A bit of a sad rant, I guess.

[ishkane]

I guess dry eyes is considered to be one of those "invisible disabilities" - aside from red eyes, there's not a lot that gives it away; it's not like a broken leg, for example. Which makes it hard (at least for me) to get people to understand and even acknowledge that there's something wrong. I've pretty much given up on doctors - half of them have looked at me and thought I was making a big deal out of nothing; the other half, while they're sympathetic, really don't know what to do or push steroids on me (I did one course of lotamax, which helped immensely while I was on it, but my eyes went right back to the way they were once I went off).

My family is even less sympathetic than the doctors. My parents, like some of the doctors I've seen, think I'm making it up/making a big deal out of nothing. Honestly, their lack of caring has had such an impact on how I'm handling this (I was diagnosed with MGD about a year and a half ago and am now dealing with a lacrimal issue in my right eye) - which has been poorly. I'm definitely so depressed over this. I spend all of my waking hours obsessing over my eyes because they hurt so much; really, sleep is the only time when my eyes don't bother me.

I don't know what the point of this post is.... maybe just looking for some understanding, bc I know you're going through something similar. I don't mean to sound so woe is me, but I don't know, things suck right now.

Anyhow, I appreciate your listening.

[Jenn1]

Hi Ishkane,

Dont feel all apologetic about the way you are feeling, we all know how hard all of these eye issues are with day to day living and even sleeping. I am sorry your family are being unsupportive right now and they arent even trying to see things from your point of view it seems. Maybe your family should come on here and talk to different people about their experiences with eye issues and read some of the distressing posts by them. I guess it doesnt help people like us when even our eye specialists make out that our problems are minor and that we are to just get on with it and deal with things on our own........, no wonder the rest of our families or communities dismiss us as feeling sorry for ourselves.

I remember recently having to ask for some time to sort my eye irritation out with a local educational department, they went on about how they cant be flexible and that other students manage ok. I wasnt happy with the response and tone of the worker there so I just politely told her straight that in case she didnt already realise...., yes I am not blind and yes i am not partially sighted, BUT and this is the main issue here.... unlike the latter groups, I am in constant pain and have constant irritation and nausea and headaches and light sensitivity and weather intollerance and the rest day in day out and at night 24/7!! This worker was gobsmacked and apologised and hadnt realised the enormity of the situation and just because something is dismissed as 'dry eye', its anything but that! I think you need to get the enormity of the situation through to your family, if not already and that eye problems can affect us all to different degrees e.g. some can work full time, some part time, some cant work at all or study, others can barely manage to live day to day and others cant even go out for long due to the pain and anxiety and depression and panic attacks and irritation they suffer and would rather be at home where they can just hide or be comfortable.

Its good to let it all out, we've all done it and continue to, so dont feel bad, I find it amusing as I can relate and remember dont give up and things can get better. You do what is right for you at your own pace and let everyone else moan, these are your eyes and you know what you need to do to help them heal.

Chin up!

[Faith1989]

Hey.

I know how you feel. Everything so far has made my eyes much worse. Right now I'm using Lotemax to help with the redness, and Restasis as well as doxy 100 mg daily. Honestly the inflammation is at its worst right now.. it started again about a week ago. I kinda feel at an all time low right now...

[No tears in ATL]

Ishkane, sending kind thoughts your way. I have gone through my share of doctors in hopes that someone would listen. I have come to the conclusion that unless the doctor himself/herself has actually suffered dry eye, there is no way they can understand the pain and how isolating this condition can be at times.

Believe me, I'm still searching. I guess the assumption is that because my corneas look fine, and I'm not going blind, then drops will solve the problem. But yea, I burn every day, my eyes have giant veins, I feel like I scare small children...it sucks.

Always remember that you are NOT the one with the problem, you are NOT overreacting, you are NOT being a wimp or a whiner, no matter how dismissive or condescending a doc can be.

I don't mean to add negativity, just thought it might help you to know that others are experiencing the same thing.

[ishkane]

Thank you for your kind words - they definitely make me feel better

It seems like so many people suffer from dry eyes that the more severe cases get lumped in with mild ones. I've lost count of the number of times someone has said to me, why don't you just use drops. My mom will say to me, why do *you* have dry eyes, you're so young! Gee, I wish I knew!

It's also hard not to get your hopes up when you think something new is working, only to go back to "normal" a week later. And the most crushing thing is that the MGD that I was suffering from last year has pretty much normalized itself - it's the new lacrimal issue in my right eye that's causing me so much pain this summer/year. I almost feel like it's destined never to get better. And apparently, the only course of treatment is restasis (according to my doctor). It's very one steps forward, two steps back...

[Jenn1]

It's very one steps forward, two steps back...

^Think of it as a challenge, not failure, besides things could be a lot lot worse! We sometimes get mums on here with kids with dry painful eyes and other serious conditions, so I am greatful I havent much more to deal with. Can I ask what caused your eye issues e.g. medication or lasik and what type etc..? Glad you feel better.

