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Gayle's Story

     I was a very active and content person in the spring of 1993.  My husband, son and I had just returned from a two-week vacation.

     A few days after we returned home, I woke up one morning to find the right side of my face and neck swollen and very painful.  It was so severe that I went to my doctor right away and he noted that my lymph nodes were all swollen as well.  I had a fever, so he gave me a powerful antibiotic.  Within a week I was feeling pretty good, so I kept some appointments to have dental work done for the next two weeks.  On the day my dental work was finished I noticed that my mouth was very sore and my tongue was burning.  I could find nothing to relieve it and made several trips to the doctor and tried many treatments within the next three or four weeks.  The doctor gave up trying to diagnose and gave me 10 days of Prednisone.  My mouth got better-for two days!!  Then my problem returned.

    Following this seemingly dramatic beginning, for the next two years I was sent from doctor to doctor as my symptoms increased.  I became very fatigued, had rashes all over my body, developed Raynaud's Syndrome and my mouth continued to be very painful and dry.  At a very well know university near me, I was diagnosed with possible mercury poisoning.  No treatment was successful at all.

    I was then sent to a research hospital for tests and saw a Rheumatologist.  By this time, my joints were all so painful I could hardly walk, some joints were swollen.  My mouth was worse than ever and my skin and eyes had become very dry and itchy.  I was extremely fatigued and had developed excruciating headaches.  I had also developed flushing of the skin which made my skin very red and hot for hours at a time.  I was tested and biopsied in every way possible and was diagnosed with Sjogren's Syndrome.

    At the time I thought, 'finally! we know what it is'.  Little did I know that having a label to name my illness made no difference at all.  The only real treatment available was periodic use of Prednisone, self care with various products to relieve symptoms and antidepressants to help with sleep and pain.

    It took me a very long time to get to the point where I became used to my mouth being so painful.  My other symptoms would go into remission for weeks at a time but my mouth pain and dryness were always with me.

     It's been 7 years now since I woke up with a swollen face.  I have learned to look for my own help, to set limits with friends and family, to accept that I will always have this illness and to not allow it to rule my life.  These have all been difficult challenges.

    I do my own research on products that help with symptoms.  I attend a support group, and I stay very busy doing the things that I can still do when I am having a good day, such as amateur photography, web design, selling collectibles on e bay and work in my greenhouse.  I try to get some exercise every day, although regular repetitive exercise is not advised by my doctor.  I rely on God and I trust my family to understand that I can no longer do so many things.  I take a long nap every afternoon and still sleep 8 hours at night.  Fatigue is my constant companion.  I drink water, water and more water.  I take an antidepressant drug and regular pain medication as well as aggressive medicine for headache and nausea when the need arises.  I am usually hospitalized a couple of times a year with the headaches which are caused by inflammation of connective tissue.

    My family?  Well, I'm very lucky to be able to have a housekeeper come in once a week and clean house for me.  My husband shares the cooking and he does 90 of the grocery shopping and errands.  I shop for clothing, etc. through catalogs.  My 87 year old mother can't rely on me for much of anything except visiting.  I have three children ages 30/28/18.  My children are very understanding and helpful.  I have three lovely little grandchildren that I can't pick up and hold in my arms.

    The most difficult part of this disease other than the pain, is that it is a hidden disability, and most people have never heard of it.  Sometimes it is difficult for others to understand how life-changing it is.

    I accept that my life will be what I make it within the limits of this disease.  I try very hard to remember to take things one day at a time.  I keep the serenity prayer on my mind and in my heart a great deal of the time.  "God, give me the SERENITY to accept the things I cannot change, the COURAGE to change the things I can, and the WISDOM to know the difference."  
   

Story Copyright © 2000-2007 Gayle

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