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Christie's Story

    Hi! My name is Christie and I was born in 1951. For most of my life I have been in excellent health.  But about four years ago I began having trouble with my eyes.  I had worn disposable contact lenses for many years without any difficulty. But suddenly they began to bother me.  After a few days the lenses would get "filmy" and I'd have to throw them away and get out a new pair.  I mentioned this to my optometrist and he asked a strange question: "does your mouth get dry?"  At the time it didn't.  But now I know what he suspected was wrong with me.

    One morning I woke to find my eyes were red.  I figured I must have contracted a case of pink eye and my doctor referred me to an ophthalmologist who confirmed it.  He prescribed eye drops that I used for several weeks.  My eyes seemed better.  But the redness soon returned.  I went back to the doctor and this time he said I must be allergic to our cat or dog.

    Now, this seemed strange to me.  I've had cats and dogs all my life and never had a problem before.  My son has allergies and all he has to do is get near a cat and he starts sneezing.  The eye doctor prescribed a different eye drop.  I used it but didn't notice a change.  My eyes also burned a lot, especially at night.  So I made another appointment.

    This time I saw the doctor's assistant.  She said I was suffering from dry eyes and prescribed an over-the-counter eye drop.  I used it for several weeks but there was no change in my red, burning eyes.

    I work as a newspaper reporter.  My "beat" is city and municipal news.  That means a lot of night meetings and lots of computer work.  As the day would progress, my eyes would burn more.  Some nights I would come home from work, wrap ice cubes in paper towels, and hold them against my burning eyelids to relieve the pain.

    Finally I went to see another doctor.  He said I had some type of virus and prescribed more eye drops.  I returned to him every month for about 8 or 9 months.  He kept saying, "it's almost gone," and would prescribe yet another eye drop.

    My eyes were still red, still burning.

    I had a nagging feeling that there was another reason for my problem.  One day I made an appointment with another, a FIFTH, eye doctor.  I put all the eye drops I'd been told to use over 30-month period in a plastic bag.  I told the new doctor my symptoms and handed him the bag.  "I've used all these and nothing has helped," I said.  He did a Schirmer test and said, "You have Sjogren's Syndrome."  I had never heard of it.  His nurse had to write it down for me.  I felt relieved there really was a reason why I was having such problems.

    For the next two years I used artificial tears in my eyes.  They helped some. But usually by the end of the day my eyes burned so much I couldn't do the things I like the most: reading or cross stitching.

    I knew nothing about the disease other than it caused my eyes to hurt and my mouth to be dry.  One night I sat down at our new computer and typed in Sjogren's Syndrome."  My search produced a whole bunch of information.  I joined the National Sjogren's Syndrome Association.  I learned there is a support group in the Pittsburgh area.  I have attended their meetings.

    The doctor who diagnosed me said there was a procedure to close my punctum ducts, keeping tears in my eyes.  I finally decided to have the procedure done.  First I had the lower ducts "plugged."  There was some relief.  Instead of using eye drops 7 or 8 times a day I was able to use them 3 or 4 times.  So I went back and had the upper ducts plugged.

    What a difference!  Now I have so much moisture in my eyes people think I'm crying all the time.  Instead of carrying artificial tears wherever I go, I'm wiping away tears.  I guess there is no happy medium.  But I prefer too many tears than not having enough.  For the first time in years my eyes don't burn.   I would strongly suggest anyone with extreme dry eyes consider this procedure.

    Now that I have read much about Sjogren's I realize that I have other symptoms related to it.  For many years I have been allergic to the sun.  I use a strong sun block otherwise I break out into red, itchy bumps.  I have very tender spots on my body, particularly around my rib cage, shoulders and lower back.  It hurts to be touched in those areas.  Lately I have had some digestive problems and experience quite a bit of acid re flux.  I can't seem to pinpoint what foods cause this and what foods don't.  I've read that Sjogren's can move down into your lungs and I have difficulty catching my breath if I exert myself.  I lose my voice too.  I sing in our church choir and after our weekly 90 minute rehearsals I can barely talk.  I also have had some hair loss and achy joints.  My right ear aches at times or feels as though there is water in it.  Loud noises bother me.  But when I read about others with Sjogren's I realize how lucky I am.  I have Primary Sjogren's which means I don't suffer from arthritis, fibromyalgia, or scleroderma.  I don't have difficulty sleeping nor do I suffer the crippling fatigue some people do.  I fight dry mouth with plenty of liquids and keep water bottles at work or in my car.  I use a warm water humidifier in our bedroom at night to raise the humidity and help keep my nasal passages moist.  I'm not always good at maintaining a healthy lifestyle.  But I do feel my best if I take vitamins, get enough exercise and avoid caffeine.

     I've heard it said one of the most difficult things about Sjogren's is convincing other people you are sick.  Several months ago I wrote a lengthy article about Sjogren's Syndrome for the newspaper I work for.  I wanted to share the information I had gathered about Sjogren's and also explain my own frustration in being diagnosed.  Since the article was published I have had several calls from women who have Sjogren's.  But the best response I got was from a woman who had been suffering from numerous symptoms related to Sjogren's.  She had been unable to get anyone to listen to her.  She called me the day she made a doctor's appointment and said she planned to take him a copy of the newspaper article because she was sure she had Sjogrens.  Like me, she felt an enormous relief knowing there was a name for her malady and that it wasn't all in her head.

Story Copyright © 1998-2007 Christie

Page Design Copyright © 1998-2007 Lynne Messina