PMRGCAuk
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"Coming back to where you started is not the same as never leaving.” ~ Terry Pratchett

"Coming back to where you started is not the same as never leaving.” ~ Terry Pratchett

Today I reduced my Prednisolone intake to 60 mg. Woooo Hoooo!

It seems I should be further along, because I started with 60 mg, back on November 13, 2017; but the reality is I've been moving only in circles and find myself back at square one.

The journey has been gruelling and at times intolerable. And I'm not ashamed to say it has broken me more than a few times... but I've learned a few lessons, met some brave, strong, amazing people along the way, and I've discovered a creative side of me I never knew I had!

All in all... Terry was right; I may be back to where I started, but I have travelled far and wide!

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Good morning, if that is what it is where you live, you are such a beautiful pearl in the chain of forum followers!

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What an absolutely beautiful thing to say... thank you. Thank you so very much.

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....and what a journey! Well done, Melissa, for getting this far. We're with you all the way.

Yesterday I managed to get to RHS Harlow Carr to see snowdrops and other spring flowers - so uplifting!

x

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YEEAAH!!!!! Snowdrops!!!!! I managed a walk into town (1.3 miles), a leisurely lunch and took the bus back! Hahahahahahaha!

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Yes always 'lunch' that's MY incentive ...

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My yard, here in California, is decorated with a bumper crop of volunteer snow drops right now. The plum tree has begun to bloom and the camelias are celebrating the rains of last year. I walk around the back yard and talk to all the plants.

When I feel a bit drained, this is what restores me.

This poem was the core of my mother's philosophy. A glass half full person.

Jenny Kisssed Me: en.wikipedia.org/wiki/Jenny...

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Lovely poem!!!!

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What a lovely picture you paint of your back yard. I like the poem. My daughter is a Jenny and a joy.

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How lovely to see the snowdrops. We don't see them in our little patch, straight into daffodills before the Christmas lights are down at the end of January. Here at the moment it is mimosa trees and camelias that compliment the daffodils, peach blossom and magnolias on the way.

I don't manage to walk far before the fatigue sets in but there is something about Spring flowers that makes the effort of reaching them so worthwhile.

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Daffodils, mimosa trees, peach blossoms and magnolias... sounds heavenly!

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Oh dear not today, cold, damp and cloudy outside my window.

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Same here in Brighton, UK. There was sun... but it is hiding now. Ahhh well, time for a nap!

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That's encouraging. Good to hear you didn't stay in bed in that silk negligee!

I can't remember when I last walked 1.3 miles - New Year's resolution to walk more MUST be put into action soon - so easy to blame the weather!

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That silk negligee is calling though...

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Round and round we go! It’s like a monopoly board, some squares we win, some squares we don’t. Some squares we get sent to prison :o

You have completed a full circuit, WELL DONE! You can now pass Go and collect £200 and proceed directly to.......... (enter own choice of destination, but remember, only one destination, either the silk negligee shop or the snowdrops. Not both. PMR/GCA won’t allow both ;) )

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OH DRAT! Decisions, decisions, decisions.... soooo difficult!

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Hi Melissa, I have been reading T.S. Eliot’s Four Quartets and finding a deeper understanding of the poems than I ever have before.

“We shall not cease from exploration

And the end of all our exploring

Will be to arrive where we started

And know the place for the first time

If you or anyone else feels like some balm for the soul, I can highly recommend these poems. Easily found by googling. The above is from Little Gidding, my favourite. 🦋

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“We shall not cease from exploration." ...written by a PMR/GCA patient, me thinks!

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Whilst reading the above poems, this thread has developed a poetry of its own. Spring flowers make the heart sing!

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Although written by the same man who wrote "April is the cruelest month...."

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WOW! I have not been expose to poetry... but WOW!

APRIL is the cruellest month, breeding

Lilacs out of the dead land, mixing

Memory and desire, stirring

Dull roots with spring rain.

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Compare with Chaucer: "When April with his showers sweet,

The drought of March hath pierced to the root,

And bathed every vine in such liqueur

Of which virtue engendered is the flower...."

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Which I find find far fairer...

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Hahahahahaha. It figures... I think I prefer the T.S one! Oddly, I can relate to not looking forward to Spring. I get comfortable, self-contained and lackadaisical in the winter... and end up liking the dark, quiet, loneliness. Sometimes I'm just not ready for the longer, lighter days, with all their expectations and activity!

I actually think I suffer from SAD!!!

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I did in the UK - but not here. It isn't light as long in the summer but the winter is far better, especially when it has snowed...

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Where is "here?"

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Half way up a mountain in northern Italy :-)

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Ahhhhhhhhh, lovely!!!!! Amiamo l'Italia ... tutto!

