Tuesday, September 6, 2016

See us exist

*Disclaimer A*

I just read a fellow zebras' status about the frustration of spelling and pronouncing, let alone explaining EDS. Solidarity. I just dealt with that b.s. on the phone, with a nurse, this morning. In no mood. Hurting like hell, tremoring in fact, exhausted, nauseated, faintly yellow and glazy eyed (oopsss f*** guess it doesn't take much with a mitochondrially insufficient liver!) and somewhat edema ridden, all so I could have like a couple hrs of passion. My passion that this illness, which very few fully understand is essentially killing me (unless I get to a holy grail) is trying very hard to rob me of... and I'm fighting back, but I don't know if I can or will win. We're pushing "a little too late" terrain here, and Cana-duh is not moving fast enough, or with the adequate resources, to help.

I have to do things my own way and it's my only shot, in an Eminems' "Lose Yourself" kind of way, but about health, related to a hopeless circumstance if it stays as it is, in terms of outcome for me. Because I cannot keep up with all my requirements and they're not helping. Many theys. Who wouldn't see me exist. Somehow I will win this battle, even if it has to be a Joan o.a. ...

..But in light of this, yeah, I'm no mood to spell Ehlers-Danlos for you, or even worse, f***ing correct you as you call it "Ellers-Daniels" ... YES. Thank you sir/m'am, but you know, that "Ellers-Daniels" is killing me, k? and so I won't be keeping that nurses' appointment, thanks...Ok therrre doncha know?..

My spoons are really precious.

This is a ride I want to get off. It's not intriguing or positive like the whole "discovering you're autistic" was. It's simply horrifying. To discover you're a different type of divergence: Physical divergence, from the typical human body type, and what to do to help it, to save it, what's precedented in all the current textbooks. These textbooks need to be re written, badly. Research needs to happen, badly.

But in the mean time, you're the mysterious zebra caught in the crossfire, and so if you're very ill they may not be able to find out how and why, and thus treat the how and why, in a timely manner. They don't understand how complex it is, how interconnected it acts - they seem obsessed with treating one area at a time. One thing at a time. This does not work well for zebras; treating one thing at one time when the mis-firing problem, the defect of that thing is determined by the chain reaction of several other body actions which caused it. They barely see that exist...

This is what they call "rare" but all it really is, is "different." Divergent. A body different in it's actions, to what they are used to. So they need to learn, but way too often they put their backs up instead. The medical systems are currently infested with the "NMP" (not my problem) attitudes that are hurting people - killing people, either completely or in terms of life quality, in the numbers.. Zebras in particular. They refuse to see us exist. They sometimes do awful things, like defame us via psychiatry, to devalue our existence and twist what really is, so they don't have to see us as real, and human. 

In terms of me now, since I went out of my way to prove that I'm real (and nearly killed myself getting so much evidence that they couldn't deny me even if they tried) doctors have, as of late, described me as "very rare" presenting and not only a zebra, but the neon rainbow one. Great...

Imagine that. So you are very rare. You are a mystery. You're wasting in front of their eyes but they don't fully understand how and why .. Because you're rare. You're the Zebra. The rainbow one to boot. They're so intimidated by this that it blindsides them from thinking outside the box, to refer you to the few doctors existing who may be able to help...if there are any, but see, they're too who-knows-what-anymore to even try and look. But sometimes they say, oh; You may be able to get help at these 2-3 such and such specialized research hospitals, private pay, in such and such a location. But you're not there, and you're poor. So God help you. Have a nice day/life! 

Discovering my apparently profound physical divergence was a second, major, too-late-coming revelation and it was much more like a nightmare than what discovering my neurological divergence (being on the autistic spectrum) ever was. It made that look like a walk in the park compared...and I want the bad dream to be over. Pinch me. I want to wake up - but the thing is, I can't wake up because I am awake and this is reality.

I wish I had known, before, what I was doing to myself trying to push too hard to perform, and worse things, because I know it was made worse this way. I know the mitochondria, my cells, my equilibrium of body functions, were further injured. It woke things up, to what extent I still don't know because I can't get to the "rare" doctors. The damages aren't showing up in their demented basic and typical tests 'cause it's very "zebra", not at all horsey, damage. It's organ insufficiency in the cellular activity, through "collagen dystrophy" - it's different. "Zebratic cirrhosis everywhere" (cirrhosis means "scarring" by the way)..

So, that sounds excellent, but we don't know what organ to transplant.. see because.. it's kind of ALL of them..and um.. it's kinda in your cells! It's an all 'round extravaganza... That sounds hopeful, doesn't it..

and it all started with being Ehlers-Danlos..and it was made worse because I let people, and systems, gaslight me for being different, for refusing to see me exist as who I really am - and in it I wasn't too kind too myself, for too long. I admit that I was angry at my body for being so very different, and how no one bloody well believed me, it was like I didn't exist.. So I was angry at it, and I'm sorry, but I can't take it back now.

However, I'm not alone and neither are you, fellow zebra (including the most severely affected zebras of all; the 90% undiagnosed zebras, many of whom died impoverished, addicted due to self medicating horrendous musculoskeletal pains, and physically unable to withstand that, hence the early death.)

Things needs to change. Things need to be exposed. I'm tired of spelling Ehlers-Danlos for people. I'm tired of explaining what it is...and we shouldn't have to. Many are affected and suffering though many *need* diagnoses badly, and then from there, we need equal and fair access to treatment just as badly!

So no more "Oooh yeah I just have sooo much hopeys wopeys I'm sooo grateful that I'm getting medically neglected, happy happy hashtags, I'm super spiritual and prayer is great! yay!" inspiration porn overload for me. No. We have to stand up to these medicals! Don't get me wrong, my faith is crucial to me (or I would have given up by now) but I don't want to be a kumbaya-singing buddhist lying here "surrendering" so that I don't "desire" change - because I do desire change, and so I'm going to be a pagan, pegasean warrior, with faith, while I try to reach for my own bucket list dream, while I simultaneously try to expose what needs to be exposed for the world to get it, in the ways that I feel I can do it.

Let's make it happen. Nothing about us without us...and with EDSers...we need "us." It's like people won't just SEE US EXIST...and thus learn about us in ways that are deeply needed, and this feels like abuse in the form of neglect. It has to stop. If I can't prevent the abuse and/or ignorance from wounding me, I have to do it for my children, and others who could possibly be spared. Why do I do this - I want to maybe have a shot at healing, even at least part way, but if I can't, I want to at least see them see us exist. 

Rosie G


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