Saturday, July 6, 2013

On health or something like it

[Preface: The topic of health has been rolling around in my mind lately. I've decided to write out my story, as I can see how much it's affected my mindset both since my gluten intolerance diagnosis and before. Maybe it can help someone else. Or maybe it can just help me. Either way, this will (hopefully continue to) be a little multi-part series.]

What's this? An actual serious, reflective, relevant text post? What a crazy world we live in.

I realized the other day that I can distinctly remember 8 different doctors and specialists I've seen in my ~13 years of illness (though I've long lost track of the actual accurate number). And I realized that, you know, that's pretty unusual for someone who's barely grazed her 20s. And maybe something to be reflected on.

So here we are. My story.

lots of doctors = lots of waiting rooms

It's a strange thing to wrap your head around the fact that you've been sick for more of your life than not. When you're living it, it's hard to imagine things being any other way. You don't always seem "sick". Yes, most 6th graders weren't taking 6 medications per day. Yes, most kids at the birthday party could eat the cake regardless of when it was served. Yes, most people weren't regularly seeing at least 3 doctors at a time before graduating high school.
But it was all I knew.

In 2nd grade, I first started getting sick each day after lunch--debilitating stomach pains that would send me to the nurse to lay down an hour after lunch. (I spent enough time in there that I even read the entirety of the nurse's copy of The Secret Garden in 30 minute increments.) Eventually, I was marathoned between doctors. My mom and I would be sent from specialist to specialist, testing this theory and that with different ultrasounds and scans and whatever probe they thought might explain my symptoms next when the previous one failed to provide any clarity. I don't remember most of them--just the ultrasound of my spleen they let me keep, a doctor in the children's hospital who gave me a coupon for a free ice cream cone, and the final test that brought a "diagnosis." They told me I had the same thing that had caused my grandfather's stomach and esophageal cancer a year before--and that would go on to kill him in 3 more--and presented me with a list of rules for managing it. It was a late guess for 7-year-old. It wasn't a young person's disease.

We'll call this retelling a form of self-therapy after the weight that would bring with it, shall we?

I learned how to take the pills that would rescue me whenever I felt sick without water. (I swear in the coming years we could buy enough to single-handedly keep Pepcid A/C and other pharmaceuticals afloat.) Then in 5th grade, the same year my grandfather died, I developed a pervasive, hacking, breath-stealing cough. A new specialist I resented having to see and several tests later, it was connected back to the same thing. My stomach. Newly asthmatic--or more accurately, a diagnosis of "reactive airway disease." A sudden barrage of daily medications and a doctor's note not to run in gym, and supposedly that was that. Supposedly it would be controlled. Supposedly we could eventually wean me off them all.

My body grew accustomed to the medications every few months in the coming years and they had to be cycled out. It makes sense in retrospect that the medications would stop helping, as they were simply acting as a band-aid on an undetected festering wound, but at the time it was frustrating and disparaging. And every time the doctors tried to reduce the number of pills I was taking, all of my symptoms would re-sprout. I'd end up feeling poorly enough that I'd ask for the medications back. They were my comrades in arms.
Through this all, I was aware of the fact that my grandfather hadn't had problems until he was in his 50s, and the cumulative wear still caused his death. So then, what did 50 years mean for me, at 11 and 12 and 13 with my first endoscopies already taking place?

Primarily it served to form two expectations as a sort of mantra in my mind:

My stomach would always be a problem, and probably my undoing.

And as far as my health went, there would always be something else.


I would probably always be sick.

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