Hear here!! to that - about the attitudes, I mean.
I'm sure it does apply to many other conditions, too - wheelchair users, asthmatics being offered peppermints when coughing and choking with asthma attack, deaf folks as butts of jokes......
And oh! how many of us having problems with contact lenses are fed up with being asked "Why don't you just wear glasses, then?"
As dor the little old ladies who couldn't tell us apart...... well, yeah, probably says more about them. [BTW H, did you ever meet Tim and Keith in the bellringers? - surprising number of people inc other bellringers get them muddled up still! And they're old enough for it to have been their 27th anniversary when they got civil partnered last summer!]
As regards KC siblings - why not start a new thread?
Seriously, will suggest to John (webmaster) we should have a category "family/partner/friend of PWK".
Rosemary
Off to post Yellow Card and make checklist for tomorrow's appointments
Good luck to Rosemary
Moderators: Anne Klepacz, John Smith, Sweet
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rosemary johnson
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rosemary johnson
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Re: Good luck to Rosemary
well! Had very interesting day at hospital today.
My new consultant is a very professional, capable and knowledgeable looking lady. Who has a lovely mellifluous (sp?) dulcet-toned contralto (or even lady first tenor???) voice. I don't know if she sings, but am sure she'd be worth listening to if she does. And I'm sure she has surgeon's fingers as well........
Saw, heard and identified her, but didn't get to talk to her myself (next time, maybe....)
Got called in by a nice young man with expressive eyebrows who introduced himself by his first name and the fact that my contact lens specialist had been telling him all about me!!!!!!!
From his approach, a character reference he could cope with.
Very prepared to understand I'd been having a lousy time, and that and that getting over the bad experience was part of the overall success of the graft not only matters in the eyeball itself.
Hooray!
Says they are quite likely to leave the stitch in permanently.
At the time, immediate reaction of immense relief! - yes, I know people on here have often explained the process isn't all that bad. But to me, it is not the process, but the number of times - and the vividness and violence - I was hallucinating slashing the stitch out with my Swiss army knife (or variations on that theme).
Like, getting it done really would be like walking back into a waking nightmare.
Now not so sure....... becaue it is THAT MAN's stitch! Permanently ..????
Time will tell. WOuld be a couple of years or so, anyway (I asked for warning, so I'm have time to get, well, yeah, psyched up).
The eye itself seems to be fine ..... though very sensitive to having bright lights shone at it by slit lamps, and sore this evening.
Can read top three letters on Snellen chart through pinhole, none at all without, multiple ghost images very apparent. Reading paper at about 5" suggests its about a -10 correction. Get impression that my description of illuminated pine cones (looking at street lamps) familiar and not a bother.
Said in wistful (?) tones at one point "If you have any suggestions as to what it is I should say to any of your professional colleagues in future, if I'm brought in to them after a road accident for example, to make sure nothing like this ever happens again, I'd be VERY glad to hear it."
To which his immediate reaction was: "Has anyone talked to you about making an appointment to talk to an anaesthetist about that?"
Nearly fell through the floor in shock at this - at rapidity and ease of emergence of this suggestion. Since previous person there to say anyting to me about idea I might ask any anaesthetist any such question was Certain Former Consultant telling me to get off the premises before he called Security and had me thrown out bodily!
What a difference a few..... somethings...... makes.
UPshot of this, after a bit of discussion, is that he's going to write to that nice guy who was sitting on the floor holding my hand in the first hour of the hallucinations, and see if he is able and willing, or if not one of his colleagues, to talk through my hypotheses.
Being a fly on the wall when the poor guy opens that particular letter would no doubt be very, errm, interesting, shall we say. We shall see (or not).
Also had a sensible conversation about hypersensitivity issue. I get impression this will at last be dealt with, though will let grafted eye settle down a bit more (likely to be extra-sensitive after the op, anyway).
COme back next month, keep taking the drops......
Very interesting day. Much better impression of medical profession. Much more hopeful. Well, we live i hope, and all that.
Contact lens expert giving every impression of champing of proverbial bit, itching for when he can fit new lens to grafted eye. Have warned him in view of recent history (!) may be more likely to burst into tears on his shoulder than tell him how much I can read. at least we've known each other long enough for him to know that, if I do, then a pint will do me far more good than a shrink!
