I don't know if telling my story is more for you who read it, or for me.  I have been very comforted and inspired by reading the stories on Lynne's web site.  There is a kind of solace that comes from having your own symptoms validated and a commonality that comes from learning that others share your malady.

     I am 44 years old and was diagnosed with Sjogren's Syndrome a year ago.  Like many others, I had symptoms for some time before diagnosis that included gritty-feeling eyes, burning tongue, and trouble eating dry foods like crackers.  I also had swollen, painful bumps behind my ears, which my doctor said were blocked saliva glands, and he told me I should suck on lemon candies.  One morning I awoke with joint pain and stiffness in every joint I had, even my toes.  It was hard to get up.  I couldn't even put my arms up to comb my hair.  The doctor gave me Prednisone and did a blood test that showed I had a high rheumatoid factor.  He referred me to a Rheumatologist.  I had seen this guy 5 years before after a less severe bout with joint pain and a high rheumatoid factor, but he couldn't conclude that I had anything.  This time he did extensive blood work, concluding that I probably had Lupus.  After more blood work, he couldn't conclude that I had Lupus, but was positive I had something called Sjogren's Syndrome.

     From the stories I've read I feel very lucky to have gotten such a quick diagnosis.  I chose not to take the Rheumatologists suggestion that I get on Plaquenil because I was contemplating a pregnancy.  I was married last Christmas to a wonderful man who has been nothing but supportive.  He was with me when I was going through the time of diagnosis.  Having a child looks less and less like a good idea because of the risk factors, not to mention the fatigue I constantly deal with.  My son is four years old, and I'm not sure the stress of having a baby and supporting both of us didn't contribute to the onset of Sjogren's.

     As far as medication, all I take is Ibuprofen for the joint pain, and an occasional 10-day pack of Prednisone.  I use eye drops and eyewash.  As for symptoms, some days are almost symptom-free, while other times I go for days with an array of challenges, the most prevalent being fatigue.  Because of being so tired, I also get depressed and irritated that I can't get anything accomplished.  Even my mind feels foggy and I can't concentrate.  I start feeling apathetic and irritable.  Spicy food and drink make my tongue and mouth sore, and I have 7 cavities yet to be filled, having had 5 done this year already.  Being self-employed, it s a bit hard on the pocketbook.  One of the worst problems for me is a recurring vaginal yeast infection.  I was somewhat relieved to see that is a common symptom of Sjogren's sufferers.  I try to stay in bed at least 9 hours because I never sleep all the way through the night.  I wake up at least a half dozen times throughout the night.  I experience rashes and terrible itching on my arms, legs, neck, and chest quite often, and run a low-grade fever much of the time.

     Seems like there is always something to complain about with this disease.  I try to keep it to myself as much as possible.  Even though I know better, I feel like a hypochondriac.  With the blessing of my husband, I am going to take it easier in the next year.  I have worked as a full-time performing pianist and singer for nearly 20 years and the late nights and smoke-filled casinos are certainly not helping my health situation.

     When I first read the stories and information on Lynne's web site, I could have cried (if you know what I mean-ha!).  It was a huge relief to know what I had was more than a name.  I'm very thankful for my family's support and their trying to understand and educate themselves about Sjogren's.  As we all know, the hardest part of this thing is that we don't look like we have anything, so people are understandably skeptical.  Thanks for the safe forum you provide, Lynne.  It is nice to get it all out.