PMRGCAuk
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Back to Square One

Back to Square One

It was November, 2017... The A&E Doctor had consulted with the TAB specialist and they decided it was "most likely" GCA and started me off on 40 mg of Prednisolone.

Since then, I've been on as high as 80mg and as low as 30mg... but today, because I'm caught in the fiery throws of what appears to a "flare," I am back on 40 mg, where I began, not so long ago...

Round and round and round we go, where we stop, nobody knows.

Seriously? WTF? I was doing so well. Down to 30mg, from 80 and feeing good!

I still cant help but wonder... did the "row" cause the flare or did the predestine, oncoming flare, trigger the nuclear-ballistic "row?"

Someone on this site said he purposefully avoided ALL conflicts like the plague, because he knew (first hand) the negative effects they have on his physical, mental and emotional wellness... I can so see that.

And someone else on this site said, it really didn't matter and I get that as well. We're HERE now, it really doesn't matter what prompted what...

And sure, there were many other variables that would have to be taken into consideration, if we were really trying to find an answer... the 26th anniversary of my Mom's death, learning that a old friend had a terminal disease, learning 8 days later that same friend had died.

Who knows why we're back at square one... but we are.

I've been trying to minimise (ignore even!) all the telltale signs for 10 days now; i.e. the fatigue, on/off headaches, jaw joint pain, achy shoulders, sleeplessness, couch potato syndrome and general feelings of depression and malaise. However, yesterday when I felt that godawful pain behind my left eye; and today when I realised my temples hurt to the touch, I knew.

There was no more denying...

After the GP "consulted" with Google, she concurred with my assessment... it was indeed a "reoccurrence," (her term, not mine) of GCA and my Pred should be increased. She dithered for a few minutes, while reading Google, until I interrupted her thought process by saying, "I'd be comfortable going up to 40 mg, but don't want to go any higher than that." "Okay," she said. I'm to go back if I do not feel "considerably better" by Friday.

So here I sit. Angry. Frustrated. Pissed off. Deflated. Downhearted.

To come al this way and be back at square one... SUCKS!

I know it's not a race. I know zero Pred is not the ultimate goal. I know reducing Pred does not mean I'm getting better... but come on, nobody ever wants to UP their meds, even when they know it will make them feel better!

“He awaits himself while walking, out of the icy circle to escape.” ~ Dejan Stojanovic

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That does suck! I started at 80 and got down to 12.5 before I had a flare. I too ended back up at 40. The good news is I am now down to 8 mg and so far so good. I hope the same for you. Just a temporary set back.

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Good on you! You are an inspiration!!! If you can get to 8mg... I can get to 8! Thanks!

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You are not alone - it is very common to suffer flares during the first 18 months of management of GCA. You aren't REALLY back at square one. Look at what you have been doing the last few weeks. Even at these doses.

I know though - it sucks. And it isn't fair. But life isn't...

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Thank you. No truer words.. Life is not fair. Why should I not experience the same set backs that plague many GCA sufferers? It was wishful thinking.

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Hi,

Don’t take exception to this ......it’s not meant to hurt you, but hopefully to help.

And, Before you say “Oh no, here comes little miss goody two shoes again”

I think you need to let go of some of your NEW YORK full in the face persona. Yes life is a bummer, we all know that, but for your own wellbeing you need to stop firefighting on all fronts for just a while.

You can’t do anything about lost loved ones, so when anniversaries come around remember the good times, not the anguish of them leaving. They’re not really gone, and a photo, a smile, a song can call them back.

As for your illness, I don’t think you’ve fully accepted it in all all it’s gloriousness, it’s still seems to be managing you, not the other way around.

You can’t legislate for when the proverbial hits the fan completely out of the blue, but you can deal with in a more rational way....too much angst my dear! If necessary go and lie down in a darkened room with a “do not disturb” sign on the door!

“ Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.” – William James”

Take care, and as the saying goes “Calm down dear”!

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I'd love to be able to calm down and accept pmr but I'm just not wired to do that. In our house, 'relax' and ' calm down' are swear words as I don't know how to do it. Husband has learned not to swear at me and works on distraction theory like any 2 year old having a tantrum. That works for us 👫 Any lessons on said swear word material gratefully received....but no to mindfulness, tried courses, couldn't do it and was bored to tears!

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Hi,

Don’t get me wrong, I can swear with the best of them....once you’ve been on here any length of time you’d know that. And I’m no Pollyanna either, I can’t be doing with all that mindfulness either. I am apt to call a spade a spade if not a bl***y shovel at times! But that doesn’t always translate across the airwaves!

By acceptance, I don’t don’t mean give in, but accept it for what it is, don’t continually continue to fight once the battle’s lost. That’s called realism, and not in the modern celebrity way!

Lots of longtimers on here know the battles I’ve fought, but that’s because I’ve let them; there are others, like you who are newish, and probably don’t. And that’s fine, but please don’t think I’m a frail little old lady - just because of the name!

My son calls me stoic - and he’s correct, I am. My husband’s pet name for me was slightly less genteel - the dragon! 🐲

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hi DL,

I accept that my body hates me, I accept that I have no control over PMR, I accept that my life is not what it looked like a while ago, and it never will again.... however, change is change only and I will fight to be mobile again, I will fight to find the joy again, and with the breath of human kindness, (and sheer bl**dy mindedness) I will blow the rest away..... my son called me stubborn the other day... funny how others see you, but not a picture you recognise yourself in until someone hits you over the head with a b***dy shovel and your image in the mirror becomes clearer... I am SO stubborn I will not give in to this disease, I will drag my dead, need a new hip, leg after me, whilst refusing to lie down..... (mainly because I may never get back up again)

So, I raise a glass or cup of coffee to all us stoic, stubborn, resilient dragons!

