Core Truth - read at your own risk

1. Purple is my new favorite color!

Beyond here I have to do some mental housekeeping. I have not written in a long time - does anyone else have a running conversation in their head they mean to write down, just never get around to it? All my health woes are well documented...blah, blah, blah, Lupus sucks! I can feel pain in my eyelashes then someone says how healthy I look.FYI-that is the medicine giving a bright red fat face. I do not like a fat red face! When a person asks; "How are you feeling?" it is nice, polite, social - can I scream? "My bones are on fire, my head is going to explode, everyday I notice my eyesight lessening, and if I had 10 Percocet i would take 5 !" and that is another thing...NY laws regarding prescription pain meds are barbaric. I bet inmates have an easier time getting pain meds than regular folk. Am I addicted to pain med? Uh yeah, because i am opposed to pain! It is a quality of life issue-no I don't want to be addicted to anything, but I am. I have SLE 20 years, cuts in my brain leaking brain fluid, white matter in my brain which is inoperable cause I coded the last time & Dr. Brainiac says I won't survive another operation. I have vasculitis, fibromyalgia, CNS Lupus, hypo thyroid disease, secondary Cushing disease 

high blood pressure (like 135/107) injured at work there is a nerve impinged between my tib/fib head joint, C4 & C5 are    compressed and impinging another nerve, T3 was moved right of my spinal column, T2 slid to the right. That'sthe big stuff...do I require medicine to help ease my pain? Heck ya! Does this make me an addict? Do I care? With the appropriate regimen of medicines I get to participate in life-without them I am a spectator. Those of you who know me, know I like to participate-Tiddlywinks, cards, maybe even swing a golf club again. This menagerie of illnesses forced me to retire on disability...50% of my previous income & Medicaid. I know I am 48'years & 20 days, this is not where I ever thought I would be. My home is the kindness of those who love me or i would be homeless...just Zuko & I living in a pickup! Good country song in there somewhere.  I don't have any sense  taste, brain Dr. Took that. The upper quadrant of peripheral vision in my right eye is gone Sometimes i fall down. Standing one moment, 

 

next thing I know Zuko is licking my face. When I was staying at Poopy's I apparently slept for several days-we affectionetly called them "coma sleeps." my Jessica Rosemis 10, she need not watch Aunt Lee Lee "coma sleep."  i write all of this as background to th core raw...i do not live more than any 5 minute span when either the physical pain hits or the emotional reality hits. I cry myself to sleep. (which does not help under eye bags or dark circles) I avoid mirrors for i find the red bloated cheeks hideous! They are, they aren't healthy robust cheeks they are damaged forever so I don't look in mirrors. I am fat. For my comfort I am fat, an athlete all my life reduced to a comfy chair and blanket. Have you any idea how much that sucks? I know, I know, I am luckier than so many others...we all have our cross to bear-I am so tired! If I could take away a child's cancer or a soldier's PTSD'i would. Right now, here tonight, i am dishing my core truth...I believe I should be like a wounded animal & go off alone for this leg of my journey. No matter how much someone wants to see you through, that is too darn hard & too much to ask. And sometimes what others believe you should do is not whatmy