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Min's Story

    I am 36 years old, and I was diagnosed with Sjogren's Syndrome 9 years ago at the age of 27.   It all began one evening as I was reading a story to my two year old son.  Every page I read my mouth became dryer and dryer.  Simultaneously, my eyes began to feel very dry.  I went to my internist and told him, "Doctor, I feel like I'm drying up."  He referred me to a wonderful ophthalmologist who ran various tests and said I had Sjogren's Syndrome.  

    I did some research on my own and was still somewhat skeptical.  That same year I noticed a lump on the right side of my neck.  After a Cat Scan and MRI, the doctors were not sure if it was a tumor or whether it was cancerous.  You can imagine how I felt.  I was the mother of a beautiful two year old little boy.

 
     After the surgery, it was discovered that the lump consisted of a bunch of infected lymph nodes.  Further lab tests revealed Sjogren's Syndrome.  But remembering back to my teenage years, I can now relate to why I was so tired and lacked energy after school.  After being diagnosed, I cried for many weeks and thought how can someone live with such dryness.  But it has been 9 years and I'm still learning to cope with it.  

    This year my rheumatologist said in addition to primary Sjogren's Syndrome I now have secondary Sjogren's.  My fatigue, dryness, all over achy feeling have become worse.  Plaquenil has not helped me.  I am currently on Prednisone.  We are going to try a new medication by the end of December 99.  

    Sometimes I feel like I'm the only person in the world that feels like this.  Especially when I'm at work.  My co-workers see the fatigue right in my eyes.  Further, I hold a full time job and the toughest time for me is waking up in the morning.  I feel like I have a ton of bricks on my head.  I wake up very stiff and achy.  I go to bed very achy and wake up the same.  No longer do naps help me.  No longer can I enjoy walks in the park.  Going to the supermarket is a one day task.  BUT YOU KNOW WHAT:  It's great to know that I can share my thoughts and concerns with my fellow moisture seekers.

     By the way, I had my second child in 1993.  I was very hesitant but thanks to my wonderful Rheumatologist and competent Obstetricians I was monitored very carefully and today I have a healthy 6 year old little girl.  You see, I carry the antibodies for heart block in unborn babies.

     In the past year I have lost 7 teeth.  The last two cracked while chewing gum.  I've avoided spicy foods all together because it causes my mouth to burn excessively.

     This is my story....please feel free to e-mail me for any thoughts, concerns.

 

Story Copyright © 1999-2007 Min

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