Sunday, November 27, 2016

Open your eyes - for Zebras

Most of the EDS community is suffering so badly. Very badly. I'm hearing what I initially hoped and prayed is nothing but a bad dream, but it's not a bad dream. It's real. I don't know if I want to say what I'm hearing. People are losing their battles. What I feared most, what I was told by so many "couldn't be.. oh no it couldn't be." No.. it is. It is happening.
The reasons for such suffering are geographical and financial, especially the latter. But - the underlying reason for the former is systemic violence and greed. The "Scroogey" medical systems can't financially sustain us, and so it's like they passively want us to croak, because they don't know what else to do. No. No. No. Find a better solution, ASAP.
The Cystic Fibrosis community had the same problem 30-15 years ago, and it has stabilized and gotten better to a large extent, thanks to the grassroots efforts of loving family and friends, and some brave ones sick themselves advocating from bed. Before then, the financial situation of the CFers family was the thing that primarily dictated their lifespan and quality of life while here. It's similar with EDS in this way.
It's the hardest thing of all, to be the injured advocating against injuries. I have to try and save my own life but not without making it loud and clear that I am not the only one who needs saving. It's heart wrenching, the amount of suffering of innocent people, and their families, who happen to be hit with this horrible disease.
What I'm hearing gives me goosebumps, makes me quiver, and gnaws at my heart. The USA isn't a magical place to get help obviously. It's a place where most EDSers are suffering tremendously, just as they are all over the world, other than a few lucky ones who have been able to get to the doctors, who have been able to pay or whatever. This isn't to put them down. Anger and resentment helps nothing.
But it should not be this way. Overall, we are drowning..drowning in the consequences of severe inequality and greed. The more severely affected are losing their lives, and even those who won't lose their lives are suffering in several ways, especially if autistic/neurodivergent too (many zebras are autistic/neurodivergent and vice versa.) We need the world to stop denying the truth, and take a stand for us.
However, most of them don't, and instead, they catch the "Be abusive and/or neglectful to zebras" mind-virus that seems to be as contagious as the common winter cold, as well as the "blatantly deny Ehlers-danlos exists and is a serious illness" bug that runs as rampant as a stomach flu passed around a holiday banquet....
Come on people, think for yourselves!
Even our own families sometimes abandon us.. pathologize us when we're gravely ill right in front of them, by walking away so they don't have to see the truth, and then proceeding to make "up their own version" of what the truth must be. Which of course is just insulting bunk. This is called cognitive dissonance, folks.
.. Yeah many of them buy into the denial..and break our hearts..betray us .. just what a sick and scared and suffering person needs, right? They are part of the problem.
Those who stand by us, help us, stand up for us or with us; they are preciously invaluable, and thank you so very much to those people who see and think for themselves, and with their hearts, for their zebra friends/family members. Bless you. Truly.
But all people. Family, friends, bystanders even. All people: Get out of denial and stand with the zebras. We need your help. Don't turn your back. Have the courage to turn around, and open your eyes.

Rosie G. 

Saturday, November 19, 2016

Help to quell the raging scars

My intuition tells me that it's not just EDS. But it never is for people, I don't think. It's mild to moderate EDS with co-morbids that have over time accumulated bad damage; loads of osteoarthritic, tissue and immune damage, especially of my spinal column (including thoracic - thoracic is a big issue, maybe tethered chord) and some kind of autoimmune/infection stuff. I hope it's not mito. Maybe even if it is, it's reactive to dysfunctional scar tissue.
Maybe it's just very bad wear and tear taking a heavy toll on my nervous and immune system/s. I fight it as best as I can, but it's a hard uphill battle and there are some pieces to this that require medical intervention and those are the missing pieces weighing me down badly. I just feel that whatever is going on is diagnosable and treatable but it's been missed for WAY too long. I keep going back to lupus over and over, but lupus never shows up. That's not where the sparkplug is coming from though, I guess. It's more a functional short circuiting colliding from nervous system damage colliding with immune compromise and with my body's computers sometimes-counter-helpful defense mechanisms. I don't know what I'm saying I'm seeing in pictures as per usual -
This I think is the exact predicament of the average EDSer... it's the co-morbids running alongside, and then colliding right into the EDS that make us so sick. Some of us more so than others. I cannot deny that my situation *must* relate to all the trauma I went through. In my case, I had such immense multi trauma exposures. I don't know if it would have been this bad. I may have to say too, that child bearing placed a lot of stress on my body, as much as I love my boys to the end of the world.
But it's those co-morbids which badly need addressing and treatment, and if they get this somewhere, somehow - some quality of life can be restored. The problem is that most doctors don't understand how EDS and it's co-morbids react and interact together. They don't even understand *what* the co-morbids are or why. This is the fundamental flaw that causes such extreme neglect of the systemic nature of this thing, and how to best address it, to rehabilitatively soothe, calm, treat, mend and then redirect this angry battered body which was so soft and delicate to start, and yet took far too much wind, rain, snow and ice out there in the trenches.
This is my predicament. I need to get to the people who can help me mend it (using a multi-disciplinary approach) enough to lessen the scars, to turn back the clock (realistically at this point about halfway) before the layers of infected scar tissue consume me and cause me a slow and painful trip down a spiral, probably with the end result being a grave. I believe it can be turned around. It's partly up to me yes, but I cannot do this just on my own anymore. I am exhausted but also, logistically, I cannot produce all the resources myself. I can produce some, and I have, and I can keep doing it - but I need to be met halfway. I need help to quell the raging scars

