Saturday, July 2, 2016

Hot and cold feet ..

*Disclaimer A*

July 2nd, 2016

I woke up feeling like I laid down on a curb and got double-curb- stomped with a boot in my lower back/tailbone and then the back of my head. I couldn't feel my lower legs other than strange temperature sensations and tingling in my feet. My toes were all "hot" feeling, and they still are a bit, it's weird. I guess that's what I get for speed-ish-ly walking with my family over across to the Bay street bridge, so we could watch the fireworks in our spot, while wearing my sparkly black platform sketchers that I love. Bleh.. I shouldn't have walked so abruptly I think, but we did only just make it to the start of the Fireworks, and it was lovely. The boys were so happy. That was worth it for sure.

Nelson put some Voltaren in my lumbar and I'm making some cannabis oil for my smoothie. Ugh. I may use my muscle relaxers with a little tylenol (basically generic Robaxacet) later.. I try to have a one time a day if I must rule re pain drugs. I need more beta blockers but I do not know how I'm going to walk over to the clinic. It's only a few mins up the street, but still. Who knows, maybe I'll feel better.

Sometimes I wonder about a chair, but a motor powered one, just for when I really need it. I have my cane which helps with balance and support but there are days like this. 

With EDSers especially, the disability pension and the gov't make it such a battle to get things like the right bracing and mobility aides and it's like - you know - don't you people friggin' want ppl to be able to work, to earn their part time amount at least? Guess not. Ideally I need those back and hip braces, and a better neck collar. This way I won't wake up injured as bad as this. I did order a mesh posture collar and have plans to turn it into something via lining it with memory foam, but as for the rest I gotta get that somehow. There's never enough extra to get those things, because all of our monthly income goes out to the necessaries. 

I am planning to at least take a shot at re-launching my fundraiser and, this time, doing things a bit differently. I'm tying my music into it, so that people can really receive something tangible back. Well it'll be better I feel .. and this time I should mention it on Youtube.

I was afraid to do so before, because of all the bullying and mean accusations, which were horrible, hurtful and ignorant..For instance this chauvanistic dick in the autistic community and called himself an "advocate" (all the while spouting berating, elitist and other negative things, and bullying people in the community).. he went around in a couple groups when I tried to share last time, telling everyone I'm some 'manipulative witch, don't help her' etc.

It was really hurtful and angering, and he doesn't even know me.. but whatever. These people are abusive. My evidence is genuine and is a massive file-thick, it not only should shut them up, but if they try to bash my fundraising efforts, in the face of me being obviously disabled and ill, and it's screen shotted, they may actually be committing libel/slander. That's what I was told anyway. Enough wasting energy on that.

In between the challenges of profound and barely treated illness and front line responsibilities, this is frustratingly gradual, but I'm getting things done on here again. I want to do things right this time for gawd's sake .. and I really want to make music a priority..but it's taking awhile cause of my pace and cause I'm nervous. I'm still a bit scared I think. Cold feet. There are a few reasons but I'm yet to fully be able to identify them, let alone articulate them. *Sighs* It's hard, like swimming upstream a rapid river. I have to remember that I must not be on my own time .. 

-Rosie G. 

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