Medical and my Life

Well, another day more pain and less feeling like I can manage things as they currently are going, unfortunately.

I don’t know what to think right now, I feel like I am drowning in my ability to keep our apartment clean and organized. I feel like we keep falling further and further behind in keeping it maintained and clean.

There is so much that I feel that I need to be able to do, such as putting things away, doing the laundry, dishwashing, etc. Take this Sunday past (yesterday) I tried for the entire day to do some cleaning and organizing around the apartment. I don’t even feel like a made much of a dent into the organizing of things much less the cleaning in general.

I have been told to just so spots and just work on those areas, time and time again – yet I have done that, and guess what that one spot never seems to be cleared up or cleaned up because I keep refilling it after I’ve done a little work on it because I get tired and can’t progress so I just put things back where they were and it starts over again.

At least the laundry did get done, though granted Norman had to do it for me because I couldn’t unload the washing into the Dryer or unload the Dryer so had to have him work to do it for me. But I did fold and put away what was brought into the bedroom so that is saying something at least. I have also unloaded and loaded the dishwasher so that again is something, it just doesn’t feel like it is enough of anything because of how much still needs to be done around the apartment itself in general.

When does it feel like it is enough, and when does it feel like I am not behind in doing what needs to be done? When will I feel like I am able to maintain things instead of feeling like I’m failing and falling further and further behind?

Now add in the higher level of pain that I am now in, that I can’t seem to lower and I’m feeling rather miserable and uncomfortable, to say the least. My lower back is screaming at me that something is wrong, my knees are saying that I shouldn’t have been standing so much and my neck feels like it doesn’t want to support my head – yet laying down isn’t a good option because the pain feels just as bad if not worse when I’m laying down right now that its a toss-up as to which is really the better idea to do.

Sighs, I don’t know what to think or do right now I really don’t – well post more as time does allow for it, take care, everyone!

Video Media and Posting

As many might have noticed I haven’t been doing my regular posting of live streams to my YouTube channel nor have I been doing my daily live streams not even once a week like I had started to try to do, and almost never mind the weekly TikToks that I had started to try to do.

Well the truth of the matter is I just haven’t been feeling it, as my energy levels seem to have tanked and when I try to start to set up a stream to stream I feel like I don’t have it in me to actually do the stream, yet I am able to play my game for several hours yet trying to get my brain to talk or even converse with any of my friends is almost too much for me to do and still play the game at hand – which has been most frustrating, to say the least.

It's not to say that I have always been able to play for hours, there are times when I have been playing and a few minutes after I start playing I have to stop because a Dystonic episode happens and just wipes out what energy I had in reserves or after the episode, I’m just not in the mood to play still that or my pain level goes up making it hard to play comfortably so I have to stop and do something else (like read, watch tv or even actually sleep).

TikTok is its own deal, I have been trying to work on my own series that I would like to get off the ground on it, but I am having my own issues learning the software to do the transitions between charters (it all seems so easy when I see others doing it, yet when I try to do it it is anything but smooth going). So right now the series that I’ve been working on is in a holding pattern as I figure out how to get it filmed properly.

This also means that I’m struggling to just even make basic TikToks because I feel so unmotivated to post anything, big time when I see my mate’s steadily rising numbers when all they post is their VRChat stuff (so ya I am a little jealous of their success but also happy for them at the same time) it makes me feel like I shouldn’t even bother trying to gain a following because I’m not good enough to do so type feeling (which is wrong thinking, but right now hard to shake).

On the upside of things I do finally have another green screen to do streaming with, I just don’t have the setup to hang it up with at the moment so that’s a little bit of its own issue – one that I am hoping we will be able to rectify in short order (since they also would like to do green screen – the set up would be workable for both of us once built/created).

I’m also still working on trying to find a good solution to my laptop issue I finally got the backrest that has proven to be helpful – though it isn’t as helpful as I had hoped as its a little small but it does a decent job in general that I’m not complaining about it. Though I still haven’t fixed my main computer issue, I keep forgetting that I really need to talk to a certain person and see about getting my set up updated – but like a lot of things some things just don’t seem as necessary as other’s when I look at it in terms of what I am doing.

Well, hope everyone is doing well post more as time does allow for it, take care!

 - originally posted to my main blog - YouTube, TikTok, n Twitch | Nyxks Musings (nyxstium.info)

Update on my Health

Well, it has been a while since I last really posted, never mind did an actual video blog (have recorded a couple but not edited or posted them sadly), I keep thinking I need to post, and yet getting around to doing so seems to be so blasted hard to do.

