I've been living with a genetic, chronic, progressive, connective tissue disability my whole life, and several times it has turned life threatening.  Sadly, this hasn't stop folks from treating me like trash, complete and utter trash, totally worthless trash - for most of my life - except for when they needed to manipulate something (like my labor, love, or time) out of me.

Because of course, it's a dog-eat-dog world, it's the survival of the fittest, where only the worthy survive...

And some of us are obviously the 'acceptable victims'.  The calculated loss.  A necessary evil to this capitalistic orgy.

Even the non-profit, who stated profusely that they valued and appreciated me, threw me to the wolves rather than support me when I was dealing with yet another life threatening relapse. 

Instead of valuing my life they chose instead to do the absolute cruelest thing, by leaving me penniless, without access to any kind of medical care. 

And still others... like my stalker, chose to rub it (this genetic condition, where my body does not make collagen correctly) in my face.  My sad, pathetic face.  God.... what a disgrace.

Of course, our entire system is built upon 'fair game', upon preying upon all the pathetic losers and their weaknesses.

That's how the rich keep getting richer during these incredibly evil times.

Because they have convinced society that some folks don't deserve care... don't deserve basic human dignity and care - because they simply don't measure up.  Not to the standards our wealthy celebrity class has set.

If only I had a spare chromosome on my 21st link... with that genetic abnormality I'd get all the help I could ever need.

Sadly, I have never been deemed cute, nor lovable, and my genetic condition is still mostly ignored - because it only affects us lowly women.  Us, the acceptably used, ridiculed, mocked, played with, and experimented upon.

No matter what I said, who I said it to, or how I said it... help was never to be found - for someone like me. 

Because - I'm not the right kind of disabled. 

Do you get it now? 

Why I loath Keanu Reeves and his Top Down Charity, his weaponized compassion? 

He takes disproportionately from a society dying from a severe lack of healthy food and medical care, a society that allows him to exploit the weaknesses of our most vulnerable.  And instead of fighting for a livable wage and healthcare for all - Keanu chooses to take from our sick society like a crowned king and dispense back to it like a petty fool.

I need a wheelchair now, and I'm still fighting for healthcare.  Things are progressing quite quickly now.  And treatment... of course it's too far away for 'people like me' to even be an option. 

Because we're living in a society where my life and preventable death means nothing.  Except to a small handful of folks.

A slow death, by a trillion cuts... yet none of them hurts a fraction as much as the wounds inflicted by a community that has used me and abused me and then tossed me away like yesterday's trash.

But Clara Samayoa, Louis Grachos, and the entire Board of Directors of SITE Santa Fe are the real trash, for using me up like a paper napkin and then tossing me away, quite effortlessly - just when I needed them most.

The entire staff at Instagram and X (who use human souls like fodder for junkies, who see no value in us as humans, beyond a feast of flesh for others to choke upon) are the truly trash human beings.

The exploiters, the liars, the manipulators, who ALL quite knowingly waste our precious time, our energy, and our will to live... are the real losers, in the end.

For the world has well-and-truly gone to hell - evil is trending - and there's no bargaining with the devil.

What's done is done.  All bets have been placed.  The roulette wheel has spun.

The last word will forever be Mine.

Though victory has been most sorely won.


X
06/2024



© Raena Exe 2024
*All rights reserved.

 
My crazy journey with the genetic condition known as Ehlers-Danlos syndrome has been a common one, I'm finding out.  As so many of us are just now grasping our diagnosis - a diagnosis that has been unknown to us for most of our lives.

I can't count how many times I've been seen by doctors for classic EDS symptoms and was misdiagnosed and mistreated instead.  Every single time, as it so happens.  As it is with most of us with EDS.  Most of us have had to self-diagnosed with the help of today's medical community - and its flight away from traditional practice - towards being social media influencers.

The exodus of doctors might have left a GIANT HOLE in actual physical care, but at the same time it has spread a lot of much needed (MUCH HOARDED) information out into the population at large.  Even to the poor folks, like me.

Sadly, one person's loss is another person's ability to diagnose a condition that has been mistreated and overlooked our entire lives.

Of course, it might help if they actually did medical research on women because it's women like me who predominantly suffer from this genetic condition.  Then again, if they actually treated us for our incurable genetic condition they wouldn't be able to profit from all of the 'chemical fixes' they sling at us - in the name of today's fad X condition.

I wonder how much money us women have paid over the decades to be lied to and treated like rats in a cage.  I wonder how many yachts our collective suffering has paid for.

It's truly amazing how much the medical community has profited from the misdiagnosis of EDS.   And even more amazing is that it has somehow convinced most of us that our symptoms are our own fault.

The truth is, the medical community simply doesn't care enough to know much of anything about a genetic condition that affects more than 2% of the population.  And so... we've suffered, many in silence and shame.

For me, just like with so many who suffer with the hyper-mobility and dislocation type, it has been non-stop-war, literal war, with my body as the battleground.

And like so many others suffering right now from EDS - I am exhausted.  Literally exhausted.

Sigh.  Damn dog eat dog world, and all its winners.

Since as far back as I can recall my body has been invaded - quite regularly - by inquisitive doctors grasping at straws.

My body... my dislocating body... constantly fighting back against the entire world - takes up way too much of what I can remember.  That, and everyone treating me like I was crazy... like it was all in my mind.

Sadly, that's pretty common too, as most folks with EDS my age and older seem to be saying the same exact thing. 

Laughed at, mocked, treated as though I was nuts - given a million invasive and expensive tests, and cures that never offered any real solutions... I was the guinea pig for way too many barbaric doctors and surgeons, and all because they felt entitled to ignore their oaths to 'first do no harm'.

I'm tired.  So tired.  This battle has really taken it out on me, and this too seems like the commonest trend in the EDS community.

After a dozen surgeries and way too many injuries to count, I'm left with very complex medical PTSD.  I'm left not only shell-shocked but physically tortured by their aftermath.

It's a journey, I remind myself.  A journey meant to bring me wisdom and better understanding.

I take a deep breath and I recall... Sisyphus


Exe
06/02/2024

Is there a limit to the suffering a soul can take before it dies?

Is there a limit to the abuse a soul can suffer before it is murdered?

Who knows?
Who cares?

A life of bad nutrition, chronic neglect, constant medical experimentation (since early childhood), poisoned food and water, constant moving, verbal and physical abuse, lost days, and predatory employers, and mental healthcare that never came, a life of abuse at the hands of an alcoholic husband and total strangers - via social media.  A life of constant medical experimentation (that continues today), a life without community or social accountability...

a life where just about everything has been trying to kill me since my very first breath.

Lost Luggage is the story of a little girl who wanted to make the world a better place, who instead was set upon by every corner of life, set upon and nearly destroyed.

Lost Luggage - Because every traveler needs to know it's not what you carry with you that matters.  It's how you carry it.

Coming Out 2025 - No Matter What.

Dead or alive - it's coming.

© Raena Exe 2024
*All rights reserved.