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JoLynn's Story

       Hi, my name is JoLynn and I am a 29 year old female.  I have a full time job and am very happy in my life.

    I would like to tell you my story. One day about 7 years ago I woke up with extremely itchy skin. This symptom went on for about 3 days until I decided I needed to see a doctor. These days were filled with sleepless nights and I was unable to work because it was so severe.  I went to the Doctor and he ordered blood tests and x-rays.  The blood test came back fine but the x-ray showed it could be Lymphoma.  Talk about scaring a girl.  He gave me some medicine that would put me to sleep to keep me from itching.  This did not cure my problem.  Four days later I decided I needed to go back because I was not any better.  My family doctor was not in so I decided to go with the physician filling in for him.  This was the best thing I could have done.  Right when he looked at me he said "You have extremely dry skin.  Put lotion on twice a day."

    So that's what I did and my dry skin is not a big problem anymore, but still a problem.  Then one morning I woke up and my right eye was extremely swollen and itchy.  Once again I didn't do anything about it at the time.  It kept coming back on and off for weeks but in different eyes.  Never at the same time.  Then one day I woke up and it was in both eyes.  I knew I needed to see the doctor again.  My first reaction was that I had an eye infection.  The doctor said I had an allergy in my eyes and gave me some eye drops.  This did not seem unreal to me because I do have severe allergies anyway.  The eye drops did not help and I went back to him numerous times.  One day it was allergies and the next it would be dry eyes.  He finally sent me to an Ophthalmologist.

    The Ophthalmologist had the same diagnoses.  One day allergies and the next dry eyes.  I had a lot of dry patches on my corneas.  This was getting old to me because some days it was impossible for me to drive because of the burning and itching.

    Finally, the Ophthalmologist  was all out of answers and sent me to the University Of Madison for Ophthalmology.  This was a 4 hour drive round trip once a week.  I had to have my boyfriend drive me every time because I cannot drive that far.  Again...they gave me the same diagnoses every time.  I can't tell you how fed up I was.  I would cry everyday and ask God "why me"?  They decided to put punctum plugs in my bottom two tear ducts.  These are supposed to produce more tears to keep your eyes moistened.  All they did was cause problems for me.  Constant tearing and having to carry a kleenex with me all the time because people would think I was crying because tears would fall down my face at any time.  The doctor saw that these weren't working and decided to put two more plugs in my upper tear ducts.  Now until this happened I didn't even know I had 4 tear ducts.  They did not help and I quit going to the University.  This was after 8 months of constant pain.

    I can't even tell you how long I kept this up.  Not knowing what is wrong with you and thinking that the next day you will wake up and it will all be gone.  I never gave up that hope.  Hoping that it will disappear as fast as it came.

    I decided to go see an Acupuncturist.  I was very skeptical at first because I didn't know exactly what to expect.  The first time I went he just put about 6 needles on my legs and hands.  I thought is this it?  The second time he put those same 6 and one on each side of my head.  I still was getting no relief until the next session.  I didn't even know it was coming because he didn't warn me but he stuck one needle in each eye.  Wow, I thought I was going to throw up.  But you know what?  I had two weeks of relief.  I went to him once a week for about 7 months and was doing wonderful.  Each time I had about two weeks of relief.  That was more than any doctor gave me.  Dr. Sunderlage (my acupuncturist) diagnosed me with Sjogren's Syndrome.  I had no idea what this meant until I went to the library and read up on it.  I cried right there in the library because I had no idea it could cause so many problems.

    Just when I thought I was handling the symptoms I had, another one would come along.  Dry mouth was the next to come.  I have to carry water with me all the time.  The doctors say to chew sugarless gum but I can't because I have TMJ in my jaw which is a form of arthritis.  I also have Osteoarthritis.  So I have water with me all the time.  You also need to take good care of your teeth because saliva is what fights cavities.  If you don't have saliva, you need some sort of a supplement.  I also brush my teeth twice a day.  Especially before bedtime because when you sleep is when your mouth is the driest.  I also use a prescription that I get from my dentist called Easy Gel.  This helps fight plaque.  I strongly suggest this prescription.

    I was doing fine and learning to accept what God was throwing at me.  Then I got a yeast infection.  I used an over the counter product and it disappeared for about 1 week.  I went in to see the doctor about this and he found out that I had vaginal dryness.  This is a tough one sometimes because you never know if you have an infection or are just dry.  They have the same symptoms.

    I decided I needed to get a professional diagnosis about my Sjogren's Syndrome.  I made an appointment with a Rheumatologist.  I learned that there are two types of Sjogren's Syndrome.  Primary Sjogren's and Secondary Sjogren's.  Primary Sjogren's is when you have only the dry symptoms of the disease and Secondary is when it's followed by an autoimmune disease such as Lupus or Rheumatoid Arthritis.  I have Primary Sjogren's at this time but was told I was borderline Lupus so I do everything that I can to prevent furthering this disease.

    I still have a lot of problems with Sjogren's Syndrome.  The symptoms have not decreased in severity.  I use Eucerin Lotion on my entire body twice a day, use preservative-free eye drops daily and use Refresh PM at nighttime.  Although I can drive again, I still cannot drive for long periods of time. Everyday is different for me.  One day I can see fine and another day an eye can be swollen shut.  My problem is that I also have terrible allergies that affect my eyes.  I can't use allergy eyedrops because they are made to dry out your eyes.  I already have that problem.  You just never know what your day is going to be like.

    As for how someone can cope or deal with this disease is up to that person.  I just take it day by day.  I have really bad days where I can feel so sorry for myself and other days where nothing can hurt me.   Not everybody will understand what you are going through because they have no idea how severe the symptoms can get.  Just remember there is always someone here that will listen.

    I hope my story has helped you.  I am glad to have been given the chance to share it with you.  I hope that you will email me if you have any questions or comments.

Thank you.

Story Copyright © 1998-2007 JoLynn Seyller

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