Wednesday, September 24, 2014

Entry 13: Rolling Along

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Entry 13: Rolling Along

Sept. 2. 2012

So, I haven’t had much to say yet, about the "crusade" to remiss FM on my "getting a hold of fibromyalgia" blog, in which I started a good couple months back. Oh grief. Well. Just a sloppy update:

I am better than I was at least, in the way of immune strength. I haven't quite won my disability case, as my first application got rejected. I need to be more secure in order to have more to work with and therefore help myself to the full extent. I live with these health issues in which drag me down every day, as well as being a person with autism.

It was a stressful summer, unfortunately. I love summer and it sucks when things put a damper on it. This included moving into a new place and having to push myself to get it done, with minimal help (and on the day before move day, I got the disability rejection letter in the mail.)

I've not written much, about the topic of feeling unwell, and my struggles within that, specifically. It’s hard to talk about when it comes to how I personally live it day by day/ I often go mute on really bad days of feeling unwell. I often have no words for it, though sometimes when I can scrounge them up, it’s worth journaling about it, so I can get it out.

I do intend to share what I’m learning when the time is right, and I have recently learned something new about the causes of fibromyalgia. I did get back on supplements and stabilize from the immune crash I was in. I’ve finally cleared myself of the infection issues and the ensuing affects of those too. Still struggling with general FM symptoms on a daily basis, though. The pain can be wrenching, and there’s joint pain too. It’s deep in my bones and joints. I don’t even think that part is fibro. Who knows.

Sometimes, it's hard to not just want to dope up on an opiate painkiller and run away from the reality of my wounded and sick-feeling body. Sorry to sound intense, but that’s how it often feels…quite icky. Doping up and feeling “floatie” instead seems appealing, but I know that won't solve anything and will only make me sicker.

If anyone knows what the word "Malaise"'s the best description I can think of, in terms of how I feel to either more severe or lesser degrees, on a chronic basis. Lately too, I’ve been getting symptoms like irregular heartbeats, chest pains, and shortness of breath (especially before bed) which is very unnerving and makes me wonder “is it more than just fibromyalgia.” I keep going back to the question of lupus, but I didn’t say I know for sure if that’s it. Maybe fibromyalgia syndrome is just nasty, and autoimmune in itself.

The tests do suck, though, and once again, autoimmune disorders (whichever one) take forever to show up and fully develop/ in some people. Of course, the doctors don't understand how one can feel disease in the earlier stages, but many sensitive people do... only to be unfairly classified as hypochondriacs; merely neurotic worry warts. It’s continual injustice to many of course...very sad for humankind that we've come to this.

We need to resurrect the shamanic medicine men/women of the past! It's not us who are sick, I say, it's this non-preventative system. But rather than letting it get me down, or get upset over what financial limitations prevent me from doing about it, I gotta remember that my spirit is strong, and to feel my spirit, To let it run me on my feet, with the help of the universes' energies. Well, Here is what I've written on my FB wall today, a little rant-styled, please pardon it. I've had a hell of a time in the past while here. Trying to keep it together...and I know I can.

Part 2:

Pushing myself to get through. I know it'll get better in the future, somehow. My body is in the state it's in at this time, and my mind is the way it is. It’s autistic in the positive of fluid and visual thinking, but with the negative challenges of that as well; sensory integration difficulties, overload, having to try extra hard compared to other adults my age, to follow through with day to day life, but I try hard. My spirit is strong and unbroken. It guides me when I’m fogged out.

I’ve been reading about this genetic defect of Mitochondria linked to degenerative fibromyalgia symptoms.... sounds very interesting. I'll believe it, because my gut says, "wow, that’s likely an aspect" as I read.

I'm often operating in a part of my brain where creativity/intuition meets science.  Some people call that pseudoscience, but I don’t think it’s always fair. That's why things like metaphysics and homeopathic medicine make sense to me, even if my logic tries to argue.

Now, I’m looking into some supplements and foods that might enhance/recover the strength of cells, as well as a plant based stem cell supplement. It looks interesting. When I get extra money on the latter, though. I’ve got to wait until I win the appeal on my DB case.

Ugh! No comment, other to say that I now have autism advocacy backing me, which finally protects me after all this time. At least when I got rejected from helps, allies were there to write letters and make phone calls.

Now the disability people are saying, "oh we're sorry. We didn’t have the right information." Huh? My application was as clear as day, and very thorough. They just don't want to get bad press for discriminating against a person with autism. That's why I fought so hard for that truthful "label.” I was drowning and getting sh**kicked without it.

Being precociously bright in certain ways, and seeing through things, but paradoxically challenged with blind spots and lack of formal education, and what they think are just character defects, isn’t an “attractive” thing to them. Not any of it.

It doesn’t bring much sympathy I guess, though perhaps pity and being looked down upon. That’s’ not what I care for though, it can feel pretty insulting. I don’t think they truly get it, overall.

Well again, I don’t know if it's a lack of understanding or if they're simply in denial whilst accepting precedents written for the benefit of protecting old systems in which retain profit for themselves. There’s always this dense change resistance.

So, have to wait now. I want to shift my supplements and take things a step up. I want to do more with the kids. Cost for everything is killer when there’s so little to work with.

- 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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