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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Thursday, August 14, 2008

Wow! You look GREAT! How'd you lose all that weight?



Having people say that to me is one of the most surreal conversations ...
I am so ill right now yet... I don't look sick ... I mean, I don't have a limb hanging off. But the weight loss is pretty scary.
At least to me, anyway.

My doctors tell me that this is how some viruses behave.... some people lose weight, like me. Other people gain weight or fluid. I can tell you from present experience that losing this much weight is NOT pleasant or comfortable. I feel like one of those shivery Chihuahuas... you know the ones? They wear little sweaters all the time and have huge fluffy beds to lay on?
Yeah, that's me right now. I make jokes about my "Chihuahua blanket" that I have to use at night to sleep on... it just hurts too much to lay on the mattress without it. And I am cold all of the time since I have lost all the fat.
It sucks. Don't go thinking -- oooh that is great! No fat! Noooo. Your body needs balance and without it -- well, things are very uncomfortable.

For awhile, I was worried I had cancer or a tumor or something really horrible.
I don't have cancer or a tumor, but I DO have something really horrible and it is called Lyme disease. I have Lyme and at least two other co-infections: Babesia and Bartonella. Babesia is awful -- they tell me that the symptoms are like Malaria and that they use Malaria medication to fight it. All I know is the awful cold spots I get that feel like I have a ball of burning ice inside parts of my body -- it is so cold that it burns. Sometimes I get spots over my vision or I can't get my eye to stay on one spot... the bone and joint pain gets really bad ... and the migraine pain is a 12 on a scale of 1-10. There's more stuff but I can't think about it right now -- too close to home and I need to get away from thinking about it.

So. Yeah, this is the sickest I have ever been. And up until about a month agao, I felt so alone... so scared... like I had dropped down a deep well and getting out looked impossible.
Until Dr. H and Dr. F.

Dr. H is a Lyme expert and worked at iGenex (THE lab for Lyme testing). He KNOWS Lyme and all of the co-infections, he knows how to read the blood tests, he knows the symptoms inside and out.
And he sent me to Dr. F. He called Dr. F the "architect"... which made no sense to me at the time but now?
I get it.
And Dr. F is my ticket out of this mess. More about him in my next post.

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