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. 

One year, and two months

*Disclaimer A*

Written (on FB) June 23rd, 2016,

This is a bit personal but I feel like sharing what I started journalling here: I hid that last "memory" photo of me when I was still well enough to cope in ways harsh to my body, and mask my illness. Because you know, I thought about it - I may have put myself together well but I was overwhelmed and in massive pain that night, and I didn't cope in ways good for me. Why celebrate it.

Today is my 14 month anniversary of something huge for me. One year, and two months. Huge :') On my one year April 23rd 2016, I was afraid to share about it, because it's not like I was ever that open about it in the first place. But anyways, today is my 14 month anniversary of being not 85% but 100% completely free of using alcohol for any reason, or even thinking of it as a last resort way out, in spite of the risks. My "divorce" with alcohol, which was a "come to me there there" kind of dysfunctional and toxic relationship for years, is finalized. I accept myself today as a non-drinker for life. I have been around drinking a few times, in the past 14 months when I had the spoons to "hang out" that is - and I've laughed and joked with everyone, even poured them drinks. For once I had no feeling like I'm missing something. I don't have words for how good that feels!

14 months ago I decided that under no circumstances would I ever resort to that "desperate go to" again, and that I would have to accept myself once and for all as someone who is a non drinker and is very allergic to alcohol, so it's simply not an option, because the risks it brings (to my dysautonomia especially) are just way too great. In the past, before I knew about dysautonomia, I have cheated death before and been lucky. But any time it could be that I won't come back next time. It's never worth that risk, because my life means more to me than an easy way out for a few hours.

Before April 2015 I had been only occasionally resorting to it before, though I was scared and wary (for good reason) - but still there were occasions when I felt distraught and folded, albeit "padding my fall" with gatorade drinks and such. I was very ashamed of this, even though it was only occasional (especially after my major autonomic episode in the UK, fall 2014.)

In April 2015 I had major breakdown, because I couldn't keep taking the way the health system here was treating me and making a pathology of me when I'm sick. So it caused me to resort, hard, and nearly got me killed, because I'm way too sick to do that. My POTS got so severe in the midst of it, and at that point my best friend Tanja (Mary) watched over me and probably saved my life by administering electrolytes and water to me repeatedly, and then I had to stay at my dad's for a week so that I could (appropriately) be by myself at that time. But this will never happen again. It's etched in my mind and spirit how close I was to being lost to this world, and how alcohol will never again be an option in my life.

Sadly that event was what made the medical system and genetics see how much they'd broken me, and that the evidence was there, and they needed to stop denying me because it was cruel and they could be held responsible for the ultimate (my dad picked up the phone and told them they needed to stop and they'd broken me down.)

But I don't need to dwell on the past now... I'm awesome now, and I still look good now, as I am, mobility aides and whatever! In spite of major challenges, I've overcome and am still battling and overcoming a lot every day. Even though I'm still really challenged, I'm gradually learning about how to manage all this, and live with new limits, I've managed to get back to some routines; I'm back to cooking for my family sometimes again, doing our groceries, keeping on top of things around the house, spending time with my kids AND quietly (but surely and excitingly) getting this project of getting rid of a bunch of stuff and launching the best of/newer stuff fronted by music this time! My new single will be released this summer!

I might not be as spritely looking as I was, more "battle scarred" whether that be visible or invisible or vague (depending on the day.) But I'm still ok, and I'm good that way I am, silly, dorky, and all. Mobility aides and trouble with mobility in general, for some reason, often makes me feel unsexy, and somehow exacerbate the feelings I still carry about being that chubby faced, bucked tooth, odd-gaited, clumsy and messy kid who was weaker than other kids and couldn't even catch a ball, who had intense fixations and odd but advanced speech (ie. with clear and obvious enough Aspergers!) I was the one in the class who was the "weirdo", "freako" and the "R" word as they put it - I even grew to hate my first name because of how it's be pronounced (in a condescending tone.) But, I'm trying to shake all this. I'm trying to integrate that kid I grew to hate, but am trying to love, with the woman I am today and now, because she's still very much part of me too. Actually she's come out more than ever the past few years because I don't have the energy anymore, to hide her. So I have to get to like her. I have to be Ok with me as I really am!

As for EDS, it is a doozy when when we say we're warriors we mean it! It's systemic nature, compared to things like MS and Lupus. Our pain is compared to bone cancer. Dysautonomia/POTS is compared to COPD and congestive heart failure. So hellz yeah I am a warrior and I'm not finished with things - but easy does it too. I'm going "in my own time" and finding my way to realizing my dreams in a way that'll leave something good for my family and finish what I feel I'm here for, but there's no deadline, or even specifics, because my higher power has a plan. I've been working hard to keep my core self emotionally sober and spiritually health enough to be in touch with this. If I remain to some degree in touch with this, even if I'm having a bad day or moment, it'll be ok and I'll be able to get back on track sooner.

I'm ok the way I am. Things will be ok 'cause they're going in their own time, even if it seems really challenging and at times downright awful. I'm going to stop trying to control the pace I'm going, but rather just believe in my general goal. I'm going to shoosh the feelings and thoughts of being too much of an idiot and somehow "not being a good enough of a person to deserve things, express things in the way that's true to me, and state my needs and boundaries" and move in the way I can toward things, in this moment, stopping and pausing when I need to.

-Rosie G.