Rosemary
My new consultant is a very professional, capable and knowledgeable looking lady. Who has a lovely mellifluous (sp?) dulcet-toned contralto (or even lady first tenor???) voice. I don't know if she sings, but am sure she'd be worth listening to if she does. And I'm sure she has surgeon's fingers as well........
Saw, heard and identified her, but didn't get to talk to her myself (next time, maybe....)
Got called in by a nice young man with expressive eyebrows who introduced himself by his first name and the fact that my contact lens specialist had been telling him all about me!!!!!!!
From his approach, a character reference he could cope with.
Very prepared to understand I'd been having a lousy time, and that and that getting over the bad experience was part of the overall success of the graft not only matters in the eyeball itself.
Hooray!
Says they are quite likely to leave the stitch in permanently.
At the time, immediate reaction of immense relief! - yes, I know people on here have often explained the process isn't all that bad. But to me, it is not the process, but the number of times - and the vividness and violence - I was hallucinating slashing the stitch out with my Swiss army knife (or variations on that theme).
Like, getting it done really would be like walking back into a waking nightmare.
Now not so sure....... becaue it is THAT MAN's stitch! Permanently ..????
Time will tell. WOuld be a couple of years or so, anyway (I asked for warning, so I'm have time to get, well, yeah, psyched up).
The eye itself seems to be fine ..... though very sensitive to having bright lights shone at it by slit lamps, and sore this evening.
Can read top three letters on Snellen chart through pinhole, none at all without, multiple ghost images very apparent. Reading paper at about 5" suggests its about a -10 correction. Get impression that my description of illuminated pine cones (looking at street lamps) familiar and not a bother.
Said in wistful (?) tones at one point "If you have any suggestions as to what it is I should say to any of your professional colleagues in future, if I'm brought in to them after a road accident for example, to make sure nothing like this ever happens again, I'd be VERY glad to hear it."
To which his immediate reaction was: "Has anyone talked to you about making an appointment to talk to an anaesthetist about that?"
Nearly fell through the floor in shock at this - at rapidity and ease of emergence of this suggestion. Since previous person there to say anyting to me about idea I might ask any anaesthetist any such question was Certain Former Consultant telling me to get off the premises before he called Security and had me thrown out bodily!
What a difference a few..... somethings...... makes.
UPshot of this, after a bit of discussion, is that he's going to write to that nice guy who was sitting on the floor holding my hand in the first hour of the hallucinations, and see if he is able and willing, or if not one of his colleagues, to talk through my hypotheses.
Being a fly on the wall when the poor guy opens that particular letter would no doubt be very, errm, interesting, shall we say. We shall see (or not).
Also had a sensible conversation about hypersensitivity issue. I get impression this will at last be dealt with, though will let grafted eye settle down a bit more (likely to be extra-sensitive after the op, anyway).
COme back next month, keep taking the drops......
Very interesting day. Much better impression of medical profession. Much more hopeful. Well, we live i hope, and all that.
Contact lens expert giving every impression of champing of proverbial bit, itching for when he can fit new lens to grafted eye. Have warned him in view of recent history (!) may be more likely to burst into tears on his shoulder than tell him how much I can read. at least we've known each other long enough for him to know that, if I do, then a pint will do me far more good than a shrink!
Rosemary
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rosemary johnson
- Champion
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- Keratoconus: Yes, I have KC
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Re: Good luck to Rosemary
Well. Went to Plumpton races today (and narrowly avoided freezing).
vision in grafted eye comes up fairly nice and sharp through 10x50 binoculars when looking at Big Screen or 2 mile 1 furlong/3 mile 2 furlong start (to right of stands) and first fence. Just about in focus at 2mile hurdles start. 2 and a half mile start, near railway station, too far away from binocs to be able to compensate for short-sightedness.
"illuminated pine cones" from looking at street lights, car headlamps, etc now more in the shape of right hand side half of ace of hearts rather than (portrait mode) oval.
