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Jeanne's Story

    My story begins in the middle of the night, while away at college.  I awoke with a sharp pain in my one eye.  I had no idea as to what had happened.  I thought that maybe I smacked my own eye by accident while I was sleeping.  The  re flux tears were flowing so rapidly out of my eyes that I got very frightened.  The pain just wouldn't go away and was so intense it felt as though someone had punched me in the eye.  I took an aspirin thinking that it would go away but it didn't and so I drove frantically all the way home with a wet rag on my eye.  After a while the pain went away and I thought that was the end of it at age 22 until....

    A few months later it happened again while I was at home during a weekend.  I was in so much pain that I went to an optometrist to see if I scratched or damaged my eye.  He looked at my eye with some colored drops and told me that I just had a dry spot which could have something to do with allergies and to use eye drops.  That was about 5+ years ago and the problem did not stop.

    I come from a small town with very few doctors or specialists.  Since that time, I have moved away from home and closer to a large city where I was finally diagnosed by my primary care doctor that I had some form of arthritis disease.  She didn't remember what kind, but gave me a referral to see a Rheumatologist.  As soon as I told my rheumy about the symptoms, he told me to get a blood test for Sjogren's Syndrome.  I had never heard of this disease before in my life and was very fearful at first about it and now I just live one day at a time.

    I'm now 28 years old and living with this syndrome as best as I can.  I currently am battling severe dry eyes, fatigue, and dry skin.  My mouth is also starting to get dry.  My quality of life has been reduced due to the corneal ulcers that I get about once a month.  When I get the corneal ulcers on a work day, I have to miss a few hours of work or the whole day depending on how severe they are.  I put myself through college and am greatly depressed by the fact that I am now limited as far as my career is concerned.  I always thought that I would be a manager someday or even own my own business.  Since having this syndrome, all my hopes and dreams of becoming a great success at a career are gone.  I miss not being able to stay up until 1:00 a.m. to watch a favorite movie on t.v., or being able to work on cross stitch for hours at a time, or walking outside with my husband when I want to and not having to worry about too much wind, etc.

    My husband has been very supportive of me in just about all aspects except the fatigue. He has a hard time understanding why I am so tired when I look like there is nothing wrong with me.  However, he has gotten up in the middle of the night with me when I get a corneal ulcer to try to help me and I truly appreciate him.

    Most of my family is very supportive of the disease.  However, some of them think that it isn't a big deal and don't understand why I can't do this or that.  I deal with it as best I can and try to avoid having to interact much with the ones that aren't supportive.

    I think that this syndrome robs a person of their quality of life and is thus a very emotional disease.  However, since getting the disease, I have learned to take others more seriously when they tell me that they don't feel good or are tired.  I appreciate the simple or small things in life much more than many people, and so I and others like me get more out of life itself than most of those that are healthy.  I think that the best advice I could give someone is to try to have hope for some sort of cure and to take one day at a time.

Story Copyright © 1998-2007 Jeanne D.

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