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You will one day be all the things you want to be, maybe not so young, not quite so fit, but back in love you with you, the real you, that everyone recognises....or maybe not you may surprise a few!

My son, who obviously takes after his mother for his wisdom, and modesty.....said one day “when I (he) come from a long line of fiesty women including mother and sister you’d think I’d have more sense than to go and marry another one! But then I always did like a challenge!”

Bit early for bubbly, and pure run out of virgins blood, so will have to raise a toast to all Dragons, Vikings and Aries with coffee☕️ 😁🐲

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Thank you caterpillar, Love the fighting spirit!

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Little old lady you hoo, now I've yodeled to you!! I never thought if you as a passive little old lady, your comments are too feisty and strong. Even when I had leukaemia, an uncontravertable DX I had trouble accepting my limitations and got in terrible trouble with the professor when I took on a cleaning job as I was bored, that completely exhausted me and sent my blood counts awry making them think I had relapsed. It's part ostrich mentality, part guilt at always being sick and feisty slum kid who never accepted her lot. I seriously wish I could be more 'accommodating' of pmr as I wouldn't have the battles I keep meeting - I guess I'm either feathered, emotionally traumatised or a very slow learner. All of these perhaps? I'd love to be stoic but that isn't a trait I've developed yet. You never know, might look back on this in a year and be able to say I am, who knows on this vertical learning curve. And for any who thinks I might have judged them and been rude, I apologise deeply. I am tactless, have foot-in-mouth-itis but never intend to give offence. Tease yes, judge no.

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Don’t ever feel you have to apologise to anyone on here...especially me, please.

Although I think of everyone as family, I do sometimes forget they’re not and have moderate my thoughts and particularly humour (humor) to accommodate all!

Even my in-laws (children) who have known me 20plus years have to do a double take sometimes.

I just found it hilarious that Sheffield Jane though of Miss Marple (Agatha Christie) and me in a cottage with roses round the garden when she saw my name!

I don’t have roses round the door, but clematis and honeysuckle close by (near enough) - and not quite so innocent looking either!

Broad shoulders...metaphoricallly and physically. Statuesque I think is the term used 😉

Take care.

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Yup can relate to statuesque, built like the proverbial outhouse. I'm glad you're not offended as that is last intention, ever. If you think of me as a family member, I'm the eccentric one, always wanting to know how things work, sad sense of humour and a brain that never stops. I've looked for my off button and the screws for my battery compartment but I've lost them. Hence being up at 4.15am with a shoe to do tonight. Take care fellow crew x

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Thank you Angiejnz, OMG, we are sisters from different mothers! TWINS! >>> "....I'm the eccentric one, always wanting to know how things work, sad sense of humour and a brain that never stops."

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The Money Jar. One for you and one for him. Like you do with teenagers You swear and the money goes in (make it a LOT so you hate to put it in.) and the other person gets the money in that jar, and cannot be dictated to as to what to use it for.

OR. pretend your grandchildren (or pretend-grandchildren are standing next to you at all times. I SWEAR like a trooper and now have had to absolutely stop having heard Fuck out of the mouths of babes! My children never really swore but I, the child of the '60s did. Is this what you are asking? or did I read this post with a red head?

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Funny thought, having to put money in the swear jar for saying 'relax', even writing it makes me annoyed. My mum was eccentric and I used to warn boyfriends I took home that she was 'bohemian' which terrified them so when they actually met her, all 5'3", plump and silver haired, they were relieved to find she was just potty. I know I have inherited the potty gene and life is always interesting 🤣

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Good point YogaBonnie, Hmmmmm, Max saying, "F _ _ k."

YIKES!

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Once was on a plane and this family - Mother, Grandmother and Grandson, looked very respectful - so nearly there and the G'mother turned to the little 2 year old, 'haven't you been a good boy' loud reply 'I f.....g have!' we tried to stifle our laughter, they wanted to bury their heads...it happens to the best of us....

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You are I are sisters from different Mothers!

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BOSTON! OMG... you confused me with our arch-enemy! Two Northeastern cities... one the greatest city ever, the other New York! (Okay, Rant over) : )

I do not understand this place, from which you speak. It is foreign land to my feet, I'm sure. I am made from "fire." I "firefight" for fun, for sport, as a hobby! The very first breath I took, as I was forced into this cruel world, was filled with passion, anger, fury, joy, intensity, zeal, ecstasy, heat, zest and all the rest! My lungs nearly explode with the intake of the raw emotion, that is LIFE! You speak as if I have a choice... I have no choice. This is my essence. I have no more choice than choosing my gender, colour of hair, height, or the shape of my face. I was born to be wild, spontaneous and react like an ancient volcano. This is just who I am. I'd like to be different; rational, accepting, calm... but these words are foreign to me. Not of my world. Perhaps "it" (in all it's gloriousness) is still managing me, and perhaps it will never be the other way around, and I will never learn... but I'm doing all I can do which is to react and respond to each day in my own genuine, authentic, natural way.

Love you DL... Never STOP saying I told you so and never STOP preaching {bitching!}

“For after all, the best thing one can do when it is raining is let it rain.”

