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Jean's Story

       Hi my name is Jean, I am married with four grown children.  Between my husband and I we have twelve grandchildren.  I am a Head Cook in an elementary school, and really love my job.

       About six years ago, when I was in my mid fifties, my usually good health started to go downhill.  My arms and shoulders became very painful to the touch.  My mouth and eyes were very dry also.  My doctor had my blood checked, said that it didn't show anything wrong but it sounded like I had fibromyositis.  The symptoms were fatigue, insomnia, painful muscles, and sometimes depression can occur.  I read all I could on fibromyositis, which described the tenderness and stiffness in the joints.  I had to take off work for almost six-weeks because I couldn't function.

       I went back to the doctor who then told me my dry mouth was a lack of  vitamins , I who try to eat well.  What did I know.  I went and got some good vitamins.  They didn't hurt, but they didn't help either.  Soon after, my face on the left side began to swell.  I called my dentist thinking it was the tooth I recently had capped.  He took an x-ray and said everything was fine.  I went back home, AGAIN, with no answers.

       My husband and I tried to find some way to ease the pain I was having in the arms and shoulders.  We read that massage is good for the muscles in this case.  We started a massage program, it hurt so bad I wanted to cry.  I was feeling so bad at this time, that was when the panic attacks began.  I didn't know what they were, I felt like I was dying or losing my mind.  After seeing a specialist in that area, I was put on an anti-depressant.  The doctor explained to me that fibromyositis is a group of common non-specific illnesses characterized by pain, tenderness, and stiffness of the joints.  After being on the anti-depressant for a few weeks the pain started to subside, but the anti-depressant made my already dry mouth dryer.

       After a few more months I made an appointment with my doctor because of  joint pain.  He ordered blood tests which showed I had some arthritis.  That was no surprise.  I wanted more answers, but got none.  This went on for three more years.  Some good days, some bad ones.

       I was having ongoing ear problems over the past ten years, due to a narrowing of the eustachian tube, and was sent to another ear doctor by my medical provider.  I have had tubes put in my ears four times in that amount of time.  The doctor told me no more tubes because of scarring.  We got to talking about my dry gritty eyes and dry mouth.  He said, "You may have Sjogren's Syndrome".  I said, "What is that?"  I had never heard of it.  He explained it to me and asked me if I would want to have a lip biopsy done.  It would confirm if I had it.  The paper work was filled out, a date was set, and I was off to the hospital as an out patient.  I had novocaine put into my lower inside bottom lip and a piece of tissue was removed.  Then I had stitches put in to close the spot where the tissue was taken.  The tissue was sent off for a biopsy.  I was told I would know within two weeks.  I went to see the doctor after that time and it was confirmed that I had Sjogren's Syndrome.  I felt like a weight had been lifted off of me.  I wasn't dying or going crazy.  I had an auto-immune disease.  I could live with that.

       I went to see an arthritis doctor.  I told him what was diagnosed, and he said,"There isn't too much that can be done but there are a few pills that I can put you on".  Well those pills didn't work, except to make my legs break out in red blotches.  He took me off of that and I was on nothing for a year or so.  I decided to go back to see him, but had to go into Cleveland and wasn't too crazy about that since the weather was bad at that time.  He told me I should have been in sooner but I couldn't understand why, and told him so, in a nice way of course.  We talked and he said, "I  want to put you on a medication that I have other Sjogren's patients on".  I went on that and have been on it for about two-years now.  I take it once a week in orange juice, and it has helped my mouth.  It isn't as dry.  One draw back, I have to have my blood checked every six weeks to see if it is affecting my liver or whatever.  The lesser of two evils  I guess.

       The one thing I regret, is that I wasn't diagnosed sooner.  When my ear doctor told me I had Sjogren's , my mother,
my best friend, was dying of ovarian cancer.  I thank the Lord for my wonderful husband who held me together through this bad time.  I will always be grateful to him for that and for always being by my side.

       Through the computer I have found some wonderful information on Sjogren's, and also some friends who share this disease.  So, some good things come out of the bad things.  There is so much in this world to be thankful for.   God gave us a beautiful world to live in and so many wonderful people to enjoy as friends.  Knowing we are not alone in this makes everything a little easier somehow.

" So hang in there, put a happy smile on your face.  It works every time."

Story Copyright © 1998-2010 Jean Craig

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