My grandson drew this. It’s me giving side eye up to no good.
01.02.2026 19:32
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My grandson drew this. It’s me giving side eye up to no good.
Being chronically ill isn’t easy but monthly chemo keeps me healthy “enough” to be engaged. #ChronicIllness #Advocacy #RareDisease
I mean 🤷♀️🤷♀️🤷♀️. C’mon HCPF. THANK YOU JBC for voting down these caps!
So peeved at @unitedhealtcare.bsky.social for not telling me that my infusion center of 3 years stopped being in network until 5 days before my next treatment. #PBMreformNOW @degette.house.gov You are on the committee that could fix this.
#Colorado allows in person, remote, and written testimony. Here’s how to sign up. #Coleg #copolitics @cohousedem.bsky.social
Join us for a lobby Day! February 27th at the Colorado State Capitol! #ChronicDiseaseAwareness #RareDiseaseAwareness
How is everyone today? We had a front move through and it’s got me feeling like a drunk Miley Cyrus on a wrecking ball. #Autoimmune #EhlersDanlos #ChronicDisease #RareDisease
Recorded a segment on #PDAB and how a #UPL can impact access to medicine for Patients Rising! Can’t wait to see how it turned out!
I’ve always joked that my issues are like Pokémon because we catch them all, so I decided to make a whole digital chronic illness awareness campaign of trading cards. Hoping it helps folks explain how being chronic works.
Today is one of those days where I wish they’d put coke back in coke. Making my dental appointment for 4 more teeth to be pulled. Because who needs teeth? #SjogrensSyndrome #ChronicIllness #RareDisease #ChronicDisease
#Snur brings a bunch of symptoms for anyone with #ChronicIllness. These are the ones I’ve collected! How are you feeling? #Maladiemon #TradingCardGame
Mine generally take 3 months as the doctors and insurance fight over who sent what paperwork.
Don’t forget boundaries are okay and saying no is necessary at times. It’s okay if we don’t “do all the things”.
Mine is getting there too! I’ve got several curves. My top one is 52 degrees. It totally bites. Is there anything you do that helps?
Yup. It’s my actual xray. Craniocervical instability. It’s a potential issue with #EDS, #RheumatoidArthritis, and #TBI. I’ve got all 3 of those so #Cervislinky is my chosen #Maladiemon. @ehlersdanlos.bsky.social @rheumatoidart.bsky.social
#Autoimmune reaction to taking a shower caused me to collect #Immuncoon today. These diseases are dynamic and that means I don’t know how I’m going to feel minute to minute. #chronicillness #raredisease #MCAS #maladiemon #tradingcard #WorstTradingCardGame
If you are coming to Lobby Day on February 27, I’ll have these printed cards on me - so find me if you want to collect some! I’ll be the one in the wheelchair with the yard flamingo.
RSVP HERE: docs.google.com/forms/d/e/1F...
Don’t forget to send pictures! 🤣
YES!!!! Doctors don’t have magic powers and I find myself more knowledgeable about my conditions. We deserve to be treated with respect and taken seriously. Full stop. I figure if a doctor drops me, it’s the trash talking itself out.
Fatiguely
#Fatigue is a symptom associated with conditions like #MultipleSclerosis,
#RheumatoidArthritis, and #cancer. It can
also occur on its own and is called
#MyalgicEncephalomyelitis. Meet #Fatiguely.
It’s feeling
like your body is filled with heavy metal.
#RareDisease #ChronicIllness
Oh 100%. Firing a doctor is self advocating. I’ve walked out of appointments dozens of times and fully support others doing that.
It’s #Maladiemon, the #ChronicIllness #TradingCardGame #RareDisease #ChronicDiseaseAwareness
Highlighting #MedicalGaslighting and why it’s so important we learn to advocate for ourselves. #ChronicIllness #RareDisease
Yeah honestly, this is not something we should have to do at the state level. Unfortunately, the Fed’s are being extremely incompetent. We just want transparency - this is a program our community relies on.
Our bill made sure to exempt quite a few entities, including rural based resources. The hospital systems targeted aren’t providing the care but their participation in 340B exploded. And the data is already something they track.
Ahhh. So yes, offsetting uninsured would definitely count. 340B is there to offset drug costs for patients in need as well. We are asking that big corporate hospitals have transparency reporting. The rest are exempt.
Are you familiar with what 340B is? It is supposed to provide financial relief on hospital services and medications for low income families.
Ultimately this does need a federal solution but we absolutely can ask for transparency at a state level. That’s what our bill is about. The pharmacies are only part of the problem. We want to see how much is going back to charity care.
Those who don’t study history are doomed to repeat it. youtu.be/EH_Izul6J5M?...
Behind the acronym is a formula that reduces your lived experience to a score. It compares your life to a narrow idea of “perfect health” and subtracts points until the treatment you need is no longer “worth the cost.” #QALYban