If I point the binocs out of my front room window after dark and try to focus them on street lamps (or white semi-flood lights at car sales place over the crossroads frommy flat) the lights come up nice and sharp and well-defined, but eye gets very sore very quickly trying to look at them.
Light the sharper vision is just concentrating the light sensitivity and hence the pain.
If that goes on - bummer!
Feeling very dry, sore and itchy, like something (bit of stitch??) was catching on eyelid on way home.
Very glad to get back and have Nice Cup of Tea. Best medecine going for many ills.
Errrm.... . except for my typing, clearly.
Rosemary
vision in grafted eye comes up fairly nice and sharp through 10x50 binoculars when looking at Big Screen or 2 mile 1 furlong/3 mile 2 furlong start (to right of stands) and first fence. Just about in focus at 2mile hurdles start. 2 and a half mile start, near railway station, too far away from binocs to be able to compensate for short-sightedness.
"illuminated pine cones" from looking at street lights, car headlamps, etc now more in the shape of right hand side half of ace of hearts rather than (portrait mode) oval.
If I point the binocs out of my front room window after dark and try to focus them on street lamps (or white semi-flood lights at car sales place over the crossroads frommy flat) the lights come up nice and sharp and well-defined, but eye gets very sore very quickly trying to look at them.
Light the sharper vision is just concentrating the light sensitivity and hence the pain.
If that goes on - bummer!
Feeling very dry, sore and itchy, like something (bit of stitch??) was catching on eyelid on way home.
Very glad to get back and have Nice Cup of Tea. Best medecine going for many ills.
Errrm.... . except for my typing, clearly.
Rosemary
-
Hilary Johnson
- Contributor
- Posts: 48
- Joined: Fri 07 Mar 2008 9:57 am
- Keratoconus: No, I don't suffer from KC
- Vision: I don't have KC
- Location: Yorkshire
Re: Good luck to Rosemary
Hi R
I'm still reading this - really glad to hear so much good news - you must have done whatever the right thing was to convince them of your sensibleness.
I won't comment on your typing! After lal, whoseys mines' prefect?
Not surprised you got sore eyes after looking at a street-light through binoculars - I would have thought that was pushing your luck a bit. Don't ever look at the sun like that, will you...! (I know you're not that daft really.)
Leaving the stitch in permanently - sounds a bit odd, but sounds like there's plenty of time before anyone needs to decide.
H
I'm still reading this - really glad to hear so much good news - you must have done whatever the right thing was to convince them of your sensibleness.
I won't comment on your typing! After lal, whoseys mines' prefect?
Not surprised you got sore eyes after looking at a street-light through binoculars - I would have thought that was pushing your luck a bit. Don't ever look at the sun like that, will you...! (I know you're not that daft really.)
Leaving the stitch in permanently - sounds a bit odd, but sounds like there's plenty of time before anyone needs to decide.
H
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rosemary johnson
- Champion
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- Keratoconus: Yes, I have KC
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- Location: East London, UK
Re: Good luck to Rosemary
Well!
The good news:
1. I've got back on Duke! Danny came out with me, and we walked round the block on the side streets round a local housing estate.
Felt definitely a bit shakey at times - like when walking quite steeply downhill down a track past the park - but managed to get back without getting to the state of feeling I couldn't cope at all, or being overcome with dizziness, or wanting to get off and sit and cry.
Definitely not back to my "former glory" but then, it has been 9 weeks (since the day I fell off him).
Duke much more keen to get going and walking much faster than last few times I'd ridden him - keen to get on with it now his foot infection has cleared up and not starting to bother him, no doubt
Also very keen to walk along stretching his back with his nose down near his ankles - very good for him, no doubt, but rather disconcerting, especially on the road with traffic coming up behind, where he might start to shy at vehicles overtaking, and throw his head up and leave me reeling in feet of slack rein again.
Long way to go yet, but very relieved to survive the first step.
2. Recently-rescued Shetland pony mare is apparently "bagging up" - that is, developing an udder ready to suckle a new-born. (Mares don't have noticeable udders all the time, unless they have had LOTSS of foals - they develop as required, and shrink again once the foal is weaned.) SO we could have a new arrival on the way.
