Retired specialist physician. #MedEd. Too many illnesses incl #EDS#Sjögren#CVID#HKPP. Apparently I’m a "Walking medical textbook". Isn't that fun. #NEISVoid
#NEISvoid
What’s the most unhelpful thing a doctor has ever told you?
I think my #1 may be (a Prof of Rare Diseases) -
“You are too complex. I have no idea how to treat your symptoms. Come back & see me in 6 months”
He clearly thought I would be delighted to be “Too complex” 😱
#NEISVoid#disabled
Anyone have any recommendations for #WalkingBikes please? (Like in the photo). Pros and cons? Are the electric ones much better? Are they compatible with spinal problems? Any advice gratefully received, thanks.
@TransportCttee
From 01/2023 UK & France have withdrawn mutual recognition of #disabled#BlueBadges for parking. Brexit is cited but it seems so unfairly petty it must be an error? Local councils tell me "Govt rules" but Minister says "Up to Councils". Can you help? Thank you.
A day in the life of #NEISVoid#ChronicIllness#ChronicPain.
And then, when friends call me & ask how I'm doing, I somehow always answer "I'm fine, how are you?"... 🤷♀️
@DisabledDoctor https://t.co/f0cQvAe5NX for the softest Tees etc.
No wool 'cept cashmere! Baggy soft synthetic sweaters, loose roll neck, to keep warm. Alpaca or cashmere bed socks. Slippery bed linen (silk; rayon etc) reduces pain from friction moving in sleep.
(I'm into quality vs quantity!)
@Azeem_Majeed In #France it's infuriating. Docs can give scrips for even a year ("per month, repeat 11 times") but the state system rules that pharmacies can only dispense them for 28 days. I'm on multiple lifelong meds - the email order & pharmacy visit (& checking them) takes 3hrs x13/yr😠
@monicabyrne13#France Occasional dirty looks but never anything verbal. Obvious here it's us oldies, maybe 25% of us, who are the only people wearing masks indoors in shops etc. All hosp & GP settings recently are still masked (but just flimsy surgical ones - never seen a N95 except mine)
If you watch UK BBC #CallTheMidwife you might enjoy this extract from a newspaper review today 😂 -
"There was also fears for Sister Monica Joan who is currently ill with hepatitis and what this would mean for her husband Cyril".
(Where have all the sub-editors gone? 🤔)
I have 4 #autoimmune diseases. Classic features of each but atypical #autoantibodies so no internist has ever offered effective Rx.
When my AAB titres rise they say "Increase doesn't mean anything". When the titres fall, "Look! - you're improving".
Skewed logic = bad care 😠
@HeartOTXHeartMD Rare a mutuelle covering h'opathy - for ?2y state system SECU stopped all refunds. SECU won't reimburse for some blood tests e.g. some vaccine antibodies. A doc's order is never challenged, it's just for some things SECU won't refund any of cost to the pt. Rx prices are sensible.
@HeartOTXHeartMD All homeopathy; punctal plugs Sjögren; (part refund) eye drops Dry Eye; increasing refusal branded if specifically scripped c.f. generic; compression stockings if you are above a certain size; hypoallergenic TENS patches; a lot (? most) of skin creams. And that's just me...
Woke up today with overwhelming 😰 muscle & joint #pain. Pain-nightmares yet again. Love them...
And to discover I'd removed my joint braces overnight, I guess my asleep brain thought they were causing the pain. That's a disappointing new one for me...
#AutoImmune#HKPP#OA#EDS
@kadamssl "Specifically, we found that patients regularly experience intrusive thoughts & emotions related to their negative clinical encounters. They persistently avoid specific clinicians, general healthcare settings, and sometimes more distal triggers"
Yep, that just about sums it up...
@PardonMyPain So agree! What's the set up in your clinic? In mine, #France there were shared (very noisy) rooms with chairs + some singles with beds. When asked at admission if I was likely to faint with the Rx, I'm afraid I lied 😱🤭 & so was always given a single room. Bit naughty of me...
Help please!
Anyone any ideas for Rx of severe #Sjögren#tendonitis? I'm maxed on oral & topical anti-inflammatories & analgesics. All movement makes pains worse. TENS & ice packs not practical 'cos so many sites.
Anyone been helped with e.g. physio, tapes, braces etc? Thank you.
#IWillNeverUnderstandTheFrench
A stranger, seeing our willow trees being trimmed, comes to door asking to have cuttings (basketmaker). We course said yes. She arrived this morning, spent *3 hrs* invading our privacy, left her rejects in a messy pile, & drove off without a word ��♀️
@quinky_dink I'm #France. Incurable multi-origin musc/joint/nerve pain. 3 pain clinics in 9 years, emphasis ++ on psych & exercise 😱 but was Rx morphine (tried everything else). No urine tests. V strict pharmacy rules, can't be a day out, 28d Rx only. 99% docs I've met disapprove++ of morph.
@JeanneMcArdle Thank you for the suggestion. I have #hypermobile#EDS too but this batch of tendinitis is all over the place and all at once so I think it’s probably inflammatory not mechanical. It’s not nice is it?