Author Topic: Question to the veterans  (Read 1694 times)

kcoffiner

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Question to the veterans
« on: July 30, 2008, 04:57:27 PM »
I have been dealing with sjs for over a yr now (probably a lot longer but my symptoms weren't pronunced until a yr ago) and I was wondering what single piece of advice can the vets give on living a fulfilled life despite this disease. I find it very difficult sometimes impossible to live with Sjogrens (primarly the dry eye bit) and wondered how others cope with the illiness. Religion, family, eyedrops, etc... Thanks!

Cheryl

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Re: Question to the veterans
« Reply #1 on: July 31, 2008, 11:27:00 AM »
KC,
   Keep a sense of humor, and expect to enjoy your life.   Don't expect others around you to understand when you have bad days; they probably won't.   (I don't do a lot of explaining about Sjogren's, because most people have never heard of it.)  When you do feel good, make the most of it.   You may pay later in exhaustion, but it's worth it to feel "normal" once in a while.   Come in here often, even if you don't feel like posting anything.   Have regular health check-ups.   Take care of yourself!
Cheryl   
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salsen

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Re: Question to the veterans
« Reply #2 on: July 31, 2008, 12:33:52 PM »
Cheryl has given you wonderful advise.  I also cope by educating myself but always  being mindful not to anticipate every symptom for myself. 

I do not ask why me - totally futile!!  I know for whatever reason this is who I am suppose to be in this stage of my life.  Look for the good in everyday - even if it is just being able to get out of bed and get dressed.  The more you look for things that make you smile the more you let go of all the tough things. 

I have a friend who asks me all the time " How can you keep smiling and laughing all the time? I would be totally undone!"  I choose to take control of my attitude.  I may not be able to control the pain, dry eyes, dry skin, upset stomach etc. but I can choose to laugh at my misery so to speak. 

Like Cheryl I tell few people because the mile long explanation of what SJS is gets too complicated.  They tend to go blank anyway before you are finished.  LOL.  My family and close friends know and of course all my friends here.  Other than that I do not bother with explaining why I walk slower, can't stand for long periods of time or need to rest often.  My feeling is this is me - take it or leave it!  Thankfully my great family all take it and give me a lot of help and support.