Friday, October 23, 2009

Living As A Desert

Not many people I am acquainted with have heard of Sjogren's Syndrome (pronounced SHOW-grins) but it affects 1-4 million people in the United States. Women are nine times more likely to have this than men.

Sjogren's Syndrome is a chronic autoimmune disease in which people's white blood cells attack their moisture-producing glands. The most prominent symptoms are dry eyes and dry mouth but it can also cause dysfunction of other organs -- kidneys, gastrointestinal, blood vessels, lungs, liver etc. It can also cause extreme fatigue and joint pain.

On average it takes about seven years to get a diagnosis for this disease and that is exactly how long it took in my diagnosis. For years I went to doctor visits with various symptoms only to be told I was suffering from depression, fibromyalgia etc. It wasn't until Ron, a Physician's Asst. investigated a little further. After I shared a strong family history of autoimmune disease he ran tests and sent me to a Rheumatologist.

Over the years I have had some ups and downs with symptoms, remission, medications but I have been able to tolerate most of it. However, in June I started having mouth sores and tongue cracks ... my mouth burns all the time. I find it hard to eat most foods and have difficulty talking for long periods of time. My mouth and eyes are so dry that I feel like my body has turned in to a desert!

Right now I am trying several remedies, medications etc. but so far all of this has had no impact on the cracks and burning. The Dr. says stress aggravates this disease and suggested I reduce my work hours / workload. This week I had two days off work so we rented a house in Sunriver for four nights. It has been so nice to rest, read ... relax. Hopefully, this retreat will be the perfect Rx to get this Sjogren's thing turned around.


Anonymous said...

Hi, Karen--
I really admire how you are handling the Sjogren's and Lupus. I know it's difficult.
Love you,

Becky said...

I am so sorry to hear that you are struggling health wise. I am praying for you and that the drs. would be able to find something to help soon.

Anonymous said...

Biotene products and Rx fluoride for your mouth will help alot.