Arthritis Storytelling Hour - 13 Patient Stories in 90 Minutes

In December 2020, Arthritis Life hosted an “Arthritis Storytelling Hour” where thirteen patients shared vivid tales from their lives.

Listen and learn about how difficult the diagnosis process is for some, how people with rheumatoid arthritis and ankylosing spondylitis learned to advocate for themselves, how to navigate work life with your condition, what it’s like to be a “spoonie mom,” the importance of mindset, acceptance and self-care, and more!

Video details:

Topic: basics of life with RA, diagnosis stories, how diagnosis led to career

• 1:28 - Chloe Umpleby JIA (Juvenile Idiopathic Arthritis) journey
• 6:21 - Kia Peters: diagnosis of RA (rheumatoid arthritis) during graduate school
• 11:00 - Sammantha Dorazio: diagnosis led to career as Nurse Practitioner
• 14:20-Paulina Burzynsk: how RA helped her take better care of your body

Topic: Advocacy / learning to speak up

• 24:30 - Jed Finley example of how he learned how to advocate for himself in the context of medical appointments for his ankylosing spondylitis
• 30:00 - Mimi Cross - how she learned that if something makes you uncomfortable you need to speak up even if that feels awkward

RA’s effect on work

• 36:13 - Sarah Dillingham - how she became comfortable talking about RA at work
• 42:30 - Effie Koliopoulos - how RA led her to her passion for writing

RA’s and family

• 46:20 - Ushma Sampat - how RA affects family relationships and life partnership / marriage
• 54:50 - Jes Hosjan How AS affects her experience as a mom and how she learned to advocate as a “spoonie mom!”

Humor and Mindset

• 1:03:02 - Cristina Montoya - Humorous take on life with RA
• 1:10:17 - Krista - Her experience chasing a past life to be the same “pre diagnosis” and how she learned to embrace the present
• 1:17:44 - Cheryl Crow - My journey to acceptance of discomfort and uncertainty in life, how ACT (acceptance and commitment therapy) and my two therapists helped me!

Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Links to speaker pages and websites:

• Chloe Umplby - instagram @xchloeumplebyx/ and @spoonfulofchronic/
  • Chloe’s Instagram, Chronically Happy Instagram, Spoonful of Chronic shop
• Kia Peters Instagram https://www.instagram.com/livewellwithkia/
  • Instagram @LiveWellWithKia
• Sammantha Dorazio https://www.instagram.com/samdorazio8/
  • Sammantha’s Instagram
• Paulina Burzynsk https://www.instagram.com/with.paulina/
  • Paulina’s Instagram & Chronically Happy Instagram
  • Paulina’s Website
• Jed Finley Jed’s twitter https://twitter.com/JediMaster941 and Instagram https://www.instagram.com/jedimaster941/
  • Jed’s Twitter, Jed’s Instagram
  • Jed’s blog
  • Jed’s writing for Ankylosing Spondylitis.net
  • Jed’s Podcast
• Mimi Cross - https://www.instagram.com/inflammationvacation/
  • Mimi’s Instagram, Inflammation Vacation Instagram
  • Inflammation Vacation website
• Sarah Dillingham - Grace and Able page , Women with Rheumatoid Disease Facebook Group https://www.facebook.com/groups/WomenwithRD
  • Grace & Able: Sarah’s company making comfortable and visually appealing wrist braces
  • Women with Rheumatoid Disease - Sarah’s Facebook group & page
• Effie Koliopoulos - Effie’s blog: https://risingabovera.com/ Effie’s Instagram https://www.instagram.com/risingabovera/
  • Effie’s Blog
  • Effie’s Instagram
  • Effie’s Twitter
  • Effie’s Rising Above RA RAra Shop Designs (Merch):
  • Effie’s Youtube Channel: RA and Myself
• Ushma Sampat - Ushma’s Instagram https://www.instagram.com/worldofot/
  • Ushma’s Instagram
• Jes Hosjan - Instagram https://www.instagram.com/house_of_spoons/
  • Instagram: House of Spoons
  • Jes’s articles on Axial Spondylitis.net
  • Jes’s Youtube Channel
• Cristina Montoya - on Instagram at https://www.instagram.com/arthritisdietitian/
  • Cristina’s Instagram
  • Cristina’s blog
• Krista Rowan - Instagram https://www.instagram.com/kickra18/, TikTok https://www.tiktok.com/@kickra18
  • Krista’s Instagram: @kickra18
  • Tiktok: @kickra18
  • Website: alivetoliving.com
• Cheryl Crow: instagram https://www.instagram.com/arthritis_life_cheryl/, website https://arthritis.theenthusiasticlife.com/, tiktok https://www.tiktok.com/@arthritislife, free facebook group https://www.facebook.com/groups/arthritislifepodcastandsupport
  • Cheryl on Instagram
  • Cheryl’s website: Arthritis Life
  • Cheryl’s Tiktok: @ArthritisLife
  • Arthritis Life Facebook Page
  • Cheryl’s free Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support
  • Free Handout: Cheryl’s Master Checklist for Managing RA
  • Cheryl’s Twitter: @realcc

This video is brought to you by the Rheumatoid Arthritis Roadmap, an intensive online education and support program Cheryl Crow created to empower people with tools to confidently manage their social, emotional and physical lives with rheumatoid arthritis.

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