Sorry I've not been around lately, have had SO much going on & haven't exactly been feeling my best (don't worry, not back in flare!).
Just an update 2 let u all know that I FINALLY have an app. with my rheumy 2morrow (only 4 months late so not too bad lol!) so I have made lots of notes & lubed up my throat with honey as can guarantee there will b many arguments 2morrow with Mr. King ( if something is white, he'll say it's black, just 4 the simple fact that he apparently knows better than u as he is a 'Consultant' & HE SHOULD KNOW, so he'll just argue the toss ;/ ).
Here's hoping 4 some warmer weather 2 take the pressure off of some of our aches & pains!
Big hugs every1
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Sher78
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Thanks flossy1, & believe me, u don't wish u were like me, cos of my 'outspoken' nature & inability 2 b fobbed off, I have gotten myself in2 trouble a few times ;/
The thing is, they all seem 2 think that cos they r 'university educated' & have a PHD, they r FAR more intelligent than every1 else. My brother in-law had a PHD in Physics, yet common sense wise, he is dafter than a brush!
At the end of the day, WE live in our bodies & know how we feel, not THEM.
I was very lucky that my original rheumy was a specialist in SLE (his wife had it so he knew an awful lot about lupus obviously) & he genned me up SO much on it. He himself would always tell me that even HE didn't know EVERYTHING about lupus as it didn't personally affect HIS body.
He always told me 2 believe in my instincts & never b afraid 2 question or ask 4 peoples reasoning on why they believe this/that when it comes 2 MY HEALTH.
This is something I always say, U know u're body better than any1 else, GO with u're gut feeling (it's there 4 a reason) & if u aint satisfied, SAY SO! Be true 2 u'reself, as u r no more superior than any1 else, no1 is more superior of u EITHER, no matter WHAT letters they have after their names! Always believe in u'reself & if in doubt, take me 2 u're next appointment & I can shout FOR u x
Love your comment , you sound so like me lol , l always say " Knowledge is POWER" and my goodness have l had to put that into action since my diagnosis 2 years ago, won't bore you with the lengthy gory story ! Since being bullied by my big sister to buy and learn how to use a laptop, l have come across so many supportive people like yourself, and all the advice and help is truly uplifting, Thank You all for getting me out of a hole !
I think humour is very underrated when it comes 2 dealing with something like this & having some1 who will listen without judging u & looking at u like u should actually b wearing a special white jacket that fastens up at the back is a big help too
Looking forward to hearing how you get on tomorrow!! Would love to be a fly on the wall seeing you in action!!! Perhaps you'll have to swop to my rheumy !
lol! Thanks Janekins. I think he may actually pass me OVER 2 u're rheumy after 2morrow (or if I'm unlucky, Mr. OCD lol!) We shall c, may Fatherhood will have mellowed him out x
That's so funny that you should say that cos i was going to say the same thing when I wrote above!!!! Who's Mr OCD? I haven't seen my rheumy since last May but cos I was referred to London I'm not sure if I have to be referred back to plymouth? Couldn't face travelling up there again!! X
Great minds think alike Mr. OCD is Perry. I WOULD actually b better off under him in a way as he runs the MCT clinic too (I think along with U'RE Rheumy funnily enough!).
If I was u, I'd give the clinic a ring & find out what's happening. How did it go 2day (or was it yesterday?)? x
Good luck Sher!! I do believe we have the same consultant and I am in and out of his appointments so quick it feels a complete waste of my time/day!! I used to be seen by Dr Maloy and boy do I miss her. She always listened and strived to help. Keep on being strong and demanding his 'expertise', as you say it's your body your health and we do after all pay his wages ! I have yet to come out with blood test results ,all he ever says is if its important he would get in touch!!!! To be honest I have given up.
Go for it girl and I do hope you get the respect we all deserve. Stay well
What's with his new look? He looks like the wild man from Borneo!
Don't give up, I think fatherhood has mellowed him somewhat, my appointment 2day went really well, he was (dare I say it?) very accommodating and NICE!
If u have no luck at the next appointment, give me a shout, I'll come with u
I had Malloy 4 a while but then she ended up going part-time & worked on the days I was off so it kinda went belly up & I was shifted 2 some1 else. B4 her I had a lovely Chinese Locumn called Dr. Goh, who was very young but SO polite & extremely thorough with everything. His patient manner was fabulous. They never seem 2 hold on 2 the good 1's 4 very long
Lol.. And these Drs do not like it when u contradict them even though you're the one in pain. Sounds as if u can request to see a good specialist if u know one...?
It's good to see you back. I hope your rheumy appointment goes well. It's such a shame that you have to see this arrogant sounding rheumy. Isn't there anyone else locally, or is it a case of better the devil you know?!
Thanks Roobarb. It kinda IS a case of 'Better the Devil.....' sometimes. I have the option of seeing another couple of rheumy's but the problem is if I clash with them I'll just b labelled as a pain in the ar*e. I guess I'm just spoilt as the rheumy that diagnosed me was absolutely amazing & I had him 4 16 years so I'm used 2 'The Good Stuff'
Dr ******** at Ipswich Hospital could do with a dose of 'Sher feedback'. I used to be much more feisty when I was younger, now I have mellowed but developed a stubborn streak. If anyone finds confrontation too difficult I have a few tips too. If your rheumie is dismissive and is trying to end the consultation DON'T stand up, keep your bum firmly glued to the seat and say 'Could we just go through that again I didn't quite understand'. Ask the same question over and over again but in different ways.........can you just clarify? / what did you mean when you said? / but when I was here last time I was told something different, can you explain what has changed? / what is the process for getting a second opinion? It may irritate the hell out of them but they're unlikely to physically lift you and throw you out and they just might start to give you some answers.
Really good advice grannyjogger, thanks 4 sharing.
I used 2 take a dictaphone in with me & record my appointments, that way I could play it over until I understood, had evidence of the conversation if they tried 2 fob me off etc.
I think in previous appointments, Dr. King was quite prepared 2 'Man-handle' me out of his office lol!
hello cher78, i have thought about taking a dictaphone in with me when i see my wonderful (NOT) rhuemmy, where can i buy one from please? id love to see my hubbys face when he hears how she talks down to me and says toughen up etc etc and all her other wonderful reasons that pain is something im to tolerate.............sorry,think i need another cuppa to calm me lol x
Bless u. I believe u can pick them up from Argos quite reasonably or Ebay. If u check u're mobile phone (if u have 1) there's usually a function on there called 'Voice Record' or something similar. Just check 2 c how long it will record 4 in 1 go.
I know what u mean about Rheumy's making u feel like u're talking sh*te etc & at times I have thought that maybe I have taken something too personally (very much unlike me!) & having listened 2 the conversation back afterwards have realised that I have, in actual fact, had an appointment with a talking ar*e x
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Does knitting count as exercise? 🤔
DIAGNOSED WITH SLE AND RAYNAUDS PHENOMENON
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