UK Keratoconus Self-Help and Support Association

Hehe! Well i've written you all a little poem before i head back to Wales next week! Obviously i have way toooo much time on my hands until i can see again!!!!! It covers issues with KC patients and the debate on whether we should be proactive or not? I guess you know where i stand on that, not being a timid little mouse at all!!! LMAO!!!

I left out a verse on waiting lists i guess i dont need to be reminded again!! LOL! Well you know how it goes!

Anyway i hope you like it, as long as it is! Maybe you need to put the kettle on first!!!! LOL!

.......................................................

What do you see?


Dear Optometrist ...

I've been here many times before
And here I am again
Trying out new lenses now!
As I'm still having pain

I just don't know now what to do?
And where I go from here?
So I'm leaving all the choices
And decisions up to you!

So we go through the eye chart
But it's just not playing fair!
For every time I have to look away
A new letter turns up there!!

I think I'm truly going mad
As all lens they look the same!
And then the world turns yellow
As I'm attacked with stain again!!!

But after all of this is done
I sit and quietly wait
I don't ask you any questions
And then it's all too late!

I go home with no real answers
I didn't ask so you didn't say
I guess we hear what we what to know
And think it's easier that way!

But then one day it changes
And we decide we want to know!
We find forums just like this one
And see we're really not alone!

We find that KC patients
All want pretty much the same!
From honesty and answers
To comfort, better vision and less pain!!!

We learn new ways of coping
And what we can gladly do without!
Like oedema and scar tissue
And then hydrops without a doubt!

There's so many lenses out there
That to us we're often lost!
But we're hoping you'll support us
With no real regard to cost!

And then you tell us of a new lens
And we wonder if it'll work for us!
But hang on did I really hear you right?
Did you just say this lens cleans itself?!!!

There's so many things we need to know
And in time, being proactive works for us!
We're able to sort out what we need
And in your answers place our trust!

But I guess the question we now ask
Is while adding to what we know
For you who's there to help us
Is this the way you want to go?

Do you want us to ask questions?
And be assertive in what we need?
Or were things better off when we were quiet?
And to what you said we just agreed?!!

From one with KC who's listened here
I've tried showing you what we see
For while we are so very different
Our problems may not be!

But I guess that while we are learning
And struggling with issues that be!
The very real question that affects us all
Is when treating us ..... what do you see?!!

(Copyright Claire Sweet 2005)

Hehehe why do i see someone coming here now and replying with ... Dear patient?!!!!!! LMAO!!!!!!!!

Hope you liked it and are enjoying the bank holiday?! I spent all day yesterday cycling in the sun! LOL! And yea you've guessed it, even with total sun block i'm now burnt!!!!! LOL!!!!! So i'm staying well indoors today!

Take care, love a little sweetie X x X

LOOOOL

That was kool! But clearl Im not the only one with time on my hands and i dont just mean wearing a watch!!

What was the bit about waiting lists?...we all know they exist so dont be shy!

Sweet,
Excelelnt, fab and hillarious! So blinkin true too!
and the waiting lists.... hell.. why hold back! get on with it... if it;s one thing that kick starts the whole frustration of KC... it's the waiting lists!
and as for the "Dear Patient".... Bring it onnn!!!
Keep up the good work! (wayyyyy toooooo much time!)

Laters!

Sweet

You mentioned in the other post that you would get banned ot not seen?.by who?

Its not like you are putting down the medical staff?...its the system itself........and how its layed out.......I for one wouldnt put down any medical staff from my experince at MEH.....there all super and and know there stuff........its just how the waiting list, urgency and understanding of condition is set that needs attention

Do you think they call us patients because thats what they expect of us??

Well....

Claire sure knows how to twist someone's arm... Ouch ouch!! I just could not resist her poem.

Dear patientÂ…

IÂ’ve seen you many times beforeÂ…
And now youÂ’re here againÂ…
I read your notes with half an eye
While you describe to me the painÂ…


I sit and listen to the tales of woe
And try to understand
From what you say, just what is wrong
This isnÂ’t going as planned!