~ Henry Wadsworth Longfellow

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I hope I don’t preach....

but I certainly can nag (harass, harangue, bitch) for England - so beware!

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You must be my big sister!!

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Baby of the family actually....... you know what a pain they can be! 🤨

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Certainly do...I've been told often enough....

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HA! ME TOO!

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Jeez. I know it’s not a race but to be in the same County as the finishing line would, I’m sure, be nice.

While you’ve said before you don’t want problem solving, you need to be where your head is, I would concur with DL. I’ve often worried that your ‘fire’ may well be not helping you. Pred at high doses fans the flames, I well know and bottling things up isn’t good either, but perhaps your body needs a break from whatever drives the fury in between the major crap.

The times when GCA has come knocking have nearly always been emotion driven. The hardest and most valuable lesson I’ve been learning is letting go of stuff and putting away my crusader helmet.

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Hi SnazzyD, Thank you. It is what it is and I can't change who I am or how I react to things. Someday's I am calm, accepting and rational and other days I am fire and chaos! There are times when my AI diseases manage me and other times when I manage them... It's a symbiotic relationship. No winner or loser really, just shared management of my physical, mental and emotional self.

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I think you'll find most of us here have been there, or somewhere similar. Sometimes more than once. We've got the t-shirt and are still wearing it. Remember you're still quite new to all this and it's a slow journey.

I too avoid as much stress as possible, I've become so boring in many ways but I've learnt to be more content with what I have and where I am and I've given up kicking and screaming about what I can't change.

A lot of my friends from the past wouldn't know me.

Hope this doesn't sound too patronising it isn't supposed to.

You'll beat this stick at it

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Thanks Scats! Yes, I am quite new on this path... which is another reason why I think I struggle between acceptance and rebellion... It's great that you just "gave up," kicking and screaming... I think it's hard wired in my DNA! : )

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I know what you mean, it wasn't easy. I've had to watch plants I have nurtured for years dug out because my husband doesn't realise what he's doing but I can't manage the garden at the moment so I take deep breath and accept. I'm so grateful when he does the washing but I've nothing white left it's all grey. In the past....!

Now I no longer have the energy and I just feel worse. A sorry state but that's how it is at the moment. Looking forward to a more 'eventful' future.

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My lovely and glorious, Melissa, you have come so, so far since last year. I am hoping for you that this is a very inconvenient and annoying flare, blip, setback, call it what you will but do not see yourself as being back to square one. Square five or six maybe...

It seems to me that managing GCA is a bit like the game Snakes and Ladders; up a few ladders, throw a couple of "stressful" dice into the mix and you are most certainly going down a few snakes!

When I look back at your posts last year I don't recognise that women now - she's gone - you have so moved on since then - Pred assisted, of course, but you really have progressed; don't doubt it!

When I have a prolonged and acute ME/CFS flare-up, which can last from five to ten days, as soon as it starts to subside I feel this surge of furious emotions exactly as you describe..."So here I sit Frustrated. Pissed off. Deflated. Downhearted"

After twenty-six years I have learnt to welcome these emotions as it usually means all my conflicting hormones, immune system malfunctions and the like are going to settle themselves down and I will start to perk up and return to the real world in a day or two. I hope this is the case with you.

I wish I could make you better - I can't, but I send you love and much affection and wishes that you will continue to make progress despite the setbacks...Kathy xxx

ps - when I say I don't recognise you from last year I mean in terms of degrees of un-wellness - not nature or personality x

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Snakes and ladders What a great comparison.

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Ahhhhh Pip! I can always count on you! Here I am, 48 hours later and you were right: it is simply an "...inconvenient and annoying flare, blip, setback," and I am on maybe, "square 5 or 6."

I love how you are so in tuned to your body and emotional up/downs and can see the positive side of the set-back; see that things will "...settle themselves down," and you'll start to "perk up and return to the real world in a day or two."

Thank you for the love and affection and wishes that I continue to make progress despite the setbacks! xxx

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Melissa, it's not really 'square one', as the true square one was really 80mg - 40mg wasn't enough for you. So it's square one/two = square half!

I only have PMR, but I have had two flares in two years and had to virtually double my dose each time. I'm now on the dose of pred that I was 16 months ago! Lots of us can relate to your feelings of frustration and downheartedness, but you have told us about the grieving process, so you understand what's going on.

You are still in the first year of your illness and you know it can last several years, so I hope this episode resolves soon and you can get back into some kind of routine.

Thinking of you and sending hugs. x

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Thank you Rugger... Yes, you were right! NOT SQUARE ONE! Ups and downs like a rollercoaster me thinks.. Good days. Bad days. Days of acceptance and days of chaos. Thanks for the hugs. xxx

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I Feel so bad so so bad for you. You sound like you have been kicked whilst down.

Wishing you all the very best and don't be too disheartened as I am sure you will be back to a lower dose soon. Look after yourself x

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Awe thank you Osteoqueen, I am better. Thank you!!!!!

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Thank goodness!!!!

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Hugs and sympathy from me too Melissa, life's a ***** sometimes, isn't it?

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Thanks stellafmdm, your words meant a lot! ..and made me smile!

