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Chronic Illness Info
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items Things I wish I knew as a newbie to chronic illness especially as someone who got issues or diagnosed as a teenager. Saving you time, energy, and a ton of burnout from not knowing. Feel free to leave any questions or comments, I'd love to answer or c...
Sections
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Content Creators
Articles
youtube videos
Content Creators
As someone living with this finding a community has been a big deal for me. That means following people online that have the same issues and have found solutions or are seeking them. Here you’ll find my fav creators who share their stories, what’s he...
Discovered this ray of sunshine who says what everyone with a chronic illness is thinking. Her account is fabulous, style is stunning and communication empowering. Give her a follow and get empowered
Beth Usher (@beanyusher) • Instagram profile
She has lots of great info on hEDS and everything that comes with it highly recommend checking her page out
Linda Bluestein MD (hEDS / HSD spc) (@hypermobilitymd) • Instagram profile
I relate so much to Emma. She post mainly about Endo and all the things that come with it. What’s helped her and is just such a great content creator sharing all of it.
emma maxwell (@endometriosisem) • Instagram profile
Jenny is so good at sharing accommodations. Fashion. And just making you smile through the ugh in everyday life. Her smile is infectious and highly recommend giving a follow
Jenni | Chronic Illness Hacks (@chronicallyjenni) • Instagram profile
Articles
Chronic Illness Articles. Things I wish I knew as a newbie to chronic illness. Resources, Knowledge, Preventative management tips. hope you find something helps:)
I’ve gotten a good amount of peace from the information shared here. I wish I would have found it when I first had suspicions of me having EDS and everything else. Definitely a great tool of knowledge all in one place when first starting in this jour...
Resources for Ehlers-Danlos Syndrome & everything that comes with it
I wish when I first got told I had a "chronic" condition that this was handed to me to read. Especially as someone who got a chronic condition as a teenager.
Chronic Illness: What To Know About These Conditions
Amazing knowledge I wish I knew sooner!
There’s almost No doctors that have this knowledge and it’s been my job to educate myself and others like me.
MCAS, POTS, & EDS — Dr. Jim Harris MD
This article gives some good pointers on ways one can discus their chronic condition.
I know when I first got diagnosed I had anxiety on how I was going to communicate with others my condition. I didn’t know this article existed but now that I do I...
Conversational Tools for Discussing the Ehlers-Danlos Syndromes
FindHelp is a wonderful website dedicated to helping people find free or reduced-cost assistance. Just search your zip code and it automatically searches services provided in your area. From food,housing and good to legal,education and health.
I pr...
findhelp - Search and Connect to Social Care
Article based on research to help individuals understand medical cannabis. I personally LOVE my CBD ointment, it helps so much with pain and have yet to try gummies or drinks but they are definitely next in my list.
How can medical cannabis help manage Ehlers-Danlos syndrome? | Mamedica
I found that most of questions I have for POTS are explained fully or somewhat in this Article, it’s very digestible and organized which I love and appreciate as a fellow spoonie. Hope this answers some of your questions like it answered mine.
Postural Orthostatic Tachycardia Syndrome (POTS)
Really helpful info on what a picc line is. Why one would have one. Risk of having one. How to prepare. What to expect. I really this link hope it helps you the way it helped me.
Everything to know about (PICC) line - Article
The Evolve to Fit Ehlers-Danlos Syndrome Library - Evolve to Fit
youtube videos
Here is youtube videos that have helped me navigate chronic illness. I pray they can help you in some form too🩷
I've been doing this flow and get a great stretch from it. Yoga, pilates, movement is a big way I cope with living with chronic illness. I highly recommend this video and her page.
20-Minute Gentle Hypermobility Exercise Flow
I really like how she incorporates different levels of the excersice. I sometimes can only do the very firstt level and sometimes the last level. This has been very helpful on the insight of how to listen to my with hypermobility through movement.
Hypermobility Exercise Class (Great for Beginners + Progressions!)
I got a lot of peace getting to hear from someone who has succeeded and surpassed living with chronic illness. I personally have sjogrens as one of my diagnosis and have been so motivated to also educate and share with others my story on how I live w...
My Life with Chronic Illness | Venus Williams
This video made talking about my condtion not feel as dawnting or impossible as it did the first few years I started being sick. It gave me so much light and peace, even tho it's with kids and a different situtation I can see myself in her and in the...
Kids Meet a Teen With Chronic Illness | Kids Meet | HiHo Kids
This video will make you cry. But it will also help you feel understood as a women with a illness. I don't have her condition I think but we carry simulerities in how our illness has effected everything.
What happens when you have a disease doctors can't diagnose | Jennifer Brea
This video is something I wish I had at the very begging of my depression with chronic illness. I think one thing everyone who has a chronic illness struggles with is self identity (what they were able to once do with so much joy) and now they feel l... (not like themselves). I got a lot of good out of it, I really hope you do to, sending you love and light a million 🤍. “Overcoming loss of self, which is the central kind of suffering in chronic illness by reconstituting a new sense of self through a new series of performances in spite of body failure.”
Chronic Illness and Loss of Self
Simple AI video explaining how a picc line is placed. Gives ease of mind to those who like to know as much as possible before placement appointment.
PICC Placement