I need help

[iwormser]

Hey everyone, I need some help and I couldn't think of a better place to get this information. Now I do not claim to be an expert or anything but I was asked to give a talk to a group of OD's on dry eye. Anyway as a patient I am familiar with the discomfort but I wanted to focus in a bit on the emotional distress that dry eye can cause, as I think it is grossly overlooked. Anyway I was hoping that some people could message me with their stories, or post here. I would never use names but just some information. I realize there are lots of stories on here, I have read most of them, but I want to only use what I have permission to use. Thanks for your help, and if for any reason this is inappropriate I am sorry.

[brd888]

What about this:
"Effect on Quality of Life
Patients with DED "dry eye disease" may experience symptoms so constant and severe that reading, driving, working, and participating in other vision-related activities of daily life are difficult or impossible. One utility assessment paper compared patients with moderate-to-severe DED with published scores of angina and hip fracture patients. As the symptoms worsen, patients’ quality of life is negatively affected. Patients with moderate or severe DED had a mean time trade-off score comparable to that of patients with moderate or severe angina. Patients with disabling hip fractures and monocular painful blindness had lower mean scores."

I find my dry eye doesn't prevent me working or doing hobbies but it really effects my ability to enjoy them

Regards.

[mary kenny badami]

Permission granted!

Any word you can share with your fellow docs about our situations will be much appreciated. I'm a big fan of "Dr. Holly's drops," as I posted on this BB recently. Here's the link: http://www.dryeyezone.com/talk/showthread.php?t=6522

Because you're interested in focusing on the emotional distress angle, I'll send you a private message with a link to a longer narrative.

Patients have different -- and absolutely legitimate -- reasons for wanting anonymity, but given my personality and health history I have actually found it cathartic to post here and elsewhere about my post-Lasik woes, as well as my quest for remedies.

Thanks for asking permission; I hope that your talk goes well!

[blackberry]

My Dry Eye

I am so glad you are going to speak to the medical profession about this issue. Thanks in advance for getting the word out. It's difficult to describe just how debilitating and painful dry eye is to people who have never experienced it. For me there was:

Fear: During the worst of my dry eye periods -- I'm a LASIK survivor -- I was in constant pain. It was difficult to do simple daily tasks -- reading, watching TV, going outdoors. I began to fear doing things everyone else takes for granted -- will my walk be cut short by that slight breeze? Will I need to leave the movie early because my eyes hurt? Will I pay for this airplane ride for days with a terrible bout of dry eye?

Anxiety: My dry eyes also made me very anxious about the future. What if my condition gets worse and I have to quit my job? I support myself, and was right on the edge of having to start taking sick days. Somehow I managed to function at work, but it was very difficult. Some people, of course, do lose their jobs -- people with families, children and mortgages.

Depression: I also got very depressed; I felt that I had chosen to have this surgery and was in some way to blame. I felt like no one understood the pain I was in, and so I never talked about it. A sense of isolation only made things worse. This site helped me enormously. Even though I felt that I was unable to articulate my feelings very well, it was comforting to read the posts from people who were ahead of me on the path.

Anger: I was, and still am, very angry at the LASIK doctor who did this to me, though less so than before. He was not at all compassionate or understanding. It is difficult to comprehend how a system remains in place that allows doctors to maim people for money.

Lack of sleep: Eye pain woke me about three times a night for about a year. I'd dose myself with eye drops and try to get back to sleep. This lack of sleep made all my psychological problems that much worse.

This is a short description of my roller coaster ride. Hope it helps in some small way. Thanks for listening and have a great presentation.

[liz56]

Feel free to look at and draw from my blog entries, though I spend more time talking about the process of diagnosing and treating more than my problems with dry eye. My problem is with recurrent corneal erosions, due to a combination of dry eye and EBMD / ABMD / Map-dot-fingerprint Dystrophy.

I completely agree with Blackberry. Those things on the above list are horribly disruptive and have a huge impact on one's quality of life. I would also like to add that missing work due to these problems is really frustrating. It compounds all of the above problems, because most of us need to work just to live. Some people leave jobs because of this condition.

I'd also like to add that I had a terrible feeling of isolation, and I felt helpless and defeated. No one I knew had these problems, and doctors just gave me eye drops when I complained, as if it is not a big deal. So, it made me feel like I was complaining about nothing and that I should stop thinking and talking about it, which was impossible, because I was so afraid to sleep that I would obsess about what would happen each night and what I could do to prevent an erosion. Even once I found compassionate people, there is only so much that they can do. Dry eye is life altering.

Thanks for getting the message out!

--Liz

[iwormser]

thank you to everyone

Thank you to everyone who sent me their stories. I have to say when i finished my talk you could hear a pin drop. We talked about not only the psychological impact of dryness but we talked about those treatments not in the mainstream, including the work of Dr. Holly. Overall went pretty well, and even gave a great plug to this website. So thank you everyone!

[blackberry]

Talk

So glad your talk went well. It's the sort of thing that needs to be done -- educate these doctors about of the possible adverse effects of their work. Thanks again for getting the word out.

[mary kenny badami]

thank YOU for saying thank-you !

To Doctor iwormser, many thanks, not only for doing this project but also for checking back in to let us know of the result.

So, if I understand you correctly, by the end of your presentation and discussion, there was "not a dry eye left in the house"?
( sorry -- couldn't resist -- I spent most of the weekend in the company of a five-year old -- 'nuff said!)

[Rebecca Petris]

Thank you to everyone who sent me their stories. I have to say when i finished my talk you could hear a pin drop. We talked about not only the psychological impact of dryness but we talked about those treatments not in the mainstream, including the work of Dr. Holly. Overall went pretty well, and even gave a great plug to this website. So thank you everyone!

You have done a real service to the dry eye community by educating ODs about these things! I'm sorry I didn't help when you posted initially (musta been a busy week or something) but I am glad you got some stories from people here. Thank you so very much!