Hi, my name is Shannon and I’m 28 years old and happily married.  I always thought that I was pretty healthy-I rarely had a cold or the flu, and I never had to go to the hospital for any reason.  I did have some strange problems, but I never thought much of them, and neither did my parents.

        Things changed, though, when I was about 23 years old.  I had been losing weight since I was about 21, but it was happening so slowly that neither my fiancé nor I really noticed it.  I thought it was happening because of the stress of leaving college and going out into the real world and trying to find a good job.  My fiancé and I moved back closer to my family and they noticed it right away.  They all thought I was anorexic!  I tried to show them they were wrong, but no matter how much I ate, I just couldn’t put on any weight.  Then I started to feel ill, which was not normal for me, so I decided to go to a doctor.  Since we were in a new town, we hadn’t picked a primary care physician yet, so I randomly picked out a general doctor in the yellow pages.  I really lucked out because this started me on the road to being diagnosed.

        I went to see this doctor and he decided to do some blood work.  When the results came back, he told me that I was out of the normal range in some areas.  Other doctors had told this to me before, but they always just brushed it off and said that some people just aren’t in the normal range.  But this doctor decided he wanted to do more tests so I was surprised.  I said, “So you think there might actually be something wrong?” and he said, “I know there’s something wrong, and we’re going to find out what it is.”  He set me up to have an upper GI to see if there was something wrong with my stomach or small intestines.  When the procedure was over they showed me my x-rays right away.  They said everything looked normal, except that my kidneys were full of calcium deposits (in other words, kidney stones).  My doctor then thought I might have a metabolic problem, which made sense to me, so he sent me to an Endocrinologist.  

        The Endocrinologist did more tests and decided I didn’t have a problem with my metabolism, but he found more problems with my kidneys, so he sent me to a Nephrologist.  (This whole time I wasn’t at all scared, I was just really curious, even when I heard that I had “mild” kidney failure.)

        This Nephrologist was wonderful.  The first time she saw me she started asking questions about things that I never really thought of much.  She asked if my mouth was dry and I said, come to think of it, it does get pretty dry and I need to drink a lot of water.  Then when she asked if my eyes were dry I told her that many years before my Optometrist had mentioned that I had “old lady tears”.  As soon as I said this she said she thought I might have something called Sjogren's Syndrome and wanted me to see a Rheumatologist.

        I went to see a Rheumatologist, more tests were done including a lip biopsy, and the diagnosis was confirmed.  After the initial shock I started learning about the disease, mostly through my Nephrologist and through the Sjogren's Syndrome Foundation.  Instead of being sad or depressed, I was so relieved!  I could relate almost every single weird problem that I’d had throughout my life to symptoms of this one disease.  I wasn’t the only one dealing with this!

        Looking back, I can now see a clear progression of Sjogren's.  From the time I was a baby to early childhood I had chronic ear infections and was always on antibiotics.  (I don’t know if this is Sjogren's related, but I thought I’d mention it since the best explanation the doctors could come up with was that I was allergic to milk, but I’m not.)  When I was only 3 or 4 years old, I was no longer able to cry with tears.  My parents noticed and took me to the Pediatrician who told them that I simply had blocked tear ducts, which was common, and not a problem.  It was never mentioned again and to this day I have never been able to cry tears.  Also, my skin was so dry that my elbows would crack and bleed, especially in the winter.  

        Then, when I was about 10 or 11, I clearly remember sitting in the lunchroom at school eating an apple when I got a horrible, paralyzing pain in my gland by my ear.  I couldn’t move my mouth it hurt so bad, so I rubbed it until I felt something “squirt” into my mouth and the pain instantly went away.  I told my parents, they took me back to the doctor, and once again he said it was a blocked salivary gland, it was common, and would always resolve on itself.  From that day forward “squirting”, as my family came to call it, has been an everyday, every meal occurrence.  I “squirt” without even thinking about it most of the time now, and I realize that what I was doing was “milking” my own gland to get the build-up of saliva out.  However, more and more often these days I can’t squirt the saliva out and the gland swells and trying to chew is absolute agony.

