First, hoping You Lot are having a positive week whoever and wherever you are in this great and supportive health community.
Like some of you, I'm also a silent 'Lurker / Watcher' at times when or if I don't have the time or energy to respond to every Post or thread here, as I would like to. All the same, I see and read almost every Post here. And it's always interesting to hear what's going-on for people here, even if going through the Difficult Bits. I can relate...
For me: it's been an exciting (if physically demanding) week. I'm finally installed in the new South Wing of Benjamin Mansions after several days of lifting, shifting and dismantling one Home to take residence in another. Moving home can be a stressful experience even at the best of times. But I'm sure many of You Lot know this already...
So: after 5 days of strenuous physical work including moving mountains of Ikea furniture, my Art Collection, 237 Faux Leather storage containers (a relic from my Charity Shop expeditions whilst under the influence of the Preds), 17 volumes of old copies of the Beano from 1976, 23 Armani suits (ha - as if!), crystal chandeliers and all the stuff of My Life, I'm 'In' at the new wing. Sorting out the remainder will probably take 5 months - or perhaps 5 years? But Hey Ho, the panoramic views of the UK's famous WSM Riviera and the Atlantic are worth it (Pics to follow)!
In between: a visit and light-hearted talk to my local Bristol PMR GCA Support and Meet-up group about my PMR Journey, with a few giggles and some 'Worms of Wisdy' about Coping on the often Life Changing PMR / GCA experience, as my comedy hero Professor Stanley Unwin would put it. Well, at least they didn't chuck me out of the meeting for cracking a few schoolboy gags - always a good sign
But seriously (unusual for me, I know), in between the home-moving Action I had another opportunity to reflect on the process of Change, and all that goes with it. Yep, Change can be psychologically challenging - even at the best of times and in the most positive of circumstances.
My philosophical conclusion..? Change in Life can and probably will happen, whether planned, invited and anticipated or not. Change is a part of Life, for better or worse. For many of us Humans, to cope with Change can be demanding - especially with challenging illnesses like PMR and GCA. But how we adapt to, and embrace that Change might just be the Key to emotionally surviving on Life's Journey? That's my best 'take' on this often complicated psychological process.
In the meantime, 'Pred Double Agent Benjski' is cautiously hovering somewhere between Zero and 2 mgpd Preds depending on energy levels and demands day-by-day. Yes, It's a constant process of adjustment and 'titration' (?) in a daily context. But maybe I'm getting the hang-of-things after 3 years of PMR. You tell me...?
As for Tedski..? No idea. He's gone AWOL with the Limo whilst I've been busy with my domestics. I just hope he'll return with it soon so that I don't have to catch a bus to give my next talk to the Bath PMRGCA support group on Monday. Wish me luck...?
As always, try to keep smiling on the PMR / GCA Journey. Smiles and laughter won't cure PMR and / or GCA, or Life's challenges in general. But some Fun might just help to lighten the load - and also distract us from our fears around coping through the 'Tough Bits'?
MB
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markbenjamin57
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Reporting in lurking at 13 mg and watching from my outdoor deck in Virginia USA 88° fighting the mosquitoes and Sky High pollen levels. I will pay for this tonight! It has been a difficult three weeks. I have had 3 dose changes this week from my Endocrinologist as my thyroid is in orbit. At least she took the time to sit down and reassess all the calls and notes and lab levels from my PCP. Whereas, my rRheumatologist has not bothered to reply.
I hope you can take the weekend to relax and enjoy your new home, boxes and all. Sunday is Mother's Day here. I will travel North to have lunch with family and my mom is she is not well enough to go out.
Ohhh.. mosquitoes. We have them in the UK too, even at 12 degrees C! Glad to know that your Endo is on your case, even if your Rheumy isn't. All I can say is 'Keep Faith'..
Thanks for your good wishes, hopes for you for a peaceful weekend with your family. x
Glad your move was successful. Sounds like a little (actually, a lot) of R&R is in order for the next couple of days. Tedski can mop up when he gets back. 🐻
Operative words: “how we adapt to, and embrace that Change“. You are so wise. For me that is the key. I was in total denial and baffled by a science (Rhumatology) I wasn’t familiar with and a mystery disease within an inigima identified only by Initials! I couldn’t accept my illness and thought initials were there because no one knew any more than I did. This Forum has clarified a disease and rendered it more understandable and concrete. I needed that before I could go forward. I have a Plan. A Goal. And objectives to reach my goal. Thank you.
Hi Mark,glad the move went well .I bet you wil be sitting on your balcony eating your porridge enjoying the sea view and glorious sunshine this morning.I'm not envious at all......!! "Perhaps take it easy for a couple of days now,don't overdo things"(mum voice).
