I’m just fine (and other misconceptions)

bff07e93bdd74ecbd4617f90d860ed65Some of you may already know that I have chronic health issues.  Lots of them.  I’ve alluded to some of them at times on this blog throughout the years, and I’ve kept relatively vague–if not relatively silent–about them on my other blogs.

I have not, however, written about the vast majority of them, as most of them have come to light only recently, nor have I talked much about the full extent of them in one spot.

This post tells all, for anyone who might be interested.

It’s not the worst picture in the world.  But it’s not a pretty one, either.  In fact, I don’t know how I’ve been able to stay out of a wheelchair or the disability benefits office, nor do I fully understand how I’ve been able to avoid having to take dump trucks full of medications.

As Moulder and Scully would say, “it’s an X-file”.

There are silver linings everywhere, if I know where to look (and if I remember to do so).  And I’m learning where to look, and how to see them for what they are.

This might start to sound like a “woe is me” post; after all, the list of diagnosed conditions gets lengthy and frightening.  But that’s not how or what I intend it to be.

It’s also not a “bragging rights” post (I.e., “look at what all I’ve got wrong with me and I still work!…”) or worse, a judgmental post (“…therefore, if you’re disabled or chronically ill, then you should be able to work, too, because if I can, anybody can!”).

Nope.  Not going to go there.  Not at all.  Because each of us has our own story to tell, our own particulars and details and intersecting factors, and our own strengths and limitations.

Each person’s story will be different and highly individual, highly personal.

Today, I’m only going to tell mine.  In full, vivid, living technicolor.

I’m not sure exactly where or when my story begins.  This is particularly significant in itself, because in my line of work, which, ironically, specializes in the identification, characterization, and then resolution or successful management of chronic and/or mysterious illness, one of the first steps I take with a patient is to ask them “when was the last time you felt well?”

And, also ironically, I cannot even answer my own question.  I can’t recall a time in which I actually felt well, a time when I can honestly say that nothing was wrong with me.

As the ’90s alternative-pop band Toad the Wet Sprocket sang, “something’s always wrong” (link to video on YouTube).

I don’t even think I was born “normal”…

I was born with a club foot, which I now realize is an early sign of Ehlers-Danlos Syndrome (EDS).  I was also born with a dairy allergy, the first manifestation of which was a rip-roaring case of Colic.

It wasn’t long before my parents realized I was different in many ways, not the least of which was my ability to stay up unusually late, coupled with an extreme distaste for naps (cue the Non-24 chronorhythm disorder evidence).

Almost right away, it became obvious that something was a little off about my immune system; I caught every head cold, flu, and bronchial infection that ever graced the American Great Plains, and every time, without fail, these bugs would morph into ear infections that would always eventually involve both ears.  I failed two hearing tests in kindergarten.

I always had constipation and skin problems, too.  I could practically write a book on dermatology.  I’ve had everything from welts to blisters to heat rashes to eczema (two types, one of which was incredibly severe) to acne to rosacea to mysterious bumps and even warts (the latter on my fingertips).

Puberty sucked ass; I went through it precociously and my symptoms were severe in that arena, too.  I didn’t know it then, but I started growing uterine fibroids very early on, probably around age 11.  This led to a 24-year bout of severe anemia.

I kept coming down with upper respiratory infections, complete with the ear infection epilogues, through my teen years, which, I found out later, activated Celiac Disease when I was about 13-14.

That’s also the year during which I was diagnosed with clinical depression and put on my first of two SSRI medications, the first of which would only last a year due to insufficient improvement, followed by a year unmedicated, followed by the eight-year stint of the second one after my mom had come across an article on ADHD and thought it might explain some of the idiosyncrasies of my brain.  I was not hyperactive, however, so the ADD (non-hyperactive, creative, introverted subtype) described me best.

In my junior year of high school, I got incredibly sick.  I was 17 by then, and I had caught a cold the week before Christmas, which would turn into a four-month-long ear infection involving both ears.

There was one other problem: I was immune to so many classes of antibiotic drugs that they had to give me an extreme cocktail of antibiotics so strong that they rendered me sensitive to sunlight and left me so fatigued and so dizzy that, at 17, I was barely schlepping from class to class by holding onto the wall as I wavered down the hall.  My blood work indicated that I was so anemic by then that the doctor thought I could collapse at any time.  (Did anyone suggest blood transfusions at that time?  Nope.)

This whole ordeal necessitated a second surgery in which tubes were inserted into my eardrums (my first go-round with that was when I was 11).  It didn’t matter; the ear infections had already perforated those eardrums several times before.

