For me, as a person w/several chronic illnesses including me/cfs, POTS, & MCAS, having a dr who listens without ever interrupting me, is knowledgeable about my conditions, willing to admit the limits of that knowledge, & is personable & funny is worth the emotional cost of living in rural Texas
I love my primary care doc
Today we removed my statin bc it could cause the leg cramps I have, added CoQ10 bc he’s seeing it help w/long covid & is backed by research, changed sleep meds, he took over a Rx from a specialist who vanished, & we went over some new genetic info.
All in 40-unrushed-mins
I’m over here living the life of a dangerous rebel
Eating toast with peanut butter in bed while in the virtual waiting room with the camera on waiting for my dr to join my appointment 🤘
I disagree on point 1
No one should spend any time in ICE detention centers. They shouldn’t exist to begin with.
Oh, I love this!
I don’t have room for it, but like many of us in the #me/cfs & wider #chronicillness community I read a ton of audiobooks ..…& remembering what I’ve read months/years later can be challenging, this adorable idea would really help with that.
Maybe Souse can find room 🤔
What Is To Be Done? How to Take Action in Horrifying Times By Politics and Policy Lecture Series Tuesday, March 17, 2026 7pm ABOUT THIS EVENT Vollum College Center, Lecture Hall 3203 Southeast Woodstock Boulevard, Portland, Oregon 97202-8199
Very pleased to announce that I will be speaking at Reed College this Tuesday, March 17th, about how we can fight back. Swing by if you would like to!
events.reed.edu/event/what-i...
@bynux - hey i'm sorry i stopped int he middle of that sentence my brain decided to flush its cache and i totally forgot what this conversation was
Sorry, my brain just rage-quit
THINGS CHRONIC ILLNESS PATIENTS CELEBRATE THAT THEY SHOULDN'T HAVE TO... Below the header is a list of items, each preceded by a small yellow star icon: Getting out of bed Having energy for a shower Finding a treatment that works Being able to attend a social event Getting a good night's sleep Finding a good doctor Getting a diagnosis Having a low pain day @dear_chronic_pain
@dear_chronic_pain
One of the biggest blindspots of modern conservatism is the concept that other people exist and have agency.
Ooo! I also have that on my bingo card, though it’s kinda a standard part of whatevethefuckiswrongwithme. Someone told me about electric throw blankets, & the one I got has been a great temperature regulator!
Also, hot baths & warm drinks can sometimes help a creaky parasympathetic nervous system
I really think this is it.
I know there are a few people who have an almost patreon-like relationship w/folk who help them out, but they’re the minority. Mostly people are broke, or uncertain & trying to squirrel away what little they can while they still can.
But wait! There’s more!
Which I won’t put you through, but, man, no wonder I’m having hell shaking this me/cfs crash.
I think I’m in week 3 now, but as was once said by a famous person whose name I can’t think of, “time is a strange soup.”
parents get ready to leave for a month on a very well deserved vacation. Then there’s a shortage on one of my meds we’re navigating, Spouse has higher profile responsibilities at work, & we’re helping 2 of our sons deal w/addiction issues (1 is 2 mos sober, the other is on day 2 - proud of both!)
while I’m so sick. It says a lot about how much eldest means to their partner that they’re willing to fly into Texas (both eldest & their partner are trans), stay 2 days w/ppl they’ve never met before, then drive 1900+ miles home!
I’ve got 2 dr appts, 1 90mins away in person, & we’re helping my
It feels line there’s a ton going on in the next 2 weeks!
Eldest kid & their partner are flying in to drive a car eldest’s fiancé just bought from our son back to their home in New England. I’m excited to get to meet the other love in their life, but kinda nervous about meeting someone so important
Sometimes Spouse has to take meetings at wild hours. Last night he had a 3am, & since I’m rarely asleep before 2am I opted to stay up & wake him. Turns out staying up is a totally different energy equation than being up.
Today I learned, I guess :/
#neisvoid
I really wanna live in a world where your story is the exception instead of the rule
At this point in our house we’ve decided “supposed to” is a nice recommendation, maybe even an aspiration, but decidedly not a requirement!
We’re big fans of “good enough” & “it’s temporary, unless it works” 😄
Also, most refrigerator filters say to replace them every six months, but really you can reliably get away with a year.
If it has a water dispenser or an icemaker, it should have a filter.
Both of my vacuum cleaners actually have a few filters, the biggest filter (also the most $$$ to replace) on each can actually just be cleaned in the sink. You should be able to look it up online and see if that’s an option 🤞
UT’s program was screwed by Abbott (shocking, I know.)
I live in the Hill County, equidistant from Austin & San Antonio (~1hr to the edge of each) so, I tried for UT Austin first, only to learn from someone adjacent to the program that it was winding down w/no net for current patients.
I’m in the BCM post covid clinic, the bottle neck, from what I’ve been able to gather, is that everyone has to go through 1 Dr for intake.
The good news is, she’s passionate about LC & trying to find things that help now as well as doing long term research.
Please feel free to ask me anything!
disability benefits are extremely difficult to get and are barely enough for people to survive. no one is pretending to be disabled, especially for money @chronically.char
@chronically.char
To help our kid who has asthma I had staggered reminders on my phone set to order/replace/clean every filter in the house (fridge, A/C, vacuum, air purifier, etc.)
Now that I’m not the house manager I passed the reminders on, & I can’t help but wonder what’s happened w/that over the last 4yrs 🤔
🫣
I got better in my late 30s, went from mostly moderate to mild. I started driving again, volunteering, & traveling. I was feeling stable enough to get a job when I got covid for the 3rd time (I was fully vaxed, & know how I got it) & my whole world imploded.
Hopefully, you’ll just do the 1st bit!
I’m just hoping there will be treatment in my lifetime.
I was diagnosed at 31 & I’m 51 now, & where I realize society feels like it’s okay for adults (especially those over 40) to be miserable & have the most productive part of their lives stripped from them I feel pretty strongly to the contrary.
Today I learned our chosen son has never read or seen any of the LotR or The Hobbit.
It shouldn’t surprise me that his bio-family couldn’t be bothered to take their brilliant nerdy kid to the movies, but it did.
We’re doing family movie night on Sunday 🍿 😁
Yes.
& it surprises me every single time!
I guess it’s good to know some ppl get through life blissfully unscathed, though, I do usually wish someone had bothered to teach them basic empathy.
EARLY SIGNS A FLARE IS COMING You know the feeling. Suddenly exhausted for no reason Brain fog hits mid-sentence Everything feels heavier Joint stiffness out of nowhere Noise feels louder than usual Irritated at absolutely nothing Ah. Here we go. Lab Results Normal Because normal labs don’t mean normal life.
I’ve known 1 Edna, we met at church - she was a tiny blue haired wisp of a woman w/the sweetest smile. She looked like a kindly grandma, but was made of solid steel, had an absolutely wicked sense of humor, & cussed w/a creativity I can only hope to aspire to.
For me, Edna will always = badass
