It all started about 15 years ago with an allergy test.  The allergist phoned me with the test results and said to contact my General Practioner right away because my blood work indicated that I had Lupus.  I had no idea what Lupus was and he flatly said "it means you could die".

        When I called my General Practioner he said he knew I had it, but didn't tell me because I was "borderline" and he didn't want me to worry.  He then sent me to an Internist who did a barrage of tests.  When these came back inconclusive, he sent me to a specialist in Toronto who also did a barrage of tests which came back inconclusive.  I was beginning to feel like I was nuts.  During the second visit with the rheumatoid specialist, she had concluded that I had Primary Sjogren's Syndrome.  I didn't meet the criteria for Lupus.  At this point, all I had was Raynaud's Phenomenon and joint pain.  My mouth was only slightly dry.  Her only solution for me was to just drink lots of water, stay warm, and take aspirin.

         Very little was known about Sjogren's at that time.  More often than not I had to explain what it was to most health care people.  When I addressed it as an auto immune disease, they looked at me as if I had AIDS.  I learned to choose my words carefully after that.

        As time progressed, so did my symptoms.  My hands would be stiff and swollen most mornings.  My migraines became more frequent and I developed eye infections on a regular basis.  I couldn't hold a glass of water without my fingers turning white almost immediately.

        One day I felt a little node under my tongue.  I was sent to an oral surgeon who called it a "mucous seal" and surgically removed it.  I didn't know it at the time but it was a blocked salivary gland.  Several weeks after the surgery, I was at a friend's house helping plan a surprise birthday party.  I again felt a little node in the same spot and became concerned as it came up quite suddenly.  Shortly after, I felt my mouth fill with warm fluid.  Not knowing exactly what was happening, I just took a sip of tea and swallowed.  It didn't taste like blood, so I knew the surgical site had not ruptured and hemorrhaged so I can only guess that another blocked salivary gland had just "exploded".  From this point, my mouth got dryer and dryer.

        A friend suggested I try cranial sacral massage therapy.  I did.  The idea of this therapy is to have an RMT do specific therapeutic touch to the base of my skull with the concept that this "cleanses" and rids the body of toxins.  Shortly after this session, a lump developed on my neck that grew fairly large.  It wasn't going away after two months so I contacted my General Practioner who sent me to an ENT.  He removed the lump and also did a lip biopsy.  This was absolute confirmation of Sjogren's.

        Since then, I've had two more lymph nodes removed, a biopsy of abnormal tissues found in my throat, and the horror of nearly choking to death too many times to count.

        Having researched Sjogren's on the web, I've come to understand why I've had so many migraines, swollen glands, eye infections, ear infections that have left me with deteriorating hearing loss, aching joints, and the longest lasting colds in history.  Sjogren's.

        Being informed is our best defense.  Luckily, I have a group of doctors who now have a better understanding of my illness.  My dentist has been the best.  He's found articles on Sjogren's that have proven incredibly informative and he is most understanding.  There is always a good supply of lip balm at chair side so my lips don't dry out and crack during dental work.  I try to keep ahead of things by being very diligent with dental care.  So far, I've only broken one tooth (on a carrot stick).  My ENT is well informed which also helps.  He plans on making sure all suspect lumps are checked.  We have a standing joke that I should have a zipper installed in my neck.  My General Practioner and Cardiac Specialist are both the best of the best.  They follow up on a regular basis.  My General Practioner ensured that I had the pneumonia shot to prevent contracting that illness.  Having dry bronchial passages increases the risk of pneumonia which can be lethal.  He also makes sure I get a flu shot each year.  My "Cardio Doc" found that I have "leaflets" in my heart valves and therefore must take a massive dose of antibiotics before each dental procedure.  Apparently infection of the heart valves can be fatal.  I never go anywhere without a bottle of water and lip balm.  Luckily, my eyes aren't too dry (yet) but I have lost the ability to cry.  All I get is a slight misting and then my face gets "the red raccoon mask" as I call it.  I have chronic sinus congestion (but only upon reclining) yet my nose runs the moment I start eating or doing something physical and always when I laugh.  What a strange idiosyncrasy!  The joke here is I sweat like a dog, literally....(Dogs sweat through their noses as well as their feet.)

        Having a loving and supportive hubby has been my greatest blessing.  He makes sure I'm comfortable and warm so my Raynaud's won't act up.  He made sure the humidity in the house was at a healthy level by installing a good quality humidifier on the furnace.  And when I cough during a meal, he stops what he's doing and watches me with such a look of concern, always afraid I'm choking, but prepared and ready to assist.  He's a fire fighter, and he's well trained in all first aid procedures.

        I have a good sense of humour and it too has been a blessing.   But even with all that, I'm glad I found Lynne's Sjogren's Home Page and all the stories from fellow sufferers.  It's been the BEST medicine so far.  I feel fortunate, having read the other stories, that I have relatively mild symptoms compared to some.  I can empathize with each and everyone of you who have this awful disease.  It's not cancer, it's not MS, it's not any of those truly life threatening illnesses, but it is in its own right a life debilitating illness.  Constant fatigue, chronic joint pain, not being able to cry, fearing catching a simple cold, and all the other symptoms, these are things we live with daily.  And we always LOOK healthy!  People simply don't understand how Sjogren's affects our lives.  When people ask why it's so hard for me to eat a piece of bread or a cookie, or even cheese or peanut butter I suggest they breathe through their mouth until it is totally dry then pop in a couple of salty crackers and try to eat it all without water.  Then they'll maybe understand!  Yes, a sense of humour has helped but I have to admit, some days there just isn't anything to laugh about.

Carol of Canada