Message from Rosemary

[Andrew MacLean]

Too late to wish you luck, but nonetheless I hope your appointment went well.

All the best

Andrew

[rosemary johnson]

Ha! Thanks for thebest wishes, but....
Dragged myself out of bed, filled in (rest of) the questionnaire.
Booted up PC and typed out, and printed off, the extra info that wouldn't fit on the form.
Dashed round there. All very quiet.
OK, says receptionist, didn't anyone contact you? Checks her list.
She tried to contact me herself and didn't get an answer to her phone calls.
Practice nurse who does health checks is off sick. Postponed appmt to 2 weeks today.
Very apologetic. Oh well, it happens. Came back and rebooted answering machine.
Will still be beofre Barts apptmt. Am only hoping they read what I wrote out before they see me. ANd it makes sense.
WIl see where I got to and try part 5 again..... having een hung up again last time I tried.
Rosemary

[Andrew MacLean]

Rosemary

I guess that we are going to have to get used to clinics being cancelled or postponed because the nurse who offers that particular service is off ill. In the best regulated system people will catch all sorts of things that we'd all rather they did not pass on to us!

Every good wish

Andrew

[rosemary johnson]

wibble wibble gibber gibber baa baa baa baa waaaaiiiillll!!!
have had the mother to stay.
SHe's gone home now. Just managed not to strangle her.
had to tidy up hastily and now won't be able to find anything for ages.
Little Ollie made a great impression - apart from him, she's quite blatantly uninterested in anything remotely horse-related.
Doesn't stop her boringme at great length about all the things I've no involvement in, and people I don't know an dnever met.
Oh well.
APpointment at new GP's today -t he one postponed two weeks ago when the nurse was off sick.
Running late but went ahead.
She said thatnks very much or typing out (legibly, rather than my handwriting!) the bits that wouldn't fit in the boxes on the form.
Says blood pressure not as high as it has been; nor is weight. urine sample reads OK, drugs listed.... etc.
POinted out the two main things I'm worried about, said have further Barts apptmt a week MOnday and can only hope all the tests they've done have found what the problem is.
ALso pointed ut the paragraph about what I still think are neurological problems, and that I'm being batted from pillar to post with nothing being done about it, and not getting through to the right person.
She appeared shocked that no-one had done any scans.
And generally concerned nothing positive had been done.
Saud I should make an apptmt with a particular one of the teamof Drs who she said was good at this sort of area.
So have done - Wednesday afternoon.
Wish me luck then, won't you!
SOunds positive.... I live in hope.
Meanwhile, have to get up at crack of dawn or before tomorrow as supposed to be riding in a dressage comp - and need an early start with horsesnoxes from yard to venue.
Off to bed....
Rosemary

[Barbara Davis]

I do indeed wish you luck. And the GP sounds promising: I do hope so. Fingers crossed.

And good luck with the dressage: I hope you enjoy it.

[Andrew MacLean]

Can we see some photos of the dressage?

All the best with the GP.

Andrew

[rosemary johnson]

The latest dressage has been recorded on camcorder - I haven't seen it yet......
Don't know if anyone took any photos.
FOr photos of thehorses, see - I think it is - www.freewebs.com/dannycrossinstructor
Under "photogallery - look for Arizona (Aei) - he was the one I rode in the dressage comps recently.
There are also pictures of me and Duke jumping, last summer under "riders, sharers, etc".ALso Jack and Leo, the little Shetlands I (try to) exercise. I think Lexi is there too, but not yet Ollie.
As for the GP:
Youngish man, listened carefully, asked sensible questions, took the time needed.
Seems to think best bet is o continue in the "system" I'm already in, and work through there, even if I thin I'm seeing the wrong people there, and work through to right place.
He agrees it sounds like a neurology problem, tough has no more idea than me as to the particular sub-speciality in question.
He also thinks it sensible steps 1. to ask the endocrinologist (again) if he thinks the steroid problems may be having a knock-on effect in those areas (memory retrieval; in ability to process motion sensations).
and 2. to get copy of medical records from neurology hospital - not least in case eye op people have been spreadking misinformation (by misunderstanding or attempt to cover backs!!!)
SO nothing positive really (apart from prescription for more hay fever meds, which seem to be still necessary!) ut then, was surprised nurse would think he'd sort it out so easily.
But much better vibes than previous lot.
He, like nurse, asked who previous GP was and what he'd done - saidwho, and "precious little" . COmmented previous records wouldn't help much! - said "If I kept records like that on my patients, my insurance company would have me on toast!" an dhe said "Nuff said!"
I suspect that practice may be picking up a lot of dissatisfied cusotmers" from same place........ judging from comments of PALS complaints officer not least.
Now
Neext item is endo. apptmt on Mnday - and hope, hope hope they will have got some result that let them work out what the problem is.
Meanwhile, been piggybacking in left eye as have some of the daily disposable soft lenses still. Vision blurrier bt can keep lens in much longer.
Nothing frm the "blackout lens" people at the hospital - nor any response yet to me cahse=up emails of "Should I have heard?"
Rosemary

