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.

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