Good luck to Rosemary

[Andrew MacLean]

... And thanks for the tip about the 6.30. My cousin is going to Chepstow on Friday evening; I'll pass your advice to her!

Andrew

[rosemary johnson]

Well1
Just got back from Eye Hospital......
(by way of bank, mail box, etc)
Pretty uneventful actually.
New consultant agrees steroid reaction is possible, and says she's written it in my file for future reference; can reduce eye drops; all my questions about haloes with rainbow rings I should ask Ken not her; everything else appears OK as she says come back in 3 months.
Meanwhile she agrees the letter about stem cells is a mistake and will advise GP - and look out for anyone whose GP has been sent my details instead.
And apparently she can and will just do referral to the eye-neurologists about photophobia (hyper light-sensitivity) and doesn't nee to dilate my pupils to peer closely at retina first. Phew. Well, that's simpler......!
Bit unexciting one way and another.
Had lens in grafted eye on Saturday and it's still a bit tender. Any connection with being outside doing some gardening is pure speculation.
Gardening???? - OK, hacking away at the rainforest. Rushing vine. Sorry, should that be Russian vine? The creeper that doesn't creep, it sprints.
Rosemary

[Barbara Davis]

Is it too early to ask whether the new eye drop regime has helped?

[rosemary johnson]

I don't know about the eye drops - the new asthma inhalers seem to be doing batter.
I now have a red one which I puff once in the morning - and have on some very hay fevery days puffed a second time at about tea-time - which has a lower dose of steroid and a long-acting beta-2-agonist - that is, a longer-term version of the blue "reliever" inhaler that one uses when one starts wheezing.
I seem to be doing better on that than on the higher-steroid brown one - and feeling far less "fragile" in the sense of hallucinations not so far away.
The antihistamines were not a good idea - supposedly "non-drowsy", but in practice anything but! - they felt like they were soporific and had a stimulant intended to counteract it - but left the feeling like being dog-tired and trying to keep going on lots of black coffee - if you know what I mean;; I know you, Barabra, wouldn't be drinking black coffee!
I got to the end of the antihistamines and am now feeling better - sleeping again, less dopey and just got to get body clock working again.
Most notale effect of antihistamines was to unblock nose - or at least to leave it feeling snuffly with mucous rather than set solid and inclined to nosebleeds at drop of a hat, which I think is an effect of the eye drops as that's been happening since the op.
Had an appointment with Ruth the asthma nurse today.
SHe's given me a prescription for a GREEN (!) inhaler which has just the beta-2-agonist and nt the steroid at all, and I'll see how that goes for a month; also a different sort of antihistamines, so I'll try those.
Also for further supplies of the eye drops, as the hospital will only give out 1 month and I'm not due back till October. I had the form from the hospital pharmacy on Tuesday and Ruth seemed to think that wasn't a problem.
She says the latest urine sample test results aren't back yet and she'll ring me when they come.
It would seem that a colourblind asthmatic might have a few problems! - particularly if also got dodgy eye sight and/or lef tthe reading glasses behind!
ANyway, will see how I get on with that lot.
Meanwhile, I've now had the new lens in three days running - and think I mayhave an idea of what is causing it to get air bubbles underneath - or at least a it misty with a mistiness that shifts around as I blink.
WHat's that, then@
Doing a lot of looking straight down at something on the ground - or possibly poring over things spread out on a table.
HOw did I discover that? - been doing rather a lot of that lovely job well-known to horse-keepers: going slowly round the field equipped with wheelbarrow, shovel and marigolds. (Yellow rubber ones, not orange flowers.)
Took Duke out for a ride yesterday with lens in right eye for first time since op - not sure if it actually increased confidence in traffic; just get to see more of the bad driving...!
One thing though - we tried to find the way to where someone told me thee's a gateway into a park we can ride round. We found the park and the gate, but alas! it was locked. Must be intended to be a gate for horses as there's a mounting block on each side.
On the way back, we got lost! So it was fortunate I'd taken the map in my pocket (well, a folded piece of paper with a photocopy of the local part of the map. Unfortunately, I hadn't brought the reading glasses....! - I got Duke off the orad and into a car park and was sitting there trying to hold the map somewhere down by my rght knee and work out where we were..... and Due thought he had better things to do that stand around in car parks and was striking out across it...! Fortunately by the time he got to the far end of the car park and was about to go back on the road again, I'd worked it out - and he was actually heading inthe right direction! I should hav eknown fromt he enthusiasm of the walk! I think horses are born with compass needles intheir backbones - they all seem to walk twice as fast when they're heading towards home.
Rosemary

[rosemary johnson]