I recovered slowly but surely, during which time I tore one of my hamstring heads off its attachment at my butt-bone while stretching–another telltale sign of the then-unknown EDS.  My chiropractic physician repaired it with ultrasound therapy.

By the time I was 21, I was starting to confuse words and names that sounded alike, especially when the person doing the talking was standing behind me.  It became such an issue that I actually tried a few distinct-sounding nicknames on for size as I took job positions at different places.

That was also the year in which I developed hip pain in both hips (I’d been hit by a car at 16 and was never quite the same again), for which I sought chiropractic care (which saved my ass), and that was the point at which I was also diagnosed with bilateral osteoarthritis.  Yes, at age 21.

And that was also the year during which I proceeded to start gaining 20-25 pounds over the next two years, my first of three such weight gain episodes.

After completing one self-directed health overhaul that involved revamping my diet and eating only real food, the weight came off effortlessly.  The acne disappeared during that two-year chapter of my healing journey, too.  And my moods and sleep stabilized on their own, for the most part.  At least, the anger and the depression it led to was gone.  The effort involved was significant, and the process was grueling, but I managed to make it through.  By “grueling”, I mean that I was constantly sick but feeling gradually better with each round of illness, so I figured I must be doing something right for once in my life.

My monthly female cycle symptoms also improved greatly; however, I was still quite anemic, and I began my two-and-a-half-year stint with the severe eczema. I could also no longer ignore the fact that I was falling asleep uncontrollably, especially after lunch.  Honestly, it felt like someone had drugged me.  It didn’t matter how much sleep I’d gotten the night before, nor how much caffeinated tea I drank in the morning, nor how vigorously I wiggled my foot to stay awake in class.

By then, I was in my mid-20s, and “class” refers to the pre-med program at a local university.  I was also completing a massage therapy program simultaneously, so I chocked it up to stress.

In med school a year or two after that, however, I fell apart.  Grateful to have solved the eczema mystery (which turned out to be an intense immune system reaction to an unlabeled ingredient in a spice blend we were using), I traded that in for a bunch of other issues.

The involuntary sleep episodes began to have an increasingly significant impact on my life, as they would strike during class, which was something I could not afford.  The physicians at school whose brains I picked suggested narcolepsy.

In med school, all of my previous issues felt like they had come under a magnifying glass in the sun.  My body essentially baked itself.

Despite eating “right” (or so I thought–I was vegetarian for a few years), I was on my way to a prediabetic state, from stress alone.  The anemia got worse and worse.  My bowels weren’t right.  My hearing was getting noticeably worse; an audiogram halfway through school would reveal much more of a hearing loss than I had anticipated.  And my nervous system sucked; my eyes jerked to the right side and back involuntarily and uncontrollably, my ears developed intense tinnitus, I was dizzy and uncoordinated, I frequently had cervicogenic migraines and symptoms of fibromyalgia’s cousin called Myofascial Pain Syndrome, I had chronic dry eyes and dry mouth, I was quickly losing my night vision and depth perception, I was experiencing long and profound bouts of debilitating depression, I was quickly losing the ability to open jars, and I was even re-developing infantile neurological reflexes that are very, very wrong in adults.

I was a wreck, and it was a nightmare.

During my final year of medical school, this was all coming to a thunderhead, reaching very critical mass…

…and then my parents were involved in their near-fatal car wreck some 2,000 miles away.

It was then that I developed the first of the two types of PTSD.

And while undergoing an adrenal gland evaluation, I found out that I was highly reactive to gluten, the protein found in wheat and a few other grains, and that, in all probability, I had Celiac Disease.

Other potential diagnoses on the short-list of possibilities included Meniere’s Disease, Sjogren’s, general unspecified autoimmunity, Multiple Sclerosis, and others.

It was also during that time that I began to gain a lot of weight.  For those of you counting, this would be my second of three such episodes.

I was baffled; I was eating very well (and I was no longer vegetarian, as it was slowly killing me to eat that way).

I graduated school by the skin of someone else’s teeth, and we made the 250-300-mile move to start practice in our beloved South Texas town.

The stress, however, was unimaginable and unprecedented. I was no stranger to stress, having lived an incredibly stressful, alienated, and lonely childhood, but nobody could have prepared me for this.  I’ve described the gory details before (and here, too), so I won’t repeat them here.  That began my second type of PTSD–the cumulative/chronic type.

Overnight, two things happened:

  1. I stopped sleeping, and
  2. I started sneezing.

Yep, I developed severe random attacks of hay fever overnight, at the same time that my body’s sleep/wake cycles almost completely disconnected from the day/night rhythm of the earth.

