Raw Spewage

Updates from the battlefield ... fighting and winning against Lyme disease. Lyme bacteria rarely travels alone, by the way... so not only am I infected with Lyme bacteria but it brought along friends Babesia and Bartonella. It's one big keg party in here. But guess what? The party is OVER, boys. I am hammering you with IV meds and you are making me so ill as you fight back... yeah, you SUCK. But my meds are bigger and better and kicking your little bug asses to the curb. I win. =)

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Location: Palo Alto, California, United States

Writing has always been the best way for me to communicate my thoughts. And since my thoughts spew forth as raw, scattered, and random musings... the term "Raw Spewage" seemed quite appropriate.

Thursday, March 20, 2008

I got bit by a tick and it made me sick

I am only making a joke because things are that bad right now -- so bad that I HAVE to find some humor wherever possible... I have also taken to wearing a lime necklace. You know -- because I have LYME disease.... get it?

But whatever.

Before I spew out stuff about Lyme, you should know that I live in California. Which is not known as a hotspot for Lyme. But guess where my family lives?

On the East coast.
In a log cabin.
In the middle of a bunch of acres of woods.

Here is my promise: I am going to detail my fight with this beast that is called Lyme Disease (as defined in Wikipedia):

I don't know whether to be horrified or happy that Google showed 13,900,00 results when I looked up "Lyme disease". Oddly enough, I got 22,100,00 when I looked up just "Lyme". Huh.

The long and short of it is this: I got bit by a tick and it made me sick.

OR

It could be MS.

Yeah, that is also a possibility.

No one knows for sure because when I had an MRI, it showed these white spots on my brain that could be from either diagnosis. The good news is that the white spots do heal... but the bad news is that both conditions cause me to make more of them.

On the Lyme end of things, I did get a positive blot test and iGeneX (lab in Palo Alto, California) blood test results that were positive for Lyme AND a co-infection. Co-infection?? What the heck is THAT? Well, my friend, let me tell you: this Lyme bacteria is smart. Really smart. It "re-activates" other dormant viruses in your body! Makes them be active again. So on top of Lyme, you now have some other hideous thing to deal with. And your body spins its wheels fighting these things ... so the Lyme says "oooh look over there -- THAT virus is SO much more interesting than silly, non-threatening little me over here." The bad thing about that is you MUST treat the co-infection if you want any chance of getting to the Lyme. Great. Just great.

The Lyme Lady (as I call my doctor who treats me for Lyme) is quite brilliant and I am extremely lucky to have found a doctor out here in California who treats Lyme.... but she doesn't always understand that it isn't just about being brilliant and knowing medications. It is about trust and believing in her and knowing that she is there for me and believes I can get better.

Which is not how I have felt -- I left her office last time in tears. I felt like I was sent out to walk on a high high teeny tiny rope way above the ground as she scoots me on my way, pushing 4 prescriptions into my hands that I can "try and see what works". Talk about terrifying. I have been paralyzed with fear because these medications make you worse.
That's the crappy thing about killing this stuff -- you gotta kill it. And you feel worse while you are doing it. My brain cannot even grasp feeling worse -- is that even possible???

So let's review, shall we? I am standing at the top of a very high tent, ready to walk across a teeny tiny rope -- the only way out is across -- and I am clutching a fistful of prescriptions that may or may not help me make it to the other side ...
No safety net. No words of comfort that "you'll make it! We'll be there for you!" No reassurance that someone will be down there if I should slip or fall or get scared or need help.

You get paralyzed with fear in situations like this. And, just for the record, I have never been paralyzed by fear about anything. This is not a pleasant feeling by any stretch of the imagination.
And, if I am honest, I am getting pretty pissed off. The only way out is that damn rope and any idiot should know that you need support. Lots of support to even take the first step.

So... here's the thing. Part of me doesn't even want to write about this. Just getting this far is making me anxious ... because I am trapped inside this body and surrounded by nasty symptoms that just appear and disappear without warning. It's bad enough that I feel so horrible all of the time... I can't get away, you know? Do I really want to rehash this crap and have it stare at me, reminding me once again how heinous this whole thing is???

I don't know. Maybe.

One sweet, piece of hope in the midst of all this:
Oddly enough, just this week, I finally found a doctor who actually said these exact words to me: "Wendy, I have got your back."
It took my breath away -- what powerful words. So so powerful. I burst into tears because I no longer felt like I was walking a tiny rope way up high with no safety net and no one to catch me. He's there.

And it is okay to take another step on that teeny tiny rope, buffeted by wind and struggling to keep going, step by step.

If anyone out there wants to hear my story -- let me know. It may be worth it to write it down as I go through treatment which starts -- oh, like this week. But am too tired right now so.... tomorrow it is.

If I do decide to write, you can bet that it will be brutally honest but also have humor.... because that, I have found, is the only way to find the strength to take a step forward... and then another... and then another.

Being sick really really sucks. No one should suffer the symptoms I am dealing with -- not even my worst enemy. I would not wish this on anyone.

I hate ticks. And I can't even say "Bite me" anymore because.... well, uh NO THANKS.
I've had enough of THAT, thank you.

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