I'VE HAD "DES" FOR 30 YEARS : (

[Littlepammie49]

Thirty years ago my eyes felt like they had been put into a Pizza Oven...dry...dry...dry... I went to the eye doctor and was told that I had DES and scored a 0 in one eye and a 2 in the other eye (dry eye test). I was very miserable especially in the winter time as I live in New England where the winters are cold and dry. Eye lubricants only worked a few minutes for me, so I got the plugs. They help somewhat but, not alot. I've tried every drop known to man. The only things that really help me are a humidifier and hot humid weather I started taking Omega3 Fish Oil Tabs two months ago and they do nothing for me. Fresh air seems to help alittle.

I think it's wonderful that there is a website where we can share our stories and try to help eachother. People who do not have DES just do not understand

DES isn't much fun, is it !?

[Rojzen]

that's for sure

It's SO true that people who have not experienced our particular kind of suffering just have no idea what it's like, and how hugely it can affect our lives. . .This is no small thing, since this lack of understanding directly affects the quality of care we find, and the emotional and other resources family and friends are willing to devote to supporting our efforts. . .We're at a relative disadvantage, compared against the situation of others experiencing disorders that are obvious to onlookers . . .

Thirty years is way too long for any person to have to struggle with this. . .The courage that this must take is way beyond what I've personally summoned, so far, after only about 10 years. . .

I'm with you, on not receiving benefits from the Omegal oils. . .But I am someone who has recovered a near sense of normalcy through moisture chamber protection. . .Do you wear protective eyewear, dear friend? Please let us know. . .If not, have you yet checked out the Zone's Shop, for its selection? If that selection doesn't fit your needs, there are additional eyewear options to explore here in postings. . .

Others will chime in next, for sure, about nighttime protection that aids daily recovery, and on a wide range of therapies going on out there. . .

Let us know, moreover, whether you've tried any Rx drops, or any of the Dr. Holly product line, like Dwelle or FreshKote. . .

Hugs are coming your way. . .

[Littlepammie49]

Rojzen... I didn't expect to get a reply so soon. Thank you! I have not tryed a pair of goggles to date. Can you recommend any? Money is an issue. Yes, I have tried Dwell, like all the rest of the drops, they only work for a VERY short period of time. This time of the year I have to put drops in about every 20 minutes or so when not at home with my humidifier.

Thank you for saying I have courage. You just do what you have to do! Because, of my DES, I absolutely HATE winter!!! The last thing I want to do is go outside in the cold and dry air and do ANYTHING!

I have a VERY wonderful boyfriend who I've tried to educate on DES but, it was hard. He just doesn't understand. He heats his house with coal and it gets pretty hot and dry. I had to tell him if he didn't get a humidifier, I COULD NOT be able to come over. He said that he didn't realize that it was that bad. I said, YES IT IS! Gee, I just had a thought. He is doing his Christmas shopping. Maybe I could suggest Tranquileyes as a gift for me

I've always known that I belonged on a Tropical Island with the humidity. New England has some pretty humid summers which I LOVE because, my eyes love it

Thanks for the Hugs my new friend

[Rebecca Petris]

I have not tryed a pair of goggles to date. Can you recommend any? Money is an issue. ... This time of the year I have to put drops in about every 20 minutes or so when not at home with my humidifier.

Onion goggles. They are $20 and for most people form a pretty good seal. I think that almost anyone who is feeling the need for drops that frequently will be better off in a moisture chamber - both because it will improve comfort and because it will reduce the need to overlubricate.

[Littlepammie49]

Thank you! I WILL get a pair $20 I can handle!

[Rojzen]

that's the spirit!

And if you need Rx lenses in your new goggles or moisture chambers, please check out the selection of Panoptx and Wileys here at the Shop. ..Plus, many of us are counting the minutes before Micro-Environment moisture chamber glasses, which will accommodate any prescription, come to market. . .Rebecca is totally on top of that, and we'll know as soon as the big day arrives. . .

Eager to hear how you do with the goggles, dear friend. .

