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Dealing with auto immune disease

Monday, June 29, 2015

Dealing with auto immune disease is a daily battle that many go through as a silent battle. We don't look sick, so we must just be lazy. Every morning I wake up with numb hand or hands. When I am on my mini walks and taking pictures I need a cane and good sturdy walls to lean on for balance. My hands go numb while taking pictures. When it is under 80 degrees, I get chills. I can never get warm even with tons of blankets on..it is like I am cold from the inside out....that's Reynauds. My body goes completely dry and every joint, muscle and bone screams for attention... that's Sjogrens. Many days I have the blessing of having walls that I can rest a little and then get around. then there are the days ( usually two after a good day of exercise) where I can't function...can't see, can't walk (pain)..I feel like a walking stone. On these days, I can get two fingers out from under the blankets and do my art on the computer.
It is very difficult for people to understand, because we strive to be upbeat and push as far as we can when we have a clear state knowing that we end up paying for it later with total shutdown. Total shutdown does not stop my desire to get things done...it simply stops progress dead in its tracks for a while.
This is a healing journey with ups and downs. If you know anyone who has these challenges, be patient when words come out all wrong (after nine), when they are wrapped up in a cocoon, when they can't venture very far away from a bathroom (that's the PBC and associated GI stuff)(at least some great books are being read), and when we can't tell you how deep it hurts because to dwell on the thought makes it worse.
I am Blessed with good family and friends...but sometimes the very nature of the beast can get overwhelming until the sun comes out again and we begin our baby steps once again. I Love You All!
Time to get back in balance, heart emoticon

Pain is overwhelming

Under the weather...blankets and hot tea

Baby steps...keeping goals in sight
My 100 foot journeys

There are good days! Breathe. Be Well. Be Happy.
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Member Comments About This Blog Post
  • MARYALICE411
    emoticon Do your best that's all we expect. We understand that some days are different then others. Some how people expect you to be the same everyday. We understand it is a day by day thing
    1859 days ago
  • KEEP-GOING
    I am sorry I don't understand why we have such things. I am proud of you for blogging. I pray God bless you with many many wonderful days. I see you know the best thing to do is focus on upbeat positive things. That in itself is a blessing rather than dwelling in negativity. God save you God keep you in His love.
    1861 days ago
  • PHHHISC
    emoticon
    1861 days ago
  • 50YEARSAWIFE
    Enjoy each day as best you can. Hugs
    1861 days ago
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