My Story-SO FAR

[kimby2007]

Hello:

I have posted before but here is my official story--so far--I am a 25 yr old female (almost 26 ) who started experiencing dry eyes after a contact induced infection on late May of this year. After going from doctor to doctor it was discovered that I quite possibly have Sjogrens syndrome. It has been 4 months so far and I have seen eye doctor after after doctor. I am currently on Plaquenil, Evocac, and Restasis. My rents are still in denial that I have an illiness despite my meds and appearance and my ANA over 5000. I have been plugged and have had plugs removed due to rubbing against the conjunctiva. Of all my symptoms dry eyes is by far the worst. It is nearly impossible to describe to someone who doesn't have dry eyes how debilating it can be. People tell me constantly that I am letting it get the best of me -which is true-but at 25 I feel like my life was ripped from underneath me. I see people my age going out and having fun. People getting married and moving on with their lifes. I just today gave my resignation from my job which I used to love and now dread because of the computer use. I am hoping that a few months off will give me some eye relief and also help me mentally cope with the hand I have been dealt. I know it can be worse in life but as I sit with eye packs over my eyes it is hard to imagine what worse is. It still hurts thinking that 6 months ago I was a normal girl and now I exist but really don't live.

Hopefully I can write again sometime down the road with better news. I look forward to those days.

[Rojzen]

validation; moisture chamber stopgap

Oh, dear compatriot! I couldn't have expressed exactly my own experience, 9 years ago, better than you have here described yours, which is SO well known to many of us. . .

Getting VALIDATION that you are dealing with something that is, at the moment, hugely debilitating, is, as you indicate, so important. . .Since your ANA is so high, do you not, at least, have a diagnosis of KCS (keratoconjunctivitis sicca) that you can flash before family and friends? Plaquenil is a heavy-duty drug, prescribed only when a rheumatologist feels confident there is active autoimmune disease. . .Should not THAT be enough, to convince those who should be standing by your side right now?

Have you gone to an eye doc who prides him/herself on taking on difficult DES cases? Rebecca has a practitioner list here at the Zone, and she and others seem to know who's doing the best work in various regions. . .It could be that the moment you get under the care of someone who actually KNOWS DES, and is rigorous and creative about it, you will feel you're on track to recovery . . .(Is travel possible, such as to Dr. Latkany?)

Yes, recovery. Recovery doesn't necessarily mean regaining normal tear function, or total corneal integrity. . .It just means getting back on one's feet regardless of whether some symptoms linger. . .That is to say that you can and will recover, because you can do so even while you continue the journey towards minimizing symptoms, and you are motivated to. . .

Have you tried moisture chambers or goggles? Forgive me if I missed that in an earlier post. . .I throw this out as a way for you to greatly reduce symptoms while you continue the search for just the right therapy for yourself. . .

If there is a support group in your area, it will appear in a directory here, or Rebecca will point you in the direction. . .

See you on the Dry Eye Shop moisture chamber/goggle page soon, I hope

[erinlins]

It does get better ---i promise

I have dry eye and I'm 23. When I first got dry eye I thought my life was over. However, stay out of those contacts and I promise it will get better. My eyes are almost back to normal!

[Judy]

kcoffiner, You are so in my prayers. Rojzen is right, things will get better! The treatments for your eyes are very helpful. Prayer helps. Venting here helps. Your dry eye friends help. As you begin recovery, you will feel some relief.... God Bless! Judy

[kimby2007]

My Story So Far

Thank you for your posts. As it is very likely that an autoimmune is driving my dry eyes I don't think staying out of contacts will solve my problem. I haven't thought of touching my contacts (>4 months) and honestly don't care if I ever do again. Initially I cared but now contacts seem so trivial compared to the rest of my problems. I started seeing Dr. L and although he doesn't believe in them he gave me a repeat Schirmer test and my scores were up. I know they are notoriously famous for their false positives but anything higher than 0 has to mean something positive with Sjogrens. I have heard some very positive stories about Restasis and SJogrens so I pray that I am in that group or at least get some relief. I am not plugged at present so there is always that option down the road. I tried moisture chamber goggles but Dr. L really doesn't want me to use those since he thinks it added to my puffiness.

I appreciate all the support and hope that one day I will look back on this and say that this made me a better person because I learned at a very young age how to appreciate the very simple things in life that people take for granted (walking outside, watching tv, going swimming).

Thanks again.

[calli66]

kcoffiner--Like you, I also have autoimmune-caused dry eyes. I have had very dry eyes for over 5 years, but just found out about the immune problem a couple of months ago.

The biggest help for me was using Genteal Gel at night (multiple times), plus TranquilEyes goggles. With all the meds you take, it'll take awhile before things calm down. Try again to get the plugs working. Maybe trying a different type or size would solve the rubbing problem.

Try to find a local Sjogren's Support group. I just went to my first this past Tuesday, and it was great to meet ladies of all ages, and hear how they've dealt with their symptoms, and exchange info about good doctors. It really motivated me to be more active and positive-minded about my condition. I have been relying on online forums like this one for years--to get info, ideas, and a feeling of community. But going to a support group meeting has an immediacy that is inspiring.

I got a copy of the most recent issue of "The Moisture Seekers" from the SS Foundation ( http://www.sjogrens.org/ ) which focused on the experiences of young woman with Sjogren's. And check out http://www.sjogrensworld.org/index.html
--there are young people posting to that forum, too--

Best,

Calli

[Shahara]

Living hell with dry eyes

Hey, I'm a 26year old sri lankan girl living in germany since 12 years!! Since about 5 yrs. I've been suffering with extremely dry eyes!! I don't know where it comes from, as I don't have any sicknesses, I did have eye infections due to hayfever a couple of years ago, but they weren't really severe!!
I eat healthy, don't smoke, don't use drugs, and then everything changed, when my eyes began to get dry!! 2005 my eyes were just unbearable, I consulted different doc's, no one really could help! early 2006 I got my upper eyelid ducts closed, the lower ones plugged! Which helped a bit, but the dryness was still bothering a lot! Then I got to know about restasis, now I'm on it since 17months, which did help! But still not really!! I'm scared, cos I can't take restasis forever! HOW LONG IS IT ADVICABLE TO TAKE RESTASIS? now I've reduced my dose to once a day! And then stop slowly!! BUT WHAT AM I GOING TO DO AFTERWARDS? This sucks.................!!!(:! Life is hell...living with dry eyes!! due to the headaches as well!! Hope for better medication in future!

Wathsala