Ep 53: Super Mini Recap of the 34th Annual Marfan Conference!

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We are so excited to share this recap of the 34th annual Marfan Conference in Stanford. Andy talks about the amazing activities, medical appointments, workshops, seminars and more! And she shares how beneficial the conference is on so many levels. She talks about her performance with Katie Lasky Lovebomb and Joleen and Alex ask questions and we discuss the importance of community. Joleen reads a listener iTunes review! And we share some sound clips from the performance and from a video with Andy’s mom.

To watch the live stream with Andy, Katie Lasky, Dominga Noe and Austin Carlile go here: https://www.facebook.com/katie.lasky.92/videos/10160681213145080/?hc_ref=ARTZg_oRs4YoBJSrMzp9FXs4zcDJ6dyKFhGSWFNkZVEjcHg02-A5muvri8K2FeSZpB0

MEMORABLE MOMENTS:

“How does your filter process stuff? Oh I don’t have one!”

“We can’t cry. We don’t have enough time!”

“I’m picturing this is like Comic Con for Marfan stuff!”

“Did you get your degree from Wikipedia?”

“Honey, this is soap!”

“Everyone who has ever gone to the Marfan Conference wishes they would have gone sooner.”

SUPPORT THE PODCAST ON PATREON:

Recording this podcast is rewarding and fulfilling, but it’s also a lot of hard work. We want to bring you more shows like this one and we want to continue to grow our audience and we want to stay ad-free! In order to do this, we have set up a Patreon page where we are offering a bunch of really cool rewards and perks in exchange for small monthly contributions. We would love your support! So check out our Patreon page today and donate if you can! https://www.patreon.com/dealwithitpodcast

LINKS:

Want to get an email when new episodes are released? Subscribe via email here: http://dealwithitshow.com/subscribe-via-email/

We want to hear from you! Email us your diagnosis stories, share any inspirational quotes, questions, comments, and reactions. What topics should we discuss? What are your New Years Resolutions? Here’s a link to contact us: www.dealwithitshow.com/contact

The signs of Marfan Syndrome: https://www.marfan.org/about/signs

Follow the Marfan Foundation on Facebook: https://www.facebook.com/pg/TheMarfanFoundation/posts/

National Alliance on Mental Illness support: https://www.nami.org/Find-Support

This podcast is edited and produced by Alex Stein. Listen to his podcast here: https://www.thealexsteinpodcast.com

Follow us on Twitter @dealwithitpod: https://twitter.com/dealwithitpod
Follow us on Instagram @dealwithitpodcast: https://www.instagram.com/dealwithitpodcast/
Join our Facebook community: https://www.facebook.com/dealwithitpodcast/

Remember to rate, review and subscribe on iTunes: https://itunes.apple.com/us/podcast/deal-with-it/id1244513630?mt=2

Ep 50: Our 50th Episode! Instagram, Confidence, Sam Grittner Love, with Andy, Joleen and Alex

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The Deal With It Podcast is celebrating a year on the air! We are so thankful for all the love and support over the past year and we’re excited to share this episode with you! We talk the origins of the podcast, our dreams, goals and our anxieties! We share some awesome insights from the talented comedian Sam Grittner and we encourage everyone to follow him on Twitter: https://twitter.com/samgrittner

We also talk Instagram modeling, pursuing our passions and feeling good about our fashion and style.

THE CHECK-IN: Joleen talks about being at a good place mentally and being less afraid of judgment and Andy talks about recently doing the Marfan Walk for Victory in Pasadena.

We leave you with some of our favorite moments from the past year! We hope you enjoy!

And as promised, here are the secret prom dress photos Andy took as a high schooler:

Be sure to join our Facebook page for a great community of love and support and let us know what you want to see next on the podcast! https://www.facebook.com/dealwithitpodcast/

See Andy and Joleen at Acme Comedy Club in Minneapolis! June 26th-30th – Get your tickets here: https://acme-comedy-company-acme-comedy-company.seatengine.com/events/23538

 

MEMORABLE MOMENTS:

“We grew up on Oregon Trail. We don’t know!”

“My dad’s like: Sex will make you die!”

“I had a case of the bums.”

“It’s Instagram! Put your face in it!”

“Here’s a secret, go to a cool store, hide the tags, and take some pictures in the back. It’s retail therapy.”

“Hey, dare me to try this on!”

