was in the hospitals acute medical unit yesterday/monday from morning till night.
woke up in the morning experiencing severe crushing heart pain,had to sit up as lying down made it worse,took some gaviscon and it didnt work.
was very worried because am overweight and have always had a shit diet,the family has got a very big history of heart problems from heart attacks to angina and mum had a bad heart attack last year so we went to the NHS walk in centre and was pushed to the head of the cue which pissed off a lot of people,was told am tachycardiac and it needed further investigation so was made a inpatient next door in the main hospitals acute medical unit.
they said woud have to be kept in that night and was absolutely refusing that point blank and they didnt seem to take it in.
eventualy they did the blood test to see if it had been a heart attack as heart attacks show chemicals in the blood after a number of hours but because have got bad veins they had to take it from a vein over the thumb knuckle so its now a bit swolen and bruised there.
had had ECGs done and a chest x ray.
was severely anxious which showed in severe challenging behavior, had used up a lot of PRN halperidol and diazepam and then had just decided had had enough of people saying it wont be long until we have got the results and can go,so had just jumped into the wheelchair and wheeled self out,was told by the nurses because of mental capacity am not able to self discharge and had to wait for a consultant to do it,and if end up leaving the hospital they woud have no choice but to call the police as they can legaly force self to come back.
the two support staff with self told them that woud be the biggest mistake possible to get police involved because of PTSD caused by them and instead was persuaded to just wait outside accident and emergency instead-absolutely cannot tolerate being in a hospital ever since was locked away in one for four bloody months!
earlier on had been given two medications for severe acid reflux and severe heart burn,which removed the pain.
eventualy the blood test came back and they said it had had an error so they didnt know what was in the blood,but they said because had had a positive reaction to the medications it was most likely a severe flare up of acid reflux and heart burn,and they didnt want to cause more problems by having to do a blood test again.
was told if experience severe heart pain again to go back again though because of family history and to not feel like a time waster.
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Tuesday, 15 July 2014
Tuesday, 27 May 2014
epilepsy; its serious business
have gone two days without having a tonic clonic epileptic seizure,it seems the worst might be over.
have been suffering with severe epileptic cluster seizures for two weeks and have been in hospital multiple times,one time had had a trachea tube put down throat,and another bad time;attached to an IV and on every monitor going in resus [the intensive care of emergency medicine] due to suffering from quite severe tachy cardia after the seizures and not having come around due to having so many of them.
the heat seems to be a major trigger for them,and am not sure if they are directly causing them-which mum and dad seem to think because they saw it happen when was a toddler, or if the heat is causing stress and the stress is causing the seizures.
luckily the weather has changed from heat waves to colder weather,its a common difficulty for people with autism to control their body temperature but that hasnt been looked at as doctors in that area of medicine arent disability specialists.
have been increasingly suffering with the seizures ever since had had epilepsy medication halved to just over one thousand mg whilst was detained in greenways intelectual disability hospital,though doctors didnt have this in their notes,used to be on the maximum possible doseage of tegretol.
have been refered to the neurologist again,but if they request yet another bloody EEG am never having another one as far as live,last time had had one to see whether severe challenging behavior was being caused by the epilepsy [it wasnt] they had to keep using a special knife to cut off the super glued on electrodes then reaplying them several times a day for three days because had had so many challenging behaviors due to being put in a different environment and in a different routine, the neurologist said it was the worst damage he has ever seen to a scalp,still have a patch on head now which hair wont grow through.
have been suffering with severe epileptic cluster seizures for two weeks and have been in hospital multiple times,one time had had a trachea tube put down throat,and another bad time;attached to an IV and on every monitor going in resus [the intensive care of emergency medicine] due to suffering from quite severe tachy cardia after the seizures and not having come around due to having so many of them.
the heat seems to be a major trigger for them,and am not sure if they are directly causing them-which mum and dad seem to think because they saw it happen when was a toddler, or if the heat is causing stress and the stress is causing the seizures.
luckily the weather has changed from heat waves to colder weather,its a common difficulty for people with autism to control their body temperature but that hasnt been looked at as doctors in that area of medicine arent disability specialists.
have been increasingly suffering with the seizures ever since had had epilepsy medication halved to just over one thousand mg whilst was detained in greenways intelectual disability hospital,though doctors didnt have this in their notes,used to be on the maximum possible doseage of tegretol.
have been refered to the neurologist again,but if they request yet another bloody EEG am never having another one as far as live,last time had had one to see whether severe challenging behavior was being caused by the epilepsy [it wasnt] they had to keep using a special knife to cut off the super glued on electrodes then reaplying them several times a day for three days because had had so many challenging behaviors due to being put in a different environment and in a different routine, the neurologist said it was the worst damage he has ever seen to a scalp,still have a patch on head now which hair wont grow through.
