supported by doctors.

Meanwhile, because I excel in life, in my late thirties I unknowingly moved into an apartment with a kitchen and master bedroom infested with mold. I literally broke out in hives as I was unpacking, but didn’t put it together for years. Eventually, I figured out that if I overexerted myself and/or ate certain foods; anything canned, anything artificial or processed, anything more than a day old, I’d trigger the hives. Often, though, there was no discernible cause. My overall health started to tank, especially my mental health. I’d sit on the couch and sob because I just couldn’t think straight anymore. Everything hurt. I felt like I had the flu all the time, or was over medicated again though my medications were minimal. I became a severely depressed pajama zombie of misery. I was exhaustively tested for every allergy imaginable, and it was determined that I had Histamine Intolerance, not a true allergy to any one substance, but rather, my system was so wrenched in a state of defense and alarm that it reacts severely to relatively innocuous substances. I still didn’t realize there was a mold issue.

 

During this time I also began having urinary urgency, having to pee every twenty minutes, waking at least four times a night. Attending a movie or a live band was stressful, taking long subway rides painful, spending an afternoon in a park (or even an hour in my backyard) impossible. My abdomen was in constant pain, and any pressure against it was agony. I went to a urogyn and was told I had a grade two prolapsing bladder (cystocele) and rectocele. Surgery for this condition has poor success rate, and is even riskier for those with EDS, so I simply endured the pain.

Years slid by with me in this state.

I had a nine hour neuropsych evaluation, during which it was conclusively determined that I have some degree of brain/nerve damage. This was previously unrecognized, largely due to how smart I started off in life. Even though my mind was ravaged by illness, when interviewed or briefly tested, I was still smarter than average, so nobody took my decline seriously. The disparity between my intellect and test results only occurs in two percent of the population, indicating that my executive functioning is severely disrupted. The clumsiness of my hands in fine tuned movements points to nerve damage, my right (drawing) hand clinically considered “significantly impaired.”

One of the regular treatments I receive for pain management is trigger point injections. This is similar to acupuncture in that it pokes at your muscle knots, but rather than tiny needles it is instead a hypodermic which injects some numbing agent. I looooove trigger point injections, especially around my hump area. I was warned repeatedly that the area I’d always ask to be treated was dangerously close to my right lung, but I threw caution to the wind! And then the inevitable happened: my lung was punctured, and deflated. I was put under (with ketamine, no less), fashioned with a tube between my ribs, and hospitalized for a few days while it was reinflated.

(A year later, the exact same thing happened again. This time, days before my 40th birthday.)

After YEARS of taking it twice daily, every attempt to wean off the Doxycycline brought back the choking head pain after two and a half days. In my ongoing attempt to find answers, I discovered that Doxy is one of two drugs that happen to increase CSF pressure. I suggested to my doctor that perhaps the Doxy was working on my headache not because the headache was caused by Lyme, but because the ORIGINAL headache was caused by a CSF leak that the Doxy was masking. I was brushed off.

Continuing to look for answers, I discovered that agonizing pain at the soles of the feet is THE HALLMARK symptom of Bartonella, a common co-infection of Lyme Disease. I had assumed my foot pain was from EDS joint issues and collapsing arches, and now suddenly considered it was not! I found the herbal protocols recommended by Lyme specialists at reputable sources (like Columbia University), and started taking the basics. Within weeks, the pain in my feet that had crippled me for YEARS was at a tolerable level! My body and muscle pain was reduced incredibly! What wild magic was this?!

And yet… when I tried to wean myself off of the Doxycycline, the head pressure returned within two and a half days. Clearly, the head pain was not related to the infectious disease that was causing my other body-wide symptoms.

I brought my theory of CSF leak up to my doctor again, two years after I initially suggested it. This time, he agreed with my theory, and sent me to a neurologist to be evaluated. The neurologist agreed with my hypothesis (being that the latter tick bite and infection caused an increase in inflammation and CSF pressure, which probably caused my poorly healed spinal tap wound to pop and leak fluid, causing my years of positional headache). “Yup, sounds like a CSF leak!” the doctor said.

