Patient POV Jess Hay

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! Visit patientpov.ca for episodes, updates, resources, blog, and freebies!!

Today we chatted with Amanda (insta: charlie.the.service.doodle) who is a fellow dog mom and chronic illness warrior. She shares her journey with,

Notes:


For college students: Print out hand out or powerpoints from professors 


Physical therapy to work on stabilization for Ehlers Danlos Syndrome (EDS)


Coping strategies for pain: ice pack, heating pads, and lidocaine patches


Service dog provides an increased independence


Body braid for EDS (brace for body)


You are not alone!


Dysautonomia International: https://www.dysautonomiainternational.org/

Vitassium (products like their salt capsules) https://www.amazon.ca/SaltStick-Vitassium-Buffered-Electrolyte-Supplement/dp/B076MXR1LV

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! Visit patientpov.ca for episodes, updates, resources, blog, and freebies!!

Today we chatted with Stephanie (insta: Chronically_stephanie_) who is a mom and chronic illness warrior. She shares her journey with post Wegener’s Granulomatosis, psoriatic arthritis, Ankylosing spondylitis, chronic migraines,

Notes:


You can “fire” your doctor if they are not taking your concerns seriously


I don’t want a diagnosis and we don’t want to be sick but we do want to be able to have the correct treatment, which can only happen with the right diagnosis


Even when you have a diagnosis, it may take a to find a treatment that works and it may work well for you now but that could change


Have things that you need close to you whether you set up a mini kitchenette or you have a bag that has your essentials you keep with you all the time, it is important to have what you need around you


Bearable - medication and symptom tracker app


Hang in there 


Keep going, don’t give up

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! 

Today we chatted with Erika (insta: erikajoysneath) who is an author and teacher. She shares her journey with post injury chronic pain, high functioning anxiety, fibromyalgia, and endometriosis.

Notes:


Her website: https://erikajoysneath.com/ 


Have to support mental health to support physical health and vice versa 


She wrote a book about Adalene Plays Many Ways, a children’s book about how chronic pain and how a day looks differently for two people https://www.amazon.ca/Adalene-Plays-Many-Ways-experiencing/dp/B0BTKXY349 


Accept the present and look forward rather than questioning why something happened to you (This took her years to do, this isn’t an overnight mindset switch)


Ask for help


Don’t let your anger or resentment towards your body control how far you are pushing your body


Care for your mental health


Don’t sacrifice your health for your job


Accept what you did in the past as doing the best you did with the information you had at the time


Continue to be brave and ask for help!


Find 2-3 people who will be in your corner 


Give yourself TONs of grace (extra scope of grace) 

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! 

Today we chatted with Olivia (insta: oliviardennis) who has a Christian based chronic illness page (insta: Yourpainhasapurpose). She shares their journey with POTS, CMT, GP, hEDS, chronic migraine, fibromyalgia, IBS, GERD, and mental health conditions. She also makes care packages for chronically ill teens called spoonie boxes!

Notes:


Slow down and give yourself compassion


Salt/electrolyte recommendations: Vitassium salt pills, Liquid IV, LMNT, pedialyte 


Ice pack https://www.releafpack.com


Coping skills



Therapy


Deep breathing


Grounding


Affirmations 


Mindfulness


Journaling



Self care activities



Spending time with pets


Watching a show or movie


Lighting a candle


Reading a book


Listening to music



Support groups



Even if (insta: @weareeven) bible study support group for women with disabilities https://linktr.ee/weareevenif


Promise: support group for people with CMT https://www.cmtausa.org/get-involved/cmta-compass/



Take it one day at a time, he present and mindful


Don’t give up - there is support and love out there for you


Continue giving yourself grace and compassion


Don’t over do yourself


Trust your gut BUT if you have stomach issues, maybe don’t 

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! 

Today we chatted with Shedrica (@lupusspeaks), a fellow podcaster, and chronic illness advocate. She has lupus and strives to showcase how to live a good life despite her diagnosis. 

Notes:


Get involved in social media/chronic health community because people can provide resources and tips they use which you can consider implementing too


Planning, writing everything down and keep an agenda gives you a piece of control back and helps you not forget things because it is written down


Worry well once worry well: Plan in advance for a flare / who can you lean on to take care of the kids or your pets, have food prepped and in the freezer so meals are easy, etc. 


Be informed and educate yourself on your chronic illness


Find a source of strength in your faith and in your self-love. How you treat yourself if how people around you will treat you - when you’re hard on yourself, people will be hard on you too


Give yourself a break, love yourself, and be kind to yourself

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! 

Interview portion starts at 4 minutes and 3 second

Today we chatted with Nick, a physical therapist and we talk about exercise rehab and all things physio and chronic illness.  

Main topics or questions we get answered in our conversation:


Educational background of someone who is a physiotherapist 


What is physio or physical therapy?


The notion of “movement is medicine” 


How to implement exercise even when you can’t do a big “workout” 


How does movement help with exercise intolerance? 


Can people with chronic illnesses benefit from physio?


Physical rehab is more than just the physical aspect, it is the mental, confident building too!