“Look what I’m wearing, I have red pants on!”

“I’m genuinely interested, what’s weird about it?”

SUPPORT THE PODCAST ON PATREON:

Recording this podcast is rewarding and fulfilling, but it’s also a lot of hard work. We want to bring you more shows like this one and we want to continue to grow our audience and we want to stay ad-free! In order to do this, we have set up a Patreon page where we are offering a bunch of really cool rewards and perks in exchange for small monthly contributions. We would love your support! So check out our Patreon page today and donate if you can! https://www.patreon.com/dealwithitpodcast

LINKS:

Want to get an email when new episodes are released? Subscribe via email here: http://dealwithitshow.com/subscribe-via-email/

We want to hear from you! Email us your diagnosis stories, share any inspirational quotes, questions, comments, and reactions. What topics should we discuss? What are your New Years Resolutions? Here’s a link to contact us: www.dealwithitshow.com/contact

National Alliance on Mental Illness support: https://www.nami.org/Find-Support

This podcast is edited and produced by Alex Stein. Listen to his podcast here: https://www.thealexsteinpodcast.com

Follow us on Twitter @dealwithitpod: https://twitter.com/dealwithitpod
Follow us on Instagram @dealwithitpodcast: https://www.instagram.com/dealwithitpodcast/
Join our Facebook community: https://www.facebook.com/dealwithitpodcast/

Remember to rate, review and subscribe on iTunes: https://itunes.apple.com/us/podcast/deal-with-it/id1244513630?mt=2

Ep 39: Stealth Dyslexia, Cannabis, Positivity, with Alex Shifman

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Writer, Comedian and podcast host Alex Shifman joins us to talk about Stealth Dyslexia, Cannabis and his love of facts! He shares many lovely and awesome facts about helpful drugs, and his experiences with them, answering our many questions and being open and honest. We get his dyslexia origin story and he talks about the unique challenges people with Stealth Dyslexia face, and the amazing ways we can adapt. We also talk to Alex about mushrooms, acid, molly, and their potential usage for helping people with anxiety, PTSD, and other mental health conditions. Andy talks through her recent experience with CBD oil and shares the symptoms she felt and the effect on her chronic pain and we talk about stigmas around drugs.

We also get to talk to Alex about his amazing podcast called “At least there’s this.” The world can be a messy and awful place sometimes, but… At least there are things in our lives that make the world a better place. Each guest talks about something that makes the world beautiful. Listen here: http://www.nerdistschool.com/at-least-theres-this/

Joleen shares her connection with the show Buffy the Vampire Slayer and we talk about a TED talk on embracing negativity.

The full TED Talk we listened to: https://www.ted.com/talks/susan_david_the_gift_and_power_of_emotional_courage/transcript

THE CHECK-IN: Andy talks about trying CBD oil/Cannabis for chronic pain, and Joleen talks about being told: “We need to get a weight on you.”

MEMORABLE MOMENTS:

“Just ask for your weight in kilograms and don’t do the math.”

“I love facts! Well, I love gossip and making stuff up!”

“I had no past and there was no future and I couldn’t think of a single memory… ANDY you hit Nirvana. Do you have any idea how lucky you are?”

“I posted on Facebook that I tried CBD and thought, could I go to jail?”

“Nobody liked to smoke weed with me. I just wanted to talk about World War II and Genocide.”

“Usually there’s a dude who gets high and wants to talk about swords.”

“Alex just wikipedia’d sword. Oh it’s a bladed weapon!”

“Buffy was powerful and able to defend herself, and I was drawn to that.”

“There’s so much cool shit about candles.”

“I can’t just choose happy, because there’s so many other emotions!”

SUPPORT THE PODCAST ON PATREON:

Recording this podcast is rewarding and fulfilling, but it’s also a lot of hard work. We want to bring you more shows like this one and we want to continue to grow our audience and we want to stay ad-free! In order to do this, we have set up a Patreon page where we are offering a bunch of really cool rewards and perks in exchange for small monthly contributions. We would love your support! So check out our Patreon page today and donate if you can! https://www.patreon.com/dealwithitpodcast

LINKS:

Want to get an email when new episodes are released? Subscribe via email here: http://dealwithitshow.com/subscribe-via-email/

We want to hear from you! Email us your diagnosis stories, share any inspirational quotes, questions, comments, and reactions. What topics should we discuss? What are your New Years Resolutions? Here’s a link to contact us: www.dealwithitshow.com/contact

