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.

Saturday, June 06, 2009

Fell through the ice

I think of daily life with Lyme like walking on ice. When you are walking on THICK ice, you can feel the solidness under your feet... it sounds thick, it feels thick, and you are not going to fall through. But there are times when the ice has melted and the layer under your feet is very very thin... times like this are horrific because you can feel how thin and precarious it is yet you have to keep walking. You walk gingerly, hearing the cracks of the ice under your feet... you try to put your foot in a safe spot, hoping that it will hold but no matter how careful you are, it happens.
You fall through.
Well, I fell through and it is so ugly right now. I almost do not want to even write about it.
I have been eating medical food for a few months now and that has been a HUGE help... up until about 2 weeks ago, Doctor had been using words like "rehab" rather than me being in the shit and just trying to keep my head above water. Then I ran out of that food and his office was out of the food so I was 4 days without it. That started the thin ice and BOOM I fell through.

I have huge numb spots all over me -- starting at chest level and going all the way down to my feet. It's creepy. It feels like I have an epidural -- like I am sitting on slabs of meat instead of my butt. It's not the skin that is numb -- it is the tissue under the skin. Which makes walking and sitting a huge pain. My feet hurt so badly in spots, my knees hurt where they press against each other... I am so skinny that my bones really do hurt when they push against each other. My back of legs are numb under skin... my back is sore. It feels like I am walking on blocks of wood instead of legs. Going up and down stairs is a real challenge with my feet like blocks.

I cannot do kegel exercises -- I cannot feel those muscles. It is hard to pee and poop. My hands feel tingly and in that weird space of "almost numb". I am exhausted.
But terrified to sleep because I have no idea what the hell else will be wrong when I wake up.

My emotions are spilling out everywhere -- terror, frustration, sadness... I had climbed my way out of this pit already and now? I have been shoved back in because someone else's mistake. Yeah, I am way pissed off about that.
I know that mistakes happen.
But shit. That mistake is costing me HUGE right now.
To be fair, I may have fallen through anyway ... but who knows?

When I saw Doctor yesterday, I was totally freaked out.
He was not.
Which was so comforting to me... I mean, if he can look at me and NOT get worried, then that gives me hope and I SO need hope right now. And he assessed my brain functioning, my vision, etc. And he did something to show me that he knows exactly where my brain is misfiring... he had me do a kegel (or try) then he had me do some complex figure-8s with my left hand.
Then he had me try the kegel again.
It made a difference in the strength... it *felt* different.
Long story short: he has me wearing an ear plug in my left ear, doing figure-8s with left hand.
And of course, eating the medical food.

Yesterday was horrible. Today is shitty and now my hands have also joined the party of shit. They feel like I am wearing carpet on them.
But there have been moments when the kegels are better. Not great. Just better than shitty.

One bright spot is that my vision is holding steady. Which is a HUGE thing. THANK YOU.

Doctor told me that we would get me out of this mess. We have done it before and we will do it again. So I am just taking it one day at a time. Sometimes I need it to be one TV show at a time... soI can check off another hour that I have made it through. There's no way around this -- I can only go through. People who are going through tough shit do not really tell you what it is like to actually be faced with something so terrifying and horrible... it is hard enough to go thru it one time but re-living it when you tell someone about it? Sometimes you just cannot put yourself there. Well, for all the people out there dealing with shitty stuff, that is why I am putting these words down. To show that you can be in the pit. And acknowledging that you are in a shitty place does not actually make it any worse.
It is what it is. No more, no less.
But how does a person *handle* it? Handle it when it is so awful, so horrible that you do not know how to help yourself? Or keep your mind from free-falling into fear?

The key, I have found, is to be honest with yourself. This SUCKS. It SUCKS BAD. Saying the truth does not make it worse -- it is what it is.
And then to find the bright spots. Because if you are being truthful then you need to tell the WHOLE truth, not just the bad shit. There are ALWAYS bright spots -- you have to look for them but they are there.
My vision is holding steady -- yay! It is a gorgeous day out so I can sit in the sun -- yay! The kegels are better when I do the figure-8s -- yay! Doctor is not freaked out -- yay! I am able to sleep -- yay! I have wonderful friends and family that check in and give me support -- yay! I have some time to read and let my body heal -- not having a job is actually a blessing right now because otherwise I would have been unable to finish any project and would have let down my boss... it is much better to be right here, right now until I get my feet under me -- which I WILL -- and allow the ice to get thick again -- which it WILL.

And that is the other key part.... I WILL get through. I WILL get out of the ice and I WILL be able to walk on THICK ice again. Very soon this will all be in the past and I will be able to say, "In the past, things were tough but now they are good."

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