Whitney is Wicked

Actually, like it's 2000 because I'm also watching survivor

I love that it's 2026 and I'm doing the same stuff I did in 1999. Playing Pokemon, fangirling, reading books. Becoming disabled in my 30s has allowed me to rediscover the whimsy and for that I'm grateful. The symptoms can suck it though

Today's brain fog description - the things that are like a collar for sleeves. Cuffs.

I've been watching old seasons of survivor getting ready for 50 and I just finished 42 and idk this might be a hot take but Maryanne is my favorite person ever to be on this show, what a joyous human

This book is excellent and expanded my world view

Today's brain fog description - the paddle boys who play soccer

What was I trying to say? Foosball 😂

That is true! I def think it was received as a personal attack like "you are wrong" even though what I said was, that source's definition is incomplete. And I could have communicated better that hey, these definitions actually match the symptoms you're talking about in this post

I'm getting a headache listening to tales from earthsea audiobook because the narrator is doing a voice that sounds a lot like rfk jr 🤢🤢 also she keeps pronouncing ate like ett and I hate it 😂

I'll never get over receiving a new diagnosis because a provider finally did more than just look with their eyes and tell me I'm normal. Today's new diagnosis - deviated septum. I'm 37yo and have had symptoms since age 11. Today is the first time a Dr ever scoped my nose. Being a woman is so fun /s

Any recommendations from the MCAS mind hive on breathe right strips type of product that can help with night time breathing? I've also tried those plastic things that go inside your nose but they hurt my tiny narrow airways

My infusion company will not send me green caps to cover the line for my port. I've been relying on the stash I had from the prior company and friends sending me caps. Now I'm out again. Any advice on how to get them to send me caps? Or where I can buy affordably? They're not cheap

Husband: what should we do this weekend
Me: idk it's the equinox soon we could celebrate that
Husband: so witchcraft this weekend?
Me: hell yeah!
🍂🔮(Falling leaves emoji, crystal ball emoji)

New screening question to weed out providers quickly: what is a syndrome?

I told my POTS Dr what happened and she praised me for standing up for myself. She said "a syndrome is a collection of symptoms and we know how treat these symptoms" so that dude just told on himself and I'm not here for it

I'm so so lucky that I got in with Dr Bateman via telemed in 2019. She directed me to specialists for POTS, CCI/AAI, & EDS. I'm not sure if she's still seeing patients but the clinical guide on the BHC website is a fantastic resource

I've found great providers by asking other patients in my area! And finding specialists who know about the cluster usually leads to other specialists that they know of within the cluster. Telemed helps so much too

I'm so sorry you can relate. And I know how lucky and privileged I am to live where I live and to access these specialists! So I want family and friends to give them and me the respect we deserve

Yes you are so right! The person who called thinks I embarrassed him. Honestly, that provider embarrassed himself!

Thanks Erin! It totally minimizes all the work I am doing and have done! And then we get painted as bad guys for not accepting their ideas of help.

Also, when I have medical appts I have to pace for them bc of the mental & emotional exertion & PEM. I usually rest for 1-2 days before any appt, including telemed, & need 2-3 days after for recovery. Thinking you can just randomly call me to discuss my medical history ignored my lived experience

I understand that people want to help but I need you to help me in the ways I am asking for help - wear a mask around me and let me rest. That's too much to ask for I guess

I finally have a team of providers and experts that I trust. I was diagnosed by experts like Dr Bateman, Dr. Klinge and Dr. Henderson. I have a PT who is an EDS expert & knowledgeable on ME. I have a POTs Dr with lived experience. I've created medical education webinars with Dr Rowe - an expert.

I feel extremely minimized when someone thinks they're going to suggest something that I haven't already tried. It's ableist to assume that a provider you just met knows more about my body than I do. I feel unheard when someone assumes I want to tell my medical history to a stranger. I'm exhausted.

I was undiagnosed for 19 - 35 years with these. I've spent the last 6 years building a team of experts and finding treatments that have helped me improve. Improving with ME is nearly impossible but I have privilege. I've also tried many therapies that caused harm.

3-my first question to this provider was "do you think these conditions are real?" And his response was "well syndrome means we don't know what's going on." So I ended the conversation there. I know exactly what's going on with ME/CFS, POTS, TCS, MCAS, MALS, nutcracker - all syndromes.

Someone called me today just as I woke up, & ambushed me into meeting a healthcare provider. I usually fawn but I went into fight mode today. 1-I'm not your monkey who will do a little dance and sing all my diagnoses to you and your friends 2-I have a lot of medical trauma & this is traumatizing

I use Plex! Works well on the iPad

Can we reach consensus on an ME research case definition?

Friends with ME/CFS!

The incomparable Lenny Jason is working to develop consensus on a research definition and severity scales to use in studying ME. He needs your opinion!

Takes ~15 mins but you can save and come back if you need a break.

If you could also share this, that would be a huge help!

That's fantastic! A fiscally sponsored org might be the way to go. If people are doing work for the org, do you know if they could be paid as contractors? That's another thing I want. To pay people instead of relying on sick volunteers

But that is what I want, with a specific focus on uplifting marginalized people with ME! I want to be able to share resources for accessing medical care and social services and directly support people with financial aid