The enigmatic weight gain was also gaining momentum, and urination was becoming An Issue.  I remember having to use the ladies’ room three times in a 30-minute period.  I also remember not having the opportunity to go for a few hours and when I finally got the chance, the need was urgent.  But when I finally sat down in the ladies’ room…

…nothing.  Nothing came at all, for about 10-15 seconds.

I knew then that something was wrong.  Very wrong.  It was looking more and more like the dreaded “space-occupying lesion” (i.e., a tumor), and it was time for an ultrasound.  There were almost assuredly space-occupying lesions present; the only question was, were they cancerous or not?  It was time to find out.  They were getting cumbersome.

They turned out to be fibroids, benign-but-large tumors of the uterine wall, and mine were of the “extreme” variety, even by WebMD standards.

One hysterectomy and an excellent recovery (complete with high-quality supplements) later, I shed the 30-35 pounds I had gained while growing the fibroids.  And I promptly got my life back, too, with increases in brain function and energy.  Yay!

It would be short-lived, of course.  Histamine attacks still pounced on me, unpredictably and at random, and it was becoming obvious that they weren’t going to go away any time soon.  I decided I couldn’t live like that anymore, and everything I had tried had failed, except…

…I had come across a scientific research paper that mentioned tobacco.  I didn’t like the thought of it, but I was desperate enough to give it a try.

Unfortunately, it worked, which began a four-year bout of kretek usage.  Unbeknownst to me, the carbon monoxide from the kretek inhalation tanked the oxygen levels in my blood, causing my body to compensate by releasing kidney-based hormones that told my bone marrow to make more blood cells.  That in itself might not have been a problem if that same kidney-based hormone didn’t also decimate my ability to regulate iron absorption and also my ability to excrete iron.  This caused my iron to build up to sky-high levels, which then fueled estrogen growth, a genetic predisposition that spells estrogen-based disaster for me.

Unfortunately again, I didn’t figure any of this out until after I had already gained 45 pounds (my third bout of significant weight gain, for those of you counting).

Other changes occurred behind the scenes, too.  My body’s Vitamin C status plummeted, weakening my collagen even more (EDS already considerably weakened my collagen, aka connective tissue in the body).  This means that I’m the type of person to herniate cervical (neck) vertebral discs (i.e., the “bulging” or “slipped” disc) while sleeping.  This causes pain in the shoulder and upper arm for about a week to ten days, after which that subsides and the tingling down into my forearm, hand, and especially fingers begins to take hold.

Scanty oxygen also allows bacteria to grow, and the four or five abscesses that were sitting silently at the bottom of several tooth roots, minding their own business and not causing any harm, suddenly erupted (bacteria love an oxygen-poor environment) and began to cause me a two-year stretch of intense tooth pain that would strike at random, even waking me up in the middle of the night, ramp up surprisingly quickly, and become unbearable in a matter of seconds to a minute.  The only antidote for this was to gobble handfuls of over-the-counter pain relievers, which probably did a number on my kidneys and liver.

My thyroid has also been creeping toward dysfunction over the years.  And during the last few years, I found out (through some specialty lab testing) that one of the off-shoots of the Celiac Disease I’ve had for 25 years is the development of what is known as Cerebellar Degeneration, a neurodegenerative disease that sits in the same family as Alzheimer’s and Parkinson’s.  It shouldn’t give me much dementia or anything, because it affects a different part of the brain, but it does doom me to a life of clumsiness, incoordination, unstable balance, and likely some cognitive dysfunction, including a predisposition to some mood disorders.

Within the last few weeks, I have also developed some very mysterious goosebumps that occur in one area only, on the outside part of my upper left leg.  I am never cold at the time, nor have I ever shaved there, nor do I feel stressed out during that time, or anything else that commonly occurs with random goosebumps.  These are indeed abnormal, as they’d never happened before, and they just started suddenly, and they’re frequent, occurring several times a day, sometimes with only minutes between episodes.

