The Chronicals of My Fall

***This is a post of a very personal, biographical nature, so if that sort of thing bores you or makes you roll your eyes, please pass it up.***

Tomorrow I will have completed the Fall Semester of my Sophomore year of college, in the way they reckon those things.  It has been 11 years in the making and I have spent a lot of time lately thinking about it and the journey I’ve been on for that time.

In 1996, I was a teenager in a small town, working for a small town paper and waiting tables to fill the void between assignments as well as collect local gossip.  I was a decorated high school journalist, recruited heavily by Ivy League colleges and Journalism schools across the country.  I had photographs published in nationally circulated journals and things, in short, were going well.  Neither of my parents had more than a high school education and I spent my whole life working on leaving that little town behind and finding something better, where I would have a chance to be something and this was going to be my way out.

Then things started to fall apart.  I blamed a lot of things… I was overworked, I was stretching myself too thin… but it came on so slowly that I was already circling the drain before I noticed.  I started missing deadlines for the paper that paid me, I would skip school to nap in my car.  I blew off time with friends because I had no energy.  I frequently would fall asleep in class.

Well before it was time to graduate, I couldn’t keep up anymore.  That among other things forced me in to a decision that I may regret for the rest of my life.  I left school, I left town, I left my friends and everyone I knew to find something else, to fill the void that was opening in me…

1998 was a blur.  I worked at least three different jobs, failed out of two colleges, slept on the couches or floors of two friends, crashed my car three times and lost my way.  I tried to veil it in alcohol and drugs, sex and rash decisions… but I could not ignore the missing parts.  Later in my life, I could equate this to the feeling I had when I miscarried — a deep, deep emptiness, a place inside where a piece once fit, but had been lost.

I stumbled around in the dark for years.  My state of mind becoming increasingly confused and unfocused.  My doctor said I had depression and medicated me.  Nothing helped.  I was forced to move back in with my mother after repeatedly getting lost while out driving.  A normal person gets lost and knows whereabout they are… they can at least figure enough out to go back the way they came. 

I would get lost and my mind was all fuzzy… I was so lost I wasn’t even on the right planet.  For my own safety and for a million other reasons, I moved back in with my mother sometime in 2000.  I tried to go back to school, but it was so hard and confusing that I ended up failing again and again (but it sure didn’t stop me trying).  It was finally determined that I was pre-diabetic and having episodes of hypoglycemia, so my medication was changed and I refused to continue the anti-depressants in favor of Glucophage.  I moved out when I was feeling better the next year, but I still had to have a 2 hour nap at 3pm or I couldn’t function.

I have a lot of memory loss during the whole period of this story, but this is the time I have the least recollection.  Maybe it is for the best.  At some point, my brother and I rented a house together, and then I moved in to my own apartment.  I was taking classes on and off with a mix of success.  Somewhere in there I was forced to sell my car to pay my tuition bill because the school would not allow me to recieve financial aid due to my poor track record.

All this time, I got worse and worse.  I lost a considerable amount of weight due to a mix of factors: Diabetic meal planning, walking all over, disinterest in food… all of those were motivators.  I continued to decline physically until I started struggling with the stairs to my 2nd floor apartment.

Obviously, I needed to rent a house.  The lawn became a chore, the laundry in the basement wore me out, I started falling out of the bed at night to the point I had to get rid of the bed frame and just tossed the mattresses on the floor.  All the time I knew recovery was just around the corner.  I had blood tests and things run as I had the cash (I had no medical insurance), I visited the emergency room frequently for abdominal pain.

I got involved with a friend of a friend during the time I lived in that little house, the first year or so of the relationship I can hardly remember.  There must have been something there… we ended up moving in together, buying a bigger house, loosing big in business until I came to the point that I couldn’t walk without multiple joint pain, hip pain, pain in my wrists and headaches. 

Then I started getting dizzy all the time.  I fell and broke my ankle this way, by this time I was so numb by all this chronic and disabling pain that I really didn’t feel it at all at first.  I finally did go to the doctor, who refused to x-ray me and said that if it was broken I wouldn’t be able to walk… but something in me made me keep going, he didn’t understand that.

I was barely alive and I wasn’t flat on my back, I was working a very physical job in the construction industry (one I hope to return to now that I am feeling better).  I should have never been able to do that based on what we found later.  I talked to a friend who had broken her ankle several times riding horses and she was certain that was the nature of the injury.  We treated it at home and it finally healed months later.

After all of this, we were forced to sell my big house.  We were forced to sell a lot of things, frankly.  We moved in to a little project house (where we still live, a year and a half later) and I dropped from exhaustion.  I think I slept for almost 2 week straight before I was finally encouraged to go to the doctor and have some bloodwork drawn (my mother was diagnosed with hypothyroidism a year prior to this).

My thyroid was also under performing and when I started on the thyroid meds, some of my problems started to dissolve.  The pain, though, was constant, dull and nagging.  Nothing changed it, nothing erased it.  I told my doctor’s nurse and she told me that pain wasn’t part of hypothyroidism and left it at that.  I had long ago stopped taking my Glucophage because of the severe diareah it caused me (I thought), but no one thought to try to answer the question of my pain. 