Been feeling a little down for the past little while, big time since I had to have two teeth extracted and found out that I still had an infection in my mouth something like 3 weeks later needing to have an emergency extraction because another tooth broke and come to find out at the base of it the infection was still raging, so ended up losing that tooth also.

I don’t know if the infection has cleared or not as yet, I’ve done three-course of antibiotics so I am hoping that when I see the periodontist Tuesday that the infection is gone and that there are no further issues, but I fear that will not be the case, sadly.

My next appointment is scheduled to be one that will explore to see if I have any cavities, and well I know I do – it will be a minor miracle if I don’t have any. But I hope and pray that I am clear but know how unlikely that is to be. But there is always hope.

Outside of that, saw the new GP who took over from my old one and I am NOT pleased with her at all. I feel let down and left behind not to mention medically gaslighted by her. She pretty much dismissed my level of pain and discomfort not to mention that I actually need pain medication, her answer is Advil and Tylenol are all that is necessary to control the pain. What a bleeping joke, she has no freaking clue what type of pain Dystonia and Porphyra cause never mind Osteoarthritis and Disk Degeneration.

I have read time and time again the dismissal people have posted online about their own doc and I was counting my blessings that I had a doc who listened and treated me, but now I am in the same state as them and I am like them questioning my own existence.

I feel very much let down by my previous medical provider, I feel she failed me. I know she likely went through hockey sticks during the pandemic and being a palliative care doctor likely was even harder on her than being a general GP so I don’t blame her for needing to move on and away – but I still feel like she could have found a better doctor to take over her practice (then again it is very much possible that she was scrapping the bottom of the barrel to even find a physician looking to take on a private practice vs going into a clinic setting.

So feeling like I have been virtually dismissed bu her words, I am going to be trying my best to fill the gap and get what I need to be done regardless of is she likes it or not and if it means finding another who will take me seriously and is a better fit then so be it, some doctors do not deserve to have a serious private when they don’t listen to those who actually live with conditions that are outside of their experience.

Sighs, like many, know finding a doctor who can treat one’s condition or conditions isn’t easy big time when it is a condition that has very few treating specialists in the field who can treat it. That is what I am facing trying to get into seeing the needed specialists when getting a referral to them is going to be an upwards battle as when I asked to see a movement disorders specialist or the local clinic (which requires a referral) I was refused, she said that my existing specialist needed to do the referral – funny thing is I only have my endocrinologist and no other specialist treating me and my endocrinologist said he can’t refer me to such because it is outside of his area and that my GP needed to be the one to do it (anyone for a circle that just goes round and round and round?)

Also to add to the insult the fee’s that we had been told would be waived, well it’s no longer the case. Every script refill done won’t happen without paying for the script to be written, every note/document that is needed by disability will be charged at 20.00 per page, and in short, there is no medical care that I will get outside of basic OHIP covered stuff from this new GP unless I can pay the fees for it to happen, so no more 30 min appointments just 5 to 10 minutes max (as ohip doesn’t cover more then 10 min apparently) no more then 1 question asked at each appointment so it means NEVER getting proper care because we can’t afford the travel back and forth and she won’t approve medical transport which disability demands she approve if they are to cover it, so there is no bleeping way I can get my appointments covered when she won’t freaking well agree to do so.

Sighs, so yes there is a lot that has happened and is happening that thanks to the pandemic should never have come into place – I shouldn’t have lost the medical support system that I had started to rely on, that or I should never have let myself develop the reliance (but I felt that I had finally found a doc I could trust and who had my back, and as I said now I feel like I have been betrayed).

Well, hope everyone is doing decent and will post more as time does allow for it to happen, take care till then!

Video Games I'm Currently Playing

Well, I have been playing various games, and well guess it is time to either make a regular post about what games I am officially playing that I am going to stream also or at least what games I am playing that might have the potential to be streamed, not sure which it is right now but here goes nothing…

XBOX
Minecraft (Bedrock – Beta Edition)
Farm Together
Sims 4
Cities Skyline (Mayors Edition)
Two Point Hospital (Deluxe Edition)
TT Isle of Man
TT Isle of Man 2
Fishing Planet

WINDOWS
Cities Skylines
Farming World
Fallout Shelter
Big Farm Story
Two Point Hospital
The Sims 4
Software Inc.

MAC
The Sims 4
The Sims 3

OCULUS (can’t stream from)
Beat Saber

ANDROID
Idle Miner
Merge Farm
EverMerge
Fallout Shelter

SWITCH (will not stream from)
Farm Together