SCARY. Response to another thread but deserves a new thread

Page 5 of 6 [ 92 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6  Next

skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

10 May 2020, 6:22 pm

Mountain Goat wrote:
skibum wrote:
Captcha won't allow me to quote again so I have to respond without quotes. Why the ___ does the site do that? It makes me crazy.

Yes. MG, It makes perfect sense. There are times when I have to relearn to walk. It can take over an hour sometimes. And yeah, being clipped in definitely has its advantages!! :D


I use toe clips when I can. I dont get on with SPD's or other clipless pedals like Look etc. I cycle at a slight angle so SPD's make my knees ache. I also forget to pull sideways in SPD's despite trying to perservere with them for a couple of years. So eventually I called it a day and refitted toe clips and straps to my bicycles. I get on with toe clips better. Finding the right size toe clips is a different matter.

I understand


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph


skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

10 May 2020, 6:30 pm

This breathing issue I am experiencing is similar to what one experiences when they are in the beginning of high altitude sickness. Can you guys relate?


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph


Mountain Goat
Veteran
Veteran

Joined: 13 May 2019
Gender: Male
Posts: 11,711

10 May 2020, 6:40 pm

skibum wrote:
This breathing issue I am experiencing is similar to what one experiences when they are in the beginning of high altitude sickness. Can you guys relate?

Uhmm. Not been in a plane, but I have flown on a few bicycles, vans and cars...

I get it where I feel like my lungs are full.. It feels like I am breathing in but not out somehow? Well. Not really. Feels like I am taking very shallow short breaths but my lungs are full? Is that anything like what you are trying to describe?



skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

10 May 2020, 6:55 pm

Mountain Goat wrote:
skibum wrote:
This breathing issue I am experiencing is similar to what one experiences when they are in the beginning of high altitude sickness. Can you guys relate?

Uhmm. Not been in a plane, but I have flown on a few bicycles, vans and cars...

I get it where I feel like my lungs are full.. It feels like I am breathing in but not out somehow? Well. Not really. Feels like I am taking very shallow short breaths but my lungs are full? Is that anything like what you are trying to describe?
planes that fly at high altitudes have pressurized cabins. You don't get altitude sickness on planes. If you want to see what an oxygen deficient environment does, watch YouTube videos on climbs like mt everest


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph


skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

10 May 2020, 7:56 pm

I am wondering if my electrolytes are off. The last time I went to the ER for this breathing thing, my potassium was just slightly low but everything else came out fine. They gave me a potassium pill and sent me off.


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph


IsabellaLinton
Veteran
Veteran

User avatar

Joined: 1 Nov 2017
Gender: Female
Posts: 41,826

10 May 2020, 7:58 pm

Have you ever had an EEG?



skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

10 May 2020, 8:32 pm

I have but not in the past few months.

I have another update. I just called the oncall again because I am wondering if I should go back to the hospital tonight. I asked the lady to read the notes that were sent about this. I ended up asking to be reinstated with my GP. What happened is that the receptionist gave me the complete wrong information about the notes and what they said. What the doctors actually said was that they asked the behavioral therapist who is involved in Autism medical research if she had any thoughts or ideas on what could be happening from a medical and neurological standpoint. I completely agree with this and I think it is very important and the right course of action. What the receptionist told me was that I was being referred to a behavioral specialist. Those are very different statements. I told the lady that I spoke to tonight to please send messages to these receptionists that it is very important to relay ACCURATE information between doctors and patients. I have even had instances when I left a message for my neurologist and the receptionist got it so wrong that my neurologist thought that I had called to give her the results of some testing. Needless to say, I was furious with that because the neurologist had never gotten back to me. When I called back and found out what happened, I was able to talk to the neurologist about what I needed to talk to her about. This passing off of erroneous information can have very serious consequences in a patient's health. I am just glad that I am vigilant enough to catch it when it happens to me. I can't even imagine the dangers that people can be put in if they don't catch stuff like this.


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph


IsabellaLinton
Veteran
Veteran

User avatar

Joined: 1 Nov 2017
Gender: Female
Posts: 41,826

10 May 2020, 8:43 pm

I'm so glad that situation is resolved and that you can keep your GP. The reception was clearly at fault. It sounds like they have a good plan for your investigative treatment protocol.

