I'm a 23 year old mother of a healthy 2 year old little boy.  My first sign of Sjogren's that I can remember goes back to my teen years.  I was an active teen.  I played volleyball, basketball, and softball.  It was softball season, I was about 17, and my face started to swell.  It hurt to touch, the pain was terrible.  I missed a week of school, I was too embarrassed to go.  I ended up going to the prom with a swollen face.  I had to wear my hair down to cover the side of my face.  I went to see my family doctor who insisted I see an Ear, Nose, and Throat doctor.  My mother took me and the ENT doctor just seemed to think my salivary glands may have been blocked.  Well he prescribed an antibiotic and it took the swelling down.  

      It was about a year later it happened all over again.  I went to my family doctor who again sent me to a different ENT doctor.  This doctor seemed to think maybe there was a stone blocking my salivary gland.  He asked me to have a test run where they would shoot red dye into my gland and take X-rays to see if there was a blockage.  The ENT doctor received my results and confirmed there was no blockage, then he told me we could do surgery so this wouldn't happen anymore.  I was not having surgery if they had no idea what was wrong.  Well every time my face swells now I just go see my family doctor who will prescribe an antibiotic to make it disappear.

     When I was pregnant with my son, I had a normal EASY pregnancy.  My due date was July 13, 1999.  I remember waking up one morning, I was about 20 weeks pregnant, with my face swollen around my eye.  I called my mother to take me to the doctor.  He had no idea and prescribed eye drops so I thought nothing of it.  Well later down the road I went for a normal weekly check-up on June 30.  My doctor asked that I come back the next day, he didn't think I was very big.  I gained 22lbs total.  I left the doctors office crying, not sure what to expect.  I went back the next day, July 1st, for an internal ultra sound.  I asked the doctor (Not my normal OB/GYN) what I was having... he said looks like a girl but it's hard to say.  There is not a lot of room for the baby to move.  Well, my OB/GYN came in and started speaking with the other OB.  I had no idea what they were saying but I started to cry.  My doctor than explained to me the baby did not have much room to move and asked if my water broke.  He said I didn't have much amniotic fluid around the baby and it would be better to take him now so the cord doesn't wrap around him.  He also explained I had a IUGR (Involuntary Uterus Growth Retardation).  He then asked me to go to the hospital and be induced.  My husband and I went into the nurses office and spoke to her a little and she allowed us to call our family to explain what was happening.  I was induced about 3 pm on July 1st and my son (not daughter) Austin was born at 2:39 am July 2, 1999.

     When Austin was born he was a healthy little boy (my angel).  I started to notice a rash on his body when he was 3 weeks old and I had no idea what was wrong.  We went to his doctor once a week to treat different things, ring worm, ceriousis (Don't know how to spell it), etc.  Finally my sons Pediatrician sent me to a Dermatologist.  My mother-in-law and I went to see the Dermatologist who looked at my son & went to get a second opinion.  Another doctor came in & looked at my son & then they both left.  The doctor came back in and told me what he thought it might be.  He said it looked like my son had Neonatal Lupus.  I instantly started to cry, not my baby (he was 2 months old).  The only way they could be sure was to do a biopsy, so I allowed it.  They took a piece of skin behind his right ear and sent it off.  I was asked to come back a week later.   I did, along with my mother and mother-in-law.  The Dermatologist confirmed it was Neonatal Lupus.  I then asked where do I go from here.  He said my son still had my antibodies and it will work it's way out of his body and by the time he was 6 months old he would no longer have any signs of Lupus.  I did some reading and they have only found 300 cases of Neonatal Lupus and it started in the early 80's.

     The Dermatologist suggested I get tested for Lupus so I went to see my family doctor again and explained my son to him and that I wanted to be tested.  He told me if I came back negative my insurance would probably refuse to pay for it and if they did to let him know and he would help me fight it.  He sent me off to get tested.  Two days later my doctor, not nurse called me at work to tell me I tested positive for Lupus.  I started crying instantly on the phone to him.  My sister worked with me as well and saw I was upset.  She came over to hold me while I cried.   He gave me a number to a Rheumatologist to go and see.  I am seeing him now and he is great.  He did some further test on me and found I am a carrier of Lupus.  At this point I do not have it.  I have a 5% chance of developing Lupus.  So that is good news.  Now I just went in June of 2001 to see my Rheumatologist for my yearly visit and I told him how I felt.  I have dry mouth and have had for years, my teeth are terrible.   I never could understand why but now I know.  I'm tired a lot (granted, I have a 2 year old) but I'm also 23 and shouldn't feel this tired.  Also another thing, I never go to the rest room even when I was pregnant.  I could sleep all night and not wake up to go.  I know that's not normal.  I went to a local hospital on June 26, 2001 and had a test done called Paratid Scintography (I think that's how it's spelled) done where they put red dye into my veins and then I had to lay still for an hour.  It was confirmed I have Sjogren's Syndrome.  My face is currently swollen, I have not asked for an antibiotic yet, but sometimes it comes and goes on it's own.  This time it's hanging around.  It's been swollen since November of 2000.  But it doesn't hurt, all I get is a mucus out of the gland if you push on it.  I know I keep running on and on and on but I feel there is so much to say and it's so hard to explain.  I wish you all the best and please e-mail me if you would like.  I'm in the Columbus, Ohio area so if your in this area I would like to hear who your doctor is.