Good luck to Rosemary

[Andrew MacLean]

Rosemary

I am not bored, just anxious for a friend!

At least nobody has daunted your battling spirit!

All the best

Andrew

[Hilary Johnson]

Hi R

I am Rosemary's sister - hello to everyone else

Thought I'd register here - might save me any more phone calls as long as last night's (I don't mind really, just rather tired this morning...)

The things in your ear I was talking about on the phone last night are called "otoliths" - google it for more information, basics in Wikipedia. They are actually in the inner ear, not the middle ear as I said - apologies for any confusion.

I also meant to mention - I heard recently that corneal ulceration and subsequent scarring is a known complication of measles - is this possibly relevant to you? (Forgive my ignorance if everyone else knows all about this.)

See you around here some more maybe.
H

[Andrew MacLean]

Hilary

Welcome to the forum; it is good to meet another member of the Johnson clan!

I had heard about measles leaving corneas scarred. http://www.v2020.org/page.asp?section=0001000100020005

Otoliths are the 'organs of balance'.

http://www.tchain.com/otoneurology/diso ... liths.html


Andrew

[rosemary johnson]

Hi H!
Fancy seeing you around here.
Good to know you've registered. Though it strikes me we ought to have some new categories for the message footer information.
Like, "No, I don't suffer from KC, I only suffer from a family member who's got it"
Or: "I don't suffer from KC, I suffer from NHS bureaucracy, incomprehending employers and flashbulbs." Or whatever.
Otolith, thanks; I will remember.
Measles: for the rest of our readership, I'd better explain I'm just old enough to have got measles only a few months before the measles jab came out. Grrr. And pink eye afterwards.
But I've never had any probs with corneal ulcers, despite wearing lenses for, oh, ahem! 32 years or there abouts. Only scarring from hydrops - three of them in the eye that's been grafted and the bt of me, scars and all thrown in the bin, waaarghhhhhh!!!!!!
Marginally better today than wehn I last posted, just still very tired (still not sleeping). Went last night to riding school dressage club event. Volunteered to be trainee "caller" - that is, the person standing at the end of the arena shouting out the next moves inthe routine, in case the person riding forgets what comes next. WIth left eye too sore for lens, so had taken it out. Could read the sheet with grafted eye, and approx 5" distance, but then had to peer and squint round the arena trying to see when the horse got to the point where I should be yelling the next bit of instruction. "Learning experience" I think it's called. WHich is why the club was set up.
Got offered lift home by one of people I'd called for. All headlights, traffic lights, street lamps looked like vertical ovals of coloured streaks - I said "like lit-up pine cones" which was best description. QUite pretty, but should they be like that?????
Rosemary

[rosemary johnson]

Rosemary

I am not bored, just anxious for a friend!

At least nobody has daunted your battling spirit!

All the best

Andrew

Andrew, thanks for the kind words.
My battling spirit has not been likked off yet, but has been feeling severely daunted at times. It has been having too many fronts to fight on all at once, even without the overriding front of having to try and get better, and cope with overweaning tiredness.
(Sorry, line above should say "not killed off")
HAven't stopped breathing yet.
Do not consider that a decision to stop breathing would be rational or logical.
Have actually never seriously thought anywhere in this saga that a decision to stop breathing would be logical or rational.
NOthing quite like telling a violently suicidal hallucination that it is illogical, Captain! Are my ears growing pointy yet?? - maybe that's why the otoliths are having problems??!!!!!
Sorry for sick sense of humour, folks - I claim it is spending 7 years working with pathologists - you know, people who work in path labs and sit in the canteen eating their lunch chatting about Food Poisoning Bugs We Have Known, and such delights.
Rosemary

[Andrew MacLean]

Slightly off topic, I know; but you did make an allusion to Spock.

I saw a wonderful message for a 54th birthday card:

LIV
long and prosper!

Back on topic: you are always in our thoughts! Every good wish.

