Monica Michelle is joined by author Emily Falcon.

Emily lives with ALCAPA.

In this episode, Monica and Emily discuss:

• Growing up sick
• Post-surgery support
• Having a public body
• Self-motivation and adventuring

TIMESTAMPS

00:28 - Being a sick kid & Emily’s book title

07:28 - Mortality

10:16 - Portrayal of disability in media

12:21 - Post-surgery support

19:23 - Having a public body

23:43 - Self-motivation

29:46 - Emily’s tips for adventures

The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com

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Monica Michelle is joined by activist Cosmo C.

Cosmo lives with porphyria, Ehlers-Danlos syndrome, and fibromyalgia.

In this episode, Monica and Cosmo discuss:

• Pets
• LARPing
• Disability income and surviving on it
• Privilege and Prejudice

TIMESTAMPS

00:33 - Cats and LARPing

12:05 - Adulting on disability income

22:01 - Privilege and prejudice

31:19 - Deadlines, speech, and steroids

The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com

Hosted on Acast. See acast.com/privacy for more information.

Hey everyone – Spoonies, Wellness Seekers, practitioners – all ya'll – Eva here.

It’s a beautiful blue day up here in Rochester NY.

I’ve been inside for 5 days straight and miraculously I'm not going crazy just yet.

Ok...so 3 quick things:

#1. For the next few weeks, Monica and I plan to publish episodes that focus on the “How to’s” when it comes to COVID19.

Why? Well, it’s kind of tough to ignore right now for anyone let alone people like us with chronic illnesses and disabilities.

Monica and I – like you and the rest of the world – are going through this together, and just like So many organizations around the world doing their part to support their communities, the least we can do is help ours by giving some tips and tricks to make the best of not-ideal situation.

Some current topics on the docket for upcoming episodes:

· How to navigate care during COVID19

· How to Survive Relationships during COVID19

· How to Support your mental health during COVID19

· How to use telemedicine during COVID19

FUN TOPICS? Not so much. But knowing Monica and me, we’ll be sure to get a few giggles in there too.

Now we want to hear from you: what else would you like to learn? What would help you through these uncertain times? Do you have a guest or resource in mind? Always love suggestions. If you have any, send an email to: [email protected]

#2. Invisible not broken is expanding! We’re not only a podcast but soon to be a podcast network. Basically that means a bunch of other different but equally or even MORE awesome podcast shows related to chronic illnesses will be joining our invisible not broken family. If you haven’t noticed, Monica and I have already split ours into two different names as well. monica’s is the Explicitly Sick podcast and mine is the Wellacopia podcast (although between you and me, im probably changing that name soon). All this to say, stay tuned for updates but most importantly right now, this expansion is going to require some lovin from you guys.

The best way to show us your love is by becoming a Patron! For just $5 or even $1 you can make a big difference in helping us get off the ground. We’ve always been entirely self-funded, so if you appreciate the content that Monica and I have been producing – whether youre brand new or a long time fan – we’d greatly appreciate your generous gift of the equivalent of 1 starbucks coffee a month.

As another gift in return, we’re giving our patrons access to private live group chats and Q/A’s plus some “Snarky Saturday” poster art made by the talented miss Monica.

Lastly #3 Going back to the topic of Telemedicine, Wellacopia is upping the ante on telehealth care right now in support of the coronavirus pandemic and the whole “stay safe stay home” agenda.

If you are looking for mental health therapists, functional medicine doctors, immune-specialist nutritionists, physical therapy, – we have these practitioners and more all over the country available for care via video chat. If you want to get matched, visit Wellacopia.com or text me directly and ill match you myself.

Text “I seek care” to the number 646 883-3022, again that’s 646 883-3022.

We can also just chat. Always love connecting with my fellow wellness seekers and Spoonies.

Ok that’s it for now.

As always be kind. Be gentle. Be badass everyone!

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Noah: Spina Bifida*Scifi Fantasy & Escape* Reading & Empathy* New House ADA* Airlines & Wheelchairs

Noah and I chat about some of my favorite topics from airlines and wheelchairs* Dr Who and other sci fi shows and how they handle disability* Universal Design * School and disabled Access * Reading Fiction and Building Empathy

Invisible Not Broken is a chronic illness and disability podcast Invisible Not Broken with Monica Michelle

Please share with friends and your community

Subscribe to our newsletter and the podcast

Name*

Noah Mussay

Pronouns

he/him

Website and handles you want published*

@NoahMussay (Twitter), @JulieWestEvents (Twitter I run for work)

What is the name of your disorder, When did it present?

