AiArthritis Rant Discussions - Inspired by "Am I the @$$hole?"
AiArthritis Voices 360 Main, Full Episode 87
Air Date: July 2, 2023
This episode is a Step 2, as outlined in our 6 Step Patient-Led Problem Solving Process.
Are you tired of feeling frustrated and unheard when it comes to your doctors, your disease, and all the challenges that come with it? Wish you had a platform to let it all out and find understanding?
Welcome to AiArthritis Rant Discussions - Inspired by Am I The @$$hole? Brace yourself for a new series that will give you a voice and an outlet to vent your frustrations. In this episode, our co-hosts Leila, Charis, and Patrice dive into the rants submitted by our AiArthritis community and they'll react, comment, and delve into topics that resonate with so many.
From stories of triumph over disease denial to the maddening experience of feeling invisible while in pain, this episode covers it all. Get ready to join us as our co-hosts fearlessly read aloud submissions from the AiArthritis community, sharing rants, vents, and personal stories. Together, they'll explore the burning question: Are you the @$$hole?
Want to Submit your own Rant?
If you would like to share your own rant with us for the next episode in this series, submit it here! www.AiArthritis.org/Rant
Episode Highlights:
- Co-hosts react to rant submissions from our AiArthritis community
- Overcoming disease denial
- How to handle being mistaken for looking “healthy”
- How to explain your pain and symptoms when you have “standard level” test results
- Dealing with adverse reactions to medication from your doctor
- Join our next series by submitting your own AiArthritis rant!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at
www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on
Feedspot!
¿Quién está en la mesa?
Leila Lagandaon,
Health Education & Engagement Manager and a person living with Lupus Nephritis & Sjögren’s Disease
Patrice Johnson, volunteer and person living with Rheumatoid Arthritis
Charis Hill, disability activist and person living with Axial Spondyloarthritis (axSpA) and EDS.
CLICK HERE TO JOIN THE CONVERSATION
All our main 1st Sunday of the month episodes are either an initial "put the topic on the table" episode (Step 2 in our organization's 6-step problem solving process) or a "revisit to the table" episode (Step 6 in our organization's 6-step process), where we build on a past show because we have moved forward in developing help, tools, or projects around the issue (Step 5 in our organization's 6-step process).
After each show airs we spin off the conversation into many discussions over various formats, which we now call #360its (new in 2022)!
And now, let's 360it!
The main Sunday episode is where we "put the topic on the table," but it's not where the conversation ends! Now we spin off the conversation into different discussion segments. Below you will find several 360its. Some are videos from the main episode, while others are audiograms (soundbites).
Soon we will be launching additional 360its, which will build on these conversations. We'll hear from patients in the United States, Canada, and Australia who are here to help you through the transition to biosimilars. We are also planning a WATCH PARTY, where we will play back segments of webinars that aim to teach you more about biosimilars - and you'll have your fellow patients at AiArthritis to talk through it all with you! Stay tuned.
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360its & SHORT VIDEO CLIPS FROM THE MAIN EPISODE
My Symptoms are Invisible & People Do Not Understand!
Are you tired of feeling frustrated and unheard when it comes to your doctors, your disease, and all the challenges that come with it? Wish you had a platform to let it all out and find understanding?
Your Host: Who is at the Table this Episode?
Leila Lagandaon
Leila
is the Health Education and Engagement Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.
Charis Hill
Patrice was diagnosed with Polymyalgia Rheumatica. Patrice has been in remission off and on during these last 11 years. Patrice also has had several comorbidities: severe hearing loss which resulted in her now wearing hearing aids, a Baker's Cyst, a vein ablation, plantar fasciitis, pseudo gout, and she also has osteopenia. Patrice has been a volunteer with AiArthritis for over 2 years and has been co-host and a host for the podcast several times. Patrice went to EULAR virtually with AiArthritis in 2020 and 2021 and attended the virtual ACR conference in 2021 with AiArthritis.
Patrice Johnson
Patrice was diagnosed with Polymyalgia Rheumatica. Patrice has been in remission off and on during these last 11 years. Patrice also has had several comorbidities: severe hearing loss which resulted in her now wearing hearing aids, a Baker's Cyst, a vein ablation, plantar fasciitis, pseudo gout, and she also has osteopenia. Patrice has been a volunteer with AiArthritis for over 2 years and has been co-host and a host for the podcast several times. Patrice went to EULAR virtually with AiArthritis in 2020 and 2021 and attended the virtual ACR conference in 2021 with AiArthritis.
Pull up your seat at the table
Now it's YOUR TURN to join the conversation!
What do you think about this episode?
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!
Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!
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