Ups and Downs

Well, lots have been going on in the world and for whatever reason, I’ve not been feeling very energetic. I have had so many ideas that I want to get done and published via TikTok and YouTube not to mention streaming and everything, but for whatever reason, I haven’t done any of it. I just haven’t been able to get into the right brain set to get it done 🙁 might be a bit of depression that I have gotten into a funk about but it also feels like I don’t have the energy to do some of it.

I don’t know what is going on, reaching out to my GP is almost useless as with the transition going on I don’t have a regular person right now, the GP that I had just gotten slightly before the pandemic started is leaving the practice and has someone taking over from her and well I won’t be seeing the replacement until next month and I can’t get into seeing anyone until this new one takes over, so I am actually feeling like I don’t matter.

She had made me feel like I did matter and that she had my back, then the pandemic struck, and like so many others’s I lost so much medical care that I don’t even know if I’ll be able to regain everything that has been lost over the past two years. I know I won’t regain the doc I had since the one taking over has nun of her experiencing the dealing end of life clients. I might not be at that point in life, but much of the treatment and stuff that was happening was similar and it was helpful to a degree for getting the treatment that I needed.

I don’t know how to feel right now, I had the fear that I would louse my GP as the pandemic progressed and I had less and less contact with her, then to get the message that she was leaving made my heart sink to see my fears come true.

Currently, I am trying to figure out what the world is going on with my Dystonia treatment. I had left a message for the neurologist who said that they were going to be putting a request into the Movement Disorders Clinic, but that was back in September of 2021 and NOTHING has yet been done. The neuro hasn’t even gotten back to me about it or the fact that they wanted me to have a few tests to rule out a few other things (like Parkinson’s).

I haven’t heard from anyone and my GP wasn’t kept in the loop. I have no bleeping clue what is going on or if I’m back at square one and being left to go another decade of this (don’t think I can’t do this another decade without help). Sighs, took me two years to see that neurologist and I know the referral for the movement disorder clinic is on average 2 years, which means 2024 might well be the earliest things might be seen (and if I’ve lost this much in just a year, how much more will be lost by then that I won’t be able to regain?)

Maybe there is another way to get into a Dystonia specialist outside of that clinic, but for that I need the Canadian Dystonia Association to give me contact info for such ppl and so far that hasn’t panned out, getting such info (though one did recommend a facility in Hamilton – freaking bleep that is blasted far to travel, I could drive it I think – but driving back I don’t know if I’d have enough spoons/energy to do so and we can’t afford to stay overnight so it just doesn’t seem like a feasible option).

The only thing right now is I am looking forwards to the Abilities Expo that is happening in May 2022, because I might to able to get answers to the wheelchair issues that I have been dealing with since the one I have been dropped off and left. Sighs, they still blasted well insist that I signed off on it being my perm chair when I did nothing of the sort. I was told it was a loner for me to try out and instead I get stuck with something that I told them I can’t lift into my vehicle which defeats the purpose of having it when I can’t use it because I can’t take it with me when I go out! I can’t even push myself in it anymore, I don’t have the arm strength to do so.

I am starting to think that I will have to figure out how to buy a custom chair for myself because there is no way that ADP will cover another chair because of the crap that the twit who stuck me with this one pulled. I am hoping that I am wrong and that maybe one of the venders will be able to help me, but I’m not counting on it (though I am dreaming it to be the case). It is amazing how people are treated, a friend of mine had gotten great treatment for her medical (same agency just different city) and I have gotten crapped on time and time again. Sighs, its almost enough to make me feel like as I said at the start – I don’t matter.

Well post more as time does allow for it, take care everyone!



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