Live Life Rare by Stephen V. Smith

The life we want to build, and the legacy we want to leave for those who follow us, depends on how we choose to live today. Let’s choose to live life rare!

[Live Life Rare by Stephen V. Smith @liveliferare]

@RareRevolutionM Myasthenia gravis

[Live Life Rare by Stephen V. Smith @liveliferare]

https://t.co/Vb4FmdkRyy

[Live Life Rare by Stephen V. Smith @liveliferare]

When asked what I mean by living a rare life, there was no better example than our neighbor Ralph Dawson

[Live Life Rare by Stephen V. Smith @liveliferare]

https://t.co/0AsOeEwu5t

[Live Life Rare by Stephen V. Smith @liveliferare]

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[Live Life Rare by Stephen V. Smith @liveliferare]

Have you spent time in ICU? My latest newsletter examines how the decisions made during an ICU stay can have a long-term impact on your physical, mental, and emotional health. In upcoming issues we'll look deeper at
@WesElyMD's excellent book "Every Deep Drawn Breath." Subscribe!

[Live Life Rare by Stephen V. Smith @liveliferare]

My diagnosis 27 years later wasn't televised ...

[Live Life Rare by Stephen V. Smith @liveliferare]

https://t.co/TnJYash0Jf

[Live Life Rare by Stephen V. Smith @liveliferare]

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[Live Life Rare by Stephen V. Smith @liveliferare]

How has rare disease impacted your mental health? Let’s talk about it …

[Live Life Rare by Stephen V. Smith @liveliferare]

@rarelikeher The newsletter in my bio features some articles that should be helpful. Free to subscribe.

[Live Life Rare by Stephen V. Smith @liveliferare]

https://t.co/JeRxKJqkTO

[Live Life Rare by Stephen V. Smith @liveliferare]

@SadlerVaden What a lovely tune and session! Thanks for sharing.

[Live Life Rare by Stephen V. Smith @liveliferare]

As I prepare for a possible hospital stay, I wrote the latest article in my Live Life Rare newsletter. Please go read and subscribe if this topic interests you. Thanks!

[Live Life Rare by Stephen V. Smith @liveliferare]

I’m writing an article about grief in those living with a rare disease. I’d love to hear from anyone who has experienced grief over the loss of independence, hobbies, vocations, etc. before diagnosis. DM me if you have a story you’d like to share. Thanks!

[Live Life Rare by Stephen V. Smith @liveliferare]

@OwningMyStory Interesting. I read recently that not everyone experiences grief in a clean and tidy succession of the classic 5 stages. I believe that. I recently reached a turning point in the process where I’ve accepted that my new normal will never look like my old life again. It’s hard.

[Live Life Rare by Stephen V. Smith @liveliferare]

@shill529 Good luck!