SCARY. Response to another thread but deserves a new thread

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Meistersinger
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11 May 2020, 10:49 am

skibum wrote:
What is OSA?


Obstructive Sleep Apnea



Karamazov
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11 May 2020, 11:38 am

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skibum wrote:
Karamazov wrote:
Nice to be told me talking about music is inspiring for someone else, think it is to me too: I’m currently wanting to have a longish session of messing around on a random scale and noting down any interesting sounding fragments that occur. :D
Super cool!! Let me know if you like the sound fragments and what random scales you are using. Sounds like fun!!
After about an hours messing around with no particular agenda I’ve got five little fragments that could become melody-seeds in E Phrygian Dominant, E Minor, D Lydian, D Minor and A Minor. :D


skibum wrote:
Karamazov wrote:
The “both knowing and not knowing” experience is one I know well: I’ve adapted the cliche to help explain it to other people and say “It’s on the tip of my mind”, bit of a mangled phrase but it seems to help clarify.
That is actually a really good way to describe it.
Karamazov wrote:
I haven’t had the experience of being quizzed by a nurse whilst my mind needs rest to reassemble, but I have had people mistaking inability to cope with any more verbal input as unwillingness to listen to them: which leads to being shouted at whilst my brain feels like it’s turning to mushy half-cured concrete.
Yes. I know what you mean. I sometimes make such erroneous assumptions about other people as well but I have noticed a disturbing pattern with that. If I make an erroneous assumption and the person corrects it, I immediately apologize and take them at their word and change my perspective and response to the correct response. But if an nt makes a such erroneous assumption about me and I tell them that they are mistaken, they insist that they are right and argue with me about it and then blame me for the argument and punish me for their assumption. Now not every single nt on the planet does this, I actually know three that don't and I love them for not doing that, but most nts that I know will do that and it makes it very difficult to have real communication with them.
I think it’s because their intuitive empathy assumes another NT on the other end, gives them faulty information when interacting with us if they’re not making a conscious effort to overrule it: which I suppose must be hard work for them, because it’s unusual for them to have to deal with a divergent mind.
skibum wrote:
Karamazov wrote:
Can’t recall ever forgetting what my legs are doing out of nowhere: but I am quite good at stepping with the side of my foot to the ground, and then having to exert conscious control over balance rectification to not break my ankle. That’s more of a general co-ordination issue though.

I had a bike with a motorcycle-style gear changing mechanism when I was a kid, because I couldn’t change gears and pedal simultaneously without getting into a dis-coordinated tangle and falling off.
I also have issues with walking. I find that it is more tedious and less subconscious for me than it is for other people and I tend to be much slower in every skill that involves motor skills than other people. Even at Special Olympics I tend to be on the slower side. I was at Special Olympics golf a couple of years ago and the coach who was helping me complained to me. She told me that she loved my attitude and my desire to learn but that I was really frustrating to work with because I was too damned slow when walking through the golf course. I had to explain to her that even though I appear high functioning, the reason I am a Special Olympics athlete in the first place is that I am disabled just like every other Special Olympics athlete. After that incident they had all use golf carts. But I have had many people complain about how slowly I walk or ride a bike or do anything. Even when I am literally going as fast as I can in a race, I am still very slow. I think a lot of us have similar motor skills issues and I think part of it is that we don't do things at as much as a subconscious level as nts. So the effort for us is greater even in things that are involuntary. Of course I am not a scientist or a doctor but that is my theory.
Could be, there certainly are many things that I do slower than most other people I know: although walking isn’t one of them, I have an optimum pace speed which I’ve been told is punishingly fast! I get tangled coordination and arrhythmic steps when I slow down to what I’m told is a normal speed.
skibum wrote:
Karamazov wrote:
Altitude sickness? I’ll make a note to look into that and report back! :D
I am noticing that hydration is really helping.
Yes: I watched a few YouTubes on the subject by trekkers/mountaineers and “stop what you’re doing and rehydrate immediately” was emphasised by all of them.
I do get sudden fluctuations in my heart rate: but I’ve never noticed it as being connected to my breathing.
skibum wrote:
Karamazov wrote:
Never had an EEG, or any neurological test for that matter.
Have had some, in retrospect, strange experiences with medical bods though.