Spina Bifida. It presented fairly early in my mom's pregnancy, so I was born with it. I also have Arnold Chiari Malformation, hydrocephalus, and scoliosis.

What do you want people to know about your daily life?

My daily life is relatively unextraordinary. I work. I play video games, I read, and I obsess over Big Brother and Doctor Who. My disability does affect my daily life, and I definitely worry about how I will deal with the struggles it presents when I'm on my own, but I genuinely like my life.

What frightens you?

I'm frightened by the fact that there are bigger hurdles that I have to face as a disabled person, and although I have a great support system, I sometims fear that I can't rely on myself for that support, and I don't have the benefit of hindsight to know that I can make it work on my own.

What is your favorite purchase under $100

Mobility aid: My grabber, which I use to grab things that fall or are too high. Less serious answer: Last summer, I purchased an audiobook, which is an in-depth analysis of Season 3 of Big Brother.

Anything you want to cover or promote?

I definitely think talking about my adoescence would be interesting. I was never an outgoing child, but I had friends in elementary school. Then, in fifth grade, I had a medical situation arise that made it, so I had to be pulled out of school for the rest of the year. When I got returned to school the following year, I felt different and closed off, and it became very hard for me to make friends, and I became a bit resentful that nobody seemed to want to be my friend. It made for a very isolating middle school through high school experience.

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Note: This is my opinion only. I have Ehlers-Danlos, POTS, MCAD, and Fibromyalgia.

If you just want a quick answer: Subaru Outback 2023

Hi everyone!

Welcome to the new series: Disabled Tech Reviews

The list of “special” and “luxury” items are not so for those of us in chronic pain. I have a budget that for my personal sit-in gets laughed out of existence.

The general list used to be:

Safety

MPG

Enough space for kids

A CD player

Ah, the simple life that at the time I thought was untenable. Now with Ehlers dances so advanced I must at the very least have my power wheelchair available I have found sedans are just crossed off the list. They might have the ability with a master’s thesis in Jenga to be able to fit the wheelchair but even if this was possible my cane will not fit as well in case I have a wild flight of optimism that I might be able to walk. Those of you in the know please feel free to roll your eyes or laugh the knowing laugh of those of us who will absolutely have the cause of death written optimism she knew better but thought she could anyway.

Ok so even without the wheelchair I might have the body of a middle age woman but my ligaments are more that fossilized posits not you found at the bottom of a bag covered in debris. What I am saying is sedans are low to the ground. Getting in and out of them is my Everest.

So sedans and sports cars are out. Minivans while intriguing do not have the space without a massive amount of engineering. Trucks! I LOVE trucks I have wanted one my entire life but the securing in the bed and walking around let’s just say I was too worn out after a quick try to even think of driving. But the electric trucks have frunks! Ah yes, the frunk. I LOVE the lightning. The F150 is the car I dream of as I remember the boys in high school dreamed of having a Lamborghini, and for the cost, it is just as likely I will ever own one. If you can afford it please let me know how amazing it is as a wheelchair user. I promise no dark jealous thoughts will be cast your way only slightly simmering resentment.

So an SUV it is. This should not have been limiting but let me give you my list if I am ever to consider driving:

Safety

Space for wheelchair, child, canes, GIANT BEASTIE wolf, a small but active hamster disguised as a pug, and groceries

A door that opens wide enough I do not have to pivot

Blind spot

AI to help me stop if my leg seizes and lane departure warning. Basically, any safety feature that will save me if my body decides to just not (this is where luxury gets redefined. I have no issue paying extra for sunroofs, seat material, or sound systems. These are in fact LUXURY. Back in the day, Volvo invented a 3-point seat belt. It saves lives. They gave the plans away. For safety. The ability to survive should not be a luxury. This is my hill it has a pre-dug grave and a soap box I am not moving from it.)

This started with plug-ins or PHEV there were 3 on the market I wanted none to exist in real life despite the company’s best advertising efforts.

Thank you all. We probably won’t be on the cutting edge of any tech but we will do our best to review what we have to make our lives as autonomous as possible from kids care (fluff feather and human) to feeding yourself, to self-care apps, to VR, to the tech we use to run Invisible Not Broken. Please feel free to reach out.

Head over to www.invisiblenotbroken.com for more podcasts and blogs about life while disabled.

Remember to Be Kind. Be Gentle. And of course, be a Bad Ass.

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