Bad news:
After the recent weather, the field/stables are becoming a quagmire again, Duke's stable keeps flloding int he night, and first job today was to shovel loadsa irretrievably soggy woodshavings outs. Yuk.
Am going to be SOOOOOOOO STIFF!!!! in the morning.
Have also done something to my shoulder - probably either getting out more sacks of wood shavings, or ossibly lugging a 12-pack of Guinness out there.
Ho hum!
Appointment with neurologist tomorrow - wish me luck!
Rosemary
The good news:
1. I've got back on Duke! Danny came out with me, and we walked round the block on the side streets round a local housing estate.
Felt definitely a bit shakey at times - like when walking quite steeply downhill down a track past the park - but managed to get back without getting to the state of feeling I couldn't cope at all, or being overcome with dizziness, or wanting to get off and sit and cry.
Definitely not back to my "former glory" but then, it has been 9 weeks (since the day I fell off him).
Duke much more keen to get going and walking much faster than last few times I'd ridden him - keen to get on with it now his foot infection has cleared up and not starting to bother him, no doubt
Also very keen to walk along stretching his back with his nose down near his ankles - very good for him, no doubt, but rather disconcerting, especially on the road with traffic coming up behind, where he might start to shy at vehicles overtaking, and throw his head up and leave me reeling in feet of slack rein again.
Long way to go yet, but very relieved to survive the first step.
2. Recently-rescued Shetland pony mare is apparently "bagging up" - that is, developing an udder ready to suckle a new-born. (Mares don't have noticeable udders all the time, unless they have had LOTSS of foals - they develop as required, and shrink again once the foal is weaned.) SO we could have a new arrival on the way.
Bad news:
After the recent weather, the field/stables are becoming a quagmire again, Duke's stable keeps flloding int he night, and first job today was to shovel loadsa irretrievably soggy woodshavings outs. Yuk.
Am going to be SOOOOOOOO STIFF!!!! in the morning.
Have also done something to my shoulder - probably either getting out more sacks of wood shavings, or ossibly lugging a 12-pack of Guinness out there.
Ho hum!
Appointment with neurologist tomorrow - wish me luck!
Rosemary
-
Andrew MacLean
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- Keratoconus: Yes, I have KC
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- Location: Scotland
Re: Good luck to Rosemary
rosemary johnson wrote:Well!
The good news:
1. I've got back on Duke! Danny came out with me, and we walked round the block on the side streets round a local housing estate.
Felt definitely a bit shakey at times - like when walking quite steeply downhill down a track past the park - but managed to get back without getting to the state of feeling I couldn't cope at all, or being overcome with dizziness, or wanting to get off and sit and cry.
Definitely not back to my "former glory" but then, it has been 9 weeks (since the day I fell off him).
Duke much more keen to get going and walking much faster than last few times I'd ridden him - keen to get on with it now his foot infection has cleared up and not starting to bother him, no doubt
Also very keen to walk along stretching his back with his nose down near his ankles - very good for him, no doubt, but rather disconcerting, especially on the road with traffic coming up behind, where he might start to shy at vehicles overtaking, and throw his head up and leave me reeling in feet of slack rein again.
Long way to go yet, but very relieved to survive the first step.
Well done, a hurdle crossed!
2. Recently-rescued Shetland pony mare is apparently "bagging up" - that is, developing an udder ready to suckle a new-born. (Mares don't have noticeable udders all the time, unless they have had LOTSS of foals - they develop as required, and shrink again once the foal is weaned.) SO we could have a new arrival on the way.
That sounds wonderful! Was she pregnant at the time of the rescue, or has this happened more recently?
Bad news:
After the recent weather, the field/stables are becoming a quagmire again, Duke's stable keeps flloding int he night, and first job today was to shovel loadsa irretrievably soggy woodshavings outs. Yuk.
Am going to be SOOOOOOOO STIFF!!!! in the morning.
Have also done something to my shoulder - probably either getting out more sacks of wood shavings, or ossibly lugging a 12-pack of Guinness out there.
Ho hum!
Appointment with neurologist tomorrow - wish me luck!
Rosemary
The surface water really has not had time to drain away this winter. Still the good news about your bad news is that it isn't KC related!