It took them a decade (age 8 to 18) to interpret what I was describing and realise I had a dodgy appendix: by the time it was diagnosed they had to rush me to theatre instantly ahead of the queue to get it out before it burst and became peritonitis.

Mine came out emergently as well when I was 23. At first I thought it was malaria because I had just recently been to Haiti and had not taken all the malaria prevention medication. When I went to the ER I told the doctor to check for malaria. He left me in the room and never came back. So I went home and refused to pay the bill. Two days later I was in the ER having my appendix removed. They caught it right before it burst.
Mine too! They normally put them in jars in this country and allow you to keep them (or at least they did twenty~ years ago), but mine was too big for the jar: the surgeon made a point of telling me it was the biggest unburst one he’d seen in his career.
skibum wrote:
Karamazov wrote:
I was referred to a therapist by my GP aged (16?) for depression brought on by failure to fit in socially at school or relate to my siblings, but her focus was entirely on my relationship with my father: apparently everything was the result of him being “cold and distant”.

She just took my feelings of alienation as I expressed them, then shovelled blame onto dad without ever checking what the context I was feeling like that in really was.
That is crazy. She needs to be in a different profession.
She was quite elderly: I think I just had the bad luck to get one of the last of the Freudians to still be practicing in a quiet rural corner of the NHS :shrug:
skibum wrote:
Karamazov wrote:
One good experience though was with a CBT guy eight years ago: he told me that since ASD was suspected and he found that suspicion justified having met me he couldn’t practice in my case since he had no relevant experience and would probably do more harm than good. I respect the honesty and humility he showed there.
I love people who can be honest. It makes me so angry when they are not. I cannot tolerate half ass or dishonest doctors and professional people.
Karamazov wrote:
The GP still managed to lose my referral for assessment/diagnosis though, and then say it was my fault because I failed to attend a group therapy session I never got the letter for in the first place.
That's crazy.

Haha! Yes, I can only think that they did send the letter, but to my old address and the estate agents were slack and didn’t forward the post.
No idea why a referral would be cancelled due to not turning up to a group session though: so maybe that was the practice head covering up one of his junior staff members making a mistake. He did restart the process in that appointment.

Whichever, I’ll just have to get on with it without having a grudge: they’re reputed to be the best GP surgery in the shire so probably in my best interest not to! :lol:

(Hope my effort to get all the quote boxes lined up correctly works!)



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11 May 2020, 12:16 pm

Meistersinger wrote:
skibum wrote:
What is OSA?


Obstructive Sleep Apnea

Ah, Thank you!


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skibum
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11 May 2020, 12:36 pm

I have to copy/paste this because captcha won't allow me to do a quote response. It might be because the quote response has become too big. But whatever the reason, it's infuriating.

... A Minor. :D[quote=Skibum] Nice!! Very cool!![/quote]

... a divergent mind [quote=Skibum] Yes. I always say this and I mean it, very few nts I have ever met have any theory of mind. All the textbooks accuse us of not having it but many of us have it in droves. We have to to constantly be accommodating the fact that they have none. [/quote]


Could be, there certainly are many things that I do slower than most other people I know: although walking isn’t one of them, I have an optimum pace speed which I’ve been told is punishingly fast! I get tangled coordination and arrhythmic steps when I slow down to what I’m told is a normal speed.

