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.

Monday, October 31, 2011

The Ugly Secret

The Ugly Secret

I have never written the raw, ugly, unfiltered truth. I hide it from everyone except my doctors. I can't handle the disgust or disbelief or fear that I see on their faces as I try to describe what it is like to live in this body every day. I see them take a step backwards, worried that they could "catch" this... I see their face close off and their brain shut down as they try to distance themselves from what they are hearing.

I get it. I really do. It is why I protect people ... why I shield them from the amount of pain that I am experiencing as I stand there, trying to talk to them. Because people pick this up. They pick up suffering. They don't know what it is that they are feeling or picking up but it is there... and it freaks them out.

I am going to drop the curtain and tell the truth now. I think it needs to be told. And then I will go back to hiding it again but at least then, it is out there. The truth. And I will do it without using the word "pain" which tells you nothing and has no meaning to what I will describe.

Horror #1:
Have you ever had a cactus plant? Small one with those sharp little needles? And then accidentally knocked into it one day? Those little needles hurt. Even the small ones - they hit you quickly with burning pins in multiple places...
Now imagine one of those cactuses in the desert -- the ones covered in sharp long needles on their long arms that point every direction. And what if there was a cactus shaped like a chair where someone forced you to sit and forced your legs to be surrounded and pushed into those burning needles... Relentless agony no matter how you move or sit. Costant assault on your brain from the inside out. There are no breaks from the burning agony that covers both legs and surrounds my feet. Walking becomes unbearable as burning needles force themselves deeper and deeper into my skin, my body.
Yet no one can see this happening. I don't have a leg hanging off and I am not bleeding copiously from a huge wound. It's all in my nerves and tissue and bones and no one can actually see that.
I look fine... yet I live in a cage of needles.
And that is just one type of agony.
Here is another...

Horror #2:
Have you ever been out in the snow so long that your feet got numb? And then when you came inside, they slowly warmed up and became burning coals of fire as sensation returned?

You cannot cool them down with wet towels, putting your feet in a bath doesn't help because they are burning from the INSIDE OUT.
That is another agony. Having your feet actually IN a pit of fire because they burn so badly.
And with Lyme, it is not only your feet ... it can be both legs or arms or the whole body that is burning so badly that it feels like you are melting from the inside out.
I can't watch Wizard of Oz because that scene where the witch melts? That is how it is to live inside my body on the bad days.
And that is on top of having needles shoved into my legs and feet.

There's more... should I continue and just get it all out at once like popping a blister? People are truly not meant to walk in these shoes of horror. But seeing as today IS Halloween... and I am too sick to go to a Haunted House... here is the Lyme Haunted House that many are living in. Not just me.

Horror #3:

Foot cramps. Ow. Your foot curls up into a ball when the agony grabs a hold and won't let go. All you can do is grab onto your foot and rock back and forth and hope it eases up soon...
That also happens but it *stays* and does not release. Your entire leg shakes from foot on up. Uncontrollably. 3am and BAM you wake up with shaking and ball of agony, that is melting and covered in long cactus needles.

Horror #4:
Bone deep cold. The type of cold that gets inside your skin and your muscles and goes deep to your core. You cannot get warm. All you can do is shake and listen to your teeth chatter as you cover up with piles of blankets and sweaters.
None of which help.
Sometimes your skin feels ice cold to the touch and other times? It is burning hot.
And this cold is on TOP of the burning fire sensation, the long cactus needles, and cramps in your feet.

Horror #5:
Garlic bread. The wonderful smell of garlic fills the house. You loved garlic bread... until now. Now it swirls around you and fills your nose and your brain explodes.

The senses. Smell. Sound. Vision. I think I may have posted something about this before but it was not the raw ugly that truly happens. Like the needles that overwhelm the nerves, the senses are also put on steroids with NO BUFFER. Normal people without Lyme have natural shut off valves... or circuit breakers in their brain. These circuit breakers are essential in normal life, in the same way that there are circuit breakers for the electricity flowing into your house. Your systems in your house are set up to be able to handle a certain amount of electricity. If it starts to spike and get too much then FLIP... the circuit breaker stops it from coming in so the appliances don't get fried.

