Sunday, January 15, 2012

Dey Put De Lyme In De Coconut...

Or, they put the Lyme in the Fearless Fibro Warrior.  Shit, now I have to change my business cards. Fearless Lyme Fibro Raynaud's-and-some-other-shit Warrior?

Sorry-let me start over.

Friday, I went back to Dr. M with Sky King.  I was very excited, because I was planning on getting a bunch of test results back. Some of them were: Adrenal function, Lyme, Candida, parasites, and thyroid.

As we were walking up, Sky King and I quickly went back over the things we wanted to ask him about. When we were done, Sky king says, "Now remember. Nothing else is wrong, there is no new diagnosis, we have to just keep doing what we're doing".

Before you get down on Sky King, let me explain. Every time I go in to one of my doctors, I am happy and hopeful that they will have some new answer, some new treatment, some new direction for us to go.  And every time, EVERY FUCKING TIME, I leave, fighting back the tears because they take these hopes of mine and they stomp them with their stupid Western Medicine shoes, STOMP CRUSH MANGLE. And then I get angry, and then Sky King wants to murder them. So, he is being pretty goddamn awesome preparing me for disappointment. He's a very even keel guy-not too many highs, very few lows. Me? I thrive on the roller coaster of emotions, so I trot into the doctor's office expectant like a kid on Christmas morning.

You see, I know my body very well.  I have a sensitive system-medications affect me strongly, I'm a lightweight. And I have spent most of my adult life avoiding medication. I don't have Nyquil around-no Sudafed, no cold meds, no flu meds, nothing. When I need something, I have to go buy it, because if I do have it, it's 7 years old. I really no my body well, and I notice slight variations.  This must come from years of working in health food stores. So when I say something else is wrong, when I say Fibro isn't my only issue, I know deep in my core that this is so. YES, I have a penchant for the dramatic. But since I began my therapy, and since I have had REAL drama in my life, I don't enjoy the stupid drama. The little things people turn into big things. I make a conscious effort to avoid this kind of drama. So I am not seeking attention when I say more is wrong. I don't know what it is. But I know, with every fiber of my being, that SOMETHING ELSE is wrong. I just do.  And each time I hear there is nothing, it's like my soul gets a little bit weaker. I lose just a little bit of me.

So I deflate for a moment at the thought of getting no news, right there in the parking lot. I steel myself, and take a big breath, resigning myself to a life of juicing and little binges I will continue to pay for, along with working at about 15% capacity of my former capacity.

We walk in, and he is running late. This is not a surprise, because he spent way too much time with us last visit, and I know people were waiting when I left. We get in about a half hour late.

He comes in, and goes through the file-standard doctor thing-they riffle papers, getting their bearings. he takes a look at the papers I brought him-all my UC Davis records from the past year and a half.
He says, "OK. Let's look at the test results. You did the adrenal test, and here are the results. Do you do shift work, or is your sleep cycle disturbed at all?"

Wow-YES my sleep cycle is disturbed!  I don't sleep well, certainly not without medication.

And my adrenal function is backwards. When I wake, my adrenal output should be high, but it's low. This explains why it's so hard to get out of bed these past few months. And when my function should be tapering off to settle in for the night, mine is spiking. This explains why I have a hard time falling asleep without medication. So, Party Aimee is back in full force. That would be great if I was a bartender, but alas I am not. He puts that aside.

It seems the thyroid test and parasites/Candida tests aren't back yet. Damn.

Lyme.  Positive. WHAT?  POSITIVE!  HOLY SHIT! I don't know whether to scream, "I FUCKING KNEW IT!!!" or cry with relief.  Not relief that there is more wrong. Relief that I will now get more answers. I do neither, and just hope that Sky King is taking good notes, because my mind has just wandered down the path of glitter, rainbows and hope, and is getting ready to do some body shots with Matthew McConaughey.

We get through the rest of the visit, and reschedule for 4 weeks from now.

We leave with:
  • Additional lab paperwork-I'm going to try to run it through my hospital, rather than pay out of pocket
  • A movie to watch: Under Our Skin-It's streaming on Netflix
  • Homework: We will research, and make decisions about my treatment
  • A website to visit: ILADS.ORG  This website talks about the controversy with Lyme Disease.
Controversy? What controversy, right? You have Lyme Disease, you treat it, right? A few weeks on antibiotics, right?

In the 1970s, scientists became able to have a biological patent on a discovered organism, or something that was genetically altered. Wikipedia that shit. See where that can go-it ain't pretty.
But what that meant, and still means is this: When scientists, doctors or researchers discover and isolate an organism that causes disease, such as the spirochete that carries Lyme that was discovered in 1975, researchers can patent it. And so it went-different bits of the spirochete were patented. And with patents, you are protecting something from others making a profit while leaving you out in the cold. So different components were patented by different researchers, each one hoarding the information, no one sharing. Which makes sense if you don't want someone to steal your idea. Or if you want to be the one to create the vaccine that will spare the world of Lyme disease.

Before this gets way too politically out of hand, I'm going to simplify it for you.

When you get an illness, you go to your doctor. If your doctor is part of a network like an HMO or PPO, you have a co-pay-you don't pay the full value of the visit and the treatment, because you have some sort of insurance.  The insurance companies spend tons of money on teams of doctors that decide appropriate treatments for each ailment. This is how you don't get a free nose job when you slip in the hall and hit your face.  A hit to the face does not warrant plastic surgery to make you look like Megan Fox, minus the man thumbs.  All sounds legit, right?

For Lyme Disease, the protocol is 2-4 weeks of antibiotics. Done, cured.

What's the problem? No one knows how long I've had it. There is not a definitive test. It could have been just over 2 years ago, when I noticed the bigger symptoms.  It could have been when I was preggers with Monkey Boy, 13 years ago, and went camping a lot. (Still do.) Why then? Well, I have had sciatica since then-Lyme can cause sciatica. Especially on both sides, which I have. Debilitating, life-altering at times. Or, it could go back to when I was 13, and had Mononucleosis. Why then? Lyme mimics Mono. So we don't know how long it's been spiraling it's way into my blood, my organs, all my soft tissue. What I DO know is this: I'm sick, I've been sick for a long time, and  I want to be well. And, many doctors do not believe that Chronic Lyme Disease is real. Really.

So what now? Now, I get to do some research, and Sky King and I will look into treatments, make some decisions, and go forward.  What am I left with? A body full of:
  • Lyme Disease
  • Fibromyalgia
  • Chronic Fatigue
  • Raynaud's Phenomenon
  • Serious cravings for body shots with Matthew McConaughey

Any questions?

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