Andrew
Andrew MacLean
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rosemary johnson
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Re: Good luck to Rosemary
Hi Andrew,
Rescued Shetland pony mare came to us early in the new year, so she'd have been pregnant long before being abondoned beside the motorway. Gestation period for horses is 11 months.
It is thought she is (quite a few) more months pregnant than the foal who was abondoned with her is old. In other words, that isn't her foal, and she isn't the foal's mum.
Makes you wonder about who on earth would abandon the two of them on a main road verge, doesn't it?
Back on topic:
Neurologist doesn't know what the problem is either - calls it a "functional" disorder, which basically means something isn't functioning as it should, but they don't know quite what or why or how it happened.
Seems to think the op effects will wear off back to former, ie. post-accident at work levels of damaged-ness, eventually. Though how he can tell that given the above, I'm not at all clear!
Did various tests of whether I could feel, see, push/pull etc and so far as I could tell thought the messages were getting through I haven't noticed any problems wthere (other than having had no binocular vision for decades, making touching one held-up finger very difficult) - it's something(s) inside my brain aren't processing the input as they should be.
Going to write to GP with details of test results and suggestions of where to seek out better coping strategies of how ot live without properly-functioning "motion sense processing" function, etc.
NO further forward, really - very frustrating.
Neurologist trying to be reassuring - am anything but reassured!
Functions in questions still not back to pre-op levels - and lack of ability to deal with unexpected motion sensations highlighted very much by slithering about in the mud in Duke's field, and sinking up to mid-calf level in the boggy bits, particularly when trying to carry horse feed bowls or water buckets, bales of hay, sacks of wood savings (bedding) or lug out whellbarrow loads of mucking out. Where the stables have flooded again and there are great mounds of soggy wood shavings to clear out...... yuk!
Meanwhile ....
just got back from Kempton races, via delayed and diverted-round engineering works train service. Grafted eye feeling very itchy, like it can't wait to get a contact lens out of it. HOpe it's just being out in the open air and got a bit dry. Do hope I'm not going to be in A&E tomorrow!!!!!!! - got some work to do tomorrow, earn some money for once.
Pattern of double-images changing all the time, still very light sensitive, still can't see stitch....
Rosemary
Rescued Shetland pony mare came to us early in the new year, so she'd have been pregnant long before being abondoned beside the motorway. Gestation period for horses is 11 months.
It is thought she is (quite a few) more months pregnant than the foal who was abondoned with her is old. In other words, that isn't her foal, and she isn't the foal's mum.
Makes you wonder about who on earth would abandon the two of them on a main road verge, doesn't it?
Back on topic:
Neurologist doesn't know what the problem is either - calls it a "functional" disorder, which basically means something isn't functioning as it should, but they don't know quite what or why or how it happened.
Seems to think the op effects will wear off back to former, ie. post-accident at work levels of damaged-ness, eventually. Though how he can tell that given the above, I'm not at all clear!
Did various tests of whether I could feel, see, push/pull etc and so far as I could tell thought the messages were getting through I haven't noticed any problems wthere (other than having had no binocular vision for decades, making touching one held-up finger very difficult) - it's something(s) inside my brain aren't processing the input as they should be.
Going to write to GP with details of test results and suggestions of where to seek out better coping strategies of how ot live without properly-functioning "motion sense processing" function, etc.
NO further forward, really - very frustrating.
Neurologist trying to be reassuring - am anything but reassured!
Functions in questions still not back to pre-op levels - and lack of ability to deal with unexpected motion sensations highlighted very much by slithering about in the mud in Duke's field, and sinking up to mid-calf level in the boggy bits, particularly when trying to carry horse feed bowls or water buckets, bales of hay, sacks of wood savings (bedding) or lug out whellbarrow loads of mucking out. Where the stables have flooded again and there are great mounds of soggy wood shavings to clear out...... yuk!
Meanwhile ....
just got back from Kempton races, via delayed and diverted-round engineering works train service. Grafted eye feeling very itchy, like it can't wait to get a contact lens out of it. HOpe it's just being out in the open air and got a bit dry. Do hope I'm not going to be in A&E tomorrow!!!!!!! - got some work to do tomorrow, earn some money for once.