But what would happen if the circuit breakers got busted? And there was a storm that knocked out the electricity while everyone was home in the evening, working on computers and watching TV and getting ready for dinner... this has probably happened to you. If you don't scramble around in the dark to turn everything down or off, then when the lights come back on, there is a surge that can fry your stuff. Without circuit breakers, ALL the electricity comes flooding in.

And appliances are not meant to handle surges like that. Too much and they shutdown.

Brain also has "circuit breakers" that protect it from too much stimulus in the senses. But that part of the brain (I can't remember what it is called) - the part with the circuit breakers - stops functioning with Lyme. So you are left with no protection against the spikes of information that come in just from daily living. Neighbor's lawn mower. Guy down the street cutting down a tree with chain saw. Your kid blasting music from stereo. Watching movie with louds blasts of gunfire.
And that is just sound.
Don't forget about smells... nail polish as your kid paints her nails. Garlic bread for dinner. Perfume. Road work where tar is being poured. Fish smell in restaurant. Perfume from lady at the next table. And so on...

Oh and what about vision? The brain can usually ignore all the movement that really doesn't matter. It shuts off the small insignificant stuff. Who cares about squirrels running around? Random people walking by window? Doesn't matter right?
Wrong. When your circuit breakers are broken, it ALL comes flooding in. Everything. Brain cannot distinguish between what is critical and what is useless so it assigns importance to everything. All movement. Cars going by. People walking. Flashing lights on a construction sight. Right down to the leaves falling and fluttering in the street. Or the hair moving on a long-haired dog.
It's insanity. And completely overwhelming to the brain which means it has no capacity left to manage symptoms and they explode in intensity.
Which leads to appalling amounts of raw, unedited pain. That was the first time I used the word pain in this entire discussion. With everything I described, you can see that there really is no ONE word that fully covers it. Just like the Pain Scale doesn't even begin to touch what you are feeling. But it is all we have as tools right now. So we use what we've got.

Long story short...
If you've made it this far in reading, I thank you. And congratulate you in looking through my window into this world that so many others are living. There are other symptoms that are equally terrifying and horrific to deal with as you try to get through the day. But this at least gives an idea of the sheer scale. I don't want to scare people - that wasn't my point in writing. I wanted to try to explain what it is that no one sees... because that is the true contradiction of this disease and all of its co-infections. You cannot see all the damage and horror going on inside the body and brain.
And unfortunately that's where most people with Lyme live every day of their lives when they are so ill... they are stuck inside in SO many ways.
Stuck in the house.
Stuck in a body that envelopes you in true agony for every minute of every day... until you wake up and realize that you have to do it all over again.
You have to find something to live for... to help you make it through. It's not enough to just survive and sadly, that is what this disease does to people. It strips you down to the bare metal. I think my next post will be about "how to make things suck a little less"... or maybe how to make it through the day when you are surrounded by shit. How do you do it? They don't teach you stuff like this in school... but maybe, just maybe, my words can help a little bit.

Hope for a New Life

The truth? The IV meds I am on are the true way of being cured. They have nudged me in the right direction slowly but surely... even as they kick my ass. Can't ask for more than that. Plus they got rid of my gray hair... because they HEAL as well as KILL OFF the bugs.

Amazing journey in this ugly pit of shit. Look at my picture. That is my real hair color. Haven't been allowed to go to hairdresser and get it my usual lovely blonde highlights for at least two YEARS now. I was SO bummed... I saw the gray.coming in... and then I started my IV ass kicker meds. And I saw the gray turning BROWN. Crazy. But what an amazing medicine that can kill and heal... and turn back the wheels on aging? Wow.

Okay, time to pass out now on this damn couch which is where I spend my days and I will BURN when I am better. Peace and hope to you.

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