Glycogen Storage Disease

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    Glycogen Storage Disease Awareness Week 2019

    It’s Glycogen Storage Disease Awareness Week and I have a disease called Pompe which is a GSD Type 2. Please wear your blue or green to show your support!

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    The VAMPIRE Lab Strikes again!! LOL

    Why is it every time I get blood work it has to be like a vampire draining my dry!!!
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    Like being chronically sick is not already challenging and draining enough, then I have to work to remake all this blood SMSH :)
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    My friends and family always were shocked when I told them it is usually up-wards to 15 vials of blood each time.. they couldn’t believe it - so I started taking pictures lol!
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    Can I be real and just say I HATE having blood work taken now, after all these years just exhausting...
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    However, I am working hard at positively re-draining things in my mind around my illness, and my life in general so this morning here are some things I told myself to help get through the uncomfortable feelings of having my blood drawn...
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    “This is not my favorite thing, it makes me uncomfortable, but I will be okay, I can get through it just like I always have.”
    “I might not love this, but I am thankful that I have a doctor who cares enough to check my body is okay.”
    “I am lucky to have this kind compassionate phlebotomist to draw my blood this morning.”
    “I am lucky to have medical care at all, as many around the world today at this very moment do not and would trade places with me in a heartbeat.”
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    #gratitudegetsmethrough #mindfullness #EhlersDanlosSyndrome #MitochondrialDisease #InvisibleIllness #Spoonie #Mito #LymeDisease #Dysautonomia #McadDeficiency #GlycogenStorageDisease #PTSD

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