After eight years of taking Doxy twice a day, I finally, slowly, weaned myself off. The leak slowly reduced over the many years, I assume? I’ve no idea if it’s still leaking. Perhaps that’s the cause of my still chronic migraines? The migraines may simply be due to the condition of my neck, as ALL my cervical vertebrae have grown bone spurs, and some of the vertebrae have slipped out of place.

After age forty, I finally got up the nerve to see a doctor about getting my prolapsing bladder surgically repaired and lifted. It was during the pre-surgical testing that I was told my sagging bladder had absolutely no bearing on my pain and urgency; those symptoms were from something else, perhaps Interstitial Cystitis (IC), otherwise known as “angry bladder”. To test that theory, I went on the even more restrictive IC diet: no tea, coffee, cocoa, caffeine of any kind, carbonated beverages, fake sugars, artificial flavors/coloring, acidic/tangy/spicy foods.

Within two weeks of this, my pain was gone, and I was able to sleep through the night or watch a movie without having to urinate! After nearly FIVE YEARS of thinking myself forever unfuckable, I discovered I was able to engage sexually! HOW GLORIOUS!!!

At roughly the same time I started taking the herbals, I’d moved out of the master bedroom to the east side of my apartment. I had attributed my improvement in body and mind completely to the herbals, still not realizing that the west-facing side of my apartment was lousy with mold. It was not until the pandemic, when my roommate vacated and I opted to take back my old bedroom, that I realized how severely moldy that room was, and how profoundly it had been affecting me. Even with the windows and doors open, with fans running, it took me days to recover from spending just one night in there. My cats, spending time in that room, started breaking out in hives again, too.

And that’s when I learned that mold triggers Interstitial Cystitis and Histamine Intolerance, and impedes the fight against Lyme Disease.

Mother fucker. I’d spent over six years in that apartment, which is literally the longest I’d ever lived anywhere in my entire life. Six years in an apartment that had been not only making my existing illnesses worse, but added more to the towering heap of health doom.

I abandoned that room, but was bound to the apartment due to the pandemic. One of my cats began suffering seizures, had trouble breathing, and was found to have an enlarged heart, spleen, and liver. The other cat was found to be dangerously close to renal decline, and was exhibiting over-grooming behavior and weird spells of hyper-aggression.

Finally moving out of the moldy apartment (after considerable landlord battle) has improved my well being considerably. My seizure cat is now on twice daily phenobarbital, but after just four months in a new home, her organs are no longer enlarged, and her breathing is fine. My other cat is back to his old timid self, though his renal issues are still a concern.

My migraines are considerably lessened now from monthly shots of Ajovy, an utter godsend. My ability to function is kept precariously afloat by a steady stream of herbal supplements I can’t afford, and epsom salt baths (as old timey as that sounds). I’d love to see a Lyme specialist, but none take insurance, so I’m left with what little I can figure out and afford myself on the pittance I am given by Disability ($840 a month). It is unendingly frustrating to know that I’d be in less constant pain and better physical and mental condition if I could only afford proper Lyme specialists, regular massage, and a competent physical therapist / trainer.

Right now, things aren’t so bad.

Pain remains a constant companion, but I don’t remember life before pain, anyway. I am still living in abject poverty, but my income and housing situations are stable and supported, something I’ve been lacking most of my life. Though my memory is shit and I lose words with ease, I can currently think with more precision and optimism than I have in years. I still get migraines and my IBS guts explode at times, but both are infrequent enough and manageable enough that I dare to make social plans! (I even buy tickets for events in advance, now!) I have carved out some degree of social life once again, and being in the company of others doesn’t cascade into an avalanche of paranoid anxiety and self-loathing! My default emotional state is once more one of curiosity and happiness (something I’d not experienced since… grade school?). And hey, I’m not completely unfuckable!

But best of all, I know what the fuck is wrong with me. There is an actual direction in which to go to seek improvement, and my symptoms are unquestionably real. I have such evidence and history of tangibly impaired health, that the shame and guilt and blame that was so embedded within me and my illness is utterly vanished.

I’ve lost most of the past twenty (or thirty?) years to illness and poverty, but at least I have the now. All that’s left is living as much as I can manage, with as much joy as I can find.

(accurate depiction of me dancing)

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