Greetings to all here, whether you are a PMR / GCA Veteran, Survivor, Newbie, Confused.com, or even the bloke / woman at the bus stop. Either way, I address this post to YOU LOT collectively...
You might, or might not, suspect that my various BS ramblings here (careful now - by BS, I mean Bonkers Silliness) during the past 2 years-or-so of surviving PMR have been intended to amuse myself more than for any other reason. I am fully aware that laughing alone is the first sign of insanity, and so I rest my case. My Therapist is sympathetic - I pay her well.
That said: having recently reached the heady heights of both recovering (hopefully - we'll see..) from PMR AND being a published contributor in recent PMRGCA newsletters (Wow - what, me?!), I must 'bow' in greater recognition of the far more important contributions from those PMR / GCA Community 'Aunties', who tirelessly and relentlessly answer our various posts and queries of whatever kind around all things PMRGCA on an almost daily basis, whether relevant, sensible or otherwise.
Who are the PMR / GCA 'Aunties'? A relatively anonymous and modest bunch of Ladies (I use the term 'Ladies' in the most respectful way) without whose expert knowledge and personal experience of all things PMRGCA, the rest of Us Lot would often be 'in-the-dark' about how to negotiate the precarious process of understanding PMR / GCA symptoms, steroid tapering, dealing with (sometimes less-well informed) doctors and specialists, and much more besides.
But make no mistake - The Aunties aren't to be messed-with when it comes to challenging their expert advice and wisdom. Take it from one of Us Lot who has, occasionally, been on the 'wrong' side of them (!) with my various hypotheses and ramblings around the possible causes of PMR / GCA - and how best to manage them.
The Aunties here also have a great SOH, Humanity, and Compassion. They have massive insights into what we all experience with PMR / GCA: not least through their own, and equally very personal experiences of the ravages of these serious, and often Life Changing health conditions. The Aunties will tune-in to any of us, any time, and give us their objective and expert advice, regardless. Try to Trust them, even if you don't necessarily agree with them / their opinions initially.
As for the book of Silly Ramblings that a few of the more Bonkers of You Lot have (recklessly)? encouraged me to put together: all I can say is: 'Watch this Space'. It will be out soon and, as always, I blame You Lot for inflicting any co-lateral Fun on yourselves.
Best thoughts and wishes for the weekend ahead..
MB
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markbenjamin57
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Hear, hear MB. Well said. Look forward to reading that book!
I am able to verify your plea of 'sanity' by confirming that, by sharing your BS ramblings, you are definitely not laughing alone! I for one start to smile as soon as I see the username Markbejamin57 and that's before I even read the post. A wonderful tonic! Thank you.
Just read your article from Sambucca's link below.
Mark you are indeed the double entendre King! Quote; " She (Dr French) says I'll soon feel like a new man - I'll be able to get a firm grip on my morning stiffness and probably even feel quite euphoric!"
Like reading another novel by E L James! 😅😅😅😅😅😅😅
Agree Laughter is the best tonic.
(Just gone down for first time from 15mgs to 10mgs today hence the restless 2.30am reply!)
I must confess to 'borrowing' the J&J theme and style from the late Sir Terry Wogan's hilarious Janet and John stories on his BBC show years ago. I still fall about laughing when I dial them up on YouTube.
I wasn't sure if the naughty innuendos would work here, but they obviously tickled the imaginations of a few of You Lot - and enough to get an airing in print. Wow!!
Well done with the (quite ambitious?) reduction - fingers crossed!
Mark Benjamin57 I totally endorse your comments about the "Aunties". They are enduring in their support for us all and their knowledge and compassion is the only thing that has got so many of us through this unpredictable illness. At every stage of my own battle I have turned to their advice for guidance and it has always been there for the next set of problems to contend with. I hope our gratitude is some reward for their tireless help.
Well said Mark, the Aunties know who they are and they have my utmost respect. I have said many times that their knowledge and guidance over the last nearly 3 years has been invaluable to me at least. Not only that, they have shared it with us in an almost interment way to get those of us just starting out on this unplanned journey and those of us who are strugaling to reduce our pred and to shed light on why the 'Doctors Plan' often does not work for many of us.
So thanks again Mark for highting this fact and thanks again for your wit which for me always lightens the pains.
You can read Mark's take by following this link and going to page 5............the other pages are quite good also. Some of you will already have read that take on here, but what you have not seen is Mark..................you actually get to see his rather debonair photo.............so you do not have to engage your 'steroid brain' by using your imagination - less stress !!!!!
You can also download any article or the whole of the newsletters past and present, hard info in them as well.
Mark actually got a glossy copy just this once...........(big grin and wink) so he can place it in his reading room, which is rather small, functional and quiet...............so I am led to believe.
Comments always welcome on content good or bad, that is how we learn.
