E78 - PICKLE JUICE - Crisis and the BIG PICTURE

[@Elisebt]

Have you ever considered medrol? The liquid form of hydrocortisone. I have a friend who uses that instead of solu cortef and I've been interested in trying. I always did better in pred then hydrocortisone with the pills. Now on MDI I'm on solu cortef.

[@chronicallyfit_withjill]

No I haven't I should look into that thank you for the reminder

[@Thea7972]

Every time you speak it’s as if you took the words right out of my mouth! Identical thoughts, feelings, experiences. I’m so tired of people not understanding (especially medics in an ER situation) or thinking I’m exaggerating or just not grasping how serious this is and how I know my body and I know I’m heading for a crisis. I have Ehlers Danlos Syndrome too - it wrecks havoc with my cortisol levels - daily subluxations, dislocations, and absorption issues causes my AI to be so unpredictable and difficult to manage. Thank you (again!) for sharing your experiences - it validates what I’m going through 🫶

[@chronicallyfit_withjill]

Thank you for the comment...your comments validate me and I SO APPRECIATE IT
Be safe....I am just learning about my EDS...so painful...grrrr...my poor body

[@Thea7972]

@@chronicallyfit_withjill would it be okay for me to send you an email (not right away but in the next few weeks when I’ve got a moment)? There’s a few things I’d love to chat to you about - and with you starting an EDS journey, there might be some things I could suggest & links I could send (I don’t doubt you’ve done a tonne of research already though!) I’ve been living with EDS & it’s problems all my life & was diagnosed around 35 years ago (as a child) after my first dislocation, when not much was known about it. It’s only in the last 5 years or so that I’ve discovered so much more since seeing one of the leading specialists in EDS & being reassessed under current diagnostic criteria - and understanding the way it interacts with my adrenal insufficiency. I’d love to chat with you about it & see if there’s anything I can help with (things which took me years to discover!)🫶
Your videos have been helping me through a bad patch after an adrenal crisis in November and again in December… The person I always used to rely on for support (the only person I knew with AI) sadly passed away from an adrenal crisis last year. It shook me to my core because although I’ve been in ICU with crisis after crisis for years & had doctors tell me I might not survive the night & need to call next of kin etc & I usually wonder if this is “the one” thats going to kill me, I’ve survived each time. Her sudden passing hit home that it could easily be me too & that doctors can’t always save everyone. I’m only just starting to feel back to normal. When I see you going through similar struggles I don’t feel so alone, thank you 🤗 Stay strong!💪 (if not physically 😬 then mentally!) You’ve got this 💛

[@chronicallyfit_withjill]

@@Thea7972 I am so sorry about your friend...that is heart breaking and yes I agree we get so close to death and 'always'' come back but sometimes we dont and it could be us next time. It is so scary. I am glad this helps you feel less alone...it helps me too.
I would love to chat and would love advice on EDS. My email is [e-mail]. Looking forward to it