        The next thing that happened occurred when I was 16 and working as a waitress at my first summer-time job.  It was a stressful job and I was on my feet for at least 8 or 9 hours straight, and I began to get leg rashes.  Appearing around my ankles and lower legs would be these bright red, painful little “dots”.  My parents were very concerned when they saw them, but they would disappear completely in less than two days, always before they could get an appointment.  (A gout medicine called colchicine keeps the rash away wonderfully now.)  Also around this time my hair started to fall out really bad, so off to a Dermatologist I went.  The Dermatologist wasn’t really concerned because there were all new hairs coming back in, so he just told me to buy T-Gel shampoo to help with my sore scalp.  It didn’t really help, but life went on.

        Shortly before I went off to college, my dentist noticed a lump under my tongue during a normal cleaning.  He was concerned so he sent me to an oral surgeon who removed it and had a biopsy done.  They said it was a benign cyst.  A few months later another one appeared and it was also removed.  A little later on I got more but managed to rub them with my tongue until they burst and thick mucus came out- (stitches under your tongue are not fun and I didn’t feel like dealing with that anymore).  I now think that these cysts were swollen sub-lingual salivary glands.

        Finally, during college is when I started to notice an increase in dryness of my mouth.  I thought it was because the dorms were always so hot, so I just drank a lot of water, especially at night.  Towards the end of college is when the weight loss started and I also began getting concerned about my short-term memory.

        For a few years I dealt really well with the fact that I had a disease.  I still felt pretty healthy because I was so used to the symptoms that I’d had for many years.  I guess I thought that nothing bad would really ever happen and that the severity of the symptoms had reached a plateau.  Then I went through some stressful times.  I was laid-off of my job and couldn’t find another good job for nine months.  We were just getting back on our feet when my husband injured his back and had to have back surgery, and now his doctors say he’ll never be without back pain for the rest of his life.  I think that stress is a major trigger of symptoms for me because just within the last couple of years things have gotten much worse.  I feel like an old lady married to an old man, but we’re both only in our late twenties.

        My eyes get so dry that my eyelids literally become glued to my eyeballs when I sleep.  I have to squint and rub my eyes constantly when I’m trying to hold a normal conversation with people at work, and I go through eye drops unbelievably fast.  I started getting all kinds of painful mouth sores, and it seems like I am never without a sore in my mouth now.  I have begun choking on my food when I eat because it gets stuck halfway down, and I am terrified to go anywhere without bottled water because if my throat gets too dry it feels like I’m going to choke as well.  Also, I had my first visit to the hospital earlier this year because of horribly painful kidney stones.  I began to get vaginal yeast infections (I’ve had oral yeast infections since I was young-something else that the doctors ignored) and nothing seems to help them.  When I asked my Gynecologist if Sjogren's or vaginal dryness could cause yeast infections he said “Oh, no!”  That was the last time I went to him.

        I’m really tired of having to explain to countless people in the medical profession what Sjogren's is-shouldn’t they already know?  I’ll never forget the look of fear in one nurse’s eyes when I said the words autoimmune disease.  I know she thought that meant I had AIDS.  Unbelievable!

        My newest problem is intestinal upset and bloating.  I’m going to start taking digestive enzymes and hopefully that will help.  I’m starting to get scared, though, for the first time.  I now wonder if I’m going to be able to live to see old age.  My husband and I are ready to start a family, but I’m worried about maybe not being able to get pregnant, or having a baby with a heart block if I do.  What will I do if I have a baby and then become completely debilitated by this disease?

        My family thinks it isn’t a big deal, just like I used to, but now I want them and everyone else that I know to understand.  I sleep a lot, not because I’m lazy, but because I’m always tired.  I don’t eat a lot of foods, not because I’m a finicky eater, but because I can’t chew and swallow them if they’re too dry.  But I know no one except those who have this disease can really understand.  That’s why I’m so thankful for this website.  I’ve read a few stories that people write in to “The Moisture Seekers” (The Sjogren's Syndrome Foundation’s newsletter), but they don’t compare to these.  Knowing that I’m not alone makes all the difference.  Thanks for reading my story.

Shannon

Story Copyright © 2003-2007 Shannon