Spin the Sjogrens Wheel
Sjogrens Wheel of Misfortune!
You Just Never Know
Wow...everyday is a spin of the wheel with Sjogren's Syndrome! I find most sufferers (including myself) complain consistently over the inconsistency of this insidious disease. Some days I wake up and my tongue is stuck to the roof of my mouth - because my mouth is like the Sahara Desert! Other days my joints are so painful and stiff I can't raise my arms and walking is a challenge. Then there are the days my eyes feel like they've been drug down a 10 mile gravel road! However, there are ok days - when I'm fooled into thinking ...hey this might all be over with...until the next day when the relentless Sjogren's wheel spins yet again!
What is Sjogren's Syndrome?
Sjogren's [sho . grinz] in laymen's terms, is an autoimmune disease in which white blood cells attack the moisture producing glands/membranes of the body. Dry eyes and a dry mouth are only part of the problem. Many of us who suffer from Sjogrens Syndrome or Sicca - also have issues with pressure in our ears, pain in the lymph glands in our neck and other places, extremely dry and itchy skin, headaches, fatigue, vaginal dryness, and the ever present joint and muscle pain.
Is There A Cure?
Sadly - there are no present day "cures" for Sjogren's - as is the case with most autoimmune diseases. Rheumatologists will generally prescribe a combination of moisture producing meds, steroids, anti-inflammatory meds, or bring out the big guns and prescribe Methotrexate, Plaquenil, or Remicade Infusions. Sjogrens is a progressive disease - so it is important to stay on top of the symptoms because ignoring the symptoms could cause long term health issues with your teeth and gums, eyes, lungs, kidneys, liver, nervous system, and joints.
Dealing with the Inconsistency
Family members and employers are often caught off guard by the on again/off again pain cycles of the Sjogrens sufferer. Somedays we feel up to the days challenges - some days we do not. Sometimes this wishy washy cycle of misfortune makes us look like hypochondriacs, lazy, or just plain crazy! It is imperative we educate the folks around us. We need to be honest about the disease and honest about how it effects us from day to day. If you don't feel well - learn to speak up! If you need to change plans at the last minute - than so be it. If you can't work any longer - than admit it to yourself, your family and your employer. Heh - Sjogrens is no walk in the park! Did you know Sjogren's has its own listing under the Social Security Disability guidelines now? This wouldn't have happened had Sjogren's not been a true adversary.
Well...I hope this hubpage has helped you realize you are not alone. I am adding a few links to sites I have found helpful. Take care of yourself - and God bless.
Sjogren's Defined by the National Institute of Health
- Sjögren\'s Syndrome Information Page: National Institute of Neurological Disorders and Stro
Sjogren's Syndrome information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
A Great Discussion Board
- Sjogren\'s Syndrome Support, Sjogren\'s World
Sjogren's Syndrome: Sjogren's Syndrome support through Live Chat, Message Boards Forums, Instant Messaging, E-Pals (internet pen pals), articles and links. Sjogrens is an autoimmune disease with many symptoms including but not limited to, neuropathie