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Iuvany's Story

    As a child of 4 years old I was diagnosed with Febrile Convulsive Disorder.  This basically means when I get a high fever I am subject to convulsions more so than normal people with high fevers.  I had 2 seizures by the time I was 4 years old.  Also due to an EEG, they discovered I had abnormal brain wave activity.  At the time of the Sjogren's diagnosis I had been on medication for 13 years.  They told me I would have to take Tegretol for the rest of my life.  I had to get blood work every 2 weeks in the beginning to make sure everything was okay.  I had to see a neurologist every 6 months to make sure the medication was working and not affecting any part of my normal growth, respiratory system, etc.  I had to get an EEG every 2 years to check my brain activity to make sure nothing was abnormal.  I lived a very sheltered life because my mom thought one bump on my head and I would die.

     Then when I was 17 years old I was diagnosed with Sjogren's Disease.  I went to my eye doctor because my eye was swelling.  It looked like someone punched me in the eye and no one could figure out why.  The eye doctor took a close look at my eye and discovered what seemed to be tissue.  It was only on the white part of my eye.  He did not know what it was.  He thought it could be cancerous.  He decided to do a biopsy and
run further tests.  I had the unfortunate pleasure of wearing an eye patch for the next 3 weeks until I healed from surgery.  With the tissue sample he removed from my eye, he ran numerous tests.  Discovered it was not cancerous but was waiting for the rest of the results to come back.  A couple of weeks later I went back and he said he knows exactly what it is.  

    He told me it was Sjogren's which at the time meant nothing to me.  He explained to me the way he discovered it.  It was a test they ran but I'm still not sure exactly what it was.  Once you get the data from the test it gives you a number between + 20 through -20 .  The closer you are to +20 or -20 or go over it , the better chance you have Sjogren's.  My number was + 97.  I would say that was a positive match.  He started giving me Plaquenil, which at that time was in the experimental stage.  I took it for about 2 or 3 months.  This made the swelling go away.

     Once it was gone, I stopped taking the medicine.  I hate doctors, medicine, and anything that involves hospitals.  The doctor told me I would have to take this for the rest of my life.  I played along, just so I could get out of there.  I was not going to do it I decided.  I had been taking Tegretol, now I would be taking something else on top of it.  He also told me early symptoms of Sjogren's sometimes involve seizures.  This wonderful news made me love doctors and medicine even more.  I basically rebelled and stopped taking all my medication.  I was smart about it because I tapered myself off throughout a year.  

    I was still taking blood tests to check my Tegretol levels, but it was only every 3 months.  They finally discovered after a year that I stopped taking them, which surprised me.  It took an entire year for my Tegretol levels to drop 4 points on whatever scale they used.  At this point they revoked my drivers license, which I forgot they could do.  Because I was on this medication, I had to originally get approval to drive from my neurologist.   She sent a letter to the DMV and BOOM suspended drivers license.  She made me take an EEG before I could get it back.   And low and behold, it was the best EEG I ever had.  Everything was completely normal.  She gave me my drivers license back and life goes on.

     It has been about 5 years since I have taken any medication that wasn't aspirin or cough medicine.  I think I am starting to regret it.  The pain is getting worse.  More so now in the winter time.  I work with computers.  Typing sometimes becomes a problem because it feels like I have arthritis in my hands.  Luckily, it comes and goes.  I have to stand up constantly so my knees don't lock up.  I am stubborn and made my decision about medication so I will just attempt to bare it.  

    I have a really good pair of leather gloves.  I wear sun glasses all year long, because pretty much any sunlight that isn't the sunset bugs my eyes.  I feel pathetic sometimes.  I am a 23 year old male who feels 123 years old.  I don't know if there is anything I can do and really just don't care anymore.  With the medical start that I have and my family history (heart attack , aneurysms, glaucoma and strokes), I'll be surprised if I make it to 35 years.  I just live my life as if every day is a new day.  

    I hope other people will maybe read this or hear about this and really think about life long decisions.  Always weigh the pros and cons.  I appreciate the chance to tell my story.

Story Copyright © 1999-2007 Iuvany

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