You mentioned Neurology mixups so of course I have to share, because I know you value these stories. I had a similar incident with my Neuro's receptionist a few months after my stroke. I had waited for and completed a long and very painful appointment called an EMG, where they inserted needles laterally into my forehead and left them in like sewing, to measure my nerves or something like that. It was extremely painful and I wouldn't wish it on my worst enemy. I waited another few months for the followup appointment but every time I rang them, the lady said I hadn't done the test yet. They were scheduling me to do it again in several months, but even at that they didn't have a date. I kept insisting I had already this test and the reception treated me like an idiot, insisting I hadn't. The confusion got even more frustrating / complicated but I can't remember all the details any more. They were sending me details on doing the test "for the first time". Even the EMG hospital department told me I hadn't done it yet. It was a clusterfkkk and even more screwed up than I'm describing.

I had a telephone meltdown in true Isabellean style and gave them shite. Then of course they thought I was nuts.

Then eventually they rang like none of this had happened, and said "It's time for your follow up". When I pointed out the previous mixup and said "I told you so", they didn't know what I was talking about.

I'm glad you are being vigilant with this.

If you do go to hospital, good luck. Breathe > (no pun :twisted: ). Let us know how it goes.



skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

10 May 2020, 8:49 pm

I also drank more water which seems to be really helping. But I am not convinced that I was dehydrated to the point that it could have affected me so seriously without anything else going on. I do tend to drink pretty well, sometimes more than a gallon a day. I had not been drinking a ton in the past few days but not really to the point where I should be dangerously dehydrated.

I just talked to the oncall doctor now and he said that if it gets worse to go to the ER tonight but we scheduled an appointment with the GP for Wednesday. He also apologized for past bullying in the ER. I really appreciate that.


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph


skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

10 May 2020, 8:56 pm

IsabellaLinton wrote:
I'm so glad that situation is resolved and that you can keep your GP. The reception was clearly at fault. It sounds like they have a good plan for your investigative treatment protocol.

You mentioned Neurology mixups so of course I have to share, because I know you value these stories. I had a similar incident with my Neuro's receptionist a few months after my stroke. I had waited for and completed a long and very painful appointment called an EMG, where they inserted needles laterally into my forehead and left them in like sewing, to measure my nerves or something like that. It was extremely painful and I wouldn't wish it on my worst enemy. I waited another few months for the followup appointment but every time I rang them, the lady said I hadn't done the test yet. They were scheduling me to do it again in several months, but even at that they didn't have a date. I kept insisting I had already this test and the reception treated me like an idiot, insisting I hadn't. The confusion got even more frustrating / complicated but I can't remember all the details any more. They were sending me details on doing the test "for the first time". Even the EMG hospital department told me I hadn't done it yet. It was a clusterfkkk and even more screwed up than I'm describing.

I had a telephone meltdown in true Isabellean style and gave them shite. Then of course they thought I was nuts.

Then eventually they rang like none of this had happened, and said "It's time for your follow up". When I pointed out the previous mixup and said "I told you so", they didn't know what I was talking about.

I'm glad you are being vigilant with this.

If you do go to hospital, good luck. Breathe > (no pun :twisted: ). Let us know how it goes.
Thank you so much. Yes about "breathe!" :D

OMG, I totally feel for your story and relate to it. I have had two EMGs. I know exactly what they are. It is one of the most barbaric brutal and painful tests you can have. There is no way on this green earth that you would ever not know that you had one. If you say you had it already no one could ever question that you were mistaking it for something else. I do love your stories because I always feel that I am not alone. You and I have so many similar experiences. Yeah, these receptionists can be a nightmare. Some of them are wonderful but the ones that are not could literally cost people their lives if they relay inaccurate info. I will keep you posted on how all of this turns out.

And I am very fair. I will never be upset at someone if they are doing right. I now understood that my doctor was not the problem so I immediately corrected my response. I hate when the wrong people get blamed for things. It's hard enough when things happen, the people who mess up need to take responsibility. And I know that we are all human and mistakes happen but some of these things are really a nightmare.


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph


Karamazov
Veteran
Veteran

User avatar

Joined: 2 Mar 2012
Age: 38
Gender: Male
Posts: 3,979
Location: Rural England

11 May 2020, 2:31 am

Well, I left this thread open in my browser to cue me to respond last night: and a lot more discussion has occurred since then! 8)

Off Topic
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

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.

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.