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What they all said. A lesson I didn't really "learn" until PMR, so many years ago my future father in law said words to me which have since become almost too well known, commonplace, but they were new to me fifty years ago:

Reinhold Niebuhr, Serenity Prayer, commonly quoted as: “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

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Double 'Like' Heron.. ;-) :-)

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Thank you HeronNS, One of my favourites... maybe I don'y say/think it enough or maybe it's just not in the cards for me to be granted that much peace. : )

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We make our choices. Maybe because I spent so many of my growing up years in a household full of temper and yelling and so forth, plus another sad thing which had happened earlier, I never wanted ever ever ever to get into any kind of "row". But the opposite, swallowing words, can be just as harmful, I feel sometimes that I've lost my voice.

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Good point!!!! ....and yes, swallowing words and emotions can be just as harmful! My mother (69) an brother (59) both grew terminal cancers "keeping it all in." My father (77) and other brother (70), died of a heart attack and COPD/pneumonia, respectively. I'll take the latter!

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I plan to pass away painlessly in my sleep, in full possession of all my faculties, having put all my affairs in order (aka decluttered). Hahahahahha!😆🤣😀

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Oh yes!!!!! Goes without saying!!!!!! I will also have a full face of make-up and ruby red lips!!!!!! ...oh, and shaved legs, red nail/toe polish, skin as soft as a rose petal.... and a lovely smile on my face. : )

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Oh Melisa, l just love you 😍 when l had my Breast Cancer Surgery (mastectomy) two days post surgery l went to have my Nails painted 💅🏼 & Clare knew if anything happened to me the nails had to be done!

My BC Blog was called, ‘I’m going to beat this wearing lipstick’ 💄

And, l did but not officially yet, two more years to go!.......

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OMG! Fabulous!!! I love it!!!!

My nails are CRAP now so I cant die anytime soon!!!! The Pred and dry skin syndrome has killed them!

You will beat it officially MrsNails, you will!!!!

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Get some Solar Oil - Amazon - to save you tramping around looking for it! Rub a little in every evening & it’ll help the nails grow! 💅🏼

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Oooooooo THANKS!!!!!!

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CND Solar Oil Nail and Cuticle Conditioner?

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Yep!

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Thanks! Will arrive tomorrow!

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Just put a small drop at the base of your nail & massage around the cuticle. 💅🏼

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B****r and words to that effect. So, so sorry. I had to increase, due to stress by 50%, really depressing but needs must when the devil drives and words to that effect. We all understand. I hesitate to use this phrase but it’s all part of the dreaded GCA/PMR journey. We will get there, in the meantime keep ranting we are all there for each other. This bl***y weather doesn’t help!

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Hahahahahaha! Thank Jean56! When the devil drives... we all end up in hell, right?

I will keep ranting! Thank you!!!!

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Tough times. Must be so hard. Started at 30 so pred at those levels must be a mare. I've been in a filthy mood today. Plus aching sore hips on walk am. Probably adjusting to my downward taper (8.5 - I won't moan as I imagine others would love to be even this low. I can recommend going to see mamma Mia... Such a feel good film. Perhaps I'd better go stand see it again! Pity you aren't nearer, we could go together! Take care! X

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Hi Pongo, Thanks!!!! I love that, "I'm in a filthy mood today!" I see it as a great blog title!!! If you don't mind? I may go to see Mama Mia! Great idea! Thanks.

PS - First, I need to get through the weekend.. we have company coming in from California tomorrow! Could not have fallen on a worse possible week, but hey ho!

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Blog away with it! X

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i had "the hips" well actually still have them a bit. i feel it was nothing to do with the downward trend. they got worse and i could hardly walk - i was down to 2mg by then and the GP saying the hip pain was an age thing........then the right wrist joined in - definitely a pmr type pain. So i upped to 5, got somewhat better but not enough, up to 6 again a bit more improvement a week later I've gone up to 7 as I actually couldn't remember at what dose I was completely pain free. Just saying. Plus I had hip Xrays at onset - perfect - and an osteporosis scan - perfect........pain definitely not an age thing but definitely unbearable.

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I'm so sorry your going through a rough patch! I hope you get it sorted and feel better soon MamaBeagle!

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thank you Mamici! When I started out on this journey - just take the preds and you'll be better.....and all was going swimmingly.......then the hips! Then I met up with a college friend and out came the response to how's things? Actually I've got this thing called PMR. Oh Dick - the OH - got that a few years ago............and guess what - he took the meds for a year -no probs - and it went............I felt well you can imagine!

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So sorry, this disease sucks!

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It does indeed klaroche, it does indeed.

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Hi Melissa :-)

Sorry to hear about your latest setback, I can understand your frustration (and ANGER / ANGRRR...?!!) about dealing with the uncertainties of any or all of PMR / GCA / the Preds / Life in General etc. Yep, these things can wear you down. And from the responses I've read from others of Us Lot here, you are not alone.

This isn't intended as a 'plug' (promotion) for my mainly silly book - which I know you have, thanks! But you might like to read (or re-read?) 'wot I wrote' in Chapter 7 in a more serious / reflective mode where I talk about how our broadly different Personality 'Types' initially react to, and then emotionally 'process' (i.e. make sense of and reconcile to) Life's inevitable Changes and Challenges (whether PMR / GCA related, or other).

There's also some Psychological Wisdom (not mine - but from a well-respected source) about the Emotional Journey that many of Us Humans go through when faced with Uncertainty and Challenge that we didn't invite and / or have no control over. Such is Life - but of course many of Us Lot know that already! ;-)

On the positive side: you seem to have a very tuned-in and supportive GP who is on your case - especially if GCA is lurking around still. Make the most of her - she sounds like a Gem! And, of course, the support and encouragement from Us Lot here...

