Week 11 of Getting My Ass Kicked

Week 11 -- July 18, 2010

Why start here? Why not start at Week 1?? Er, that would be because I have been a mess.

I am getting pounded with experimental medication. Many others have gone before me on these meds but not many out here on this coast. So I can't give many details... yet. But starting now, I will try to give some updates. I have been keeping careful notes of all the ugliness as I go through this mess and one day I will write it all up. But for now I can at least show what it looks like to get my ass kicked and how to find the courage to walk in there once a week knowing how bad it is going to be yet doing it anyway.

It is what it is.

There is a payoff. Oh yes, a BIG payoff and that would be being healed. That is what this treatment does... it pounds the crap out of Lyme bacteria. Babesia. Bartonella. Erlichia (sp?). And all the whopping loads of virus I have been infected with. This treatment and the promise of getting out of this shitpile is the reason why once a week I walk into my doctor and let him kick my ass. Then pay him and say "thank you"... knowing I have a week of Hell to look forward to.

This is The Way Out if getting my ass kicked every week is just what needs to be done to push through to the other side... well, bring it on. So I haul my scrawny (98 pounds) but scrappy ass in there and deal with it.
I will admit to moments of defiance... like last week when I saw the huge pile of medications he had put together and one fell off, I said "DO NOT pick THAT up. Just LEAVE IT."
He laughed and picked it up and pounded me with it anyway.
Hey I tried.

Healer

I thought he was going to be just another doctor... but he wasn't.
Just another doctor, I mean.

My current doctor is unbelievably good and should be called "Healer" because he is so much more than labs and medication. Right now, I feel like one of those jigsaw puzzles with the pieces all messed up and the picture not fitting together... my doctor knows what the picture should look like and is putting different sections together methodically and consistently. He can see the big picture of how the brain and body work together -- or don't as in my case -- and slowly starts rearranging the pieces until they start to fit together the way they should. He understood me and my garbled descriptions of all my weird symptoms without raising an eyebrow or looking freaked out.

Which is saying something, believe me.

I have learned so much from this man... he says that one thing that doctors don't recognize or help with in Lyme patients is the effect of Lyme on the middle brain. I can tell you from intimate experience that it SUCKS to have this stuff in my system but at least now he has explained what is happening so I understand it. He said that I need to view my brain and energy like this: I have $30 bucks for gas and that is it -- once that is used, there ain't no more. So I fill up my tank. If I decide to use it all up in one go, then I will find myself on the side of the road. If I use it in small amounts with breaks in between, then I can make that $30 bucks last awhile and NOT get left on the side of the road.
What happens when I use it all? I wanted to know.

Well, the middle brain gets overstimulated. This can happen from too much sun without polarized sunglasses or watching TV or playing computer games or being in a store with those horrible lights overhead or... It causes the brain to get so fatigued and trashed that the swelling gets worse which makes my symptoms worse.

Ah. So that explains a lot.

He said that finding ways to manage my energy and keep the brain from getting overstimulated is crucial right now... and he has some interesting ways to stretch my limited amount of energy as far as we can. But before he gives me his tricks for stretching energy, he does all these tests in the office to see how my brain is functioning. He can tell exactly what areas of my brain are not working with these tests -- it is fascinating in weird way.

In my next post I will explain what tests he does as well as the tricks he has me use to help extend my energy and keep my brain from getting overstimulated. I wish I could do that now but am done on the computer for now. Too tired and vision is blurry.
I hate ticks.