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.

Altitude sickness? I’ll make a note to look into that and report back! :D

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.
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.

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.

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.



Meistersinger
Veteran
Veteran

User avatar

Joined: 10 May 2012
Gender: Male
Posts: 3,700
Location: Beautiful(?) West Manchester Township PA

11 May 2020, 7:20 am

skibum wrote:
Karamazov
I have also been told that sometimes I snore extremely loudly but not always. Ii sometimes wake up suddenly but not gasping but because my throat feels so parched that it hurts. But I also clench my jaw tightly. I think I suck my tongue as well. I used to grind my teeth but I became very conscious of that and wanted to stop so I started chewing my tongue in my sleep as well.

I also sometimes stop breathing when I concentrate as well. I think I stop for a lit longer than normal people stiop when they concentrate though.


Yeah, I also snore. The only people that snores louder than me were Mom, Dad, a rough collie and a Shetland sheepdog we owned. The collie and the sheltie snored so loudly that they could wake the dead! :D

As for forgetting to breathe, I had that experience while in grad school. I was commuting from York to Shippensburg twice a week at the time. I had gotten ill while I was in class. I got as far as West York, and ended up staying the night at my brothers. He and his ex noticed several times during the night that I would stop breathing. Never got diagnosed until about 6 years ago with OSA. Now, dealing with Lincare regarding supplies...



skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

11 May 2020, 9:36 am

Meistersinger wrote:
skibum wrote:
Karamazov
I have also been told that sometimes I snore extremely loudly but not always. Ii sometimes wake up suddenly but not gasping but because my throat feels so parched that it hurts. But I also clench my jaw tightly. I think I suck my tongue as well. I used to grind my teeth but I became very conscious of that and wanted to stop so I started chewing my tongue in my sleep as well.

I also sometimes stop breathing when I concentrate as well. I think I stop for a lit longer than normal people stiop when they concentrate though.


Yeah, I also snore. The only people that snores louder than me were Mom, Dad, a rough collie and a Shetland sheepdog we owned. The collie and the sheltie snored so loudly that they could wake the dead! :D

As for forgetting to breathe, I had that experience while in grad school. I was commuting from York to Shippensburg twice a week at the time. I had gotten ill while I was in class. I got as far as West York, and ended up staying the night at my brothers. He and his ex noticed several times during the night that I would stop breathing. Never got diagnosed until about 6 years ago with OSA. Now, dealing with Lincare regarding supplies...
That is really funny about the dogs! It is also interesting that even though they are two different breeds, their faces have similar bone construction and maybe that is a component to their snoring. I am so glad you eventually got diagnosed even though it took so long. What is OSA?


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph


skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

11 May 2020, 9:40 am

I upped my water intake yesterday and this morning and it seems to be helping a lot. I don't feel the altitude sickness feelings as strongly. So it seems like hydration plays a real role in this. But I still want to have my electrolytes checked since even though I am fully hydrated, I still have some of the symptoms pretty noticeably. I will let you guys know how my doctor's appointment goes on Wednesday. If anyone else has similar symptoms please share. The more we know how this affects us, the better because it will help in figuring this all out. Thank you all for your input. Hopefully what we find out will help all of us.


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph


skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

11 May 2020, 10:01 am

Karamazov wrote:
Well, I left this thread open in my browser to cue me to respond last night: and a lot more discussion has occurred since then! 8)

Off Topic
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
Quote:
Super cool!! Let me know if you like the sound fragments and what random scales you are using. Sounds like fun!!


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.
Quote:
That is actually a really good way to describe it.


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.
Quote:
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.


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.
Quote:
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.


Altitude sickness? I’ll make a note to look into that and report back! :D
Quote:
I am noticing that hydration is really helping.


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. [/quote]

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.
Quote:
That is crazy. She needs to be in a different profession.


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.
Quote:
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.


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.[/quote]
Quote:
That's crazy.


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph


skibum
Veteran
Veteran

User avatar

Joined: 18 Jul 2013
Age: 54
Gender: Female
Posts: 7,300
Location: my own little world

11 May 2020, 10:11 am

I went back and reformatted my last response to get all the quotes boxes right but captcha won't allow me to submit that edit. I think it's attacking me personally.


_________________
"I'm bad and that's good. I'll never be good and that's not bad. There's no one I'd rather be than me."

Wreck It Ralph