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Ich auch - here is German-speaking...

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Ahhhhhh... Yeah, no can do.

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We tend not to think of the UK as being a northern country, perhaps because of the Gulf Stream. I remember when I was on a Baltic cruise a fellow passenger remarked to us that as we were from Nova Scotia we must be used to being so far north. It was then that I understood that we aren't, but the Arctic Current changes everything for us! I believe Halifax is at roughly the same latitude as Nice....

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In Dundee as students we queued for the cinema at midnight, reading the paper without artificial light, and when we came out at 3.30am it was light again. When we returned to Scotland from Germany I couldn't get the girls to go to bed - we'd had rolldown blinds on their bedrooms and it was pitch dark. Not so in Scotland...

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I do prefer the shorter days most of the time. It makes me feel like I am not missing much in the winter when my body refuses to be eased except by rest. O don't like the heat so summer can be a nightmare. There were two days last week that were perfect; Sunny and cold with low humidity. Yum.

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T.S.Eliot had suffered a ‘mental breakdown’ and came to Margate to recuperate. I live a few miles from Margate, so it is no wonder to me that the poem is maudlin!

mamici1 I think that your take on not looking forward to spring may well have been his meaning, possibly a metaphor for his reemergence from illness?

Personally I’ll take the diversity of April, tempting us with spring flowers, then gusting and gales, rain and sleet. Promising of good times, but warning us that nothing should be taken for granted.

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Is that a comment on Margate or TSE and his mental breakdown?

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Oh....Margate!

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Never been there - Ramsgate yes. Quite liked it many years ago when the hovercraft set forth from there...

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The hoverport is being consumed by nature. Only dog walkers there now, and blackberry pickers.

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At least it isn't migrants like Calais

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Although 1920’s Margate was probably/undoubtedly a far nicer place than today offers. It was quite ‘the place’ for a holiday. And The Royal Seabathing Hospital (now defunct) was a TB hospital. Quite something to work on wards when the sea was crashing at the windows! (It was orthopaedic by then, not TB)

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Bit like Scabs (Scarborough) which was the northern "Place". Never realised that seabathing was the poor man's Davos and TB sanitorium...

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I don’t think Margate could offer such clear pure air as Davos...but it probably made up for it by gusting strongly!

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Nah - it'll have been the freezing water!

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Great... the first poet I connect with, is one who had a mental illness! Hahahahahaha

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I know of 3 poems I like. Here's one by Stevie Smith

poetryfoundation.org/poems/...

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One of the most inspiring evenings of my life was a one woman reading/singing/poetry evening with Maya angelou. One of my sheros😎

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That must of been amazing Poopadoop. I’m jealous!

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She was magnificent.

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Sad.

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Her poems are so inspirational. Good choices.

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Don’t take it to heart mamici1 one in four of us has mental health problems ;) and that includes poets (their ratio may be higher? Poetry being a way to express their angst?)

My favourites are First World War poets, and they had EVERY reason to be mentally distressed. Several of them sojourned at Craiglockhart.

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The artist from ww1 who painted in the church was very moving. My brain has totally hidden his name. It may let his name come out to play eventually but I won't count on It!

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Wilfred Owen? Sassoon? Did them for A level, all I remember is a kind of essence.

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I remember the bits and bobs from them. Artist still eluding me.

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Stanley Spencer and his paintings at sandham memorial chapel.

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I love it when a name comes back to me. Real Nominal Amnesia these days, posh words for forgetting names.

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I cheated with dr google. 😂

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Actually you have Melissa - you obviously know and often quote song lyrics - many of which contain some of the 'best' poetry of our generation ...

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Agree wholeheartedly. Almost wrote that myself🎵🎶♩

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Oh my goodness, that is true Rimmy! And I'm the "Lyric Queen!" If my husband inadvertently hums a tune, I break into song! I then get an "ear worm" and can't stop singing until he puts a different song in there! There ya go... I LOVE poetry I just didn't realise it! THANKS

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The brains ability to hold onto song lyrics until death is one of life's great joys for me. It's even been shown that people with quite advanced dementia can access song memories. My dog loves my singing, because it usually ends with a biscuit. I am not above bribing her to sing and dance with me.

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I too LOVE that I can remember lyrics from 50+ years ago! ...but cant remember what I had for breakfast! : )

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MIL had Alz+VascD. She had many ‘I’m not doing’ it moments. 2 minutes of familiar music would see her dancing to the bathroom for a wash, completely forgetting she wasn’t going to do this! She’d sing the lyrics right through, but couldn’t remember who I was! Amazing to see, and a technique I used often to avoid arguments.

