Wednesday, September 24, 2014

Entry 9: Second Battle, Here We Go –

Disclaimer A

June.14. 2011

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 again…

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; a friend said to me once before; something will turn out in the end. I have to believe it to be so...

- Rose Whitson-Guedes

*Like what you read/wish to support? Diary of A Girl Outside The Box and others (Kindle) are available to purchase via the "books" link on my site!

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