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, 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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