Crushed

[kimby2007]

Hello All:


Went to my eye doctor yesterday and I was crushed by the news he told me. When first seeing him he told me that I could expect "to be comfortable" in 6-9 months. Since he is on top of his field I believed him and NEEDED to believe him. However the next appt he changed dx or moreover added to dx. This last appt he told me it can take yrs to see any improvements if ever and once again added to dx. After crushing me he looked at me impatiently as if he was surprised that I was heartbroken. I guess in the end I am just another number on line. I can't tell you how profoundly sad I am. It is soooo hard for me to understand how your eyes could just "go" overnight. He told me that this was impossible that it had been deteroriating for yrs. I just want to know How I was supposed to know when there were no signs. I keep wishing that I could of done something before they just went. I look at old pictures of myself and see my white eyes and in places where I probably will never be able to go again (beaches, boats, etc) and it just kills me. Not being able to read, to travel, to watch tv, to walk around outside, where do I find the strength to keep going. I think about this 24/7. Can't sleep, can't eat. I shake my head and keep thinking this is some nightmare I am going to awaken from. But I know that it is not true. I pray from relief from the pain but also from my mind which is equally relentless. Everyone looks at me like a failure since I can't deal with this.

I just pray everyday that I get the strength to deal with this.

[dianat]

Keep praying, kcoffiner.

You are correct to be praying for the strength to handle whatever it is you are dealt. The miracle may or may not happen, but the ability to carry on with your life, however your eyes feel, is what's important.

Please, do give yourself some credit for feeling so low about this. Yours is a really tough condition. We who understand miserable eyes do know what you are feeling mentally. And we are not judging you as a failure. Anyone who does has not taken the time to understand your situation. It is okay to be depressed about this, but find a way to fix that if you can. Your mental healing will assist in your physical healing.

In addition, I want to caution you about believing your doctor's prediction. He may give the best medical advice ever, but is obviously not at all aware of your true suffering. There was no need for him to predict "years" before your comfort improves. Dry eye is so bizarre, I don't see how anybody can do any accurate predicting with regard to comfort.

My eye doctors have been wrong is so many ways! Blood serum wasn't supposed to help me, but it did. My eyes don't appear to be very dry, and yet I have suffered terribly. Lasik was supposed to be ideal for me. My experiences have been quite different than what was predicted by eye doctors.

So, don't you get hung up on some prediction that should have never been made. Your doctor does not really know when you'll see improvement. It could take time, but it could be tomorrow!

So, keep praying and following all the good advice you've gotten thus far. I know you wear goggles and use Restasis. Restasis is worth sticking with for a while. Have you considered cautery? This may work out better for you than plugs. Kcoffiner, you still have options.

You are too young to let this get the better of you. Do consider trying an antidepressant if you feel your mental state is getting in the way of living your life. And don't give up hope. There is a "Dry Eye Triumphs" forum on this bulletin board. It's been a pretty active place and it's only been there a week or two. There is no reason to think we won't see you there sooner than later.

My best to you.

Diana

[Francesco]

Keep praying, kcoffiner.

You are correct to be praying for the strength to handle whatever it is you are dealt. The miracle may or may not happen, but the ability to carry on with your life, however your eyes feel, is what's important.

Please, do give yourself some credit for feeling so low about this. Yours is a really tough condition. We who understand miserable eyes do know what you are feeling mentally. And we are not judging you as a failure. Anyone who does has not taken the time to understand your situation. It is okay to be depressed about this, but find a way to fix that if you can. Your mental healing will assist in your physical healing.

In addition, I want to caution you about believing your doctor's prediction. He may give the best medical advice ever, but is obviously not at all aware of your true suffering. There was no need for him to predict "years" before your comfort improves. Dry eye is so bizarre, I don't see how anybody can do any accurate predicting with regard to comfort.

My eye doctors have been wrong is so many ways! Blood serum wasn't supposed to help me, but it did. My eyes don't appear to be very dry, and yet I have suffered terribly. Lasik was supposed to be ideal for me. My experiences have been quite different than what was predicted by eye doctors.

So, don't you get hung up on some prediction that should have never been made. Your doctor does not really know when you'll see improvement. It could take time, but it could be tomorrow!

So, keep praying and following all the good advice you've gotten thus far. I know you wear goggles and use Restasis. Restasis is worth sticking with for a while. Have you considered cautery? This may work out better for you than plugs. Kcoffiner, you still have options.

You are too young to let this get the better of you. Do consider trying an antidepressant if you feel your mental state is getting in the way of living your life. And don't give up hope. There is a "Dry Eye Triumphs" forum on this bulletin board. It's been a pretty active place and it's only been there a week or two. There is no reason to think we won't see you there sooner than later.

My best to you.

Diana

Kcoffiner, i would print those words....keep hoping, I'll pray for you too

[Rojzen]

palliation is crucial

Dear kcoffiner - - Yes, hold on to those words of hope and defiance. . .Doctors have no idea how serious the consequences can be of their overstating what they know and don't know. . .Try to fight the natural tendency to place heavy credence in the white coats. . .

At the same time, make sure you are doing everything possible to PALLIATE the symptoms, so that you can read, watch TV, and do anything else that will re-connect you to your life as you knew it. Are you wearing goggle/moisture chambers during waking hours, for example? Using these enabled me to read again, after my first 6 months, or so, of the disease. . .From reading came all else: Access to knowledge, to spiritual guidance, to my own historical range of emotion. . .

It will be easier to take more palliative steps if you do so KNOWING that you may still be cured! Palliation is not giving up. . .It is simply buying time, and keeping yourself ready for the breakthrough. . .If I have missed your history, and you are already wearing moisture chambers, please forgive my oversight. . .but also move forward, nonetheless, to ADDITIONAL measures. . .

Does it help to know that 9 years ago, I could not keep my eyes open enough to watch TV, walk outdoors, or read. . .and that now, after a few months on FreshKote, I am occasionally going outdoors without moisture chambers, wearing regular, pretty/stylish glasses? Who would think that 9 years of no progress could be followed by improved ocular surface health? And yet it HAS happened!

Sending hugs and loads of optimism--