Polymyositis

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Polymyositis
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    I’m new here!

    Hi, my name is MrsAE. I'm here because I spend most days on my bed resting and thought it might be nice to have similar people to communicate with.

    #MightyTogether #RelapsingPolychondritis #Polymyositis

    3 comments
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    I’m new here!

    Hi, my name is CarryingOn. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #Lupus #Polymyositis #PapillaryThyroidCancer

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    Life is a balance between letting go and holding on

    I woke up this morning to an alert on my phone that I got my test results in from bloodwork done last week. In bed, with one eye open, I looked at my results. Not good. A rare and terminal autoimmune disease: Systemic Sclerosis with possible polymyositis overlap.

    I want to let go as a patient: I want to cry and panic and ruminate and ask why me?

    I also want to hold on like a healthcare provider: I have seen what positivity and a healthy mindset can overcome. I know it was caught early. I know there are treatments/medications.

    I am torn between the two people I am and it's left me just sitting here, drinking coffee, feeling calm in my heart and panic in my stomach.

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    Concerned my RA is actually polymyositis. Muscles hurt like crazy. Can anyone tell me what it feels like? How did you find out? Waiting blood test.

    #Polymyositis

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    "How Are (Really) Feeling?#ChronicPain #EhlersDanlosSociety #Myositis ,

    Yes, you !

    One thing, one Really Big LittleThing, that I said, starting as a child, was (when asked how I felt?)

    (pick just one,)

    "Oh,....
    -not too bad
    or:
    -ok
    -a little sore
    -kind of tired
    -having tummy trouble
    a little sleepy,

    And then, I always said, "and how are you"?
    I turned it back.
    (because having attention focused on me, gave me anxiety). Why?

    My Momma had made it painfully clear, just how aggravated she was when I was sick or home from school. I was sick a lot, especially from 1st to 9th grade. Streph, EBS, Bronchitis, Allergies, Colds. Aches, sprains, broken bones. She also hated driving, and Drs., So I was usually treated by a phone call, and an RX for Amoxicillin.

    I always cared more for others, and I really wanted to be happy, active, an asset, loved, appreciated.

    But, my mistake was that of being afraid to push others away if I were to be negative, or honest, about how I was.

    That little habit turned out to spite me, by making me "sound" stronger or healthier mentally and physically, than I really was.
    People wanted to be released from having to care about it.

    So, when I started needing those same people to hear me, to realize that I felt worse, or my condition was/is really serious, they found it hard to process.

    All my years of saying, "I'm Okay", had Brainwashed them into refusing to think that I was not "Okay, or Just Fine, or Well Enough". So, Then, when I did limp, or crash, I felt like they saw me crying wolf! Poor Me!

    My desire to make things easier for everyone else, cost me my family, and my nice life. Because for 25 years I've been increasingly deteriorating, but they don't have time, anymore, or compassion, or empathy, to see how much I truly need them.

    Don't Sugarcoat your feelings. If they seem too sharp to share; If you can't get the right thoughts out, try writing them as letters, or using a journal that you could share, at times. Stick up for yourself!

    And there may be times where you have to call your problem, an "8-9", instead of a "3-4", so they sit/get up or notice, you Really need help. You really Deserve it! So do I.
    #EhlersDanlosSyndromeAwarenessMonth
    #EhlersDanlosSyndrome
    #ChronicPain
    #Dermamyositis
    #Polymyositis
    #MixedConnectiveTissueDisor -ders
    #Fibromyalgia
    #sjogrens
    #Anxiety

    3 comments
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    #LupusAwarenessMonth

    in November 37 year diagnosis of lupus and interstitial lung disease/pulmonary fibrosis, fibromyalgia, polymyositis, pulmonary hypertension. Painful but nevertheless thankful - still here. It's not over until GOD says so 🙌
    #keepphighting

    2 comments
    Post

    Happy Friday. I was recently diagnosed with Polymyositis ( PM) are there any others with PM on this site? I'm interested in connecting.

    #RareDisease

    1 comment