Enjoy your new home and thanks for keeping us smiling along this crazy journey of Pmr.
Love your posts, always bring a smile, chuckle or laugh out loud moment to my day. Is your book on the High Street, ie Waterstones (other book sellers available) and what is the title please.
Many thanks Sue :-). It's not available through bookshops for various reasons, but if you go to the main PMRGCAuk website / 'books about...' section you'll find more details and a link to my website where you can order and pay via Paypal or by post. The book is called 'Write Me Funny - Ramblings on The Lighter Side of Polymyalgia Rheumatica and Giant cell Arteritis'. Any probs, let me know
I've only got G.C.A.-You do sound as though you've been very busy. I so envy you your strength to actually move things about.
I must be careful moving things about because of the Osteoporosis Mk 1 & 2, and I'm in the throws of my second flare. I got down to 6.5 mg and then because Acupuncture was making my back pain improve so much I started to reduce the Paracetamol I've been on since 2016 and this revealed severe aches above my left eye, in the left eye socket, left sinuses and along the left top gum, and (sorry about this bit) my left nostril is exuding a horrible green goo when I blow my nose. I asked one of my GP's (there are at least 12 at the surgery plus 3 Nurse Practitioners) for authority to increase to 7.5 mg having had C.R.P. tested the Friday before upping Prednisolone hoping that would take pain away. Bit of stress added to the mix because I missed my second Denosumab injection on 01/05/18 because the Rheumy went to Liverpool on a week's teaching and didn't leave the prescription enabling the nurses to get it out of the Pharmacy.
I had to wait until 09/05/18 to have it. Pain over and around eye has continued getting worse each day. I needed to see GP about something else, and couldn't see my usual one who is female and I couldn't discuss with her my little problem because a physical examination was involved, although she has lovely cool hands and my testosterone effects keeps me hot all the time, so quick visit with Dr Derek Murphy and my fears resolved its just hidden away. Whilst in his office I explained about the flare and the pain and I was on 7.5 mg and he said the D.base says you were authorized to 8.5 mg and increase the Paracetamol up to 6 capsules. My Rheumy won't like that at all.
Saw Gastrolenterologist on Wednesday and he wants to do an Endoscopy to find out if there is anything in my Oesophagus causing the 10-months long high L.F.T. readings. I asked if I could go to sleep for it because I have a curved Oesophagus and an always under compression rib cage with sites of seven rib fractures, and osteoporosis. You can have a sedative to help you relax, he said. So you see Mark we do have a caring N.H.S.!!!
Please keep your amusing antidotes coming and take it easy whilst getting over the stress and strains of your moving.
Just a quick-ish reply as I'm still in the throws of 're-mantling' my new Pad after dismantling the old one :-D. Ohh.. how much 'stuff' we accumulate on Life's Journey - it's only when we have to move home that reality sets in!
Anyway, sorry to hear about your continuing niggles. I really admire you for keeping a steady head through it all - and especially for not giving in, or up. Seriously, the health challenges you bravely deal with from day to day make my PMR Journey seem like a gentle stroll in the park.
I agree with you about the NHS: I'm certain that the vast majority of GPs, Hospital Doctors, Consultants and others are diligent and committed to caring for, and helping to cure and / or make Life easier for others. It's just unfortunate that the Bad News stories seem to get more air-time than the Good News stories. And, of course, so many of 'them' are now operating in a more challenging (e.g. Performance Managed / Regulated / potentially Litigious) professional environment than in the past.
I've also learned along the way in my professional life that, in many types of 'Service Provider / Client' relationship (in various contexts), 'Consumers / Clients' are often more ready to report unsatisfactory experiences than to acknowledge and reward Positive ones. In my opinion. the modern Social 'Meedja' makes it even more tempting for unhappy / stressed people to have a Rant and let-off steam - maybe because it's not a real-time Face to Face conversation where the perceived 'enemy' might just put them straight with some hard facts and evidence? Ohh, what's happening in our 21st century society? Or, am I losing the Plot (always a possibility with PMR and the Preds)?
Ok, so I'll get-off the soap box now because I know this is a contentious topic!
Yep, on with the moving-in show here. Give me about 6 months to restore some equilibrium and sense of order...
Dear Mark,l wish you and Tedski much happiness in your new home,l envy your lovely view and look forward to seeing some pictures.l hope that Tedski realises that you live in a new home now and does not return to your old one.
Many thanks Grants Yep, I'll post a picture of the new view soon. As for Tedski? Well, gone AWOL again for the second time this week - and with the Limo I blame Olga
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I blame Olga 
