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.

Tuesday, October 28, 2008

Made it through...

So I had the brain MRI yesterday. It sucked, as I knew it would. But without the wonderful people at the MRI center and Alan beside me, I would not have even been able to get in the tube. Rachel, the technician, was incredible. She was with me the entire time, holding my hand and talking me through the whole series. She told me how long it would last and what was happening next. She was amazing. When she first got me in the tube, she said that Nicole -- another technician -- was going to hold my right hand while she set up the machine, then Rachel would come out and hold my other hand. So that is what I thought was happening -- my right hand was held by Nicole and then when Rachel was back, she was holding my left. Alan was there too, with his hand on my leg. I could not see anyone or anything since the tube is long and really close to your face.

I held onto those hands like they were saving me from drowning -- they were lifelines to me. And the oddest thing was this -- I really felt close to the person on my right. I wanted that hand near me -- I felt so much love and support from that person. This struck me as kind of weird since I thought that Nicole, the technician, was holding that hand. But whatever -- I didn't question it but just held onto her hand as tight as I could.

20 long minutes later and we were on the final series. They were so loud -- it feels like someone is firing a nailgun right beside your ears. It really is a horrible thing, that tube. But the info it gives is critical right now so it needed to be done.

Anyway, I made it through the last set and the next thing I knew, I was being pulled out of the tube. Imagine my surprise to see that it was Alan holding my right hand!! That was the hand I was grabbing so hard that he said he lost feeling in his fingers. I still find that amazing -- without knowing who it was, without being able to see or hear anything, it was pure energy that told me what I needed to know: Alan was on my right side. That is still very powerful to me.

So now we wait. I know that they sent the results and that the Radiologist called my doctor. I just want to move on with my life and be sure that we are on the right path. I know things are going to be okay.

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Sunday, October 26, 2008


I have a brain MRI tomorrow and I am terrified.

I don't want to get it done but we need the information since it will tell us why my sight has gotten very bad in my right eye. Which, in and of itself, is terrifying.

So much about Lyme disease is beyond words to describe. Having odd symptoms pop up unannounced and randomly affect different parts of your body without any notice is one of the worst things you can do to a person. It keeps you constantly off-balance, almost waiting for the next nasty thing to occur.

So one of the things I am working on is learning how to let go. Someone gave me this analogy: let's say you have a chicken in your front yard, running around. You HATE that chicken being there -- really HATE it. It makes you mad and you yell at it to GET OUT but it just keeps running around. It makes you so mad one day that you go out there and grab it around the neck and shake it saying "GET OUT! GET OUT!"... but now? It can't get out.

You have it by the neck.
And until you open your fingers and let it go, it can't leave.

Which means not holding on to your anger or frustration and trusting. It means surrender.

To me, the word surrender always meant "to give up because you lost." But that isn't really what it means at all... it isn't about losing. It's actually about strength -- the strength of allowing yourself to trust that it will be okay. That things will be okay.

So tomorrow's MRI is about surrender.

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Tuesday, October 14, 2008


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.

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