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.

Sunday, March 08, 2009

Bar Fight Rages On... but is that some SUN I see?

It has been sunny the past two days and I sat in the sun.
It was wonderful.

The bar fight rages on. My doctor had me stop the medication to let my system regroup... to be honest, I cannot tell much of difference. I mean, there are some small things that are better like having a bit more energy... and actually *feeling* hungry which I have had trouble with. My weight is still way too low but am doing the best I can. My vision is still good -- not dimming like it was, no dark patches, no blasts of light when I look to the left... so that is very good. I still have horrible cold spots on my left side with patches of numbness but there are also times when my feet are actually *warm*... so warm, in fact, that they feel hot and swollen. I asked Doc about that and he said that is the brain perception thing.
It is SO helpful to have people who understand and know this shit. Seriously. If I was at a regular Neurologist? I'd be on medication for MS which would be a HUGE problem since those meds do not work well for Lyme people.

Doc told me that I need to think of what I am going through as chemo because that is exactly what it is... we are killing off bad stuff in my body and the fallout from it is awful. I have lost huge amounts of weight... not to mention hair... my apetite is shit... etc etc. Anyway, I had a great conversation with a guy who went through chemo and he had the best suggestions. It was a relief to just be on the same page with someone... I mean, he is cured now but his prognosis was not good at one time -- at least my prognosis is excellent. I CAN be cured -- but getting there is hell on wheels. He said my situation is worse in some ways than his was because at least he was knew generally what to expect ... how long things might last or what might happen. Not so with Lyme. Here's what he said that helps:
  • Get the big DVD sets of the TV series. The short episodes of 1 hr are much easier to make it through and give you something to look forward to. We have been doing this and it really does help -- I can make it through an hour but not much more. We love Chuck... plus I also started the Shogun movie from the 80s. Not to mention American Idol is back...
  • Sleep. It passes the time and helps you heal. Yeah, don't have much choice in that since I am exhausted all the time. And sometimes I am so damn sore that it just hurts too much to sleep but once I get the pain under control, that helps.
  • Take your pain medication. Yeesh, the pain gets very bad sometimes from how much my bones hurt and ache inside. The migraines have eased up so YAY for that. Doc says that controlling pain is critical for me right now because the brain does not do well with pain. It causes more swelling which causes more scarring which causes worse symptoms. Not good. So I am trying to stay on top of things.
  • Tell people what you are going through. This was a tough one for me until things got so bad. I mean, now that I can tell them this is chemo, it makes it a lot easier to explain. I used to try to suck it up and deal with it myself but ... I can't. I am just not capable of doing that anymore and it does a disservice to the people who are in my life. They need to know how bad things are -- things WILL get better but we are in the UGLY part right now. The Lyme is a living organism. We are using meds to kill it. It fights back by dumping toxins into the body -- hoping if it makes you miserable enough, you will stop the meds. Plus when we do kill it, the body has to have energy to get rid of the dead stuff. It is a huge mess. They have found that giving the body a break is a good thing -- lets the system catch up and get rid of crap and regroup to take it on again. So tomorrow I start the meds again.

Eh. Am running out of energy. Will write more tomorrow if I can. Today was a bit better -- I'll take that. Alan was home and it was so wonderful to be beside him. He didn't sign up for this shit -- and it sucks that he has gotten dragged through it with me. It really sucks.

More later.

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