Friday, October 5, 2012

War updates

Medical update: (the basic, most obvious symptoms)
rash on arms and chest
hair falling out
migraine daily
severe air hunger. I feel like someone has reached inside my throat and is slowly strangling me.
hard time with food. Only wanting the bad food. Things I can eat smell rancid. 
I am still losing weight. Now my skinny jeans are too loose on me. 
my hands currently have a dulling pain but most of the week its been crushing
My legs are constantly cramping in opposite directions.
My back pain never lets up. 
The visible cysts seem to be disappearing. 
Broken capillaries. The spots are no longer only on my stomach. The are slowing getting bigger. 
Dementia. It's back. Like a poorly written villain in an unneeded sequel. It's the most difficult to believe and hard to deal with problems I am facing. 
Oh, and a lovely fever. 

Tactical update:
 I am gradually continuing to built up on treatment. I need to reintroduce some herbals to help my immune system. The doxy has me usually feverish.  
SSDI application has been submitted. I have been fighting and jumping though hoops to talk to someone regarding my food stamps. No one seems to agree on the status of my application. I will be getting a case manager soon to help me apply for Medicaid which then will help me get someone like a nurse to come in and help me. 
The first fundraiser has provided enough, unless I get new meds, to get me through mid November. 
I just found out today that my BNI chapter will try to come up with some fundraising ideas.
And K-State theatre will be doing a Midnight Madness Benefit for awareness and fundraising. 
I swear, once I have fought off the invasion of the buggies in my body, I am going to work so hard to fight for awareness and policy changes regarding this disease. I am bring hell the bugs. I will kill them before they kill me. 

This week it really suffered. I don't really remember much of it. What I do know is that I feel like I got my ass handed to me in a fight club of sorts. I have been struggling with keeping my goal in sight. Now don't worry. I am not quitting. It just seem hard to keep moving in a direction when I feel like I don't know where the destination is. I honestly don't remember what it feels like to be well for more than a few days at a time. Those of you who know me know I have had periods where my functioning has increased, overall I have had a steady decrease.  I am trying to get a clear picture in my head of my goal for this fight. I dont know if this makes any sense. Basically, the destination is hard to stay focused on because, for me, true wellness is still a fantasy. 
Even though I don't remember all of it, I know this week was hard and it completely wore me down. I have realized how bad it is for an extrovert to be stuck alone all day, but I am learning to deal with that too. 
Though I feel beaten this week and felt alone for most of it, today included a visit from a friend and a phone call from another promising thoughts, prayers, good vibes and help.

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