 

Alex Shifman: At Least There’s This Podcast: http://www.nerdistschool.com/at-least-theres-this/

The signs of Marfan Syndrome: https://www.marfan.org/about/signs

National Alliance on Mental Illness support: https://www.nami.org/Find-Support

This podcast is edited and produced by Alex Stein. Listen to his podcast here: https://www.thealexsteinpodcast.com

Follow us on Twitter @dealwithitpod: https://twitter.com/dealwithitpod
Follow us on Instagram @dealwithitpodcast: https://www.instagram.com/dealwithitpodcast/
Like us on Facebook: https://www.facebook.com/dealwithitpodcast/

Remember to rate, review and subscribe on iTunes: https://itunes.apple.com/us/podcast/deal-with-it/id1244513630?mt=2

Ep 38: Marfan Awareness Month, Part 2 with Avi Silver

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Improvisor and poet Avi Silver joins us for part 2 of this special 2 part Marfan Awareness Month series. Avi shares his diagnosis story and a quick family history including how he is a triplet. His Father and Sister also have Marfan Syndrome and we talk about how different Marfan Syndrome expresses itself even within the same family. Avi and Andy compare back brace stories and commiserate together and Avi talks about having osteopenia (weak bones.) Avi shares his harrowing aortic dissection adventure involving an emergency plane ride and a heroic supportive family. Avi’s mom is AMAZING. Avi talks about having 9 eye surgeries and several retinal detachments and shares another crazy story, this time about his vision, including being told that he may never be able to read again. Avi talks about improv, poetry and his desire to try standup comedy, which he absolutely must do! We ask Avi some personal questions and get some amazing insight and leave with an inspirational story!

Andy and Avi go through the signs of Marfan Syndrome and compare notes and we talk about the Marfan Foundation events going on around the country. You can get more info here: https://www.marfan.org/get-involved/fundraising-events/walk

For more information about the camp Avi was talking about visit here: https://chailifeline.org/about

We thank you so much for listening! If you’d like more Marfan action we recommend listening to episodes 1, 2, and 9, 37 and actually every episode touches on different aspects of life with Marfan Syndrome, through Andy’s experiences.

And remember Know Fight Win! #knowFightWin

THE CHECK-IN: Andy and Joleen talk bruising, bleeding and falling and the surprising ways people react to pain.

MEMORABLE MOMENTS:

“Let’s play the game, “What’s that clicking sound?””

“You just kept acting? Damn Meryl Streep!”

“I don’t want to go to the ER right now! I’m having too much fun!”

“I got one hour a day to do whatever I wanted!”

“Get out of the pool andy! Never!”

“My friends loved my back brace. Let me punch you!”

“Oh I could go blind? Why the ef didn’t you tell me?”

“I thought I was just Emo, but nope, I was depressed.”

“My little big heart. That should be the name of your memoir!”

“I wasn’t super involved in my health, as a 7 year old.”

“By the way, there’s a really good chance you may never be able to read again.”

“I just said, screw it. And I took my shirt off. And no one said anything. It was a turning point. I shouldn’t be ashamed about anything about my self.”

“Everyone can see that I’m 6 foot 9. I can’t not stand out. So I might as well stand out positively.”

 

SUPPORT THE PODCAST ON PATREON:

Recording this podcast is rewarding and fulfilling, but it’s also a lot of hard work. We want to bring you more shows like this one and we want to continue to grow our audience and we want to stay ad-free! In order to do this, we have set up a Patreon page where we are offering a bunch of really cool rewards and perks in exchange for small monthly contributions. We would love your support! So check out our Patreon page today and donate if you can! https://www.patreon.com/dealwithitpodcast

LINKS:

Want to get an email when new episodes are released? Subscribe via email here: http://dealwithitshow.com/subscribe-via-email/

We want to hear from you! Email us your diagnosis stories, share any inspirational quotes, questions, comments, and reactions. What topics should we discuss? What are your New Years Resolutions? Here’s a link to contact us: www.dealwithitshow.com/contact

Find Avi at Da Poetry Lounge: http://dapoetrylounge.com/

 

Info about the camp Avi talked about: https://chailifeline.org/about

You can donate to the Marfan Foundation all month long at www.Marfan.org/dayofgiving18