Friday, 2 May 2014
accessing a hospital with autism & intelectual disability
was in hospital two days ago to have two teeth out and fillings done,as someone who has severe challenging behaviors from autism & ID [have mentioned this many times on the blog and elsewhere but ID is diagnosed as LD in the UK and what the US calls LD is what the UK calls learning difficulties,confusing eh?] am given all dental treatment under general anaesthetic.
have been stressed about this for months but especialy recently as have got big physical medical issues at the moment including the highly painful and not pain controled lumbar spinal injury, any dental work triggers the trigeminal neuralgia which is a severe facial nerve condition that is also known as the suicide disease because of how painful it is so have got a bloody big right to be worried.
the trafford ID team and the special needs dentist of mine had been preparing this for a while, regulary visiting to explain with symbols and easy read information,discussing what will happen and the path we will take into the hospital and was put first on the operation list because of the level of behaviors that result from waiting.
the day finaly came and we finaly drove to the hospital,but the the driver of the two support staff hadnt a clue how to get into the back entrance of the hospital so we ended up the wrong way down a one way street and some old woman in a car waving her fists at the staff.
was given a private side room,and allowed to wear own clothes instead of the hospital clothing because of sensory and change issues.
the anaesthetist came in for a visit to say hi-she is a specialist in anaesthetising people with ID,and it turned out already knew her from past visits in the years gone by.
then one certain CSW madam from the trafford ID team came in to support as well,and was really greatful she was there to help calm and stop self from kicking off as was getting very bad with all the waiting,so yeah-thanks L,am really greatful for rushing to get to the hospital.
eventualy we went down and they kept the environment as calm as possible and the nurses and everyone was really nice,was given the canula and IV fluids hooked up,then the general anaesthetic to-can remember ending up fighting and being partly pinned down to stop from pulling at arm when the GA went in because it felt like a shock up arm,then woke up in recovery with that familiar disgusting taste in mouth,the madam;L was there.
it was extremely painful and was given sixty mg of codeine,am greatful they understood,am fed up of people not taking any pain of mine seriously enough because am not able to communicate pain or physicaly show pain.
was then allowed to take the rest of the morning medication;had been made to take most medications of mine at six am that day,but now was finaly able to take the naproxen which also helped with the pain.
had quickly recovered and was desperate to get out of there due to anxiety,coudnt wait for the dentist to finish the next patient so was allowed to be discharged,they said will want to go to bed when get home but just spent the day doing gardening on a raised flower box and watching dad put the rabbit run and connector pipe together before collapsing on the sofa in front of series four of breaking bad.
the day surgery team rule, pity all the hospital staff cant be like that, which is why canot wait to help train on severe autism and ID them soon.
heres some photos of just waking up in recovery,and one taken just as we got home;
have been stressed about this for months but especialy recently as have got big physical medical issues at the moment including the highly painful and not pain controled lumbar spinal injury, any dental work triggers the trigeminal neuralgia which is a severe facial nerve condition that is also known as the suicide disease because of how painful it is so have got a bloody big right to be worried.
the trafford ID team and the special needs dentist of mine had been preparing this for a while, regulary visiting to explain with symbols and easy read information,discussing what will happen and the path we will take into the hospital and was put first on the operation list because of the level of behaviors that result from waiting.
the day finaly came and we finaly drove to the hospital,but the the driver of the two support staff hadnt a clue how to get into the back entrance of the hospital so we ended up the wrong way down a one way street and some old woman in a car waving her fists at the staff.
was given a private side room,and allowed to wear own clothes instead of the hospital clothing because of sensory and change issues.
the anaesthetist came in for a visit to say hi-she is a specialist in anaesthetising people with ID,and it turned out already knew her from past visits in the years gone by.