It is interesting and heartening that simply wearing eye protection can extend tear break-up time for at least a short period after they've been on a while. ..A fortiori, eyewear can keep the tear on the eye steadily, in some cases, while being worn. . .The eyes then get a huge rest from the endless stress of drying out in most environments. . .I swear that there have been whole days when my eyes feel normal, in moisture chambers, even though my tear break-up time is sill 0 - 1 seconds. . .

[GeorgeT]

30 years of DES !! You are very brave.
I had MGD for 1.5 years. I've been through times when drops every 20 min. were needed.

I got recently another health problem which I pray won't become a chronic one. Many journal papers refers the life of patients with this chronical illness more difficult than the life of people who had a heart attack.

I consider DES more difficult............

Recently, with the help of this website I got moisture chamber googles on my prescription glasses. They help the most. Thanks to Rozjen. I also use a Water Mist rather than oily drops.

Could you describe a little more these 30 years? I am pretty much sure you won't like to remember but there are many of us sufferring .

BTW, my MGD is pretty bad now while I am in a two week trip to Austin, TX.I was in a better shape back home in Portland, OR where humidity is around 95%.

All best,

George

[LouSam]

30 years!

Littlepammie,

I have had this diagnosis for just over a year and- I wouldn't say that it has destroyed my life because the condition has improved since I moved to a more humid climate- but I do not appreciate or enjoy life anywhere near as much as I used to before this started. There are days when all I can focus on is how uncomfortable I am and how messed up my vision is (I am extremely myopic. This was entirely corrected with rgp lenses, which I now cannot wear at all). I often feel like nobody gets it and it is very isolating.

My question for you is- have you managed to live your life fully with this condition? and, if so, how do you do it? I really appreciate any words of wisdom, as I am often terrified of my future.

Thank you!!

[Littlepammie49]

Littlepammie,

I have had this diagnosis for just over a year and- I wouldn't say that it has destroyed my life because the condition has improved since I moved to a more humid climate- but I do not appreciate or enjoy life anywhere near as much as I used to before this started. There are days when all I can focus on is how uncomfortable I am and how messed up my vision is (I am extremely myopic. This was entirely corrected with rgp lenses, which I now cannot wear at all). I often feel like nobody gets it and it is very isolating.

My question for you is- have you managed to live your life fully with this condition? and, if so, how do you do it? I really appreciate any words of wisdom, as I am often terrified of my future.

Thank you!!

Gettin Better..... DES is very isolating Until recently I never knew anyone else with it. My very own daughter (age 37) now has it. She has been listening to me COMPLAIN all these years. Atleast I can help her and sympathize with her. You are right when you say NOBODY GETS IT!

I live my life fully in the summer time when it's hot and humid I am miserable in the winter time. I often feel the onset of depression when Autumn rolls around! My boyfriend thinks I'm crazy but, I've had to educate him! I think he finally GETS IT when I told him that I ordered a pair of Onion Goggles to wear at night!

How lucky that you were able to move to a more humid climate. I envy you. I wish I could do that but, I can't for many reasons. Quite frankly, I just do the best I can, turn my humidifier on high and drops...drops and more drops! And, pray that winter goes by VERY quickly!!!

[Littlepammie49]

30 years of DES !! You are very brave.
I had MGD for 1.5 years. I've been through times when drops every 20 min. were needed.

I got recently another health problem which I pray won't become a chronic one. Many journal papers refers the life of patients with this chronical illness more difficult than the life of people who had a heart attack.

I consider DES more difficult............

Recently, with the help of this website I got moisture chamber googles on my prescription glasses. They help the most. Thanks to Rozjen. I also use a Water Mist rather than oily drops.

Could you describe a little more these 30 years? I am pretty much sure you won't like to remember but there are many of us sufferring .

BTW, my MGD is pretty bad now while I am in a two week trip to Austin, TX.I was in a better shape back home in Portland, OR where humidity is around 95%.

All best,

George

Thanks for your support George. 30 years of feeling like my eyes were in a Pizza Oven (that how I explain it to people)...dry...dry...dry. Summer is better, I HATE WINTERS IN NEW ENGLAND! I am always MISERABLE!

Humidity around 95 % is a WONDERFUL THING I am VERY thankful for this website. Atleast now I can talk to others with DES. That in its self is so helpful