Try to Keep Calm - and also, keep posting. The purpose of this forum is as much about 'letting-off (emotional?) steam' in safe company as it is comparing notes and asking for opinions.

Hope this helps, and try to keep smiling on the PMR / GCA Journey. Dejan Stojanovic has the right idea... ;-)

Best wishes

'Uncle' MB :-)

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Thank you Mark! They do wear you down, don't they? I vaguely remember the overtone of Chapter 7, but will have to go back and re-read. My personality type is definitely not conducive with acceptance, being calm or relaxing... so having PMR/GCA is a "terrible inconvenience for me!" ; ) My GP is very nice, but limited in her ability to do quick Google searches and then interpret the data, while I sit and look at her! Luckily I do my research ahead of time and I think she trusts that I am fairly intelligent and able to "connect the dots." So she trusts my judgement which I so appreciate! And yes, I also REALLY appreciate that this forum allows me to "let off emotional steam, in a safe environment!" Your message did help, thank you!

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Has the GP ever considered that you are the data sitting next to her! Feeling for you - I have the same personality traits and very much into the taking control of me school. Hope life looks up soon xx

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Hahahahahaha.... no she listens to my complaints and then googles them.... I guess because she is not familiar with PMR/GCA. It is funny how she takes my advice though...

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All part of the service Melissa! :-)

From experience: the main challenge and psychological / emotional 'work' for some Personality Types (especially Us 'Doers' and / or Expressives') when dealing with feelings of not being in control (in whatever context) is to take a Leap of Faith in trying new coping strategies - but which might seem counter-intuitive at first! ;-)

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Mark is book available on kindle or in the traditional format? 📖

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Hi MrsN :-)

Unfortunately my (mainly silly - but with some serious 'psychological' bits!) book isn't available in electronic form because the e-publishing process via Kindle / Amazon etc is very complicated for small volumes of sales and would mean zero profit for the Charity from the net proceeds.

But the book IS available in physical (paperback) form and you can order it via the PMRGCAuk main website. Go to the link 'Books about PMR and GCA' and click on the link to my 'Write Me Funny....' book website (or google: writemefunny.co.uk). From there you can find out more and order / pay securely via Paypal using a credit / debit card - or by old-fashioned cheque in the post if you prefer.

Any problems... send me a PM here and I'll forward all the info ;-)

MB :-)

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Thanks Mark, will get it ordered! 😉

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Great Mrs N :-). I'll look out for your order and despatch a book to you by Royal Mail 1st class post within 48 hours of receipt.

Hope you enjoy it and find it useful!

MB

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What a wicked dance we are in. I know when my adult daughter acts up and sends me into a fit, I have to just walked away. I love her, but just can't deal with other people and their stuff right now.

I'm only 2 months into the PMR/GCA journey, but I can see clearly when the stress builds my headaches and body aches begin to come on like a flood. Here's to better days soon for you Mamici1.

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Hi kay7954, thank you. You are new to the journey... two months! Wow! I feel like a veteran! Don't let me scare you! I b _ _ _ h and moan; I'm up and down... my rants are harmless and usually over in 24 hours! Good luck to you and I hope yo are feeling okay!!!!

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Oh mami, so sorry you have to go back up! Not to 80 though, You have made so much progress and you will again. All you’ve been through just got to be too much!

You’ve helped so many with your writing! Your post about your row finally made me open my eyes to the damage of conflict and arguments. I live with my son who has serious health issues of his own, we share expenses, necessary for both of us, and when he’s feeling bad he can say things that hit some sore points and before I know it I’m angry and words are flying out of my mouth and pretty soon I’m angry, sweating, exhausted, and aching somewhere.

So now I’m walking into another room and not trying to defend myself from his words when this happens. He’s not abusive, just had a sharp tongue. And I’ve always been “too sensitive”.

Your rant and others on here about avoiding conflict have sure helped me chill, as they say out here in California. It’s just not worth it.

We usually get along well, he has a good heart, but struggles too.

Hugs and good thoughts to you 💕

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Hi Mstiles, Thank you so very much!!! You are 100% right... I did not go up to 80mg THANK GOD!!!!! Thank you also for saying my rants have helped you and possibly others! That means so much to me! I am happy also that you have found a better way to deal with your son... good on you. It must be so hard with both of you not well! Hugs and healing thoughts back at ya! xxx

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Buggar is all I can say, repeated many, many times over.

But then I also thought: we are all quite noisy on this forum, discussing, ranting, exchanging ideas, having a laugh - and it gives us the impression that we have some control over our bodies and our health. Makes us a feel a bit better. Occasionally the reality sets in. There is this very quiet war going on in the background between the disease and the medication, GCA/PMR and Pred. Sometimes the skirmishes turn into a full scale battle and, a little late to the realisation of the fight ( usually because life distracted us) we realise that we are not as in control as we thought, and maybe we have to up our ammunition. BUT at least there is ammunition available, and the chance to disarm when we can, even if it seems a long way off in the future.

I hate not being in control (of my body and anything else for that matter) but health wise sometimes we are not. It’s a sobering thought, but once you’ve realised it, the only way is forward. 40gm is only temporary, stick with it. Hugs. X

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Buggar indeed peace_lover!!!! I love your assessment... the fact that we can so easily fool ourselves into thinking we have "any" control over our bodies or illnesses is ridiculous!!!! Thank you, for reminding e that sometimes, "...the skirmishes turn into a full scale battles." I need to remember that! Cheers and hugs back at ya! xxx

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Typed a long response, then accidentally clicked on something which took me to another page-- my response lost. When and if I get the momentum, I will try to re-write.

