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Dorothy's Story

    As you may well guess, I am well acquainted with Sjogren's syndrome.  Maybe more than I care to be.  Just to let you know a little about myself:  I am 77 years old, married 59 years in August, have 5 children, 14 grandchildren, and 6 great grandchildren.  All beautiful and smart, of course, and so far have no Sjogren's syndrome.  I pray they are never a victim of it.

 
    I first started having problems health wise with gouty arthritis, high blood pressure, and headaches in my 40s.  I struggled to complete a college degree I had started after high school and then went on to get a masters.  I was feeling fairly good most of the time and the prescriptions were helping.  My ten year career at teaching 14, 15, and 16 year olds Earth Science and Physical Science began to terminate 5 years earlier than planned. The stress that was building as teaching situations changed for the worse was taking its toll.  My physician kept asking me when I was going to quit teaching.  Finally, at the end of ten years I threw in the towel.  I was so tired and hurt all over.  I started taking vitamins and herbs and rested a lot, but just couldn't come out of it.

 
    I was prescribed many different NSAIDs, but none helped and I finally decided I was allergic to them all.  Allergies of all kinds had also become a huge problem.  I have had about every test known to mankind and the main diagnosis that has been made is Sjogren's disease through a lip biopsy.  I was also diagnosed with Scleroderma because there was a huge marking on my right side that the dermatologist said was a picture book example of Morphea Scleroderma.  The strange thing is that none of the blood tests have revealed any form of either disease, nor lupus nor rheumatoid arthritis.  

 
    It was interesting to read in your letters that so many others have gone through similar stages.  I have the dry, gritty eyes, dry mouth, very dry skin on arms and legs, and just beginning on the sides of my face.  One thing that I have and did not see mentioned is the neuropathy in both feet and legs to the knees which causes a lot of pain when I am on my feet too much.  My feet and legs swell when I have them down very much.  Both my Internist and Neurologist have tried to blame it on diabetes, but tests prove it is not that. My orthopedic surgeon did a knee replacement in 1993 and told me afterwards that I had a collagen disease.

    Something I forgot to mention is my allergy to MSG (Monosodium gluconate and aspartame (Nutrasweet).  I have found that when I totally eliminate both from my diet and eat only pure foods that my swelling diminishes and the headaches are gone.  Dr. Schwartz's book on MSG should be a must read for everyone.  We are being poisoned with our commercial foods.  I think these things aggravate our problems.

 
     I am blessed with a very loving and fairly healthy 80 year old husband who spends much of his time seeing to it we have something to eat and tries to keep up with things that need to be done.  It would make my life much more difficult without him.  Other than the pain and suffering, it has been a challenge to accept not being able to do all the things I did to help hold up my end of our marriage.  I was always very active.  It makes it more difficult when you look as fat and sassy as I do, and everyone thinks you are telling lies about how you feel.  I no longer tell them.  I just ask if they have an hour to listen to it all and they say no, so I say I am fine then.  I find so much that makes me feel better and I wonder what I have to complain about.

Dorothy Sanders

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