then one certain CSW madam from the trafford ID team came in to support as well,and was really greatful she was there to help calm and stop self from kicking off as was getting very bad with all the waiting,so yeah-thanks L,am really greatful for rushing to get to the hospital.
eventualy we went down and they kept the environment as calm as possible and the nurses and everyone was really nice,was given the canula and IV fluids hooked up,then the general anaesthetic to-can remember ending up fighting and being partly pinned down to stop from pulling at arm when the GA went in because it felt like a shock up arm,then woke up in recovery with that familiar disgusting taste in mouth,the madam;L was there.
it was extremely painful and was given sixty mg of codeine,am greatful they understood,am fed up of people not taking any pain of mine seriously enough because am not able to communicate pain or physicaly show pain.
was then allowed to take the rest of the morning medication;had been made to take most medications of mine at six am that day,but now was finaly able to take the naproxen which also helped with the pain.
had quickly recovered and was desperate to get out of there due to anxiety,coudnt wait for the dentist to finish the next patient so was allowed to be discharged,they said will want to go to bed when get home but just spent the day doing gardening on a raised flower box and watching dad put the rabbit run and connector pipe together before collapsing on the sofa in front of series four of breaking bad.
the day surgery team rule, pity all the hospital staff cant be like that, which is why canot wait to help train on severe autism and ID them soon.
heres some photos of just waking up in recovery,and one taken just as we got home;
Saturday, 12 April 2014
UK learning disability awareness week
for UK learning disability [US definition=intelectual disability] week this year,am going to be going to an NHS hospital and training the hospital staff on intelectual disability,some are genuinely awesome and dont need training to understand us but the majority need a lot of training in many areas and who better to give them real world experience than those of us with it?
am going to be going along with the trafford ID team and a friend of mine/a fellow service user of the team, funnily enough-well it isnt funny actualy as will be in a lot of pain--am going to be in exactly the same hospital on exactly the same day early on, am having the usual general anaesthetic/day surgery treatment on teeth,getting them sorted out plus three of the little bastards have to be removed [theyre putting in special falsies at another date when gums have recovered-the falsies will be custom made to be epileptic and head banging safe,mum always did tell doctors at a young age they shoud have just whipped them out then-hers were all removed at twenty one,mine were damaged by severe dental fluorosis;caused by a brutal lifelong obsession with eating toothpaste ever since they tried washing ems teeth as a baby/toddler].
so am going to be teaching a load of medical people about ID [and hopefuly autism] on the job as well as dozing along to the conference
am going to be bringing up issues with nurses about how they communicate to us- they need to be talking to us not around us,and if they need to talk to our support staff/family/carers they shoud apologise to us and say we arent being ignored.
they need to have PECS books of adult friendly symbols available in every ward,not just accident and emergency, and even then not all staff know of it.
they need to be trained in makaton;none of them are.
they need to recognise we have a different understanding of pain,and just because we cant explain it well or show it well it doesnt mean we cant be greatly suffering.
they need to understand that severe challenging behavior is not an attempt at making the nurses lives difficult,its a form of communication from very desperate individuals who cannot express it in any other way.
am very looking forward to doing it as have got some MAJOR issues with that hospital.
am going to be going along with the trafford ID team and a friend of mine/a fellow service user of the team, funnily enough-well it isnt funny actualy as will be in a lot of pain--am going to be in exactly the same hospital on exactly the same day early on, am having the usual general anaesthetic/day surgery treatment on teeth,getting them sorted out plus three of the little bastards have to be removed [theyre putting in special falsies at another date when gums have recovered-the falsies will be custom made to be epileptic and head banging safe,mum always did tell doctors at a young age they shoud have just whipped them out then-hers were all removed at twenty one,mine were damaged by severe dental fluorosis;caused by a brutal lifelong obsession with eating toothpaste ever since they tried washing ems teeth as a baby/toddler].
so am going to be teaching a load of medical people about ID [and hopefuly autism] on the job as well as dozing along to the conference
am going to be bringing up issues with nurses about how they communicate to us- they need to be talking to us not around us,and if they need to talk to our support staff/family/carers they shoud apologise to us and say we arent being ignored.
they need to have PECS books of adult friendly symbols available in every ward,not just accident and emergency, and even then not all staff know of it.
they need to be trained in makaton;none of them are.
they need to recognise we have a different understanding of pain,and just because we cant explain it well or show it well it doesnt mean we cant be greatly suffering.
they need to understand that severe challenging behavior is not an attempt at making the nurses lives difficult,its a form of communication from very desperate individuals who cannot express it in any other way.
am very looking forward to doing it as have got some MAJOR issues with that hospital.