Briefly:

Stay strong. You can do this. And, like Billy Joel said, "Don't go changing." You are who you are. I like the feisty, tell-it-like-it-is, you. Maybe it's the feistiness that's kept you going. Don't beat yourself up about the row, or your sadness over loss, or ... It could have been any of those things, or none. Sometimes, as my doctor said, "you just may have to live with the 'not knowing'."

Reminder (on being Italian:)

Danny : How can you say that?

Claudia Zimmer : I just say what I think.

Danny : Well, maybe that's the problem! Why do you always say what you think? I mean, do you think your thoughts should just fall down from your brain onto your tongue like a gumball machine?

Claudia Zimmer : Danny, I'm not going to start watching what I think or what I feel! I'm Italian!

The Four Seasons imdb.com/title/tt0082405/ch...

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Thank you Canygirl61, Yes I am who I am!!!! Couldn't change if I wanted to (see my response to DL above) I'm like the weather in the UK... if you don't like my point of view, just wait a minute! It can change with the touch of a breeze.

PS - Love, love, love... " I'm not going to start watching what I think or what I feel! I'm Italian!" I'd change it to say, " I'm Sicilian, Italian, Irish, American!" YIKES!

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What a lovely bunch of good hearted souls you are!

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Aren't they!

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Hey twinny, I've just come back from the GP as I've had to go back up too. I KNOW I'm doing too much and pretending I am healthy doing a musical 6 days a week for 5 weeks including dress rehearsals but.... I have a life and passions that I'll be beggered if pmr is going to take it all away. I'm only 53 for goodness sake. And I know I'm a type A personality (as I suspect you are too) who rages and puffs, it's as DL says probably not the healthiest traits to have but I don't know how to 'calm down' (swear word in our house) believe I wish I could. If you could read my diary, the magic dragon has got nothing on me 🐉 All I can do is send hugs and say yup, I get it/got it 🙋

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Hahahahahahaha! Misery loves company! Yeah... you're a CRAZY LADY!!!!! I thought I was bad... I changed the bedding by myself! You're doing musical 6 days a week!

Yes, I think I'm a "Double AA" personality type actually! ...and "yes," calm is not in my vocabulary! Thank you Twinny... I appreciate your solidarity! xxx

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Dear Melissa

I know the feeling - and many - even most of us have shared in it - that realisation that 'it' has 'got you' again - just when you feel you may have 'got it'. DL made that point well I think when we reflect on whether the disease 'controls us' or we 'control it'. Thing is there are SOME days when we feel we have 'it' by the 'short and curlies' - and we have a good day - perhaps we have tapered successfully for a while and things 'almost' feel 'normal'.

( BTW I know I use tons of inverted commas but I think you'll understand that - as everything is far from exact and always I feel 'provisional'). So there is that constant underbelly throb - despite the fact we may be having an OK day or even week - there is the intimation that there is still something 'lurking' just waiting to pounce ....

I am not a person who suffers paranoia - I am in fact quite pragmatic most of the time BUT it is difficult not to take GCA 'personally' - after all it ATTACKS us in a very individual and personal way. And yes It is hard to NOT imagine this thing as a 'beastie' - as you have yourself done so fantastically in the past - cos THAT is what it sometimes FEELS like - and we struggle to find metaphors and analogies to comprehend and explain our experiences - even to ourselves ...

Having had to 'taper up' myself recently - and more than double my dose again i know that feeling of having to climb back up the slide just when you thought you were sailing down it - to the soft pile of sand which was visible - waiting - at the bottom .... I know ...

BUT I also think we must take a leaf from the books of our 'successful' predecessors and as PMRpro said to me recently - 'this too will pass' - and we will find ourselves one day in lives without GCA - but no doubt THEN there will be other 'stuff' to negotiate - there always is. I am now suspecting life without GCA may not be the utopia we like to imagine - and it is also important to LIVE with what we have now in the best possible way we can - even sometimes through our tears ....

I hope you feel much better soon !

Love

Rimmy

XX

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Hi Rimmy, My Sage. Yes, it did "get me again." : ( I have to try and remember "it" is always "lurking!" I tend to get caught up in false hope and forget that!

I humorously wondered if I was subconsciously in "competition" with you and when I heard you had gone up to 30mg, I had to "one up you,' by going to 40mg? : o Hahahahaha!

Yes, I agree this too shall pass... I never stay in the dark place for too long, but I do love exploring all the nooks and crannies on the edge! I love standing on the periphery of that preverbal cliff and peering down into the darkness and danger... weird, huh?

xxxxx

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Dear melissa

you say:

'I do love exploring all the nooks and crannies on the edge! I love standing on the periphery of that preverbal cliff and peering down into the darkness and danger... weird, huh?'

No NOT weird at all I actually think it is kind of 'healthy' -( I assume you meant 'proverbial' but somehow 'preverbal' fits as well ....)