[quote=Skibum] That is funny. I can't keep up with anyone when I am walking. [/quote]

..., in retrospect, strange experiences with medical bods though.
[quote=Skibum] I get heart palpitations too but I don't think it's related to hydration even though hydration helps because it helps with everything. I have to manually bring my heart rate down every time it palpitates. I noticed that I usually get the palpitations when I am lying down. When I told this to one doctor, she said, chest pains and palpitations must just be my normal because nothing shows up on an EKG. [/quote]

It took them a decade (age 8 to 18) to interpret what I was describing and realise I had a dodgy appendix: by the time it was diagnosed they had to rush me to theatre instantly ahead of the queue to get it out before it burst and became peritonitis.[/quote]
[/quote] Mine too! They normally put them in jars in this country and allow you to keep them (or at least they did twenty~ years ago), but mine was too big for the jar: the surgeon made a point of telling me it was the biggest unburst one he’d seen in his career.

skibum wrote:

[quote=Skibum] I wasn't allowed to keep anything from any of my surgeries, not even my 1.9cm gallstone and I asked for that! They never even let me see them. I did get to see pics of my massive fibroid tumors but not of my gall stone of my appendix. I feel jipped!


No idea why a referral would be cancelled due to not turning up to a group session though: so maybe that was the practice head covering up one of his junior staff members making a mistake. He did restart the process in that appointment.

Whichever, I’ll just have to get on with it without having a grudge: they’re reputed to be the best GP surgery in the shire so probably in my best interest not to! :lol: [quote=Skibum] Sounds like a "cover up" to me! Happens all the time. :roll: [/quote]

(Hope my effort to get all the quote boxes lined up correctly works!)[/quote]

[quote=Skibum] Your quote boxes turned out well! :D [/quote]


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skibum
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11 May 2020, 12:37 pm

By the way, K, I also talk to myself out loud all the time for the same reason that you do.


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Karamazov
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11 May 2020, 2:18 pm

skibum wrote:
I have to copy/paste this because captcha won't allow me to do a quote response. It might be because the quote response has become too big. But whatever the reason, it's infuriating.

Does it take you to an error message in black text on a plain white screen? If so click the browser back button to get back to I’m not a robot, then click back again and it should take you to the text input box with your post still there. Click submit again and eight times out of ten it’ll just do it without captcha re-occurring. (I found that out by accident last week)
Off Topic
skibum wrote:
Karamazov wrote:
skibum wrote:
Karamazov wrote:
Nice to be told me talking about music is inspiring for someone else, think it is to me too: I’m currently wanting to have a longish session of messing around on a random scale and noting down any interesting sounding fragments that occur. :D
Super cool!! Let me know if you like the sound fragments and what random scales you are using. Sounds like fun!!
After about an hours messing around with no particular agenda I’ve got five little fragments that could become melody-seeds in E Phrygian Dominant, E Minor, D Lydian, D Minor and A Minor. :D
Nice!! Very cool!!
Yes, quite enjoyable: I’ll probably leave them to rest a week or two before doing any work on them: let myself get the emotional distance to assess critically :wink:

skibum wrote:
Karamazov wrote:
skibum wrote:
Karamazov wrote:
I haven’t had the experience of being quizzed by a nurse whilst my mind needs rest to reassemble, but I have had people mistaking inability to cope with any more verbal input as unwillingness to listen to them: which leads to being shouted at whilst my brain feels like it’s turning to mushy half-cured concrete.
Yes. I know what you mean. I sometimes make such erroneous assumptions about other people as well but I have noticed a disturbing pattern with that. If I make an erroneous assumption and the person corrects it, I immediately apologize and take them at their word and change my perspective and response to the correct response. But if an nt makes a such erroneous assumption about me and I tell them that they are mistaken, they insist that they are right and argue with me about it and then blame me for the argument and punish me for their assumption. Now not every single nt on the planet does this, I actually know three that don't and I love them for not doing that, but most nts that I know will do that and it makes it very difficult to have real communication with them.
I think it’s because their intuitive empathy assumes another NT on the other end, gives them faulty information when interacting with us if they’re not making a conscious effort to overrule it: which I suppose must be hard work for them, because it’s unusual for them to have to deal with a divergent mind.
Yes. I always say this and I mean it, very few nts I have ever met have any theory of mind. All the textbooks accuse us of not having it but many of us have it in droves. We have to to constantly be accommodating the fact that they have none.
Yes: I think the phrase Theory of Mind misuses the word ‘theory’. I’ve noticed that with Mrs K when talking about the problems and relationships of her friends and family, she assumes a sane NT mind that places practical logic and rational interest at the centre of analysis in other people, because that’s what she does: it takes me pointing out that they’re not operating like that for her to grasp, for instance, why her severely paranoid brother-in-law is acting the way he is.
skibum wrote:
Karamazov wrote:
skibum wrote:
Karamazov wrote:
Can’t recall ever forgetting what my legs are doing out of nowhere: but I am quite good at stepping with the side of my foot to the ground, and then having to exert conscious control over balance rectification to not break my ankle. That’s more of a general co-ordination issue though.

