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.

Friday, February 27, 2009

Bar Fight Got Worse

Yeah. Didn't expect to be writing THOSE words.

In fact, I am so much worse that I will not be able to write much.

I went to my doctor today and he tested all of my responses between brain/body to make sure everything is working. The right side of the brain -- Cerebellum (sp?) -- was not functioning properly. He poured warm water into my left ear to help jump start that part of my brain. I cried the whole time -- no idea why. He says it happens. It seemed to help things a bit but they have gone back to being shit.

I slept from the time I got home until now. Kayla is on her way home -- both of her houses are insane right now. Seriously it is like a perfect storm of everything blowing up at one time -- I have never had so many messes happening at once.

  • At her Dad's house, her stepmom had the twins but she was in crisis and they had to be taken... they are doing much better now (they were born 2 days ago) and hopefully will be gaining weight like champs soon. Kayla has been over our house but going with her Dad each day after school to spend time with them and hold them. Her dad says she is amazing with them. He got choked up when he was telling me about it -- I can only imagine how incredible she must be.

  • Kayla is trying to deal with everything but she broke down last night... I found her curled up on her bed with all of her special animals around her. It was just all too much -- she's just a kid and it was all too much. I get it -- I'm an adult and it is pushing me to my limits so yeah... for a kid? Yeah. Beyond hard. Alan came down and picked her up and carried her upstairs and they got their minds off of everything by playing some games -- he is amazing with her.

  • Alan's work project went into crisis mode when the Big Bosses threatened to cancel it. Seriously. I could not MAKE this shit up. This all blew up last week. He has been working insane hours ...

Wednesday, February 25, 2009

Bar Fight

The best way to describe what is happening in my body is to use the example of a bar fight or a riot. I have had the misfortune of experiencing both...

I was at some crappy small town carnival, packed with people, when a fight broke out between 2 guys and INSTANTLY wave after wave of people started fighting and it swept everywhere. The violence was so fast and so furious that it was just like what happens when you are in the ocean in that bad spot where you keep getting hit by wave after wave. It swirls all around you and it was all I could do to duck my head and get out by weaving my way between and running as fast as I could. It was only after I was far enough away that I felt all the bangs and bruises that I got from pushing my way out and shoving the flailing fists and feet out of my face -- when you are in that mode of survival, you just don't feel the "small" stuff.

Well the same is true when your body is on high alert and feels like it is being attacked. Or when the bacteria you are hitting with potent medication feels the threat to itself. Survival mode kicks in and the only goal is to make the threat STOP. The bacteria does that by making releasing toxins that make you feel BEYOND horrible... the bacteria is smart -- it thinks if it makes you feel bad enough, you will stop the medication.
Well, in my case right now they are causing excruciating cold spots that are causing my legs to shake so badly I cannot walk. My hips are so agonizing that it hurts to sit. To lay. To move. My feet feel like blocks of wood which make it incredibly difficult to walk across a carpet to make it to the bathroom... I tripped yesterday and lost balance and smashed into the wall.
It was excruciating pain and humiliation and... well...

It was FUNNY.

"Funny?" I can hear you say, "How can running into a wall be FUNNY?"

Like this: I am 5'6" and the virus has made me lose a huge amount of weight so I am tall... but all gangly and spindly and leggy. Like a big spider right now. When I tripped, I was carrying a bottle of pills that went clattering.
My husband was in the other room... he heard the BANG and BOOM and CLATTER and WAAAAAAAAAAAAH of me wailing and instantly comes over to me asking "What went clatter? What went clatter? Are you okay?"
I'm crying and eventually get out "I fell... and it HURT... and I dropped my PILLS..."
And he helps me sit down and starts to laugh... out of relief and at the picture he had in his head.... he said that he didn't see it happen but he heard the clatter and that made this HUGE picture in his mind of all of my spider limbs flailing around and clattering as I tried to regain my balance.
Which was very funny, in a sick demented way -- and it made ME start to laugh... at myself as a spindly spider, clattering around.
In fact, we both started howling, tears pouring down our faces.

It was funny and THAT, my friend, is the way you keep your sanity and heal when things are this bad. You can't choose the things that come your way but you CAN choose how you deal with them. And laughter feels SO good. It allows you to say "it is what it is" and "I look like a spider for now but that will change" and "I think I may get one of those little plasma cars that kids ride and use THAT to get through the house".
Oh yeah. We have a PLAN.

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Monday, February 23, 2009

Burning Cold Bites

Yeah, this BITES. Seriously bites. I started a new medication -- potent antiviral cream. I use one small dot of it -- the size of a small pea -- on the inside of my arm.
That's it.
Do you know how my body is reacting to that small amount?
  • I am having serious problems walking because my legs feel like blocks of wood inside, from the knees down. It is hard to get them moving. Stairs are dangerous right now.
  • The skin on outside feels the way that it does when you stick your hand into a snowbank -- the horrible burning COLD? Yeah. That is how it feels right now on both of my legs, from the knees down. I cry it hurts so bad.
  • It is really difficult to get warm -- and I ache so badly with some serious pain from all this. And I *know* pain so I am not being some lame ass with a sob story -- I've passed 2 kidney stones for God's sake so... yeah. I know pain.
  • Exhaustion is beyond words. I sleep and when I wake up, I am STILL exhausted which is a truly awful feeling.
Here's the positive spin (believe it or not, there IS positive):
  • If my system is reacting this strongly, then we are hitting the right spots with this medication
  • My doctor gave me some exercises to stimulate the left side of my brain -- doing figure 8s with my right hand... writing the alphabet with my right foot. It HELPS.
  • My vision is holding steady -- previously I have had it go dark. Lose half of it in one eye. Go dim and blurry. Have blue spots show up. Bursts of light rays -- like what happens when a light is on behind a partially open door in a dark hallway.
  • Mentally, I have hope. I feel ... strong. Steady. Hopeful. Despite the pain and feeling horrible, I am doing something. And it SO helps to have my doctors tell me "Yes, we have heard that from other patients... don't freak out because we do understand and this is not worrying us. It sucks but it is not worrying us. Hang in there."
Bottom line: This is not going to beat me. Make no mistake -- I have never been more ill in my life. I am not sticking my head in the sand -- I KNOW I am really ill. But then I remind myself.... I have dealt with kidney stones. I have had 12 surgeries for Endometriosis. I had a BABY.
I know pain and this ranks up there.
But I REFUSE to give in.

What makes this mess the worst and most challenging to deal? Well everything else had a FINITE END POINT.
Pee out the stone? Poof! Pain is gone.
Push out the baby? Poof! Pain is MUCH better.
Surgery to clean out endo? Pain is much better even though is still hurts to heal.

This mess does not have a finite point where I can say "Oh I just have to get there... once I get there it will be better." Everything related to fixing me actually makes me worse on the way. And THAT, my friend, SUCKS.

So here is how we are going to do this: one day at a time. It is what it is... I cannot change the fact that I have Lyme disease, plus Babesia and Bartonella, plus a huge amount of some virus in my system. What I CAN change is how I deal with it... What I CAN do is take it one day at a time and find ways to help myself through the day... through the hours, if necessary.

And one big thing that is helping me right now is HUMOR. That and writing... I got my first check for an article that I wrote. Very cool. So I will give updates here about how badly things are sucking as I go through this. I doubt anyone will read them -- certainly no one with Lyme should. What's the point? The last thing I want to do is read about other people going through horrible shit -- I have enough of my own to deal with, you know?
But... if it provides someone the least bit of comfort that they are NOT ALONE.... well, then walk with me as I do this. You don't have to say a word or post anything... you can just be there.
And that is enough.

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