Quicktopic posts: Jan 2003
Moderators: Anne Klepacz, John Smith, Sweet
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Susan Mason
".Every one on here seems to be confident..and dealing with their problem.. I have just told of my disorder and
it has upset me and dealt my confidenc a blow...
...I am perfectly healthy and yet young..and this has landed on me..
How do you guys do it..?"
>>>>>>>>> You obviously haven't been readin my posts!!!
>>>>>>>>>>>>>>>>> you have probably missed my essays too!!!!!!!!!!!
I am getting more and more fed up and depressed with this now and am even considering a count down from last June when they started to attempt to fit me with lenses. Hopefully the next optometerist who will check what my optometerist though would be an ok fit scleral lens wise, will help me... just a shame I have to wait 5 WEEKS for this appointment which is just basically a second opinion. My confidence and faith levels are at an all time low ....after all the problems I have had how do I know sclerals will work and how long for??? I am getting very fed up with having a little hope to hold onto between appointments only to have it dashed when I go back ...they dont even ask my name any more ...... I am sure my file which is expanding rather rapidly has a big black cross on it.
PS sorry this is not more positive .... I am sure I am a very strange case ... they tell me I am in the 10% most difficult... doesn't make me feel any better, and not sure which context of difficult they mean.
it has upset me and dealt my confidenc a blow...
...I am perfectly healthy and yet young..and this has landed on me..
How do you guys do it..?"
>>>>>>>>> You obviously haven't been readin my posts!!!
>>>>>>>>>>>>>>>>> you have probably missed my essays too!!!!!!!!!!!
I am getting more and more fed up and depressed with this now and am even considering a count down from last June when they started to attempt to fit me with lenses. Hopefully the next optometerist who will check what my optometerist though would be an ok fit scleral lens wise, will help me... just a shame I have to wait 5 WEEKS for this appointment which is just basically a second opinion. My confidence and faith levels are at an all time low ....after all the problems I have had how do I know sclerals will work and how long for??? I am getting very fed up with having a little hope to hold onto between appointments only to have it dashed when I go back ...they dont even ask my name any more ...... I am sure my file which is expanding rather rapidly has a big black cross on it.
PS sorry this is not more positive .... I am sure I am a very strange case ... they tell me I am in the 10% most difficult... doesn't make me feel any better, and not sure which context of difficult they mean.
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ziggy
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harpomatrix@yahoo.co.uk
Hi,
don't worry not a boring hydrops update as usual however i will mention its been 8 weeks and 2 days now!! (sorry)
Haven't talked much about my left eye which is the eye i am relying on in terms of vision. It has keratoconus too but not as bad as the right eye. I was prescribed a contact lens for it months ago.
Problems is i do not usually wear it. Its a hard ontact lens but i never really followed the adivce of trying to build up how many hours i wear it for. This is because it doesn't feel greatly comfortable but then again i haven't probably given it much of a chance.
Its cause my eye is a little sore the day after i put the contact in and don't really want to put it in again if my eye is a bit sore so i leave it for every few days. Currently i am wearing it only for my weekly driving lessons. its ok but does water and its hard to look side to side with it.
Any advice on how i should begin getting used to them?
don't worry not a boring hydrops update as usual however i will mention its been 8 weeks and 2 days now!! (sorry)
Haven't talked much about my left eye which is the eye i am relying on in terms of vision. It has keratoconus too but not as bad as the right eye. I was prescribed a contact lens for it months ago.
Problems is i do not usually wear it. Its a hard ontact lens but i never really followed the adivce of trying to build up how many hours i wear it for. This is because it doesn't feel greatly comfortable but then again i haven't probably given it much of a chance.
Its cause my eye is a little sore the day after i put the contact in and don't really want to put it in again if my eye is a bit sore so i leave it for every few days. Currently i am wearing it only for my weekly driving lessons. its ok but does water and its hard to look side to side with it.
Any advice on how i should begin getting used to them?
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Susan Mason
Harpo saisd ...... Haven't talked much about my left eye which is the eye I am relying on in terms of vision. It has keratoconus too but not as bad as the right eye. I was prescribed a contact lens for it months ago.
Problems is i do not usually wear it. Its a hard ontact lens but i never really followed the adivce of trying to build up how many hours I wear it for. This is because it doesn't feel greatly comfortable but then again I haven't probably given it much of a chance............. Sorry Harpo cant really advise you much here. My first pair of lenses took me about 4 weeks to get up to around 7 hours a day and with that the right one did feel a little funny, not painful I just new it was there, with the left one most of the time it was easy to forget it was in. Because of this when I went back to the hospital and they said that the right lens was causing problems I was not surprised. Several weeks later with a second lens for the right eye (having had the wearing time in the left eye reduced to 4 hours a day 5 days a week ... they had advised that I would only get 5 days wear anyway so bang go the weekends as I need to see at work for 5 days!) again it took about 2/3 weeks to get the wearing time up to around 8/9 hours, just long enough to see at work (again still only 5 days a week)At this point I was very comfortble with the lenses, very often I could not even tell they were in (apart from being able to see well)so when the hospital said at the second check up appointment of the fit of the lenses that again the right was no good and the left was only just accecptable no one was more surprised/depressed than me.
