Some answers via a physio!

[Lupiknits]

I had a physio appt today. I've had as much help as she can currently offer, and I agreed with her. She saw me about 6 weeks ago, and was really shocked today by my appearance (I rarely look in the mirror because I find it rather shocking, too). I spent last year determined not to fall below 8st, and by the end of that year changed it to 7st, but I've dropped into the 6st range over Christmas and New Year. She is naturally concerned about the balace between physical exercise and energy expended in the process.

She nipped off to see what occ health can offer when I explained that the most comfortable way I have found to sleep is to restrict it to three hours in bed, then an hour or two propped on the sofa. Occ health made all the suggestions I've tried (I generally say thanks for this kind of advice rather than appearing negative).

Finally I asked what was in the records that explain why my rheumy appt just before Christmas was cancelled because the junior doc "didn't know what they can do". The records say that they have stabilised me, and I'm discharged. How do they know? Nobody has checked since I started hydroxy in Oct 2014. They do, apparently, want me to continue to take part in the research because of my fascinating nailfold capilleroscopy. Much as I would like to help with potential medical advances, I'm *%#ed if I do this while discharged and uncreasingly unwell.

So, back to GP, back to waiting ages for a fresh referral, and close to giving up.

[Lupiknits]

Forgot to add that physios seemed not to have a lot to do, and the whole place, specialising in rheumy, osteo and dermatology was virtually empty.

[whisperit]

Aggh, lupiknits. How can they possibly justify that judgement on your supposedly "stabilised" state? I don't blame you for feeling so disheartened. Meanwhile, get some cookie dough ice cream in, girl, and put some weight on x

Also, gin

[Lupiknits in reply to whisperit]

Darn it, can't manage any kind of alchohol. Got a couple of big bags of Thornton's Special toffee though. Mmmmmmm

[whisperit in reply to Lupiknits]

Me either. Lindt D'Or milk chocolate is my thing. Checking my amazon account last week, I was shocked to find I have got through four boxes of 10 bars in the past 2 months! I reckon we deserve *some* treats though. x

[maggielee]

Glad to hear about lovely treats, the least one can do for oneself... Chocolate that is ...😋 ml made me smile thinking about a simple pleasure amongst frustrating doctor visits...

[Barnclown]

YAY lupiknits: hang in there! This is really GOOD: this sort of insider info is like gold dust 🌟...it boosts the morale...and helps you force the system to get its act together. Clearly your Rheumatology dept is Trying It On! You need & deserve more consideration & care. If they continue to try to fob you off, there is now evidence on the record thanks to your rapport with physiotherapy, OT + your gp.

Please let us know what happens next

I hope the Thornton were absolutely yummy 😉

🍀😘🍀😘 coco

[Lupiknits]

I have managed to get through the "triage" system my GPs have and have a GP appt for tomorrow. I don't know the GP who triaged me, but could hear her tapping on her screen and scrolling down. GPs had a letter last Sept to say I was stabilised. Letter missed out the info that they hadn't seen me. GP just said "oh, we have problems here", and "you are a complex case". Don't know whether to laugh or cry ....