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.)
He suggests that the most likely situation is that the Coughening was part of the #Autoimmunity of Doom (although obviously *he* didn’t phrase it that way). “Upper airway manifestation of #Crohns”, was how he described it, I think. (@steve_kambouris?)
Basically yet another extraintestinal (#multisystemic) manifestation of the same underlying #autoimmune #inflammatory (#IBD) process that was also affecting my gut/skin/joints simultaneously. (Go figure!) #spondylarthropathy #PyoG
I now have a referral to an ENT who does upper respiratory stuff ("everything above the voicebox", apparently), including bronchoscopy & some other test I can't remember the name of ( 🙄 at self) that shows how the upper airway is functioning, checks for current dysfunction, etc.
He said that she *might* be able to see remnants of any inflammatory process that’s been happening, or recent after-effects (but I suspect that there won’t be much to see, esp since my symptoms are pretty much gone).
He agreed with me that it’s likely been brought under control by the prednisolone & the #infliximab (he was keen to know that I would be continuing the infliximab infusions!) & suspects there won't be anything much to see unless I have another episode.
I think will make an appt to see her anyway, bc I'd rather have a pre-existing relationship with someone good if this ever happens again (or, god forbid, if it flares up again as the steroid dose continues to be titrated down). #AusHealth #HealthSystems #HealthSystemsCapital
Because it’s Almost Certainly Not Asthma, there’s no need for Salbutamol (Ventolin) or inhaled steroids, esp while I’m on such a high dose of oral steroids already (but obviously keep an eye on it & seek immediate ENT doc attn if it happens again).
Also, he thinks I'm ~quite~ hyper😆 He commented 3 times on how fast I was talking during the appt,&he's the doctor who usually keeps up with me & gives as good as he gets wrt taking on & immed integrating & commenting on clinical and treatment implications of new-to-him info. 😳
After hosp #2ndShiftSick #healthwork continued as we drove to the pharmacy to get various drugs & wound care supplies, & to discover that a) there are no sterile gloves or scissors in stock w the supplier,& b) we have to order in my niche wound dressing materials (which is fine).
Then we drove to the GP practice so I could get the blood tests I had to get today, and bumped into my GP while we were there. \o/ Also, blood draw was successful despite the 3 different forms & my at-times dodgy vasculature, & we each made a follow-up appt while we were at it.
Then we took the car back to its pod a few streets away & walked home, arriving to a letter from the RMH #Dermatology Clinic, confirming my appt on the 5th of November, 9AM (noooo!) with "Doctor: RMHC Derm B - Autoimmune 2". 😆
The letter says to bring "any relevant x-rays, scans, blood tests and a current medication list." I get this is *probably* less of an issue for most ppl cf me, but how am I supposed to know which tests results are actually relevant? 😯 #healthwork #KnowlWork
Steve is in in his sockfeet in the kitchen, making me an omelette, which is fantastic bc I’m really spacey & starting to crash. (Prob equally a lack of good quality sleep as much as anything else. But also: PREDNISOLONE. I’m hungry AND spacey!)
Next up (after taking stock of pharmacy haul, which will be after food, + with-food drugs) will be RESTING. And putting new appts into diary. And making notes for tonight’s Gastro appt (7pm, via Telehealth 😯)
@threadreaderapp unroll, please!
Also done this afternoon: [me lying on the hallway floor with my legs up the wall. I am wearing adorable black & teal toe-socks & indigo skinny jeans. In the pic of my face there are rather massive dark circles under my tired, tired eyes.] #healthwork #NEISvoid #2ndShiftSick
Also made appt request w ENT and dietitian for me+steve.

Steve called the hospital pharmacy to find out how to get my Prescription Record Form (?) filled in so the prescriptions I had filled while in hospital can contribute to our PBS Safety Net total.
Then he had to call our community pharmacy to let them know that the RMH pharmacy would be faxing them, bc that's apparently the only way to get the hospital scrips added to my record.
Then about 4 separate unsuccessful phonecalls trying to get on to someone so he could actually pay the pharmacy bill, followed by giving up & paying via BPay instead. They don’t go out of their way to make it easy — no one from the hosp mentioned the bill during Discharge,either.
Plus abt an hour all up between talking on the phone to the community pharmacy about ordering in dressing materials & researching where else to buy Aquacel Ag & darn sterile gloves & scissors & everything else that can’t be gotten elsewhere. Put in a postal order.

(Rather $$!)
Still to go: Gastro Telehealth appt at 7pm. Need to make list first bc my brain is like a very loudly cheerfully distracted cheepy bird. With fricking narcolepsy. Omfg i better not fall asleep again between now and 7pm! 🙄😐🥺🤭
Have to investigate how to use the Telehealth platform before the appt, too. Ugh, hope it’s self-explanatory & has inbuilt redundancy, bc I sense the probability of user error rapidly approaching 1 with how my brain is working atm.
P.S. The whole #crohn’s-related #autoimmune #inflammatory Upper Airway Disease theory ALSO makes sense of the pain I was getting on swallowing during the earlier part of the Bronchospasm Coughening od 2020/ #Autoimmunity of Doom, too.
The pain very much felt like it had something to do with the movements involved in the physical act of swallowing; nothing like a “normal” sore throat.