I had a bike with a motorcycle-style gear changing mechanism when I was a kid, because I couldn’t change gears and pedal simultaneously without getting into a dis-coordinated tangle and falling off.
I also have issues with walking. I find that it is more tedious and less subconscious for me than it is for other people and I tend to be much slower in every skill that involves motor skills than other people. Even at Special Olympics I tend to be on the slower side. I was at Special Olympics golf a couple of years ago and the coach who was helping me complained to me. She told me that she loved my attitude and my desire to learn but that I was really frustrating to work with because I was too damned slow when walking through the golf course. I had to explain to her that even though I appear high functioning, the reason I am a Special Olympics athlete in the first place is that I am disabled just like every other Special Olympics athlete. After that incident they had all use golf carts. But I have had many people complain about how slowly I walk or ride a bike or do anything. Even when I am literally going as fast as I can in a race, I am still very slow. I think a lot of us have similar motor skills issues and I think part of it is that we don't do things at as much as a subconscious level as nts. So the effort for us is greater even in things that are involuntary. Of course I am not a scientist or a doctor but that is my theory.
Could be, there certainly are many things that I do slower than most other people I know: although walking isn’t one of them, I have an optimum pace speed which I’ve been told is punishingly fast! I get tangled coordination and arrhythmic steps when I slow down to what I’m told is a normal speed.
That is funny. I can't keep up with anyone when I am walking.
’Tis funny.
I omitted to congratulate you on your athletic achievement: that is very impressive now I stop to take it in! Well done :D
skibum wrote:
Karamazov wrote:
skibum wrote:
Karamazov wrote:
Altitude sickness? I’ll make a note to look into that and report back! :D
I am noticing that hydration is really helping.
Yes: I watched a few YouTubes on the subject by trekkers/mountaineers and “stop what you’re doing and rehydrate immediately” was emphasised by all of them.
I do get sudden fluctuations in my heart rate: but I’ve never noticed it as being connected to my breathing.
I get heart palpitations too but I don't think it's related to hydration even though hydration helps because it helps with everything. I have to manually bring my heart rate down every time it palpitates. I noticed that I usually get the palpitations when I am lying down. When I told this to one doctor, she said, chest pains and palpitations must just be my normal because nothing shows up on an EKG.

I usually get them when I’m sat or lying down: I mentioned them because they came up as a symptom in the Altitude Sickness videos. I have to make a conscious effort to calm it down too: breathing very slowly and as deep as I can works for me, so maybe it is breathing related...
skibum wrote:
Karamazov wrote:
skibum wrote:
Karamazov wrote:
Never had an EEG, or any neurological test for that matter.
Have had some, in retrospect, strange experiences with medical bods though.

It took them a decade (age 8 to 18) to interpret what I was describing and realise I had a dodgy appendix: by the time it was diagnosed they had to rush me to theatre instantly ahead of the queue to get it out before it burst and became peritonitis.