I thought I had rearranged the fit
So the vision should now be fine
But you insist you cannot see
Not even the highest line!

I scratch my head and check once more
And find to my dismay
The lens I gave you slides around
No wonder it hurts today!

I stain your eye, I measure your KÂ’s,
I see that things have changed
ItÂ’s like fitting a bucking bronco
Nothing ever stays the same!

I know that if I change the lens
The outcome is likely to be
By the time you come for collection,
Matters have moved on a thing or three

While I ponder on what to do
I talk to you some more
And get that sinking feeling
When you explain to me the scoreÂ….

You tell me in all innocence
You thought youÂ’d help me out
YouÂ’ve been trying out an older lens
I smile and try not to shoutÂ…

I explain that this disturbs the eye
And changes the shape and Rx
No wonder the new lens does not work
And I can‘t even give you specs…

To manage with while we start again
What am I going to do???
Meanwhile someone pops in to sayÂ…
Are you keeping an eye on the queue?

This is the time you decide to be brave
And grill me, all unwitting
I am trying to answer you at great length
While still thinking about your fitting

I decide eventually what to do
And am scribbling in your file
When you ask me how long itÂ’ll take
YouÂ’re off abroad in a short while

When is this going to be, I ask
You say itÂ’s in three days
You wonÂ’t be back for a month or more
I am thrown in disarray!

What can I doÂ…?? I take a breath
I phone the lab, I shout and plead,
They finally give in to me
TheyÂ’ll send it at breakneck speed

But when it comes to collecting day
YouÂ’re no-where to be seen
And turn up one week later
Saying the new lens just needed a clean!

I check you out because I know
That really was not the case
But things have moved along again
And weÂ’re not even at the same place!

Your eye has settled down nicely now
I am really most impressed
But no matter what I say to you
YouÂ’re convinced that YOU know best!


Lynn

Touche!

Maybe I need to start a new board... KC Poetry!

LOL @ Drew!!

All we need now is a screenplay, and a movie and weve taken it to the next level!!!!

Oooh eer Mrs'

Guess we'll have to call it 'Carry On Optom' cos thats what we make em do.

Im sure we'll all have plenty to say about Barbara Windsors misshaped cones.

Jay - please don't LOL '@' Drew it makes me come over all self concious

hehe

Thanks Lynn that was very nicely put! Hehe, i didnt twist your arm too badly!!!!!!!! LMAO!!!!!! It was lovely to see a post from you!

I know that story was made up and purely for fun! But it was also to put across whether we should be more proactive in asking questions or not? I guess it didnt really make the point i wanted it to!

So atter much debating i'm going to answer with some truths as to where i am and kinda what i wanted to say before which was badly put!! I know this wont go unoticed but its fine! If i didnt want to say it i wouldnt post it here and sign my name to it! LMAO!!!!!!

.........................................

Well i'm now back as you can see
This time blind but not in pain!
I guess this lens it did not help
And you were right again!

I know it was not cleaning
That really was to blame!
As trying out an older lens
Was pretty much the same!

i think i'm at a stage now
Where i don't want to keep this lens
Is there something else that i can try
Because this has to end!!

I've had so many fittings
Which made this RGP real small
But in honesty i'm still in pain
And I don't think it helps at all!

I know i take all of your time
And question everything!!
But to me this is my eyesight
And i would love to see again!!!

I've heard of different lenses
Though i know you don't agree
But for the sake of sanity
Would you please just humour me?!!

You want me to have sclerals
But we know it's a long wait
And in the meantime i have nothing
Not sure how much more I can take!

So please i'm here again
As i just don't know what to do
I'm pretty much in blindness
And you're the person i turn to!

This isn't about money
Or what lenses you may sell
i'm not just another patient
As I have rights as well!

There's politics that i don't see
And costs i'll never know
But all I want here is to see again
And these sclerals are so slow!

But here i guess i have to say
Who knows if with them I could see??
I've put all my hope and trust in them
Because that's what was told to me!

So here I guess we meet again
You're not sure now where we go
But I think that I have said enough
So please don't ask me ..... I don't know!

(Copyright Claire Sweet 2005)