Has your optometerist not advised anything??? I found mine did not like to commit himself to exact times etc I got the feeling they were frightened of advising one thinng then things not going to plan ... no good to me as I felt they were supposed to be the experts re this. Hopefully someone else can give you some advice that will help, at the end of the day I get the impression that this is all down to tollerance and we are obviously all different. My eyes seem to be less tollerant once I have left the hospital, it seems that it always looks ok until they send me away and then call me back after a 4 weeks or so (makes you wonder if they think I am making the wearing time up, however I have not been and at 34 and 3/4 think I am responsible enough to realise that the only way through this is to wear the lenses when I absolutely need to and for the rest of the time make do without, I am getting very good at listening to the telly!
Best wishes, glad the hydrops is improving.
Problems is i do not usually wear it. Its a hard ontact lens but i never really followed the adivce of trying to build up how many hours I wear it for. This is because it doesn't feel greatly comfortable but then again I haven't probably given it much of a chance............. Sorry Harpo cant really advise you much here. My first pair of lenses took me about 4 weeks to get up to around 7 hours a day and with that the right one did feel a little funny, not painful I just new it was there, with the left one most of the time it was easy to forget it was in. Because of this when I went back to the hospital and they said that the right lens was causing problems I was not surprised. Several weeks later with a second lens for the right eye (having had the wearing time in the left eye reduced to 4 hours a day 5 days a week ... they had advised that I would only get 5 days wear anyway so bang go the weekends as I need to see at work for 5 days!) again it took about 2/3 weeks to get the wearing time up to around 8/9 hours, just long enough to see at work (again still only 5 days a week)At this point I was very comfortble with the lenses, very often I could not even tell they were in (apart from being able to see well)so when the hospital said at the second check up appointment of the fit of the lenses that again the right was no good and the left was only just accecptable no one was more surprised/depressed than me.
Has your optometerist not advised anything??? I found mine did not like to commit himself to exact times etc I got the feeling they were frightened of advising one thinng then things not going to plan ... no good to me as I felt they were supposed to be the experts re this. Hopefully someone else can give you some advice that will help, at the end of the day I get the impression that this is all down to tollerance and we are obviously all different. My eyes seem to be less tollerant once I have left the hospital, it seems that it always looks ok until they send me away and then call me back after a 4 weeks or so (makes you wonder if they think I am making the wearing time up, however I have not been and at 34 and 3/4 think I am responsible enough to realise that the only way through this is to wear the lenses when I absolutely need to and for the rest of the time make do without, I am getting very good at listening to the telly!
Best wishes, glad the hydrops is improving.
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Laura
Can someone please help! I'm being made redundant from my job, they know about my condition. But when I start a new job is it best to put it on your CV about KC or just tell them sfter. I'm not sure at the mo how my condition is coz Im just about to see my consultant for the first time. However at the mo. my eyesight seems to be deteriorating quite quickly as Im struggling at the moment with the glasses i have. I know it sounds a bit thick but can someone please reply as i am rather confused at where io stand with this.
Yours gratefully
Laura
Yours gratefully
Laura
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Sue Ingram
Hi Kirsty (1328), Welcome to the KC Discussion Page. Sorry that you are experiencing problems with your new lenses. I don't understand why you cannot see with them - they are supposed to correct your vision, not make it worse! When I put my first lenses in, 25 years' ago now, immediately I was amazed that I could see every blade of grass, rather than just a patch of green somewhere outside - I had no idea that my vision was not what I thought it was.
You will usually find that you have a different lens for each eye and therefore they cannot be swapped, otherwise you will not be able to see - so maybe this is what has happened, as you suggested. This also maybe why they are not comfortable for you. Have you tried swapping them?
Assuming that you have rgp corneal lenses, then yes, it does take some time for your eyes to get used to the lenses and you normally need to increase the wearing time each day until you are wearing them all day. The first day I wore mine, it was for just half and hour and I sat completely still for that half an hour and did not move my head at all - I thought the lenses would fall out! Obviously, after a while you become more confident and you will find that you forget the lenses are in your eyes.
