Blue Elephant- Sjorgen's Syndrome

February 11, 2012
I use to read a children's book to my kids about the Blue Elephant in the Bathtub. A little boy kept telling his parents about his very large blue friend. His parents could not see the elephant so they told him it was not real. For the little boy the blue elephant was very real indeed.
This is how I view my chronic health issues. A lot of people do not even know I am on disability or have chronic illnesses. It is all invisible unless a person is around me for a day or two. In a lot of ways I like it this way. I am not treated any differently and I feel "normal". On the other hand, I lost a job over my "blue elephant". I had been getting informal accommodation until there was a big change in personal. More details in the future. However, it ended up in an EEOC (Equal Employment Opportunity Commission) lawsuit in violation of ADA (Americans Disability Act).
I have had an autoimmune disorder since I was a teen but did not know it. I only remember hanging out with my friends at the "Hot Shoppes". They would eat the burger and fries followed by a drink. I had to drink some soda after each bite.
After college I had to stop wearing contacts because there was so much sand and grit in my eyes. In the 1980's a dentist diagnosed me with "Sicca syndrome" or dry mouth and eyes.
NIH (National Institute of Health)
The dentist recommended me to a study at NIH. I helped to develop a medication for dry mouth problems. It was a really good experience. I learned about what was going on in my body and was treated with acceptance. I didn't feel so much like a freak. Even today Sjorgren's syndrome (SS) is considered "one of those unusual diseases". In Sjorgren's the body attacks itself, especially the salivary glands and tear ducts. Sjogrens is a systemic disease that can affect many organs of the body including the lung and the kidneys.


No More Spices Please
For me it has caused problems and money related to my dry mouth. My salivary glands are impacted with white blood cells. I've spent enough dollars on dental work to purchase a car or even a house. In the end I lost all of my teeth. Sjogrens teaches you the value of salvia. There are many foods I simply cannot eat: hot wings, most spices, barbeque sauces, crackers, popcorn, soft and hard bread and lots of meats unless covered in gravy. Even peanut butter can get stuck in my throat. I eat a lot of fruit and soft foods. I have to read the labels carefully for the spices. I generally have to make my food from scratch eating small portions because it takes so long to chew food and to keep from choking when I swallow the food.
However, I have no problems eating ice cream. I use to weigh 200 lbs. on a 5'3" frame – a bit roly- poly. Then a swallowing disorder kept me on an almost liquid diet for 9 months. I lost 65 lbs. However, I do not recommend this as a way to diet. It only takes a couple of terrifying chocking episodes to realize this.
In the scheme of things Sjogrens has been a nuisance for me. I use the medication "Salagen" I helped to develop. I also carry a water bottle with me at all times – even in church. I guess I won't have to worry about drooling in my advanced years.
So how did I actually get on this ride? According to researchers I worked with at NIH there is evidence to suggest that viruses play a role especially the Epstein Barr virus (EBV). It is a member of the herpes family. Mononucleosis is a severe form of EBV. In the sixth grade I was seriously ill with "mono" the first four months of school. This may have set me up to be a recipient of Sjogrens. My "Blue Elephant" has a friend "Ray" or Raynauds. Meet him in an upcoming blog.
RESOURCES
The Sjogrens Syndrome Handbook from the Sjogren's Syndrome Foundation, 6707 Democracy Blvd., Suite 325 Bethesda, MD 20817. Toll free Number: 1-800-475-6473 http://www.sjogrens.org
Sjogren 's syndrome –Mayoclinic.com

WebMD, Arthritis Health Center Community TV http://www.webmd.com/rheumatoid-arthritis/arthritis-sjogrens