@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
@KylenH @bennessb incl bronchi/bronchioles & nasal sinuses, AND urinary system (chronic irritable bladder in the absence of infection or obvious mechanical dysfunction beyond chronic pelvic floor muscle spasm).
@KylenH @bennessb All massively improved &/or completely resolved (incl, completely unexpectedly, the bladder & breathing & nasal congestion stuff) on high-dose #corticosterouds & #iimmunomodulator drug #biologic drug #infliximab which I started for the 1st time during my recent hospital stay.
@KylenH @bennessb I also have a past history of ocular involvement in my #autoimmune #Crohns disease, in the form of episcleritis. Basically, my body doesn’t like friction, is super-sensitive to all kind of irritation & is FANTASTIC at reacting to all kinds of innocuous stimuli w #inflammation.
@KylenH @bennessb Tl;dr: ...yes? Also, maybe #MastCellsGoneWild-related, but it’s just a semi-ignorant lay theory at this point. #MCAS #EDS #autoimmune #autoimmunity #multisystemic #chronicillness

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More from @monika_dryburgh

8 Oct
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 18 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
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

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