The signs of Marfan Syndrome: https://www.marfan.org/about/signs

National Alliance on Mental Illness support: https://www.nami.org/Find-Support

This podcast is edited and produced by Alex Stein. Listen to his podcast here: https://www.thealexsteinpodcast.com

Follow us on Twitter @dealwithitpod: https://twitter.com/dealwithitpod
Follow us on Instagram @dealwithitpodcast: https://www.instagram.com/dealwithitpodcast/
Like us on Facebook: https://www.facebook.com/dealwithitpodcast/

Remember to rate, review and subscribe on iTunes: https://itunes.apple.com/us/podcast/deal-with-it/id1244513630?mt=2

Ep 37: Marfan Awareness Month, Part 1 with Michael Sielaff

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Actor, improviser, comedian and activist Michael Sielaff joins us for part 1 of this special 2 part Marfan Awareness Month series. We share our Valentines day stories and gush over our Minnesota roots, and Michael shares his Marfan diagnosis story, and what it was like to be diagnosed as a young adult and having to choose between pursuing theater or college basketball. We talk about our experiences at the National Marfan Conference and how Marfans has affected dating and marriage. We talk about the importance of yearly checkups, taking our medication, and how beneficial a diagnosis can be.

Andy and Michael go through the signs of Marfan Syndrome one by one and compare notes and we talk about the Marfan Foundation events going on around the country. You can get more info here: https://www.marfan.org/get-involved/fundraising-events/walk

We thank you so much for listening! If you’d like more Marfan action we recommend listening to episodes 1, 2, and 9, and actually every episode touches on different aspects of life with Marfan Syndrome, through Andy’s experiences.

And remember Know Fight Win! #knowFightWin

Get involved with Michael Sielaff’s passion project Laughtivism here: https://www.facebook.com/groups/1552528655015826/

THE CHECK-IN: Andy and Joleen have a very special Valentine’s Day check-in, and share how they celebrated in their own non-traditional ways.

MEMORABLE MOMENTS:

“Mom, you need to understand that this is your son’s life. And Michael, you have to know what a mother goes through.”

“Its hard to keep my Marfan Syndrome a secret when my heart is going CLICK CLICK CLICK”

“We’re lanky! I like lanky!”

“Doesn’t Abe Lincoln have Marfan Syndrome?”

“Oh no, my mom has stretch marks! Am I a woman?”

“I remember a 3rd grader once looked me up and down as said, ‘dude, you’re going to die young'”

SUPPORT THE PODCAST ON PATREON:

Recording this podcast is rewarding and fulfilling, but it’s also a lot of hard work. We want to bring you more shows like this one and we want to continue to grow our audience and we want to stay ad-free! In order to do this, we have set up a Patreon page where we are offering a bunch of really cool rewards and perks in exchange for small monthly contributions. We would love your support! So check out our Patreon page today and donate if you can! https://www.patreon.com/dealwithitpodcast

LINKS:

Want to get an email when new episodes are released? Subscribe via email here: http://dealwithitshow.com/subscribe-via-email/

We want to hear from you! Email us your diagnosis stories, share any inspirational quotes, questions, comments, and reactions. What topics should we discuss? What are your New Years Resolutions? Here’s a link to contact us: www.dealwithitshow.com/contact

Find Michael on Facebook: https://www.facebook.com/sielaffmichaelj

Follow Michael on Twitter: https://twitter.com/michaeljsielaff

Follow Michael on Instagram: https://www.instagram.com/michaeljsielaff/

Get involved with Michael Sielaff’s passion project Laughtivism: https://www.facebook.com/groups/1552528655015826/

You can donate to the Marfan Foundation all month long at www.Marfan.org/dayofgiving18

The signs of Marfan Syndrome: https://www.marfan.org/about/signs

National Alliance on Mental Illness support: https://www.nami.org/Find-Support

This podcast is edited and produced by Alex Stein. Listen to his podcast here: https://www.thealexsteinpodcast.com

Follow us on Twitter @dealwithitpod: https://twitter.com/dealwithitpod
Follow us on Instagram @dealwithitpodcast: https://www.instagram.com/dealwithitpodcast/
Like us on Facebook: https://www.facebook.com/dealwithitpodcast/

Remember to rate, review and subscribe on iTunes: https://itunes.apple.com/us/podcast/deal-with-it/id1244513630?mt=2