Sunday, 25 August 2013
hospital; the aftermath
am still getting constant spasms and regularv epileptic seizures from the whole fucked unauthorised complete codeine withdrawal,thankfuly after being back on codeine since wensday the diorreah has finaly stopped but am still feeling sick a lot, am very very weak and have to have support with picking simple things up,like a nearly empty bag of chicken feed which is very light because the weight is spread out.
arms and hands are especialy weak because in the past few weeks have had a ton of needles and canulas shoved in them-a ton of them also were failed attempts because they were trying to jam the needles into muscle instead of the vein,ems veins suck.
am feeling very very let down by the medical industry,apart from a nurse in wythenshawe hospital who prescribed oramorph when she realised was really suffering,the doctor in trafford general accident and emergencythe last consultant we saw who were able to look at it from all areas which is what a best interest decision is supposed to be about,and..NHS direct with the doctor who prescribed the anti emetic.
being honest,am feeling a huge amount of hate for the medical world,and those am known by know it takes a fucklot for em to hold grudges.
this is saturday night and unlike every other weekend am now sat at home [residential,not parents] because of the consequences of this guys fuck up and have been told by the social services safe guarding team am never going to be allowed to stay at parents house again.
it puts a lot of blame on them when have personaly only ever saw this as ems fault no one elses.
am on lorazepam at the moment to cope with being here this weekend, and have just taken the anti emetic +classic/typical anti pyschotic drug; prochlorperazine maleate [buccal version,which means dont have to swallow it and risk puking it up] so it will help with the sickness and head crap am feeling right now in terms of being here during a different decade long routine.
all of this has caused the mental health side of em to break up again,the voice has been encouraging homicidal and suicidal acts which had been in the middle of following through but was lucky that did not have the mental or physical strength to carry them out.
am definitely going to be looking into legal action but have been told it may possibly be difficult getting this taken seriously because am classed under the learning disability [aka intelectual disability,aka limited mental capacity] spectrum and require best interest decisions.
am also going to be giving own opinion on everything that happened in the hospital from an autism and LD view to the PALS team, and also hope to offer them training on how to best accomodate us in hospitals.
arms and hands are especialy weak because in the past few weeks have had a ton of needles and canulas shoved in them-a ton of them also were failed attempts because they were trying to jam the needles into muscle instead of the vein,ems veins suck.
am feeling very very let down by the medical industry,apart from a nurse in wythenshawe hospital who prescribed oramorph when she realised was really suffering,the doctor in trafford general accident and emergencythe last consultant we saw who were able to look at it from all areas which is what a best interest decision is supposed to be about,and..NHS direct with the doctor who prescribed the anti emetic.
being honest,am feeling a huge amount of hate for the medical world,and those am known by know it takes a fucklot for em to hold grudges.
this is saturday night and unlike every other weekend am now sat at home [residential,not parents] because of the consequences of this guys fuck up and have been told by the social services safe guarding team am never going to be allowed to stay at parents house again.
it puts a lot of blame on them when have personaly only ever saw this as ems fault no one elses.
am on lorazepam at the moment to cope with being here this weekend, and have just taken the anti emetic +classic/typical anti pyschotic drug; prochlorperazine maleate [buccal version,which means dont have to swallow it and risk puking it up] so it will help with the sickness and head crap am feeling right now in terms of being here during a different decade long routine.
all of this has caused the mental health side of em to break up again,the voice has been encouraging homicidal and suicidal acts which had been in the middle of following through but was lucky that did not have the mental or physical strength to carry them out.
am definitely going to be looking into legal action but have been told it may possibly be difficult getting this taken seriously because am classed under the learning disability [aka intelectual disability,aka limited mental capacity] spectrum and require best interest decisions.
am also going to be giving own opinion on everything that happened in the hospital from an autism and LD view to the PALS team, and also hope to offer them training on how to best accomodate us in hospitals.
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