[space_cadet]

Just posting to say I have been reading and sending you virtual hugs and good luck vibes over the net.

love
Lea
oxx

[rosemary johnson]

Tried to post this yesterday and computer kept hanging.
Grrr, frsustration.
trying again.
went to see endocrinologist yesterday.
long wait. Not as bad as eye hospital
young woman ill-advised enough to say the "good news" was that all the test reslts were in normal range.
Nope, that's not good enws, that's very very BAD news cos it means they don't know wha tthe problem is and what to do about it.
she reckons there's nothing worng their tests can pick up an dwas ill-advised enough again to say "IF there's aproblem....
Oh yes, there's a problem! I've been feeling iller than ever recently and just about collapsed at the stables again weekend before last.
So if your tests aren't showing anything, now what I am to do.
She went to get consultant.
Consultant not very helpful. Can only say, they can't find anything wrong that their tests show up.
Except low levels of iron and vitamin D (they are retesting those, in case "summer" sun has sorted the lattr out - an diron tablets the former.
he did say takes several month for iron tablets to take effect.
really??
Asked what on earth I'm suppose dto do as can't carry on like this.
Said: what do I do if//when I collapse again? - call an ambulance? tell them what???
GOt no answer to the latter.
surprise.
said how on earth am I supposed to get fit and healthy again and be able to work again?
he asked if Iit were keeping me off work - said hadn't been able to work fully ever since the eye operation.
He says it is not impossible that I now react so much to any trace of steroidthat I have the adverse reaction to any naterual increase in levels that are within "normal" levels for anyone else.
But his tests sh tests won't show that up.
Hes proposing to write to my (new, I hope) GP suggesting GP refers me to a chronic fatigue specialist.
I hold out pretty well zero hopes from THAT (though would be delighted to be proved wrong).
SOmethign about such people (he's named one) being used to people with unexplained fatigue .
I'm sure he is - but what's that got to do with me?????
My symtptoms - not only the fatgue - are certainly not unexplained - I know EXACTLY what sets them off.
Veryv ery very pee'd off.
Now what on earth do I do??????
I seriously cannot go on like this and it is getting worse not better.
And next time I run out of energy and collapse, it may not be on an orginased guided walk
with the organiser to call 999 and fellow-walker to come to A&E with me and her partner to give me lift home.
Or in stable yard with someone to make tea, through horse rug over me, whatevr.
Being robbed, ugged, or dying of exposure highly possible.
And just cannot go on being so weak and lacking in strength.
Let alone being up half of so many nights trying to keep keep the hallucinations at bay.
I suppose if they had said "No physical problem, you're just hypersensitive to natural gluctuations in your own hormones; nothing we can do about it"
I'd be no worse off.
but would be a hell of a lot p['d off at dismissive attitude.
v v fed up, not to mention despairing.
Seriously, what on earth do I do now?
answrs on a postcard.
I can see DUke outliving me, let alone Ollie.
Actually, I can see Duke outliving me - farrier came today and trimmed his feet, and says they look much better.
Through misadventure, I hasten to add, not intention !!!!!!!!!
Ollie, BTW, is getting blacker, and bigger - he's over two foot tal and getting quite a chubby little pony.
And looking more and more like his dad.
Scuse me while I go out and scream.....
Rosemary

[space_cadet]

Gotta love stupid health care hun, but I can see from your posts your determination to get answers which is a good thing, don't let the b@stards attitudes get you down, instead use them to write complaints to the local health care trust.

Thinking of you
x