One of my favourite lyrics in any song is from Emmylou Harris' Red Dirt Girl when she also refers to the 'abyss' - equating deep depression as a (loss of) 'feeling' which she perfectly describes as sense of 'falling' through endless space - or as an experience of having no (meaningful) structure or a 'net' to catch you :

'One thing they don't tell you about the blues

When you got 'em

You keep on falling cause there ain't no bottom

There ain't no end

'

Thing is it IS 'tempting' even exciting to stand on the very edge and stare down - we all need to confront our mortality and it is a MUCH BETTER alternative than the 'falling' desperate and lost feelings people have when in depression - the main thing is just to 'look' as an antidote to despair - and after all surely life and death are the most engaging of all 'subjects'

Rimmy

XX

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Hi Rimmy, It comforts me to know you don't find my joyful, teetering on the edge, "weird." (Hahahahaha, yes, I did mean "proverbial," but now I question it's use as well?) Beautiful lyrics... I didn't know the song, but just listened to it. Yes, I think it's healthy too; confronting our own mortality, dark side even our own sanity, sometimes! Denying that any of them exist, doesn't make it so! So yes... I will continue to play on the edge when the mood strikes, and rant while I'm there, because I never stay too long and always step back and find my place rightful place.

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Another bright dawn this morning Melissa. New day ahead. Fresh start again. You're not going backwards. It's gentle braking a change of gear that's all! ATB

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Yes it is another BRIGHT DAWN Pepperdoggie and I am happy to have you by my side! Thank you!! xxx

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Don't walk behind me.I may not lead.Don't walk in front of me I may not follow. Just walk beside me & be my friend. (Albert Camus) It's a pleasure.

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YES! I love that !!!!!

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Morning Melissa

It’s a bit of a B when you have to go back even 1mg but 10mg you feel as if all the work you have done has been in vain.

Maybe the ‘row’ was the trigger but don’t beat yourself up trying to explain it, the beast that is PMR/GCA has a mind of its own.

I was (& still try to be) the life & soul of the party, the raconteur with a story for every occasion but this takes energy which l more often than not don’t have!

I can no longer multitask, l have to use the ‘pause button’ literally or figuratively!

Sometimes ‘things’ thoughts or actions etc may have to be put away in ‘boxes’ & forgotten about or at least left to lay quietly & not be disturbed or chewed over. Maybe take a little time to relax & let the extra Pred do its work & in a couple of days you’ll feel the benefit.

Take Care

Angela x

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Pipalina compared this lark to a game of Snakes and Ladders. Think of it as just a ladder on your journey and you are not back to square 1. Big hugs 🌺

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You are right Hollyseden, I am not back at Square 1! Thank you! And Big Hugs back at ya!

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Predhead🙄 Honestly I do know that you go 'up' ladders and 'down' snakes.

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‘‘Tis a bugger but it’s only a temporary thing. What’s that Liz Taylor saying about putting your red lipstick on 💄. Xx

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Hehehehehehe.. I got to use it yesterday in response to someone else's post!!!

“Pour yourself a drink, put on some lipstick, and pull yourself together.” ~ Liz Taylor

LOVE IT!

xxx

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Hi

Lots of us have flares. The thing is acceptance with grace.

I would recommend a Mindfullness course. My GP advised me to buy "Mindfullness for Health" book. I bought e book and followed it religiously over 8 weeks, one chapter per week. Yes, it was boring. Yes, it slowed me down. Yes, I became more accepting of my condition. After i finished the course I felt calmer, and practised every day. Now, 8 months later I use the technique when things begin to build up......and it works. Even used it before and after my recent hip replacement operation to keep me on an even keel.

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Thank you Valnvaughan... good advice to be sure, but see my response to DL above... I think it will take more than a course or a book to douche the fire that burns in this belly and has for 64 years! I may have to look into though... just to get more informed! Thank you!

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🤗 🤗 🤗

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Thank you! xxx

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hang on to this bucking bronco, it's certainly a ride none of us signed up to willingly, but here we all are, hanging on with you, waiting for our turn to get back up and try to hang on too....

something I thought I would never have to say... the fur on my face has become so prolific that I am now finding crumbs and bits of debris in it.... I truly am turning into a hairy chipmunk, moonface....... oh! the shame! the embarrassment!

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Thanks caterpillar, always good advice... "hang on to this bucking bronco!" Thank you for waiting and hanging on with me while I got a better grip! I'm good now.. all settled in the saddle and ready for any try! xxx

PS - No worries ... I have a "lady shaver," and it works great except I get STUBBLE!!!!! If my OH goes to stroke my face, I FREAK! Hahahahahahahahaha.

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Oh thats rough. So disappointing for you. I do know how you feel - most of us here probably do - up and down on pred like a rollercoaster! I hope the disappointment moves along and you can start afresh. Very best wishes!

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Thank you powerwalk! I appreciate your kind words. The disappointment has moved on and I am back on track. Thank you !

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Everything changes. You can make a fresh start with your final breath. The water that you once poured into the wine cannot be poured off again but everything changes. Brecht 🌺

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Wow! "You can make a fresh start with your final breath." I love that .

Thank you my friend. xxx

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Been there on the Pred rollercoaster! Just when you are on the down along comes another hill and up you go!

I always had the reputation of a smiley dragon (think Shrek) in my family. Pred increased the fire and occasionally everyone got a bit scorched :D

Over the last few months I have been reducing and now at 12mg my lowest for 2 years.

I have learned to try and let everything go (think Frozen) and not to let my monkey mind take over. Its hard but it helps and meditation has been my big helper.

Sorry for your loss but your friend will live on in your heart and in the hearts of those who loved him.