However, this will only be the case if the lenses have been fitted correctly - it is extremely difficult to find an optician who is expert in fitting lenses on KC eyes; this takes alot of time and patience, on both their part and yours.
I think you should contact your consultant immediately and explain the problems you are having - they do not seem right to me and you cannot wait until March. Unfortunately, many people (including practitioners) do not understand what it is like to have KC and that we cannot carry on our lives without out lenses and that our lives cannot just be put on hold for months because of the 'system'. So, you might find that you have to be extremely strong and firm when dealing with your consultant in order to get the treatment that you require. Don't be afraid - ultimately they are there to help you and if you need to shout and jump up and down a little - then so be it. You need to tell him that you cannot cope at work with the situation as it is now and need to see him again urgently. Unfortunately with KC it is just utter peserverance in getting the right solution for you and it can become extremely soul-destroying.
We have all been there and know exactly how you are feeling; it is extremely frustrating and it is very tough as noone understands unless they also have KC - we are all gunning for you. Good luck and keep us informed of your progress. Keep smiling :-). SUE
You will usually find that you have a different lens for each eye and therefore they cannot be swapped, otherwise you will not be able to see - so maybe this is what has happened, as you suggested. This also maybe why they are not comfortable for you. Have you tried swapping them?
Assuming that you have rgp corneal lenses, then yes, it does take some time for your eyes to get used to the lenses and you normally need to increase the wearing time each day until you are wearing them all day. The first day I wore mine, it was for just half and hour and I sat completely still for that half an hour and did not move my head at all - I thought the lenses would fall out! Obviously, after a while you become more confident and you will find that you forget the lenses are in your eyes.
However, this will only be the case if the lenses have been fitted correctly - it is extremely difficult to find an optician who is expert in fitting lenses on KC eyes; this takes alot of time and patience, on both their part and yours.
I think you should contact your consultant immediately and explain the problems you are having - they do not seem right to me and you cannot wait until March. Unfortunately, many people (including practitioners) do not understand what it is like to have KC and that we cannot carry on our lives without out lenses and that our lives cannot just be put on hold for months because of the 'system'. So, you might find that you have to be extremely strong and firm when dealing with your consultant in order to get the treatment that you require. Don't be afraid - ultimately they are there to help you and if you need to shout and jump up and down a little - then so be it. You need to tell him that you cannot cope at work with the situation as it is now and need to see him again urgently. Unfortunately with KC it is just utter peserverance in getting the right solution for you and it can become extremely soul-destroying.
We have all been there and know exactly how you are feeling; it is extremely frustrating and it is very tough as noone understands unless they also have KC - we are all gunning for you. Good luck and keep us informed of your progress. Keep smiling :-). SUE
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Janet Manning
Dear Ali,
With regard to future job prospects, I suggest you get yourself an income protection plan NOW. I got one when I became a single parent, little realising it would be my eyes that proved the problem. The company knew I had KC, when I took out the policy, but have still paid up. It has been a godsend through the ups and downs of recovering from bilateral grafts, having found I could no longer cope in my job as a Uni lecturer. At least I haven't had to worry about money and have been able to retrain for a career with which I can cope. `Now I have my own business as a homeopath and am gradually becoming financially independent again.
I hope it never comes to this for you, but an income protection policy would give you security and peace of mind. If you would like to email me about this, you are welcome:-
janetmanning@lineone.net
Hi Laura,
I don't see any reason why you should mention KC on your CV. If the company think you can do the job and select you, you will probably have to have a medical, where it will emerge. Be ready to say how you will cope and what extra equipment you might need. Having selected you as the best person for the job, they have a duty to assist you in doing that job, should you need support due to a disability. Best to get the job first and then negotiate from a position of power!!
Good Luck both of you
Janet
With regard to future job prospects, I suggest you get yourself an income protection plan NOW. I got one when I became a single parent, little realising it would be my eyes that proved the problem. The company knew I had KC, when I took out the policy, but have still paid up. It has been a godsend through the ups and downs of recovering from bilateral grafts, having found I could no longer cope in my job as a Uni lecturer. At least I haven't had to worry about money and have been able to retrain for a career with which I can cope. `Now I have my own business as a homeopath and am gradually becoming financially independent again.
I hope it never comes to this for you, but an income protection policy would give you security and peace of mind. If you would like to email me about this, you are welcome:-
janetmanning@lineone.net
Hi Laura,
I don't see any reason why you should mention KC on your CV. If the company think you can do the job and select you, you will probably have to have a medical, where it will emerge. Be ready to say how you will cope and what extra equipment you might need. Having selected you as the best person for the job, they have a duty to assist you in doing that job, should you need support due to a disability. Best to get the job first and then negotiate from a position of power!!
Good Luck both of you
Janet
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