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Hi, I am new to the group and so glad that Richard reached out to invite me to join. I am a Ménièrian with hearing loss on both sides. My balance nerve on the left was cut back in the ‘90s. Even though it gave me relief at the time, it has proven to be a mistake as my right nerve did not compensate as it should have. I have terrible balance and use a walker 24/7. So glad to be here! #Meniere ’s #vestibular #Hearing loss



Even with Ménière’s and many other invisible diseases, I still feel blessed with the gift of inspiring others. It makes my life feel less dark and alone.

#RareDisease #Meniere ’s #vestibular migraines #club feet #concussions

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Completed #diy #Perler Coaster set

I’m so proud I’ve been focusing + compiling each small projecting. It’s been satisfying. I’ve had to stop periodically as my chronic #vestibular #migrain s act up + bother my eyes but that’s training me to stop when I need a break I suppose.

What’s everyone else been working on!? These are going to look fabulous on my citrus patio in a few weeks (hopefully that soon if not sooner!) 👍🏻 🍊 🍋 🍍🥝🍉 #Summer


Happy Balance Awareness Week!

Fun fact: Did you know that a whopping 69 million people live with a balance or #vestibular disorder? It sounds like a lot of people, and on a grand scale it is, but I'm constantly surprised by how many people don't understand, or have never met someone like me.

My #Disability is called oscillopsia, which means that my vision bounces 24/7, I am unable to walk in a straight line, I (mostly) lose my vision when it gets dark outside, and my daily tasks require me to use something like 3.8x more energy than the average person. I don't feel roller coasters or elevators or the speed of cars, and I am unable to swim because my body has no concept of its awareness/space in liquid. Because my world is constantly oscillating, I also have chronic daily #Migraine .

If you have a #RareDisease or condition like I do, I'd love to hear from you.

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