iiinova — where your digital self keeps evolving

Whitney is Wicked @itswhitneywitch.bsky.social · 18/06/2026

Astrology nerds... I was just getting into some chiron content in the chani app and was like, huh chiron is the planet of healing and it's been in my rising sign of Aries for 8 years? When did this happen bc my health collapsed 8 years ago. Feb 18, 2019... The next day I was diagnosed with ME/CFS 🤯

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/04/2026

One thing about me is that I'm incredibly nice to human service representatives and very rude to AI agents

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Whitney is Wicked @itswhitneywitch.bsky.social · 08/04/2026

Express scripts is being extremely slow and difficult on filling my cromolyn prescription so I started rationing and lowering my dose and was up from 4-7am with diarrhea. May I transfer this GI distress upon all of their executives and shareholders 💫💩💫

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Whitney is Wicked @itswhitneywitch.bsky.social · 12/03/2026

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 11/03/2026

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 14/02/2026

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 14/02/2026

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/01/2026

This book is excellent and expanded my world view

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/01/2026

Today's brain fog description - the paddle boys who play soccer What was I trying to say? Foosball 😂

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Whitney is Wicked @itswhitneywitch.bsky.social · 25/01/2026

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 23/12/2025

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 😂

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Whitney is Wicked @itswhitneywitch.bsky.social · 20/10/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 20/10/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 25/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 19/09/2025

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)

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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.

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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.

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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.

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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.

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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.

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Whitney is Wicked @itswhitneywitch.bsky.social · 17/09/2025

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

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C.H. Romatowski @chromatowski.bsky.social · 13/09/2025

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!

redcap.is.depaul.edu

Can we reach consensus on an ME research case definition?

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Whitney is Wicked @itswhitneywitch.bsky.social · 08/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 08/09/2025

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

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Whitney is Wicked @itswhitneywitch.bsky.social · 08/09/2025

I have but it hasn't been good things unfortunately

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Whitney is Wicked @itswhitneywitch.bsky.social · 07/09/2025

Also any examples of charitable foundations that provide grants directly to people affected? Disability orgs specifically. TIA!

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Whitney is Wicked @itswhitneywitch.bsky.social · 07/09/2025

Looking for resources and/or advice about starting a 501c3 in the US and how to make it international. Any tips?

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Jessica Ellis @baddestmamajama.bsky.social · 31/08/2025

I’m going to say this louder this time: if you are lying about having a high-risk condition to get a Covid vaccine, all good, do what you want to do BUT show some actual goddamn respect for people who *actually* have that condition and start masking.

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Whitney is Wicked @itswhitneywitch.bsky.social · 30/08/2025

I think Maryland DC and Virginia have agreements where we can see providers in all places. I have providers in VA that I can see via telehealth in MD. I'm not positive that it works the other way around but I'm assuming/hoping it does

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/08/2025

This. And who wants to go through yet another round of gaslighting and trauma

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/08/2025

Me and my friends, trying to have our needs met in this economy like:

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/08/2025

Yup. If it's not progressing, surgery is likely not indicated and PT would be your best bet. It's not a fun set of tests. Thankfully my insurance covered everything for TC (unlike CCI/AAI)

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/08/2025

And TC diagnosis is a long hard road so no rush!

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/08/2025

Oh heyyyyy fellow butt crack googler 🍑🍑

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/08/2025

Anyways I think my friend needs to explore tethered cord diagnosis 😅

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/08/2025

I like Elizabeth Clarke a lot, she's at the Hopkins POTS clinic in Baltimore and is knowledgeable on ME as well. I imagine there's a wait list though

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 29/08/2025

Can anyone recommend an #MECFS & #POTS knowledgeable doctor in the DC area?

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Whitney is Wicked @itswhitneywitch.bsky.social · 29/08/2025

One of the funny things about living with a rare disease is sharing knowledge about that rare disease and friends saying "I thought everyone had that!" Today's case - sacral dimple in tethered cord. No babe, most people don't have that

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Whitney is Wicked @itswhitneywitch.bsky.social · 13/08/2025

I'm glad I didn't shell out that money and got another opinion! He was licking his teeth bc he wanted more food 😂

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Whitney is Wicked @itswhitneywitch.bsky.social · 13/08/2025

I've definitely seen vets like that here too. Makes me glad for our current good guy vet. My oldest cat is 14 now and for 13 years he's gotten compliments on his teeth. When he was 1 yo a scammy bet said he needed advanced dental care and to see a cardiologist for a heart murmur that didn't exist

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