New & Struggling with this Life Change!

[JAH1973]

Hello! I am new to this site and very thankful to have found this site. Reading the postings have been so helpful in my daily struggle with this new lifestyle. The support of the members is amazing!

I am a 35 year old female from a small town in Ohio where everyone knows everyone's name. The people have been so very nice, but nobody has ever experienced this disease in the magnitude that I have experienced over the last four months; therefore they are unable to offer much in the way of relating to the "handicap."

As an manager of several people and one who works on the computer all day in my position, I have found dry eye to be very, very disabling in my day-to-day activities. My job also requires that I travel to various locations and that in itself is now a great hastle. Many have made comments that I should learn to deal with it and grow up... gotta love the sympathy...

I am also a mother of two boys who are involved in several activities that requires a normal day of 10 hours (Work & Commute) to be 16 hour days. By the end of the day, the eyes burn like crazy!

I am not sure if this is the norm, but I have been unable to tolerate fragrances, chemicals, make-up, etc. in any form. In those times that I did attempt to wear make-up and/or hairspray, the eyes would either burn or dry out to the point that my face would feel like it was numbing up. I have tried hypo-allergenic (sp?) fragrance free hair products, Several types of make-up, and would not even think of spraying perfume. At one time, I would have been thankful not to have to clean my home, but now... Cleaning products just "kill me."


For more specifics on medications, testings, etc, see my post titled "Bizarre Symptoms".

I really look forward to any advice, support, and friendships that my develop as a result of this miserable journey...

[kitty]

Welcome! I think the hardest part of having DES is that no one relates. It is an invisible disability. Most people hear "dry eyes" and they act like "so, get some Visine". I prefer to call it ocular surface disorder, or better yet, keratoconjunctivitis sicca. That will get some sympathy, until you explain what it is in lay mans terms! Have you been evaluated for ocular rosacea? Forgive me if that is contained in your other post, I have not yet read that. The only makeup I can tolerate is bare minerals, and even then I have to keep it well away from my eyes. One eye doctor told me, if you can smell it, it is still there. In other words, keep eyes closed until the smell of the perfume and hairspray go away. It might be your burning is from particles of those products. Also use drops before and after hairspray, perfume and anything else that might get close to your eyes. You will find lots of information and support here. This site is the only thing that got me through the first year or so of my diagnosis of DES. Here, people do understand!

[JAH1973]

Thank you for the reply!

Although I had tried Bare Essentials in the past, I have not tried it since DES. I think I will attempt the product again... I do not recall, but does the product have any fragrance in it, since that seems to be what irritates my eyes.

Is there any particular hairspray that you use since I have spent the last several months with my hair in a pony tail and/or bun (which is not very attractive especially with glasses and no makeup).

Perfume: I love, love perfumes! Are there any particulars that irritate you? I do know that I have a horrible time when others wear Bath & Body W***s.

I have an appointment with an allergist/immunologist on Tuesday at a large specialty clinic on Tuesday. Not sure if he will know about ocular rosasia(sp), but I will be sure to ask.

Thank you so much for your posting.

[kitty]

Bare Minerals has no perfumes, dyes or anything else that could irritate. The only issue is the powder-like substance which can get in the eyes if you are not careful. I stopped using perfume about the time the DES hit, nothing to do with DES. I use Loreal Studio pump hairspray. Like I say, you just need to keep your eyes closed and leave the area where you sprayed it until the particles are gone from the air. Maybe step outside to spray, keeping eyes closed then come right back in?

[Delta]

I just joined the site. I have been suffering with dry eyes and just had 4 year anniversary sorry to say.

Learned lot about it in meantime, again sorry to say.

Your post reminds me alot of a situation I had read before of another person's condition.

Have you considered rosacea or other immune problems?

[Lucy]

I just joined the site. I have been suffering with dry eyes and just had 4 year anniversary sorry to say.

Hi Delta-
Since you are having your "anniversary" may I ask what led to your state of dry eye? Welcome to the board and I hope you find help here. Lucy

[JAH1973]

Thank you so much for the welcomes!

I have been tested for many, many things.... MS, Lupus, and a whole panel of lab work was done. Not absolutely sure what all was tested. Need to double check on that.

I will be going to an eye specialist on the 16th of this month. It took over two months to get in. My ophalmologist claims that he specializes in Dry eye. Here's hoping.

[JAH1973]

Like Lucy, I am curious as to the cause of your Dry Eye. Let us know.