My name is Michele.  I am 32 years old and have had Sjogren's Syndrome since I was 18.  After reading all of the stories on Lynne's website I finally felt that I wasn't alone in dealing with the difficult symptoms of this disease.

     Going back to when all of this started.  I had just graduated from high school and was looking forward to going away to college, having a good time, and planning my future.  That life as I knew it was about to end. 
I woke up one morning and my mouth was severely dry and there was something wrong with my skin (I did not know what it was, my skin just did not feel normal).  I brushed my teeth over and over again trying to get rid of the dryness but it only got worse, and I was left with an awful taste of toothpaste in my mouth.  When I took a shower I was in for another shock.  I could not get the soap off of my skin.  I was left with a white paste on my skin and no matter how many times I showered I could not get it off.

     After about a week of these problems not going away I started going from doctor to doctor trying to find out what was wrong with me.  None of the doctors could tell me why I was having these problems and they talked down to me like I was crazy and it was all in my head.  My mother found a clinic in Miami called the Dry Mouth Center (sounds weird but it actually did exist).  When I got there. I could not believe how many patient files there were.  It was hard to imagine that so many people were suffering the way I was.  The doctor at the clinic told me I had absolutely no salivary gland function but I tested negative for Sjogren's so he didn't know why this happened to me.  He then joked that with most of his patients he has a hard time being in the same room with them because their breath smells so badly, and that the woman in the next exam room was talking about committing suicide because of this problem.  Gee, that was reassuring.  He sent me on my way with a tube of Biotene toothpaste with an attitude of sorry about your luck kid. 

     I continued to see as many doctors as I could hoping that somebody could help me.  I went through allergy shots, a tonsillectomy, acupuncture, and dozens of medications.  Nothing helped.  I saw quite a few dermatologists about my skin problem.  They all told me I had severely dry skin and to just use a lot of lotion.  What I soon realized was I didn't just have a problem with soap, everything I put on my skin just stuck to it.  If I used lotion, it would not absorb into my skin and it would just sit there until I washed it off.

     I began having dental problems as well.  I had never had a cavity before this started and now I was plagued with them.  My dentist told me if my salivary glands were damaged permanently that my teeth would probably rot and fall out.

     I had always been a very social and outgoing person but by this time I had completely isolated myself from family and friends because of how miserable I was.  Plus it's hard to socialize when you have cotton mouth 24-7.  I finally bit the bullet and went away to college.  I figured if my college years were going to be filled with misery I should at least make something good come out of it.  I immersed myself in school and finished 2 Bachelor's degrees and my Master's degrees in 6 years.

     Once I graduated I figured I would see a few doctors and maybe after 8 years someone could give me some information that would finally help me, although I wasn't very positive about it.  I was referred to a Rheumatologist (which I had never been before).  The Rheumatologist diagnosed me with Sjogren's Syndrome and said I probably had it the whole time, it just didn't come up in my blood.  She was the first doctor that took me seriously and didn't treat me like I was crazy.  She prescribed Salagen which I had never heard of.  I will never forget the first day I tried the Salagen.  My salivary glands started to work immediately and continued to work for about 4 hours.  I sat and sobbed for most of the day.  This was the first time I had any moisture in my mouth for 8 years.  I began thinking about all the years I spent in misery and how my personality and my behavior towards my family and friends changed.  And all over a lack of saliva.  It sounds silly but that's the effect it can have on you.

     I continued to take the Salagen for about five years until the sweating from the medication became too difficult to deal with.  Fortunately, the medication caused my salivary glands to work about 50% of what they had before and they continue to work the same now that I'm off the medication.  My life has improved dramatically.  I'm still not the same person I was but I'm better. 

     I see my dentist once every three months for cleanings and with his advice I'm using the Sonicare toothbrush. Since I started doing these two things I have not had a cavity since and the decay is no longer a problem.

     I do have one thing to be grateful for.  I have never suffered with dry eyes.  I spent so many days over the last 14 years crying because of what I've experienced and I can't imagine not being able to do that.  My heart goes out to anyone suffering with that problem.

     Thank you for letting me share my story.  If anyone would like to talk, you can email me.

Michele