Discover and read the best of Twitter Threads about #pyog

Most recents (6)

Down to 10mgPred & I don’t think it agrees w me. After several nights of pretty decent (& long) sleep, last night I didn’t sleep til 4am. Managed to sleep until nearly-10, woke up in time to listen to 10am Deakin SSN seminar on CovidSafe app, successfully made & ate an omelette.
Patches of decent braintime over past few days; physically pretty fatigued though, plus #PyoG is sorer again (it’s not terrible, but it’s also definitely not as good as it was mid-last week).
Was the worst last Friday when prednisolone dose went down from 15mg>12.5mg but yesterday was 12.5>10 and I'm *so* #POTS-y right now. I'm lying down and my arms are excruciatingly fatigued just from holding my phone atm. 😕 #NEISVoid
Read 5 tweets
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).
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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
@KylenH @bennessb Yes, I think so. I don’t have the super-soft/delicate/stretchy skin of EDS classic type,, & although I do get atopic dermatitis it seems to be different to the irritation & peeling skin I get from tape. I also get a particular (&, I think, related) skin reaction to anything that
@KylenH @bennessb rubs, including my otherwise-awesome thumb splints. Alsoalso very prone to skin tags in high-friction areas, fwiw. I don’t seem to have full-on #MCAS on anything, but I do wonder if #MastCellsGoneWild could be implicated somehow,
@KylenH @bennessb esp given my recent experiences of simultaneous #multisystemic #autoimmune #chronicillness affecting GI system (#IBD: #crohns but also #GORD), skin (#PyoG), joints (#AnkSpond/#spondylarthropathy/ seronegative #arthritis) & prob aspects of the respiratory system
Read 9 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
@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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