[ishkane]

^Think of it as a challenge, not failure, besides things could be a lot lot worse! We sometimes get mums on here with kids with dry painful eyes and other serious conditions, so I am greatful I havent much more to deal with. Can I ask what caused your eye issues e.g. medication or lasik and what type etc..? Glad you feel better.

I'm not entirely sure. I've never worn contacts, haven't had lasik, etc. I was diagnosed with dry eyes in my early 20s... but it must have been a *very* mild case bc I was able to get away without using anything for years. A couple years ago, I noticed my eyes were really red and so I started using over the counter drops (the genteal type, not visine), like 50 drops a day, they were *that* dry. I didn't know about preservatives at that time, so I wonder if it contributed to making my eyes worse? I'm not sure. I have had a number of blood tests that show that I'm ANA positive, so that might also play a role in my dry eyes. So many variables!

And you're right... I should be thinking of it as a challege vs a failure (as I'm wont to do, unfortunately). Thank you for reminding me of that

[Jenn1]

I'm not entirely sure. I've never worn contacts, haven't had lasik, etc. I was diagnosed with dry eyes in my early 20s... but it must have been a *very* mild case bc I was able to get away without using anything for years. A couple years ago, I noticed my eyes were really red and so I started using over the counter drops (the genteal type, not visine), like 50 drops a day, they were *that* dry. I didn't know about preservatives at that time, so I wonder if it contributed to making my eyes worse? I'm not sure. I have had a number of blood tests that show that I'm ANA positive, so that might also play a role in my dry eyes. So many variables!

And you're right... I should be thinking of it as a challege vs a failure (as I'm wont to do, unfortunately). Thank you for reminding me of that

Since your ANA is positive, have they told you what the likely diagnosis is or condition? I was going to mention checking for autoimmune diseases and your thyroid, even though they can come out normal this doesnt mean such conditions are not affecting a persons eyes so its always good to monitor any changes and keep a record just in case you or the specialists miss anything. Say for example, I was told I have bleph and mgd, but after months of wondering what was wrong with my eyes, one eye started to bulge slightly..... meaning some thyroid related issue, even though my results are 'normal' thyroid eye disease can occur, even if its very mild (the irritation isnt mild believe me!) My specilaist refuses to diagnose me with thyroid eye issues, so i asked him why my eye has bulged or moved slightly, he wasnt happy i was challenging him but he knows as well as I do that bleph and mgd doesnt cause eye protrusion! So my next appointment in a few months shall be even more fun as I will be armed with pics and info and more questions, round 2!

You basically need to find out whats causing your positive ANA result and what if any diseases may be contributing to your dry eyes and research through the internet if you have to like this:

http://www.uptodate.com/contents/ant...ond-the-basics

You never know, once they find the cause and you start treatment you may well have less if any eye issues left.

[LaDiva]

Really understand how you are feeling. Jenn is right about the ANA test. Sounds like something else is going on, and a follow-up on that might be just what you need. Like you, I am really tired of people asking "have you tried eyedrops?" Hah. They mean well, but really don't understand. Good luck to you, and keep us posted about the ANA.

[dryeye4ever]

i know how you feel when you talk about dry eyes ppl think you just need drops and its a small problem. Being irritated 16 hours a day isnt easy at all and i would say sleep isnt all that bad. Its rly rly hard and i shud have known what is the worse that can happen to our eyes before now its too late. This is when education steps up. I really didnt know what was dry eyes but I could bet if i Lived in the Us i would known what really dry eyes is. I have never paid attention to my eyes before because we live in a materialistic world. Dumb me.

[robster]

I don't think you can entirely blame materialistic possessions for dry eye. People have been getting dry eye for hundreds of years long before computers or TV were ever invented. Certainly all these modern gadgets don't help matters but I think some people like all things in life are more genetically predisposed to getting dry eye than others.

[farmgirl]

Positive ANA could signal Sjogren's as well, that is part of what has caused mine...keep hunting and don't give up until you get answers because the treatment will depend upon the cause. If you would like your family to be able to appreciate just exactly how dry your eyes are I recommend a long (5 hrs+) road trip. It was a eye opener for both my friend and my husband to see just exactly how often I put drops in...they both gained a much greater appreciation of just how dry my eyes are and how much they bother me....cheers....F/G

[Guest]

It was a eye opener for both my friend and my husband to see just exactly how often I put drops in...they both gained a much greater appreciation of just how dry my eyes are and how much they bother me....cheers....F/G

Yes, there's nothing better than spending a prolonged period of time with someone to get a better idea of what they go through.

I order my eye drops at work and have been ordering a 3 months supply at a time - when 2 CASES of eyedrops arrive, plus over $300 of Salagen, over $300 of Restasis etc, it's a pretty good clue that I am not just an average dry eye sufferer. I could use less eye drops, but then I'd have to sit home with a cold cloth over my eyes most of the time and would be incapable of working at all... so I suppose you could say the drops pay for themselves in the form of enabling me to work.