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Last week I was having one of my waves. It hit me in the library as I was picking up a book for our next meeting. I walked by the CD section and saw a bunch of old CDs of operettas and musicals. One was of Desert Song and New Moon. I popped it into the player in my car on the way home. Mom loved this music and would often sing it. Crying bittersweet tears all the way home. It was just what I needed.

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Ohhhhhh, I love/hate when that happens. Those bittersweet tears, that make you cry, laugh, smile and at the same time break your heart. Good on you for embracing it!

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I loved the Desert Song when i was a kid !!

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Goodness! I go away for a few hours and return to discover that I’ve missed a seminar! Fascinating.

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Your fault! You started the poetry! ;)

Great thread though, I love the tangential nature some of these discussions take. But we’re VERY vaguely still on track re PMR/GCA.....I think????

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Me too Soraya, we are just giving the soul some attention. 🌻

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Take it easy this week. No sheet changing, floor scrubbing or trucking groceries 1.3 miles back home from the market.

When you feel well, use that time to do something fun. What doesn't get done can wait, or can be delivered on request. (One hint - ditch the fittted matress sheet for a flat one. Much easier to handle.)

You'll not get better without giving your body and your mind a chance to adapt and recouperate.

Polish your spoons and gentle that gorilla. In the long run, Madam Project manager, it's far more productive in reaching your goals.

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Good_Grief, Always the loving, caring, but firm voice of reason and balance. Ever reminding me, to take care of ME! I'm like the disobedient, unruly puppy amongst all of you "Big Dawgs." I'm forever, raging against the confines of box, but succeeding only in peeing all over myself, before collapsing in the corner, exhausted. Thank you my friend...

PS ...but the damn sheets need changing TODAY! It's MONDAY!

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And???????????????????????????????

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Ours get changed at the weekend when it's a two-person job with the OH!

Monday was wash day when I was a child, but not now!

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And... (?)

I'm polishing spoons instead?

I'm being a good Puppy?

I give.

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I don't remember if you have been offered Actemra yet. Is that something you would consider if it were offered? Are you a candidate? Has the National Health approved it for GCA in the UK?

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Was that question for me Hindags? Dr Hughes, (who I saw for a 2nd opinion) thought it was too early for me to think about Steroid-Sparing options. He agreed with Dr Jordan's "revised" taper down plan and hopes to see me below 20 mg by summer. I have not looked into the sparing options with any real earnest, but if I continue to struggle with tapering down I will do the research. Kate posted two months ago that it was not... I assume that still stand.

healthunlocked.com/pmrgcauk...

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No - no approval yet. And if it does come it will be for difficult cases - and you will have to prove that...

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Yes the questions were intended for you. I think I read that the sooner the better for start in Actemra for GCA. I would think with the problems you have had to date you could make a good case for being prescribed Actemra.....if it is available through NHS. Might be worth checking it out.

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No worries, if and when the time comes, and I've determine that it would be beneficial for me... you'll hear me yelling, screaming and demanding the Actemra!

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Hi mamici1, Just to get back on topic, it's only been a week since your beautiful grandson visited and you had a few flaring days after that so WELL DONE for achieving this taper to 60mg and still being in good form.

Personally I am really longing for the Spring which brings more magic to this part of Wales. It has been a long and very WET winter. But the snowdrops are EVERYWHERE, and we have had daffodils in flower since Christmas.

I chuckled when I saw Lucille Balls charismatic face, and I look forward to reading your posts. I think you have brought us all together in such an amazing way through your blog and your posts, thank you.

Hugs 🤗 from Chrissie

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Ohhhh, wow, thank you, thank you so much. If my warped sense of dark, depressive humour has brought this already cohesive community closer together, than I am honoured. I am happy you enjoy reading my posts/blogs and thankful for all the support!

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Perhaps you have given people permission to be angry too Melissa after all being brave got a lot of us here in the first place.

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Hmmmm? I like that thought SheffieldJane! If my unbridled, self righteous indignation has subconsciously given people permission to get in touch with their anger, I am pleased... as it's better out than in!

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Unless you happen to be on the receiving end that is.

This thread must be setting some sort of record for its length and number of contributors.

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Sorry.

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For what? I was just thinking about my poor beleaguered husband and my anger.🙅🏻‍♂️

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Mamici1,

Try to be patient (easier said than done) you will improve. I started at 60mg got down to 40mg and had to go back up, I was devastated but it does get better. I am now on 10mg and will go to 9.5mg soon. My membership in this club started in May (I think) of 2016 and although it is difficult it does improve. Just be patient and keep that great sense of humor. You can and will do this.

Enan

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