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, April 17, 2009

99.5 pounds

I just weighed myself and I am almost at the milestone that my doctor set for me a few months back.
Wow. It is so weird to see the numbers moving in the right direction yet still feel awful.
But it is what it is.
He gave me some huge encouragement on the phone right now... he said that he is feeling very positive about things he is seeing. I was malnourished before and now -- finally -- with the medical food, I am putting some nutrients into the tissue. My last visit was yesterday and I had trouble walking in there... my right foot was dragging and I had a hard time moving properly. He said the right side of my brain needed stimulation but we have not been able to do any of that because it crashes my brain and vision -- bad thing. It causes symptoms to get worse or new symptoms to rear their ugly heads because the brain swells. I think I have written about what a "crash" is before; the vision thing is something they watch very closely. I lost half the vision in my right eye for awhile which was terrifying. It came back but... yeah. Talk about stress.
So long story short, they avoid crashing me at all costs.
But yesterday, he chanced it because all of his brain tests told him what was needed and they also told him my system was handling things in a good way. (Have I ever written about the type of tests he does to show brain functionality? Not sure but that would be a fascinating post.)
So he adjusted my LEFT foot.
Yes, LEFT because the RIGHT brain is what was faltering. I do not totally understand all this -- it is WAY deeper brain stuff than I have understanding for but HE gets it.
And like magic, my right foot started to behave. I was able to walk much better and move the foot properly. My vision was already dim in the right eye but good news! It did not get worse!
So today when I talked to him, he was very encouraged. I slept the rest of the day when I got home after the appt but my vision did not get worse and symptoms remained the same -- horrible and crappy but no worse.
Which is progress. Yay!
...
Sometimes I wish I was better able to see the progress, you know? Right now, I have to rely on other people... and my doctors... because it is very hard for me to logically evaluate and see things. And for someone like me -- a TECHNICAL writer -- that has been so frustrating. This mess has not been black and white. Just a million shades of gray with nothing being clear.
And the water I am walking through is muddy. I have to trust when I put my foot forward that it will meet the ground and not fall into some hole or onto something sharp.
I have had to learn to live with gray and mud.
And just allow it to be.
I used to get so frustrated and angry ... I kept searching for the magic clue that I was missing that would tell me WHY my symptoms got worse and WHY they got better or went away. I used to keep pages and pages of logs hoping to find the thing I had missed every other time... the truth is that constant change IS a clue.
Symptoms moving from one side to the other IS information.
And I have put all this into doctor's hands because it DOES make sense to him -- it is the nature of the illness and infections I have. That is all. It's a lot but that is the bottom line.
And somewhere along the line, I realized that I could either continue being frustrated - which was not helping me at all - or let it go.
I let it go. It saves me paper.
I still cry but hey, that is NORMAL considering how tough this is.
I still get frustrated but I also laugh.
What else can you do? I mean, I consider it a challenge to FIND ways to laugh and I have written some pretty funny chapters for a book I am working on.
Oh yeah that is the other thing -- I really do enjoy writing now. I have a very funny book that hopefully I can finish and maybe publish.
Well, I am out of energy and thoughts for the moment. Ta.

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