I am sooooo fed up with this!!!
Was sorting out some old paperwork yesterday.
Came across a couple of old newsletter/annual reports from That Certain Hospital.
One had an interview with someone about the op she'd just had - complete with piccie of her sitting up in one of those stupid hospital nighty things.
All-too-familiar pattern of little blue bits....
AARGHHHHHHH!
Brought all-too-much all right back. Spend first half of night lying in bed having ... well, like nightmares bt awake .... of being back there.
Tried listening to radio, sitting up in bed reading (a different!) magazine; got up in search of hot chocolate, cake, sandwich and other paper to read.
Didn't dare to go back to bed for ages or it would start again.
Crept back under duvet with sky light already. woke up a few hours later feeling better but exhausted. GOt another cup of hot choc and biccie and went back to bed for a while.
Divided morning between lying awake with visions of being back in hospital with SOmeone trying to steamroller me out of clothes into Stupid Nighty Thing(!) and falling asleep in middle of Archers omnibus (!!!!!!).
Thougt this had all worn off ages ago. VVVVVVV fed up!!!!!!!!!
Waarrrghhh.
Thought I was cutting down on steroids.
NOt helped by hearing things on BBC radio news about ideas of paying surgeons bonuses based onthe success of their operations.
Oh yeah?
ANd who, exactly, is going to define what "success" means????????
I'm sure all too many bloody surgeons would take a look at my eye, see some nice neat embroidery, no infection or rejection yet, and reckon it a great success. Is That Bloke to get a bonus for his neat embroidery exhibition, or no bonus for the bloody mess he's made of my life? Huh.
ANyone any idea to whom one should make representations about this?
OK, I@m sure there are some people who would gladly award their surgeons hefty bonuses for doing them gret grafts. But I don't think I'm the only one inthe world who'll be asked "who says what "success" means?"
Rant, rant, rant.......
BTW, anyone here talk Doctor-Speke?
Have seen letter from my GP with neurology referral which, apart from a lot of confusion, refers to me as "an engaging patient". I presume this is some sort of code for "confoundd nuisance; wish she'd just go away and shut up". (Of course, in - some? - Eye Hospitals the term for this is simply "keratoconic"!
Rosemary
Cynic? Moi??

[Barbara Davis]

What a miserable experience. I doubt it helps, but all I can do is send you a hug.

[Hilary Johnson]

Hi

I'm guessing that "engaging" means "talkative", as in "engages you in conversation", and maybe, talks to doctors as people, not as some inhuman authority figure. It's probably quite a compliment - it must be dreadful for them to deal with patients who just say "Yes doctor ... no doctor".

Your description of symptoms triggered by a picture of a hospital nightie made me think - is that post-traumatic stress? Some sort of flashback?? It sounds more like descriptions of shell-shock than anything else. It surely can't have been a drug reaction?? The sight of hospital nighties is not one I'd relish, having experiences of them myself, as you know, and it might be reasonable to have spent the next few hours remembering things you'd rather not and feeling bad, but for it to have such a dramatic effect ... Can you treat PTSD in yourself??? or are you going to have to see some sort of shrink after all???

H

[rosemary johnson]

well, I hope "engaging" is a compliment! - talkative as in "articulate" rther than "monosyllabic" I can appreciate would be of benefit to a doctor. Within reason, I hear you say....! And I suppose it must still be not universal for doctors to have patients walking in who have done their homework, know something about their condition and about how their own metabolism works. And/or as the case may be, how their own head works.
Shell shock? -= yeah, that fits, I suppose. PTSD is something that I mainly know as an American acronym and shrink money-spinner (!!) - and associated with people who talk about "flashbacks". Whereas accounts (survivor, eye witness or in works of fiction) of shell shock cover people who think they are, essentially, back in a similar situation and imagining what might happen from typical experiences, not also reliving the same single horrible thing. After all, shell shock would typical build up in people who'd been inthe trenches too long.
Recent nasty times are not flashbacks, per se - the worst are about the "next time", or a future occasion, and rewind and reprise, and this time it's going to be fine, only for some reason it starts going pear-shaped again after all. Or maybe it wouldn't but I lose confidence that it won't..... worst are the ones where I think I'm in good hands this time and will be fine but something happens and I find myself wondering if I can really trust these people any more than I could trust That Certain Surgeon to have my best interests at heart, and they've been playing me along and will do their own thing when they thing I'm lulled into a false sense of security and won't notice, and suddenly start panicking and screaming about what's going on here and who's been lying to me all along..... that sort of thing.
Best treatment is not to let myself get embroiled in it, and go and do something else, or think of something more interesting....
I am totally convinced that going to see any bloody shrink would be nothing other than a complete and utter waste of both of us's time, my temper and NHS budgets. Or whoever's budget, cos cos it ain't something I'd pay for in a month of Sundays!et
Bluntly.........
Just got back from Hickstead, v hot and dry, thorugh hay fever not too bad considering, and tired. Also phone keeps hanging up and I've had to redial twice in the middle, so hope this makes sense!
Rosemary

[rosemary johnson]

Well, I now have a letter (or two copies of one) from my new consultantto the eye-neurologist saying inter alia "Thank you for sending this patient an appointment" - never mind doctor-speke, that sounds like American management-speke.
I await this thanked-for appointment with interest.
Meanwhile, was yesterday evening seeing huge great rainbow rings in haloes round street light - bever seen them in anything exceptbright white lights before. THis was outside Reading station, on way home after afternoon visiting old college firend and his boyfriend and their tw cats.
This with new lens in grafted out. TOok lens out as soon as I got on the train. Could still see rainbow-haloes round lights on train, and at Paddington on way home, and even round my bedroom light (!) when I got home and went to change.
Eye more sore now than when took lens out.
Anyone else think this sounds, errrm, a bit un-reassuring?
Trying to contact Ken to ask if he thinks I'm paranoid as usual or right to be a tad anxious.
Definitely too hot for me today!
Rosemary

[Hilary Johnson]

R

I googled
PTSD treatment
and
PTSD self-help
If you think there's any chance it might be that, try that yourself.
It talks about it being about your memory getting stuck, like a scratched record that gets stuck in a groove.
One of the treatments involves someone waving a hand to and fro in front of you, and you follow it with your eyes, while thinking about the bad memories. The idea is, this simulates the sort of memory processing that happens in Rapid-Eye-Movement sleep, and helps process memories so they become less troublesome....
Interesting, if not necessarily very useful if you have dodgy eyes... I think there are equivalents using sounds on alternate sides. Bizarre but you never know.

H