tethered spinal cord

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    Does anyone struggle with feeling inferior because you can’t go out in the cold? #TetheredSpinalCord #Neuropathy #coldfeet

    Now that cold weather has hit, I’m spending most days at home, under heated blankets. If I do go out, I deal with pain, and legs and feet that will be ice cold to the touch for the rest of the day. I really struggle with feelings of inferiority!

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    I'm getting no treatment I have fibro, had surgery to detach my tethered spinal cord, it reattached. No ins, have to lay down all the time

    I'm just really giving up, when I can get to the Dr I get no help. #Noinsurance #Fibromyalgia #TetheredSpinalCord #cantwork #painisrelentless #treatedbad

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    To the person who feels hopeless on their diagnosis journey.

    I see you.
    I have been you.
    I am sorry you feel lost.
    Not having a name to put to the thing that hinders your bodies ability to function is menacing.
    But don’t give up.
    It may not be today, or tomorrow, or this year,
    But if you are persistent and advocate for yourself,
    Someday you will meet the right doctor that will give you the diagnosis that you have been yearning and praying for.
    The diagnosis that makes everything else make sense.
    So just keep keepin’ on.
    Because I see you,
    Because I have been you,
    and because no one deserves to feel hopeless.
    The is light at the end of the diagnosis journey.
    ❤️🦓
    #MightyPoets #EhlersDanlosSyndrome #EhlersDanlosSociety #RareDisease #GeneticDisorder #LivingWithPOTS #RaynaudsPhenomenon #ChronicPain #Osteoarthritis
    #ChiariMalformation #ArnoldChiariMalformation #PosturalOrthostaticTachycardiaSyndrome #MCAS #MCAD #MastCellActivationDisorder #MastCellDisease #SpinaBifida #TetheredSpinalCordSyndrome #TetheredSpinalCord #rarediseaseawarenes #Dysautonomia #ChronicIllness #Spoonie

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