Rosie G. 

Wednesday, November 2, 2016

Journal: Not done.

There is nothing harder than being a highly sensitive empathic autistic woman with PTSD and sensory processing disorder, and (currently) severe complex rare illness. I don't know what the Cosmos want from me but this test is massive. It is unreal. I hope I pass this test, and change into something else that isn't afraid and hurting, and find peace and freedom, and reach the point where I can say "Ok, I'm finished, I can go now." I have a feeling at this point it that I will never be an old lady.
I could be wrong and surprise myself, but I don't think it's happening. That doesn't matter to me as much as giving me like, 10, 20, maybe 30 more years. Somehow. I have so many regrets, stupid ways I went about things as a Mezz Joan of Arc riding out there, reckless things, trying to over-control it and "frankenstein" as my wiser, much older than me autistic peer support worker told me before (accidentally hurt myself trying to "strategize.")
I didn't know I had EDS, and when I first did I was not grasping all of what that meant, as well as whatever other systemic pathology which feels yet to be discovered, is underlying. That last part really scares me. There is something/s being missed somehow, we need to find it. My hospital internist admitted it. He thinks somethings' still being missed, something he thought "might be something unusual but treatable" but as a self described generalist going by the usual book of internal medicine, he's at the end of his rope, although he did agree to refer me to Toronto specialists. Also, I hope these two upcoming specialists, tomorrow and next week, might have some answers. I have reasonable faith in this young clinical immunology/internal specialist especially.
But I'm feeling emotional. Which might not be bad because I do have a big problem with holding back tears because of being criticized re: the way that I cry and express my feelings (as a child like autistic empath.) Then, sometimes people accuse me of being cold, calculating and even narcissistic, and it pisses me off because they really have no idea how sensitive, loving and heartfelt I really am. I'm just try to be tough. I have to almost block my feelings to function and to not, at times, have a potential mental breakdown .but I'm letting it flow today. Just boxes of tissues. F*ck I don't care ...
I just have always had this strong sense that I'm here to do something, through putting myself out there somehow, the Cosmos made me the way that I am to be a messenger. I am not omniscient, I just feel like a steward of that work and that is sacred..people misunderstand my passion re: that. This also pisses me off, if I let it I guess.
My deepest fear is what Temple Grandin said "I don't want my thoughts to die with me, I want to have really done something" I get really upset when I feel like whatever that something is, ball park in the form of music, art, design and articulation, is threatened. and also, when I experience illness so bad I fear that I will not see my family and people I love again, or get do things (with them) that you don't realize are so precious until you are limited.
I am just not done. I don't care what kind of tubes, or metal pins, or robot limbs, snip outs, medications (that actually work), picc lines, or whatever you medical science people, if you would only truly listen and accept that I'm a zebra and learn, will have to give me. I do not want to be incomplete. I have things yet to do. I have time yet to spend. I'm not done, and I'm sorry. I'm sorry I wasn't wiser, sooner. Smart and wise are different things. I do have this wise voice, and sometimes I listen to it. When I do it's usually the thing that helps.

#chronicillness #ehlersdanlos #dysautonomia #findacure #life #love #family #bucketlist

Rosie G.