After reading some of the stuff on #EDS over the weekend, I was also starting to wonder whether...
...I might have managed to slightly displace my larynx (or something??) through the violence of all that paroxysmal coughing. 😬😐🤔Yay, #hypermobility. 😦🙄🥺

#EDSECHOsummit @TheEDSociety @LaxityHijabi @lilykatrayburn @robotswonthelp @VelvetVolcano @authorwendy @H2OhTwist
Managed to do a test call on the hospital outpatient Telehealth system with, uh, half a minute to spare. A moment of minor panic when @steve_kambouris’s laptop wanted to insist on using the rear camera, now resolved. The first online waiting room had a choice of music playlists.
I have now been officially “checked in” and am on hold, waiting for my consultation to continue (read: begin). Apparently the Telehealth outpatient gastroenterology on duty at 7pm(!) tonight will be joining the call soon. I have made a list, with numbered subsections. 😴
Whew! Appt went well, covered everything on my list, i think. My poor doc might’ve been almost as tired as me 😞 As uncomfortable as phone interactions often make me, i was VERY glad not to have to leave the living room for the appt! Some things still waiting for test results.
Have timetable for tapering #corticosteroids. Need today’s bloods results before tweaking oral electrolyte doses, & TPMT result from last week...
...before starting azathioprine (Imuran) as an #immunomodulator (to stop my overenthusiastic immune system from producing anti-#infliximab antibodies so serum levels stay good & it’s less likely to lose effectiveness over time). 🧐
Keep taking Septrin Forte 3/wk while on Prednisolone to ward off ~that particular kind of chest infection~.They will contact me re next #infliximab infusion appt date (trying to organise to get it sooner so we can drop steroid dose ASAP. I slept about 5h over the last 2 nights 🙃
Repeat tests to monitor for #crohns activity in 1, 3 months. (Bloods, other pathology, prob ultrasound. Want to avoid giving me bowel prep ever again as far as possible 🤣 so no colonoscopy in near future). Gastroscopy at some point. DEXA (bone densitometry) booked for mid-Nov.
#Derm #autoimmune outpatient clinic appt 5thNov — will need to talk to them sooner re activity, compression stockings for #POTS mgt & what’s allowable wrt mgt of dodgy #hypermobile #EDS muscles & tendons, incl massage, taping & esp dry needling. (Also updating wound care plan.)
My GastroDoc literally did a Dance of Triumph when she realised I’d already “failed” azathioprine (thanks, 2000-2007, followed by the liver-damaging years of 2007-2011 on #mtx!). Having “failed” it already makes it MUCH easier for them to make the case for the PBS. 🤞💰🧬🧪👍

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More from @monika_dryburgh

8 Oct
As I was musing to @BattenbrgBarbie recently, I suspect there are a bunch of overlaps in the social experience — along with some v important differences, esp around differential inflections along axes of power/oppression — in various experiences of being #NonNormativelyEmbodied:
e.g. (in no particular order & v incompletely): Fat, #ActuallyAutistic+prone to #SensoryOverload, Deaf, in/visibly #disabled, in #ChronicPain or experiencing #chronicillness-rel’d #fatigue, racialised, trans, v tall or vshort (even without being a little person), #hypermobile...
I was thinking about how many of the #hypermobility/#EDS-related specificities of providing competent & safe care to me (even when the EDS isn’t DIRECTLY contributing to the current clinical picture)...
Read 8 tweets
7 Oct
I’m not sure if there’s anything more [@steve_kambouris + @monika_dryburgh] than us spending an HOUR watching 01:32 (one minute and thirty-two seconds) of an audiovisual entertainment (online miniseries) that we are both genuinely really enjoying & are v engaged with. 😯😳🧐🥰😌
We keep having to stop to TALK ABOUT THINGS! 😆 📺We have to research diegetic & extradiegetic aspects of both text & paratext (& actual political history), check my interpretations of the narrative esp wrt actual historical events &/or particular characters...
... check my facial recognition & name-matching to chars (& often then detour even further to go investigate just how GOOD the casting & make-up/prosthetics & costuming & sheer physicality of the actors is in creating believable representations of the “characters”)...
Read 5 tweets
7 Oct
Looking forward to hearing from John Byron in today’s HPS seminar on “Critical Friends: insights for science from the humanities”.
Noticed during last year’s metascience conference an emerging narrative of anxiety around critique of published results/reproducibility in science.
John found this anxiety narrative quite jarring, coming as he does from humanities work in e.g. Lit & cinema studies, where critique is central to methodology!
Read 26 tweets
6 Oct
Too tired to comment personally atm, anyone want to add? (“Extreme male brain” theory, and lack of ToM & the idea that we ~~don’t have empathy~~ are the broad strokes.) @milton_damian @danialexis @AnnMemmott
@louiseallana Lol, timely, btw! 😁 P.S. for you, if you have the time/energy/inclination: autism & the double empathy problem (Damian Milton): , An Expert Discussion on Autism & Empathy (various, incl Melanie Yergeau): liebertpub.com/doi/10.1089/au…,
Representing difference as pathology: An Example from SBC’s The Science of Evil (Rachel Cohen-Rottenberg): autismandempathyblog.wordpress.com/representing-d…, Autism & empathy: what are the real links? (Fletcher-Watson & Bird): ora.ox.ac.uk/objects/uuid:0…
Read 6 tweets
6 Oct
Thinking about the time, c15 years ago, in the middle of undergrad, when the genuinely-helpful psychologist I was seeing through the uni counselling service decided (entirely appropriately & ethically, imho) that I was officially Too Complex for her to competently help...
given the limitations of the situation: the limitations of her own training & expertise, the maximum of 6 counselling sessions available to us per semester, my worsening & multiplying complex physical health problems (very incompletely-diagnosed)...
the impact of recurrent bouts of anaemia as well as immunosuppressant side-effects on my constant fatigue, the interactions between my increasing disability & pain & concomitant sleep issues & my mental health, fatigue & pain levels...
Read 40 tweets
6 Oct
@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

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