Discover and read the best of Twitter Threads about #healthwork

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Tomorrow's to-do list so far:

1) morning ablutions, etc
2) Stanford Neurodiversity Summit
3) diarise stuff
4) start putting meds into @NPSMedicineWise app
5) email dietitan to confirm appt time, check on what details to prepare ahead of appt.
6) reply to emails from endo & send her drug & PyoG info/pics
7) tidy up files, apps on phone, backup
8) start transferring over to new phone
9) physical phone stuff: case, screen protector, etc
10) figure out where to order from/order book for S's Dad's birthday.
11) email upper airway ENT prx re next Tues appt; they were supposed to have sent a confirmation, info on where to find them, permission to travel to appt, etc, but yet to receive.

12) work out new glucometer (Read the darn instructions first! Text @louiseallana if stuck).
Read 12 tweets
Dear Twitter, Last night I slept from just after midnight to just after 6AM, AND from 07:24-10:24AM. I guess my brain was REALLY keen on 2x90-miN sleep cycles, bc my narcoleptic phone turned itself off & I woke up w/o my alarm!Here’s me better-rested than I’ve been in ages. A fairly close-up shot of m...
Apparently my good night’s sleep has yet to restore my powers of Superior Proofreading, however. 🙄😆
Whew! Washed & dressed, had quick food+drugs, livetweeted HPS seminar on gender in the academic field of finance research (presented by #CordeliaFine), listened to voicemail, folded laundry while waiting for @steve_kambouris to get off a work call...
Read 11 tweets
Dear #NEISvoid/twitter, I am VINDICATED (&, uh, still hyper on steroids, FWIW). Awesome Sleep/RespDoc is of the educated &firm opinion (upon reviewing my hospital discharge summary, lung function test results...which the hospital still hadn’t passed on yet as of this morning? 🙄)
...that I have NOT suddenly & completely coincidentally managed to develop asthma for the first time in my life at the tender age of 39 (although he thinks it does sound like a bronchospasm cough, which is literally how I was describing it when it first started happening.
Nor do I seem to have any kind of lung problem, nor a recent past upper/lower resp tract infection). Although apparently he hadn’t received the results of either of the sputum culture tests from the hosp. I’m assuming they were boringly negative or I’d have heard by now, though.)
Read 37 tweets
Somehow managed to spend about 3 hours organising my meds today (I guess mostly bc i kept getting distracted, bc I only had to do 3 days of the week & it wasn’t even for the first time!). Got through almost all the dishes between the two of us, & managed a shower before attending
the virtual launch of Jacinta Parsons’s new book, “Unseen”, on her life with #chronicillness (#crohns, no less). Managed to not just stay awake this time, but also to livetweet much of it, which was fun. After that there were no more excuses to put off doing the dressing change
for my #PyoG leg ulcer, so we spent a bunch of time going over our written procedure to make sure we had all the materials & steps included in the correct order, & then did that. Alas, it had been so long since my previous Tramadol it had already worn off, which was ... A Mistake
Read 10 tweets
Listening to Christine Gordon of @ReadingsBooks launch @Jacinta_Parsons’s book “Unseen” - a book not just about the events of enduring & #chronicillness but also about its #complexity. JP hopes that she has captured something of the nuance & diversity of the #LivedExperience...
@Jacinta_Parsons says the path to dx is an underappreciated & often lengthy aspect of the experience of chronic illness - it’s not necessarily an easy path to getting a diagnosis & treatment.
When the change in your health is incremental it can take years from the onset of symptoms to eventual diagnosis. I am fascinated w the transformative power of the diagnostic moment #crohns #socdx
Read 35 tweets
Definitely has not yet properly sunk in that - if how I am right now is roughly what my baseline level of energy/PEM/ pain/other sx/digestion should be - then...basically I never properly recovered from that #crohns flare in 2014 that my now-former gastro said wasn’t a flare. 🥺
(I know it’s partly the #corticosteroids. I KNOW. But everyone at the hospital was keen to reassure me that it isn’t ONLY the steroids, & the difference in my previously-unnoticed levels of gut pain & the truly ridiculous levels of malabsorption alone is... kind of staggering.)
I am SO MUCH LESS #ActuallyAutistic-mode anxious & so much more functional than usual &I'm trying not to have an emotional explosion over it bc I'd been like ~that~ for sooo long by now I think I’d almost forgotten that I haven't actually been like that my entire adult life! 🤯😭
Read 9 tweets
@FandomjunkieZee @bennessb Clinical depression, seronegative arthritis/#spondylarthropathy, food intolerances (although I needed help working out the specifics), #EDS, #POTS, #endometriosis, #ActuallyAutistic, #PyoG. Thankfully in the latter case I only had a STRONG HUNCH for days before dx was confirmed.
@FandomjunkieZee @bennessb @threadreaderapp unroll, danke schön! 😄
Read 3 tweets

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