Monday, May 15, 2017

Banners and Violins

Banners and Violins:
My friends are suffering ... hospitals, migraines, black outs, stroke-like episodes, POTS attacks, cardiac arrhythmias, risky endocrine swings, immense pain, crippling fatigue, inability to enjoy eating like a normal person, severe life limits, paying for having a good time with days of pain and suffering, oh yeah and heads falling off...etc..
I am suffering with much of this too ..But I am going to find and steal joy somehow. Whatever.
We're fighting for our lives. For our right to exist with some dignity, some decency in our quality of life...and there is some treatment available already. But money prevents so many of us from accessing it. Money, and attitudes. Attitudes are huge.
Our families are getting sick either literally, or from watching their afflicted loved ones suffer. Our kids are getting sick! Multiple families I know.. Teens to young adults with their lives just starting - and sometimes the kidlets - coming down with this awful sh*t! It breaks my heart for us. I had to convince my younger boy, the one who unfortunately seems to have inherited his mothers zebra stripes, to try his best going to school today. He misses a fair bit, but not tons. We try for that. The school is small and warm and very understanding, but still. It's HIS experiences man, or lack thereof, that concern me .. I do not want him going through what I have ..
It is time for the world to STEP UP for EDS, dysautonomia and all these kinds of genetically based, environmentally triggered, evil illnesses. It's the new autoimmune, yes, it's like; "Autogenetic".. Yikes! No. I'm going to kick this disease's ass in the ways that I can. and I can. Not going to stop until socially, scientifically, emotionally and spiritually, it's ass is kicked. I'll do it by rising above all the protocols designed to let it run us by nose, ignoring all the "hey, you can't go up there, you can't do that" rules, using whatever means I have to, to fly up there with a giant banner citing: WE ARE REAL. THIS IS SERIOUS. FIND A CURE, and CARE..OR BE SEEN AS THE SAME KIND OF JERK WHO DOESN"T CARE ABOUT CANCER.
Violins welcome. Sob parades be. Run for the cure runs galore. Please.. Here's a long overdue tissue box, cause yeah, it's brutal and sad what we go through. It needs to sink in, only then will you realize how cruel the neglect has been... AND THUS DO RESEARCH. Thanks."
Okay I'm done now. I'm ok, don't mind me! I'm all good. I do mean it - but I am ok and I'm strong. I smile somehow through pain and fear. No prolonged frowns. Hehe. Easy does it .. 

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