By the way, two of them are not 'Aunties', and of the other 5 one is not a lady, she is a crotchety octogenarian early next year.
Well, yes, I received my copy today and have hung it in the 'reading room' in lieu (or is it in loo?) of somewhere more appropriate. The mugshot was taken whilst in Kiev, Ukraine a couple of years ago. Now THAT's another story entirely!
I look forward to your book and can can you send a link to the PMR mag you mentioned? I tackle all my problems illnesses and life changing events with humour and BS. Sometimes most inappropriately. It's good to read another persons approach to what we can't change is of a similar sentiment. Keep up the good work Mark.
Lovely to hear about Janet and John again! I look forward to the next adventure. Endorse allmyoumsay about the Aunties. Where would be be without the ?
As I also have RA I use their site too. Sooo boring after one of your epistles!
Smile and the world smiles with you .......... uncle Mark you are a diamond, shine on! I raise a glass (well cup) to you and all the Aunties for your tireless work. Thank you one and all xxx
I endorse all the varimultuous (must be the medication?) complimentary comments about our wonderful and patient 'aunties' who have kept our sanity when all around looked pretty grim ....
Thank you again..... keep up your great work ... big hugs to all 🌷🙋
Thanks daw50, but it's really the Aunties who deserve the credit!
That said, I'll dust-off my special pen just in case Celebrity status knocks on my door (as if!). The autograph might fetch a couple of quid on ebay in 20 years' time?
Whoop whoop for the Aunties! And you too Mark for bringing a smile to the rest of us stumbling our way through this disease. I cannot imagine how people coped pre forums and internet, silently suffering and following all the wrong advice I expect! THANK YOU!! 💐🌻🌼🌹🌷
I quite agree re. the Aunties, Trixiechamp (..Tanya..?).
At least I've found a way to contribute positively here, although it was the last thing on my mind when I started writing this stuff. Yes, the internet / social forums do have their benefits, even if we complain about them often!
Thanks to You Lot for egging-me on too. As usual, all I can say is: HAVEN'T YOU GOT BETTER THINGS TO DO?!
I appreciate your levity. I feel so much better on the lighter side of this illness. As a newbie, I could not survive without the help of my Aunties. My friends and family are helpless when dealing with anything PMR related. Thank G-d they simply provide love and support.
Being plugged in alleviates the fright, loneliness and adjustment to the new normal. My 94 year old mother who goes to the gym every day and has a boyfriend only wants to know the date I will be cured. I'm a "talker" and not great at keeping things to myself so by addressing issues with my Aunties, I am learning to dumb things down with my mama!
Looking forward to your book. Smiles and laughter are medicinal! Thanks for your words.
As always, the real credit should go to the Aunties for their more important bit, but it's good to know that I can raise a giggle or two in between the more serious stuff here
And as for your mother...!
Hopefully, THE BOOK will be out by the Autumn. Be warned...
I feel quite chuffed to be awarded the title of Uncle by some of You Lot - although I worry a bit that it conjures up an image of me sitting here in a matching cardigan and slippers whilst chomping through a bag of Werther's Originals and doing other 'uncle-ish' things like dribbling into my Horlicks, whistling old Des O Conner songs (out of tune, of course), and polishing my medals etc! ;-/
Have been on holiday so as usual am late in posting ( now a couple of days behind rather than the normal one !) Your description of an Uncle is so precise and detailed Mark - could it possibly just be made up??!! Don't paint such a perfect picture - we know it isn't you. Yes we have a lot to thank the " aunties" for and always enjoy your banter with them. Looking forward to the soon to be publication. Thanks for keeping us all amused and also the encouragement that you always try to engender. You always seem as well to give personal replies and that's no mean feat. So 3 cheers to the aunties and uncle...... I'm sure as someone else mentioned this forum is not like any other. We are all so grateful we found it. XxJackie
Ha Jackie, nearly could imagine myself this way... but in about 40 years' time tho. Well ok, in fact, never if I'm honest. I'll settle for being an centenarian James Bond (if I get the chance).. ;-).
Yep, I do try to give You Lot some positive strokes in between the Silly stuff. It's because I know how powerful Encouragement and Hope can be when you're struggling and thoroughly fed-up. Been there and got the T shirt too. But I'm sure my individual replies can't hold a candle to those of the Aunties - who seem to tirelessly read every single post here and reply to many of them.
As for my 'banter' with the venerable Aunties? Well, I do feel a bit like an arsonist messing around in a petrol station sometimes (if you get the drift?), but they seem to like to join in with it. Either that or they're just humouring me...(probably the latter)
I agree, this forum is a goldmine - not just of advice and support but Humour and Humanity too. That's why I still hang around with You Lot even though I should be getting on with being 'Normal' again (whatever that is!). Long may it Continue..
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