[medical log] GP appt this afternoon was useful

[kaberett]

Basically, it is just such an enormous relief that I have a GP this willing to work with me.

• new sick note written with absolutely no fuss; good through the first of January.
  
• mirtazapine: sticking at 30mg for another few weeks and seeing how it beds in, at which point we can bump me up to 45 if it looks to be necessary.
  
• vitD: given how awful my numbers ended up last winter, we've preemptively booked me in for bloodwork in six weeks' time so we can look at my numbers and then decide a supplementation regime for this winter. Leaving it that long because my self-monitoring suggests I'm not deficient yet, so - yeah, letting autumn set in a little more before doing anything.
  
• The Really Big Thing: I brought up lungs with him. I'd been horribly anxious about it, because -- right, okay, I e-mailed him a link to the study and went "isn't this interesting, isn't it likely to be relevant, suggested treatment plan is clearly not something that the NHS is going to consider good value in my case because I'm not that ill, but hmmmmm", only the way to e-mail my GP is to e-mail the reception desk with "this is for the attention of Dr So-and-so", and I got a shirty e-mail back from reception saying they'd passed it on but I really ought to book appointments for this kind of thing rather than e-mailing. So. HORRIBLY anxious in the immediate aftermath of that, and then in the lead-up to today's appt, and I apologised to him and he said no, no, it had absolutely been fine, having time to process the information outwith an appointment had been actively useful, and he agreed it sounded interesting in terms of an explanation for whatever the fuck it is that's wrong with my lungs, and quite apart from that he'd found it interesting and absorbing on a purely intellectual level. SO. THAT WAS GOOD. And I re-raised the issue of getting a referral to the good local specialist hypermobility clinic, because of lungs but also because I'm subluxing my thumbs a couple of times a month at the moment which is a problem when they're a key part of my ability to self-locomote, and he went "huh yes I'd been thinking pulmonary referrals but you make a good point about it being a connective tissue disorder issue and their probably having seen it before" (which I had said explicitly). SO he wrote down that he needed to look into whether it was tertiary referral, and therefore what needed to happen to refer me, and that he'd e-mail me when he'd found out; and indeed he e-mailed me a few hours ago but, like, in addition to this medical appointment today I also bloody spent an hour in counselling and I am not looking at that e-mail this evening. or at least I'm not requiring myself to? it's a bonus if I get the rest of the todo list done, and absolutely no shame accrues if I don't. GO ME.

Comments

[redsixwing]

GO YOU indeed! And hooray for a specialist who may have some experience.

Boo for shirty receptionists, too.

[silveradept]

Go you and your valid, valid life choices!

[umadoshi]

All the yay for good doctors!

[davidgillon]

Never thought about the potential for hypermobility intersecting with lung issues, but the whole connective tissue gets everywhere thing makes it obvious in retrospect.

Sniggering over the possibility of explaining to people "basically I dislocated my lung" ;)

Multiple bendy appendages crossed for positive email.

[kaberett]

He can do an immediate referral but would like me to see if I can get any of the physios I've seen previously to provide paperwork suggesting it's a good idea; this means I'm going to have to Write E-mails or possibly Make Phonecalls, and I don't want to. (But I read the e-mail.)

[davidgillon]

++ for reading the email.

Ugh for needing to people.

[(Anonymous)]

I have EDS and lung issues, given there is no way I'd get a referral to the hypermobility people in London (seems to be something they won't pay for here) I'm hoping that I can at least get a referral to a pulmonologist.

I can't remember whether I read this here, or somewhere else, it seems that in the UK getting metal ring splints on the NHS is unheard of and there are limited options for correct fitting privately. Some people seem to have had success with plastic versions being provider.

I went to see one of the doctors from that clinic and then one of their physios (privately on the advice of my GP), the doc wrote back telling my GP off for not referring on the NHS, I'm glad that got recorded, even though we both knew funding would be refused.

I don't want to get your hopes down, perhaps I'm not being proactive enough, but to me it's felt that from the perspective of the NHS, EDS is something they know I have and that might influence how something is carried out (e.g. unrelated surgery scheduled for when they are well staffed for complications), but not something they treat, partly that is because there is no cure, but I know from living abroad that a greater range of supportive care is possible.

Crossing my fingers that they can actually help.

[swaldman]

Pleased that you seem to have found a GP who sees complicated patients as interesting problems rather than time-sinks.

[kaberett]

It's sort of awkward that we have ~bonding moments~ over having both studied at Cambridge, but it... provides a good basis for the mutual approach that this is an interesting problem and I'm probably pretty good at working out what I'm talking about, yeah.

I am dreading my next move.