Friday, September 18, 2009

Monkey Girl's Story...part 1

I don't know exactly when or how I got Lyme Disease.

I certainly never remember getting the 'bulls-eye rash'.

But I do know I've been sick for over ten years. I mean really sick. And that until March of 2008, no doctor, no specialist, no ER, no hospital could tell me what was wrong.

"You're a mystery," the doctors would say.

I can't tell you how frustrating it was to hear those words.
But I heard them... over and over.

At first, it started with digestion problems.
I couldn't be far from a bathroom. Preferably my own.
Many many times, my husband would speed home, breaking every speed limit, just to get me to our bathroom.

After awhile I had to stop working.
I didn't know if and when I'd have what we called, 'an attack' where I'd spend hours in the bathroom. Afterward, I was so tired, I'd end up sleeping the rest of the day.

My doctor sent me for tests.
Sigmoidoscopy, colonoscopy, blood work, tissue biopsies, etc...

Nothing. After months of tests, the best they could come up with was...IBS.

That diagnosis was the first in a long list of what I refer to as 'non-diagnoses'.
Meaning...the doctors didn't know what was wrong...but they knew what it wasn't.

For a few years I struggled with these symptoms the best that I could.
On average, I went to the emergency room 2-3 times a year, usually for uncontrolled abdominal pain.
The ER doctors knew something was wrong. My blood work, by then, was screwy. My white blood cell count often showed a raging infection, but what kind they didn't know.

I had serious bouts of fatigue. All over body fatigue that could last for hours or days. Getting out of bed, showering and dressing would completely wipe me out.

I modified my life.
I stopped working completely.
I started acupuncture (which helped with my pain).
I got plenty of rest.
I started taking supplements & Chinese herbs from my acupuncturist and my chiropractor.

And slowly, I started to feel better.

What I didn't know was this was the first of a few 'mini-remissions' I would have after taking some antibiotics prescribed from my doctor (generally for an infection).

Every year I acquired new symptoms. I started becoming allergic to medications, skin cleansers, lotions, perfumes, and earrings (weird, right?). Really allergic. Anaphylactic reactions. I started carrying an EPI-pen 24 hours a day.

After a particularly scary ER trip (via ambulance) I was referred to an Infectious Disease Specialist. The doctor at the ER was worried (noticeably) and wanted us to immediately go in for testing. It was the first time (since I was 20) that a doctor used the "C" word (cancer).

Now we were scared.

Here I thought, we're seeing an Infectious Disease Specialist, right? Everything would be ok, and she'd find out what was going on. FINALLY.

Nope. Not even close.

For the second time in my life, my doctor was more interested in writing a paper about my 'weird' illness than actually healing me. I was going to 'put her on the map' as they say. So all in the 'effort' of finding my illness, she sent me for...

more blood/urine work
a bone marrow biopsy
a spinal tap
countless trials with new meds

Only to dump me as a patient when I didn't have the disease she wanted me too.

And then the shit hit the fan. be continued.


Kim said...

Welcome, Monkey Girl. So glad to have your voice here! I'm on the edge of my seat here...need the rest of the story, ASAP. Can't believe that doc turned you into her guinea pig. I'm getting worked up just thinking about it. And, I'm soo, soo, sorry for everything you've been through.

Regina said...

Oh my, how I identify!

Alix said...

Welcome, Monkey Girl! Kim and I are so psyched to have you here. It's so defining of this illness that our onsets were all so different. What a diagnostic mess. I, too, had worsening digestive issues, but never found myself in the ER. I would just take really long trips to the bathroom. You cracked me up when you mentioned preferring your own bathroom. Hear, here!!! Public bathroom panic was the worst, especially if there was only one stall and I knew the line would be growing the longer I took.

Kim said...

Testing our new comment feature. Woot woot! Awesome job on this masthead, Alix!

guy who trapped monkey girl said...

But you forgot the best part of the whole 10+ years of misdiagnosis...

Most of the doctors would try and prescribe antidepressants to deal with the situation instead of working on a solution.

Alix said...

Ha! That is what most doctors prescribe, right before they diagnose chronic fatigue syndrome. People with physical illness should run like mad from those doctors.

Kim said...

OMIGOD, trapper-guy...

SEEEERIOSLY...they've been trying to put me on antidepressants since high school. None of them worked and really bad side effects. Now, sickest I've ever been, I'm less depressed. Makes me think the Lyme treatment is working. Hmmm...who would have thought antibiotics for depression? What a novel idea, find out the cause rather than cover the symptoms.