Pattern of double-images changing all the time, still very light sensitive, still can't see stitch....
Rosemary
-
rosemary johnson
- Champion
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- Keratoconus: Yes, I have KC
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Re: Good luck to Rosemary
Oh dear!!
Just when I was hoping things were looking up.... and I was getting back in the saddle again......
Had a phone call from Duke's owner, to say the farrier has been, fitted his special shoe I think, but has cut away quite a bit of his hoof where the infection was, so he can't be ridden for a few weeks.
So, no more riding for a while.
At least, not on Duke. ANd I don't want to try riding a strange horse with balance still very wonky and confidence very shakey.
Hope at least that this means the remaining "bad bits" of hoof are now all gone and what's left is healthy, so it will be better for him in the long run.
Haven't yet heard anything yet from neurologist (who's supposed to be sending me letter(s)), nor from eye hospital about prospect of talking to an anaesthetist about How TO Make Sure That Never Happens Again. Surprise????
Meanwhile, I have had a letter saying my tax rebate is on the way! - which has to be some sort of good news!! Not that I'm going to be moving to a palatial mansion with chauffeur-driven Rolls ROyce on 126 quid.
And the chiropractor has re-tested everything and reckons I'm making good progress - also has to be good news.
Grafted eye still has periods of feeling dry, sore and "can't wait to get this bloody lens out", though not yet been to A&E again. The other eye is looking horribly red and bloodshot, from having a lens in every day which it isn't used to.
WIsh I could get good night's sleep - so tired all the time. Have a nasty feeling if I did get to sleep, I'd be having nightmares again.
And it's the grand National on Saturday......
Rosemary
Just when I was hoping things were looking up.... and I was getting back in the saddle again......
Had a phone call from Duke's owner, to say the farrier has been, fitted his special shoe I think, but has cut away quite a bit of his hoof where the infection was, so he can't be ridden for a few weeks.
So, no more riding for a while.
At least, not on Duke. ANd I don't want to try riding a strange horse with balance still very wonky and confidence very shakey.
Hope at least that this means the remaining "bad bits" of hoof are now all gone and what's left is healthy, so it will be better for him in the long run.
Haven't yet heard anything yet from neurologist (who's supposed to be sending me letter(s)), nor from eye hospital about prospect of talking to an anaesthetist about How TO Make Sure That Never Happens Again. Surprise????
Meanwhile, I have had a letter saying my tax rebate is on the way! - which has to be some sort of good news!! Not that I'm going to be moving to a palatial mansion with chauffeur-driven Rolls ROyce on 126 quid.
And the chiropractor has re-tested everything and reckons I'm making good progress - also has to be good news.
Grafted eye still has periods of feeling dry, sore and "can't wait to get this bloody lens out", though not yet been to A&E again. The other eye is looking horribly red and bloodshot, from having a lens in every day which it isn't used to.
WIsh I could get good night's sleep - so tired all the time. Have a nasty feeling if I did get to sleep, I'd be having nightmares again.
And it's the grand National on Saturday......
Rosemary
-
Andrew MacLean
- Moderator
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Re: Good luck to Rosemary
Poor Duke. I hope his hoof heals completely.
As to the Grand National; are you going to venture a small investment?
Andrew
ps my rebate usually follows the letter telling me that it is on the way by a couple of days. You should soon be flush with cash.
As to the Grand National; are you going to venture a small investment?
Andrew
ps my rebate usually follows the letter telling me that it is on the way by a couple of days. You should soon be flush with cash.
Andrew MacLean
-
Hilary Johnson
- Contributor
- Posts: 48
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- Keratoconus: No, I don't suffer from KC
- Vision: I don't have KC
- Location: Yorkshire
Re: Good luck to Rosemary
Rosemary
Oh no! - sorry the neurologist can't help more than that. That really is frustrating, particularly after the hassle you had getting the appointment. I thought that might help at least a bit.
Hope the appointment with the anaesthetist comes through.
H
Oh no! - sorry the neurologist can't help more than that. That really is frustrating, particularly after the hassle you had getting the appointment. I thought that might help at least a bit.
Hope the appointment with the anaesthetist comes through.
H
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