Andrew

[rosemary johnson]

Well, a bit of progress I hope.
Saw GP again this am. Over 5 weeks since he first said he'd do it, I have have referral.
And after some more discussion about whether this was a problem for neurology or ENT, I've explained what the problems is about again, and he appeared to understand what I meant, changed his mind and says he now does agree this is one for a neurologist, and has done the referral on the computer system.
The way it works is, he lists the possible referral places on his computer, picks the one we want, and clicks the thingy to send off my data to be referred. He then prints me off the details with phone number, reference number and password, and I have to ring them tomorrow and book a time.
He's also going to write to them with summary of what he know understands the problem to be. And he's written down the names (generic, proprietary and colloquial) of the substance believed to be the culprit - that is, the one with listen side effect of reducing cerebral oxygen uptake.
ALso had good long session looking back through all my medical records bac kto Year Dot. Lots of familiar and vaguely interesting stuff, but not actually anything about birth or early baby clinic stuff - my family are telling me I was born with cord round my neck and took a long time to start breathing, so may have been sensitive to low brain oxygen from that. GP wrote that down too!
Hoping for best and will wait and see.
Fear that with delay caused by Certain Former COnsultant's intervention, by the time I get to see neurologist, s'he may say "Well, if you'd come staight away, we could have done something, but by now it's too late and you're stuck with it."
Also found - and have copy of - GP
's account of phone call from Certain Ex Consultant. 3 days after I'd been assured that change of cons was in hand, so I should have been no longer any of his business.
Cannot be- LEEEVE even he could possibly say any such thing.
Think am well out of that one.
And hope and trust in new consultant's common sense!
Meanwhile am surrounded by various half-read, folded inside-out and confused copies of the Racing Post. Talk about wind-blown chaos from Cheltenham. I'm so glad I wasn't trying to be there in person.
Rosemary

[Hilary Johnson]

Very glad to hear your GP is on your side and being co-operative now.

Re ex-consultant - - - no, best left unsaid...

Calling for dresage - sounds a bit like calling for a ceilidh. I did once call a ceilidh outdoors and it got so dark I couldn't see the dancers, but at least I had the music to help get the timing right.

Hilary

[rosemary johnson]

Yes, dressage and ceilidhs have their similarities, I suppose.
The difference is, someone riding in a dressage competition is suppose to know what they are doing and be using you as a memory-jogger, and you're not having to teach them how the routine goes first.
And there's only one of them..... no, actually, there's two...... and I was riding a dressage comp once and my horse decided to start obeying the caller rather than me, and trotted a marker too soon, as soon as the caller shouted the next bit coming up. Ooops.
I now have a date with a neurologist...... errrrrrm, I'd better rephrase that, hadn't I???!! - particularly in light of ex-consultant's comments (as reported on GP's computer).
I mean..... said ex-cons has seen me at remarkably close quarters recently. Clearly, I shouldn't have bothered trying to shave off the designer stubble on the morning of the op.
Actually, said designer stubble looks remarkably impressive in bathroom mirror with grafted eye at about 5" away.
Unfortunately, so do the wrinkles. When adn how did I grow so many???!!!
Rosemary

[Hilary Johnson]

You said:

"No, I don't suffer from KC, I only suffer from a family member who's got it"

Well, you said it!
Seriously though, I haven't actually sufferred from Rosemary having KC, except in minor inconvenience ways that can easily be worked around really, what I did suffer from was:

- problem-focused parents getting so worked up about my sister's eyes they forgot that I existed
- opticians more interested in discussing my sister's KC than in checking my eyesight
- unpleasant kids at school making facetious remarks about "Dig your sister's cool shades" - or just pestering me with nosey questions about why she was wearing contact lenses at all
- little old ladies at church accosting me with "Hello Rosemary, how's your eyes?" and getting stroppy with me when I pointed out their mistake (no, not even apologising for calling me by the wrong name!)

Actually, this is just the human failings of people rather than anything KC-specific, I mean Problem-focussed parents is not a good idea, nosey and ignorant kids at school cause suffering anyway, ditto anyone who thinks children (I was about 12 at the time) aren't worthy of respect, and that siblings don't count as separate individuals.

In other words, "No, I don't suffer from KC but I suffer from the ignorant and thoughtless attitudes of people towards medical problems" - but that could be said of any sort of disability. And I expect most kids suffer from not being treated as real people, and probably most siblings suffer from not being treated as separate people.

Are there any other "KC siblings" on this site?

H