2011-2014. The original blog that got it all started. It represents reflections I had and sharing I did, during a time period in my life, freshly post autism diagnosis, worsening illness, though I wasn't yet clear on things. I was trying to process and going through a lot of hard learning. There's some good stuff in here, which helped others, and there's also some stuff that no longer reflects my situation and/or evolved insights. Please read with this in mind.
You would think that my battle would be over with finally receiving my
official Asperger’s' diagnosis this year. I had to fight hard, as a female
(with overlapping complications that’s masked.) I fought all the way to a
specialized Neuro Psychologist and childhood video footage excerpts, to prove
it. This due to the diagnostic traits being based on males, and the female
presentation being largely unknown about/misunderstood.
However, I now have to go through the same thing with my physical
illness, "Fibromyalgia" as they're calling it, in order to get
validation as well. It parallels Asperger’s in the way that is only vaguely
understood, misunderstood and not taken seriously. There is research though, and
a recent thing published by Dr. Bruce Caruthers called the Canadian Consensus.
That booklet proves it to be a systemic, progressive, and serious
"neuroendocrineimmune" (holy big word!!) illness, as opposed to
nothing but a "psychosomatic pain condition".
Despite this, the most current information has "not yet reached
most GPs or even specialist clinicians"...including the ones I deal with.
As an Aspie particularly, but also just as a human being, I agonizingly don't
appreciate my earnest truth being disbelieved, and being minimized as nothing
more than a whiner, when in fact the opposite is true. I’m just trying to be heard and acknowledged.
Yeah, despite my chronic conditions and chronic pain, I push myself. I
push myself to be an able and available wife, mother, and nutritionally
appropriate gluten/dairy free chef for the family; all on a low income and
without yet the disability application approval in which would allow me to
better afford the supplements, whole foods, and physiotherapies that are
helpful in “taming the FM beast.”
So here I am now, making more
phone calls and leaving more messages
for people who apparently do possess the current information, to be contacted
as advocates; so that I don’t fall through the cracks once again. Honestly, I'm
so tired of this. I wasn't in for another Fiery Trailblaze. I was sort of
hoping to take off my battle gear and start focusing on my music and art,
enjoying my family, all that...maybe getting a new hobby or two.
I'm so done with having to prepare a case for myself. I'm so done with
being an exasperated, uneducated, blind-spotted and misunderstood Erin Brockovich
against the world, as it seems (or the other way around?) Here we f****** go
But, as much as I may vent, my heart ultimately knows that if the universe
is putting me through this; I guess I must be strong enough. It must think so;
anyways...like a friend said to me once before; something will turn out in the
end. I have to believe it to be so...