Rare Disease

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Rare Disease
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    Having a ‘rare’ disease made me feel like I was the only person in the 🌎 🧍🏻‍♀️#CysticAdenomyosis

    Being diagnosed with Cystic Adenomyosis helped me in so many ways, it answered so many questions. Why I was getting all of this abdominal pain, why my periods had stopped, why I was bloating so badly and why I was always hormonal!! But then my GP explained to me Adenomyosis is very common, especially in women of child bearing age (which I am). But Cystic Adenomyosis was an extremely rare form of the disease and only 46 cases since 1908 had been diagnosed worldwide. I nearly chocked on my water, I couldn’t have heard that right, right? Wrong I did hear it right. And right there in that moment |I felt like I was the only person in the world| dealing with this, no one to turn to for support, no doctor to help me who’d ever seen and successfully treated a case without having to resort to a hysterectomy.
    I still feel that some days and still I feel I’ll end up having an hysterectomy because of a surgeon that hasn’t treated this before is unable to save my uterus. And now 47 will forever be my unlucky number!
    #RareDisease #CysticAdenomyosis

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    How did you meet your pet?

    All pet parents have that one moment in our lives where we looked at our pet for the first time and thought, "Yup, you’re my best friend!" …Or was that just me?

    I have several pets, but in terms of how I met my dogs, let’s just say two were born in my room while I was away in college, and I came home to the cutest puppies in the world 😩🐶.

    Share your pet meet-cutes in the comments below.

    #MightyPets #MentalHealth #DistractMe #RareDisease #ChronicIllness #ChronicPain #Spoonie

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    Have you given Table Talk With The Mighty a listen yet? 🎧

    Each week on Table Talk, Mighty staffers dive into their experiences with mental health, rare disease, migraine, chronic illness, and more to remind you (and each other) how powerful sharing our stories can be.

    Each podcast episode is bite-sized, usually between 10-13 minutes. Here are all of our episodes so far:

    🗓 The Daily Choices We Make Because of Chronic Illness

    🎄 Health & the Holidays: Isolation, Loneliness, and FOMO

    😵‍💫 What We Do When Panic Attacks

    You can listen to all of our episodes here, which release every Tuesday: anchor.fm/mighty-table-talk

    #DistractMe #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicIllness #ChronicPain #RareDisease #Disability

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    How have you grown as a person?

    There’s a thought-provoking Rumi quote that reads, “”Yesterday I was clever, so I wanted to change the world. Today I am wise, so I am changing myself.” Personal change is another way to think about personal growth — the act of bettering ourselves and tapping into who we were always meant to be.

    How have you grown? Are you more patient than you used to be? Living in the moment more? Putting your art out into the world? Accepted your illness after years of denying/push back against its existence?

    Share with us in the comments (and remember: sometimes the most important growth is the kind others can’t see).

    #MightyMinute #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #Parenting

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    What’s a change you’re excited to make? What’s standing in your way?

    We’ve spoken a lot this week about the ways in which change happens unexpectedly or can cause anxiety and stress. To close out the week, let’s share the changes we’re excited to make! This can be anything from dyeing your hair a fun color to adopting a new furry friend. If there are any obstacles standing in the way of making this change happen, feel free to share those as well. Let’s cheer each other on!

    🪶 P.S. Here’s a great quote about change from the incredible James Baldwin — maybe it’ll inspire you on your journey!

    💪 “Not everything that is faced can be changed, but nothing can be changed until it is faced.”

    #52SmallThings #CheckInWithMe #MentalHealth #Selfcare #ChronicPain #Depression #ChronicIllness #RareDisease #Disability #Autism


    My Walk

    #RareDisease hello please let me know if anyone else has my condition.
    Lupus and CREST syndrome.
    Each day I get up is always different.
    Pain and my skin and nerves are not happy.
    My gut is so very difficult.
    My doctor told me in in 2015 that I had CREST syndrome my mi

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    What brings you the most shame?

    Shame is a difficult feeling to have. Coming from personal experience, shame can be debilitating and hard to move past. Right now I'm battling the shame that comes with having a mental health condition and not seeming like I have things "all put together."

    🌹 P.S. If shame is getting you down right now, know that you're not alone and it's OK to not feel OK. We can take baby steps together in getting to a better place. We won't feel this shame forever.

    #CheckInWithMe #Grief #MentalHealth #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #ObsessiveCompulsiveDisorder #PTSD #EatingDisorders #ChronicIllness #RareDisease #ChronicPain #Spoonie #EhlersDanlosSyndrome #CrohnsDisease #Cancer #Migraine #Fibromyalgia #MultipleSclerosis