Every day is a new gift. Some we like some we don't! But it a gift and one to work with. We can choose to be happy knowing that all things change and emotions are like the waves licking the shore of life.

Hang in there Melissa this too will pass xxx

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Thanks S4ndy... Your comment about "monkey mind" made me think of myself as those monkeys that throw poop at everyone!!!!! : O Hahahahahahaha. Not very nice at all!

Thank you for the kind words.. much appreciated. xxx

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My heart goes out to you 😥

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Awe thank you joyce69, thank yo so much!

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I know you don't want to hear this again but lots of us have been where you are. Just another fly in the ointment I'm afraid. Your 'AFPDD' feelings have to be a temporary tantrum or it will not help you. Just accept it's happened, and move on! You have reasons for the flare and if you want to recover without having to go higher still then you have to do that! You are not back to square one! The snakes and ladders analogy is perfect, The first year is the worst, you haven't completed that yet! This weather doesn't help either - I'd send a virtual hug but it's too hot! xxx

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Thank you Telian! Must remember, "the first year is the hardest, the first year is the hardest, the first year is the hardest!"

It was a temporary tantrum.... it's always a temporary tantrum! Like I said, I'm like the weather in the UK... if you don't like it (my mood, attitude, sate of mind), just wait a minute! I fall fast and deep, but always come back quickly and make a full recovery! xxxx

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As long as you do, that's my girl!...

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Oh you poor girl, but it’s part of this wretched illness. So many of us have optimistically hoped we’re tapering well only to “flare” - in my case with under far less stress than you’re experiencing. You’ll soon be back on track and this time tapering will continue without relapse I’m sure. It happened to me last year and from 40mg a year ago I’m down to 5.5mg (my fingers are crossed it will continue to let me go!!)

I was given an emergency appointment with my rheumy when I “flared” and am still embarrassed when I think back. I was going from the hospital straight to the theatre afterwards with choir friends for a karaoke production of Grease so I had put temporary streaks of pink into my hair. It wasnt my usual consultant but a charming though very solemn gentleman. There was me explaining a renewal of my distressing symptoms (headaches, blurred vision, claudication etc) whilst sporting bright pink hair! It didn’t end there. The Doctor was training a Junior and so he decided to run his fingers over my scalp and temples to demonstrate areas of swelling etc. And all I could do was cringe and imagine how much pink hair chalk he’d get over his hands! Bless him, he never said a word, never smiled but did agree that I needed to up the Pred and to taper more gently than previously. I thanked him profusely and fled. Haven’t seen him since.

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Hi Paulamac77, Oh my goodness I can picture you in A&E with bright pink hair while explaining your "distressing" symptoms! Hahahahaha! When I went to GOP the other day (because I have a huge ego and I am vain!) I made sure I looked good; put on make-up, bright red lipstick, did my hair... I wondered what she thought (as she sat there at 4:00 in the afternoon, looking quite tired and bedraggled) how on earth I could be complaining about being tried and not feeling well!!!! Thanks for that story, and the kind words...

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Sorry - meant to say 'I am sending you a virtual hug, even though I'm too hot!' 'It's the Pred!'

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I got it!!!!! Thank you ! xxxxxx

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Your attached picture could be my mum in 1956.

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COOL! Serendipity. xxx

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Well read your post Melissa, read all the answers / replies and I'm sure you know we are all routing for you and just want you not to be beaten down by this temporary blip but to carry on and know as we all say" this too will pass". It doesn't really matter,as you say, why it happened but just to accept it has, it won't be forever, you will move forward albeit not at the rate you wanted, but you will.

This is a journey, it does have its bumps and turns, try to "ride" it as best you can, you aren't at square one because you've already learnt so much on the first leg of your journey that you can incorporate into your next part.

I think it is important to " go with the flow" but that's easier for some than for others, but is a learnt technique- to cut down on the stress as much as humanly possible, to let things go over our head, to not to try to be all things to all people, to pace, to basically think more about our health and how we can maintain more of an equilibrium. I think this too is part of the journey- adopting attitudes which for me at least have been quite alien at times.

Take this time to now rest and pace ready to move on to your next leg of your journey.

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Dear Jackoh, wise words... wise words indeed! Thank you! HA! I have never been a "go with the flow" kind a gal! More of a Salmon! ...but yes, I agree it would be much easier! I really like the concept of obtaining and maintaining, "equilibrium." Thank you!

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I just have to say that I love all of you. This group is a life saver for me. The first thing I do when I wake up and get my coffee is get to this site and see what all of you have to say. I read this like some people read the morning newspaper.

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Aren't they the best???????

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Ditto!

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Just wanted to add my penny’s worth, even if a bit late.....in reference to the snakes and ladders, I always say that this is like snakes and ladders without the ladders and that is why it is so frustrating and difficult. In over 6 years I feel I haven’t made much progress at all- currently on 10.5. But actually, it is not about “progress “, and when people manage to reduce and are given lots of congratulations, it is not really their achievement, but just that their PMR is less active than mine. So, it is not my failure either, it is the roll of the dice. Having said that, in the last couple of years, I have moved out of denial and begun to listen to my body which may have been trying to tell me to stop. So, I have now retired and am learning to do much less to see what happens. Watch this space!

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Hi suzy1959, Thank you! You are right, it is a roll of the dice! And that false sense of accomplishment we get when we reduce, is just so silly!!! We've actually done NOTHING! Our bodies decided to accommodate the change, that's all! Keep on learning and keep on sharing! I'm watching!

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