Mine came out emergently as well when I was 23. At first I thought it was malaria because I had just recently been to Haiti and had not taken all the malaria prevention medication. When I went to the ER I told the doctor to check for malaria. He left me in the room and never came back. So I went home and refused to pay the bill. Two days later I was in the ER having my appendix removed. They caught it right before it burst.
Mine too! They normally put them in jars in this country and allow you to keep them (or at least they did twenty~ years ago), but mine was too big for the jar: the surgeon made a point of telling me it was the biggest unburst one he’d seen in his career.
I wasn't allowed to keep anything from any of my surgeries, not even my 1.9cm gallstone and I asked for that! They never even let me see them. I did get to see pics of my massive fibroid tumors but not of my gall stone of my appendix. I feel jipped!

Well I did too! All the other kids got to keep their appendix’s! Grrrrr :evil:
skibum wrote:
By the way, K, I also talk to myself out loud all the time for the same reason that you do.
Yep, otherwise things can go awry... I’ve just managed to put dinner on half an hour later than I should have :oops: it’ll all come out right though :D
skibum wrote:
Karamazov wrote:
(Hope my effort to get all the quote boxes lined up correctly works!)
Your quote boxes turned out well! :D

Excellent! :D
Yes, I do tend to spend quite a bit of time fiddling with the layout on some of my posts: some of the ones in PPR even have footnotes! :lol:



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13 May 2020, 1:38 pm

Thank you K!


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13 May 2020, 2:00 pm

OMG you guys!! ! I am so infuriated by this doctor's office. So I figured out that as long as I stay super hydrated, like a gallon of water a day, I can avoid the high altitude sickness symptoms but I have to stay super hydrated. Now I just have my usual breathing issues that I have all the time.

So I was supposed to have my doctor's appointment with my GP this afternoon. When I had talked to the last after hours on call doctor he told me to come into the office for the visit. So I agreed to. But yesterday, the doctor's office called me and told me that I had to put the zoom app on my phone because they did not want me to come in and they were requiring me to do not just a phone call but a video call. So I had to download zoom and then the lady from the doctor's office spent the next forty minutes walking me trough the zoom setup. I asked her why I couldn't just come in and she said no, I would not be able to and that I was required to do the zoom video call. So I was like, OK, I guess I don't have a choice.

So today I was waiting for this call and it never came. 20 minutes after my scheduled appointment time, I called the doctor's office and they told me, "You missed your appointment." I was like, "What are you talking about?" and she said, "You were supposed to come in." I told her exactly what happened and she said, "I don't know what happened." I said, "I just told you what happened." Then she said that she did not know when they would be able to reschedule. But fortunately I got a call from the doctor herself a few minutes afterwards. She apologized and rescheduled for me to be able to physically come in tomorrow. Even though the hydration is taking care of the high altitude sickness symptoms, she still wants to see if we can find a way to help with the regular breathing issues that I have so she wants to physically see me. I will let you know what happens.


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13 May 2020, 2:22 pm

^ :roll:
Right royal cock-up with denial for afters. :roll:
Still, at least you get to see the doc in person now.

Attempting to see an upside to the general shenanigans



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13 May 2020, 3:10 pm

I know right?! ! Like they think we aren't going to notice that they screwed up and are trying to blame us for their mistakes. It's infuriating as all get up. But yes, I am very grateful that this doctor stepped in and did not justify their mess.


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13 May 2020, 9:37 pm

Best of luck this time! Could you do an at-home sleep study to check for apnea? I’ve never done it like that myself, but maybe it would be easier to arrange than staying overnight at a clinic.



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14 May 2020, 6:43 pm

AnneOleson wrote:
Best of luck this time! Could you do an at-home sleep study to check for apnea? I’ve never done it like that myself, but maybe it would be easier to arrange than staying overnight at a clinic.
Thank you so much Anne. I went to the doctor today. They did blood tests. I already got the results. Everything is in normal range except one which is one point high so we will look into that if needed. She did order a two night sleep apnea test as well. It has to be one in the hospital because of the monitoring that they do. Once they start doing these nonessential things again they will do the test so hopefully it will be very soon.


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