Why was I hurting?  Why couldn’t I remember anything?  Why didn’t I have an attention span?  The same doctor who had medicated me for Depression before tried it again… I refused.  I knew I was not depressed… but that was all I knew.  Someone there became increasingly frustrated with me and my constant demands for answers, things began to be left out of my chart.  I had an allergic reaction to a medication and no one bothered to write it down even though I reported it immediately.

This Spring, 2007, I had enough of being neglected by this doctor, his nurse and anyone else who was part of it.  I changed to a Doctor who had proven to be very down to earth with my stepfather.  I complained initially of headaches followed by confusion, but it quickly escalated to a complete grey-out and fainting in a public bathroom.  He quickly asked me to take a 2 hr glucose tolerance test, which I promptly failed.  Glucophage was ordered and I took it. 

When the pain didn’t improve, but my blood sugar did, he ordered thyroid tests and blood tests of all sorts.  My thyroid was ok with the medication I was on, all my blood came back normal except for my WBC, which was elevated (around 13,000).  More and more exotic testing was ordered, I wasn’t exhibiting symptoms of infection, but it had to be caused by something.  He grilled me, did I have a rash, did I have a family history of this or that… and finally, what was my poo like?

My poo was not good, I admitted.  Almost constant, bright yellow, liquid, painful, crampy to the point of bowel contraction… and worst, occassional fecal incontenance.  He thought maybe it was my gall bladder… we did an ultrasound and HIDA scan and results were normal.  He ordered a colonoscopy, which found diverticulitis but nothing else.

The funniest thing was that during the time I was waiting for my colonoscopy, I was on a liquid diet… and I started to feel better almost immediately.  By the time my scope was over, I felt like a new person.  I called my new nurse to report this news… she encouraged me to wait until my results came back to change anything, period.  Two weeks later my colonoscopy and biopsies were clean. 

Jim had read about something called Celiac disease when my illness began to progress quickly and had encouraged me to try to go gluten free at that time, ER doctors convinced me that my problem was my appendix.  I flipped back to that episode in my mind…  I talked to the nurse about an elimination diet.  She didn’t know anything about Celiac disease, but was trying to find a lab that would take my insurance and had the right tubes.  I told her I was going to try the elimination diet, because what I had read said that results were practically immediate, so I would be able to see within a week if our community hunch was correct.

A week later, the world was a different place.  My senses were sharper, my pain was practically non-existant (I still struggle with rebuiliding atrophied muscles), I had so much energy that the world suddenly was going too fast, I was going too fast and I couldn’t slow down.  Everyone noticed and asked what the doctors had found.  Truthfully, the doctors had found nothing. 

But, I called a week later to report my findings.  The nurse was very happy to hear that I was feeling better, but cautioned me that there was no way to know for certain without the testing… for which I would have to go back to eating gluten.  I told her I didn’t care, it didn’t matter if I had a proper diagnosis anymore.  I felt better and I was no longer leaking liquid poo… in just a week.  There was no way in Hell I was eating gluten again.

I have been gluten free something like 30 days now… and I honestly haven’t felt this good since I was 16 (when I was unsuspectingly eating a mostly gluten free diet of Dr. Pepper and Snickers bars). 

I have been able to think and read and see and stay awake.  I have no idea how I survived so long with this problem.  I absolutely cannot fatham it.  I was so sick, I couldn’t bend over some days for the pain.  Walking from the house to the car was the most I could do at a time.  Heck, mowing the lawn landed me on my back for a month at a time.  Anything physical required a minimum of two days of recovery and almost constant sleep.  Such difference in such a small amount of time…

This is my story of how I came to be a Celiac.  It is a story that has been long in the making, it has been a hard, hard road to travel and a painful one, filled with losses and might have beens.  When I get in a real funk, I wonder… what would have happened to me if I hadn’t been struggling with this issue for likely the better part of my life and definately my whole adult life.  Would I have gone to an Ivy League school?  Would I have moved to Europe?  Would I have finished college and have my PhD by now?

As Celiacs, who have been robbed of a significant portion of our lives by ignorant doctors, we have to try to maintain a perspective… that time is gone and will never come back.  Many Pagans believe that we suffer so that we learn lessons in our many lives to aid us in an understanding and sense of empathy with the world at large.  This is our trial in this life, and if it is the only one we face, we should consider ourselves very lucky that it is something so relatively simple.  We cannot dwell on the things we’ve lost, or the things that might have been… we’ll drive ourselves crazy doing this kind of stuff.

Once the dust settles, take stock of what you have left in your life.  The friends you have today are the best friends you will ever have in life, your family the strongest family you can ask for.  These are the people who stood beside you when everyone else said it was in your head, or dismissed you entirely.  These were the people who secretly researched and read online medical databases hoping they could help you.  These were the people who always understood when you were too tired to do something or when your memory became a sieve.  They came to you because they knew you didn’t have the energy to come to them.  They are a blessing and a gift that people with normal lives will never know.


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