At present, all told, I’m dealing with:

  • EDS, which is genetic and lifelong, and has caused many sequelae (resulting effects), such as a cervical disc herniation that couldn’t have been prevented and won’t heal
  • An overactive immune system that keeps spewing out histamine, although Vitamin C is currently proving to be effective treatment for that, most of the time
  • Two autoimmune diseases that have been confirmed and are in moderately-advancing stages, one being the autoimmune-related hearing loss (I have the hearing of a 70-80-year-old and I’m not yet 40), and the other being the Celiac Disease with its Cerebellar Degeneration sequelae
  • Lab-test-confirmed potentials for additional autoimmune diseases in earlier stages of development, such as Hashimoto’s thyroiditis (where the immune system attacks the thyroid gland, causing strange symptoms that eventually evolve into low thyroid function) and a less-clear potential for Multiple Sclerosis (MS), given many of the other odd, currently-mild symptoms I’m mystified about
  • Hemochromatosis, the iron overload that resulted from the low-oxygen state and the severe estrogen imbalance/excess that followed, further leading to abnormal weight gain
  • Toxic levels of three other heavy metals, as confirmed by lab testing
  • Two forms of PTSD and possibly a type of depression (although the alexithymic nature of my Asperger Syndrome interferes with my ability to detect/realize that, so I’m not sure); the PTSD immensely worsened the Non-24 chronorhythm sleep issue that I had previously stabilized very well and kicked it all up again
  • A confused immune system that doesn’t have the good sense to fight the dental infections and gut bacterial overgrowth in my body, but sure reacts against every environmental insult (dust, pollen, dust mites, mold, etc).

So, I guess when I wrote that “semicolon”-themed post yesterday, or the “spoonie” post several months before,…

…I guess I really wasn’t kidding after all.  Not that I thought I was at the time; it’s just that I hadn’t realized just how serious it was.  Because just by looking at me, it’s probably next-to-impossible to tell that I’m dealing with all this.

It’s not going to stop me, though.  I’m going to keep going.  I see no other palatable choice.

What amazes me, and what I feel extremely grateful for, is that I’m not taking any prescribed medications whatsoever at this time, unless you count the self-prescribed pure nicotine extract (which, I suppose one could).

Additionally, I can–and do–work, even though it can be really difficult sometimes.  And I have adequate support (sometimes minimally so, and other times amply so) from my partner.  I’m not going to say that I live independently, because I’m not sure that I could, without my partner.  But I can say that I don’t live with my parents or in a facility or anything.  And I can get around without any physical or orthopedic supports.

I’m also fortunate in that I’m self-employed, which gives me a lot of control over my workload, my schedule, my tasks, my role, my environment, my social interaction (to a point; there are aspects of that which lie outside of my control), and my policies and procedures.  I have a lot of say over what I will and will not do, accommodate, or tolerate.

I have a lot working against me, but I have a lot working for me, too.  But it’s not a contest.  It’s not a “race” if each runner is on their own path.  I’m only competing against myself; what can I do today, what can I accomplish today, how well will I live today?

Genetics have chosen a lot for me, but I also have a lot of influence via my choices, too.  I choose to eat well; I chose to stop kreteks; I choose to take supplements; I choose to stay active according to my ability.  I choose to use whatever energy I have to channel toward the most constructive activities I can think of.

On any given day, you’ll find me, doing the best I can, with whatever I’ve got at that moment. πŸ™‚

❀

❀

 

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10 thoughts on “I’m just fine (and other misconceptions)

  1. After our convo I was thinking about all the things that are wrong with me, all the surgeries and procedures etc. I was like “How do I even function?”😱😷 We do because we have/want to.πŸ’ͺπŸ‘ I like to think of that episode of The Simpsons where Mr Burns finds out all his diseases are holding him together. That’s me tooπŸ˜πŸ˜‚ we really do have a LOT in common my Dearest Dude. πŸ˜πŸ˜˜πŸ’–πŸŒŸπŸ’žβ˜―πŸͺπŸ˜‚

    1. Yes!! πŸ‘πŸΌπŸ‘πŸΌπŸ‘πŸΌ. I’ve had people ask me that question, how do I even function; I just tell them that I don’t know how not to lol πŸ˜‰πŸ˜. I think being an Aspie *might* help the situation because of the Alexithymia part; sometimes I can be mildly depressed and not know it. That’s a double-edged sword, though lol – it could work for or against me lol ☯☯. Simpsons rule!!! Omg I love them. We got seasons 1-11 or so on DVD and made it for 7 years without any cable just by watching them every night LOLOL. Yep, I have–and want–to function πŸ‘πŸΌ. I don’t think less of anyone who can’t, of course! It’s just that my quality of life depends on my ability to do the things I want to do πŸ’“πŸŒ·πŸ’–. I’m so excited about how much we have in common!! You know, I thought about moving to So Cal once; if I did, it would be the San Diego area (not LA!) lol 😘😘. But omg the cost of living! It would be tough to make the move, and now we’ve got the practice all set up here and everything. But we’ve thought many times about moving further west when we retire. Maybe that’ll be New Mexico, maybe San Diego, who knows? πŸ˜β€οΈπŸŒ·πŸŒΊπŸŒ΅πŸŒ΄πŸŒ΅πŸŒ΄πŸ‰πŸŒ»πŸŒΊπŸŒΈ

