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.

thebionicbutterfly.com 

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