      1. The cost of living is ridiculous! Our rent on a 3bedroom 1bath house, no AC, no dishwasher, just a small house is $1500 a month and that’s a great deal. Trash & water is another $75-100 a month. Then gas & electric runs $50-75 and we’re careful. I don’t know what food prices are in other places but I can’t get out of the grocery store without spending at least $100. I was born here & I love it but it is so expensive. A lot of families are like us, generations living together because that’s the only way to survive.
        Now if you win the lottery or are able to retire early I’ll be the first to welcome you!!! πŸ˜˜πŸ’–πŸŒŸπŸŒΉβœ¨πŸ’žπŸ’«πŸŒ»πŸŒ΄πŸ˜Ž

      2. Omg you are so amazing πŸ˜˜πŸ’“πŸ’“. Wow, that’s incredible, the situation you describe 😱. I thought we had it bad here, now that our own cost of living is shooting up; our rent on a 2-bedroom, 2-bath, 1150 square foot apartment is about $1250 now, with another $100 a month for garage space and water is about $35-40/month. Electric kills us, though–about $100 in winter (all 2-4 months of it), but can reach $350 in summer (all 4-6 months of it). And tA/C is an absolute must here; the humidity is something else, and we’ve had to run the A/C throughout the year; it goes year-round except for during the occasional cold snap from the north lol. 😊. Gasoline is where we get a break – about $2.25/gallon right now. The sales tax is 8.25% and at least there’s no state income tax (!). No toll roads in SA, although there are in DFW (Dallas-Ft Worth), Austin, and Houston. They wanted to put a toll road in SA but it got vehemently opposed and the efforts eventually died πŸ‘πŸΌπŸ‘πŸΌπŸ‘πŸΌ. Food is quite reasonable, but our organic food costs about the same as conventional food elsewhere. We’re pretty centrally located, though so close to not only the border and the ocean, but also the Midwestern farming areas. We save lots of $$ by shopping on Amazon and at Half Price books, and the clearance racks at Dillard’s. I also wear scrubs to work these days, which accommodate my growing figure and don’t cost a mint lol πŸ˜ŠπŸ‘πŸΌπŸ‘πŸΌ. I’ve been known to go to a Goodwill, too. And I pirate my own music (shhhh) πŸ˜‚πŸ˜‚. At least we don’t have car payments on our very old truck (paid off now!) or our other older car (a beautiful, amazing gift from a very dear friend) πŸ˜πŸ’“πŸ’“πŸ’“. We buy some foods in bulk to save, too. It’s getting gnarly out there! The one area where we splurge is our cable/internet package and our cell phone plans πŸ˜‚πŸŒΊπŸ’˜. Oh, and our tuition for education πŸ€“πŸ“šπŸ“–

        But we have no health insurance 😱, no life insurance, and we don’t go out to eat often at all. Our only outside entertainment consists of free events on the Riverwalk downtown, a very cheap concert every now and then, or a has-been movie at the local dollar theatre lol. πŸ˜‰πŸ‘πŸΌSometimes we go bowling during the off-times when it’s really cheap. Bonus: we usually have the place to ourselves, or close to it! Right now, we don’t pay much federal income tax (no taxable income after business expenses) and that exempts us from having to pay the fine for not having the health insurance. For medical, we practice a *lot* of preventive and wellness care, and I have a pretty great GP MD who makes great referrals when needed, but I haven’t had to see her in 5 1/2 years πŸ™πŸΌπŸ‘ŒπŸΌ

        Omg life is interesting lol πŸ˜»πŸ˜‚πŸ˜πŸ’˜πŸŒΊπŸŒ·

    1. Interesting! Thank you for that info 😘. I’m so sorry that you’re going through all this πŸ˜”πŸ’πŸ’ž. I totally wish things were better for you. You deserve so much more πŸ’šπŸ’™.

      I’ve also heard of it in epilepsy, MS, even something called “autonomic hyperreflexia”. Hadn’t heard of it in fibro, though! That’s good to know. Neurological for sure; I wonder what the etiology (dysfunctional process) is? πŸ€”Hmm πŸ’“πŸ’œπŸ’“

      1. I certainly will 😘😘. I’ve been looking pretty hard! So many people seem to have this, so we’re definitely not alone! πŸ™πŸΌ. But it’s so confusing, because nobody has ever discussed this in any of my classes, and I’ve taken about 25 Neuro classes(!) πŸ˜±πŸ˜±πŸ’˜πŸ’˜

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