If you are inclined to read the blog below, please do not be offended by the implied profanity.
Here's my take.: If you are inclined to read the... - PMRGCAuk
Here's my take.
34 Replies
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Wonderful! In a nutshell. Encapsulates the" that wasn't supposed to happen" horror that we feel. Thank you for sharing this mamaici1.
PMRproAmbassador
Love it - OK I'm dense, how do I get to follow it and read the old stuff? I was following blogs that turned into WordPress ones and it left me behind...
PS - in the meantime, I assume your daughter is OK?
in reply to PMRpro
Not dense at all! I "think," if you just scroll down my previous blog posts automatically display... Not sure myself how you follow! Hahahahaha. I'll figure that out. Yes, thank you so very much for asking... My daughter is now 3 years and two months cancer free!!! She miraculously gave birth to a son in January 2017!!! I will see them next week! I'm hoping that puts a smile on my face! Many thanks.
Fantastic!
Right oh - found the bit right at the bottom of the page to go to the previous post! Very pale and I hadn't scrolled quite far enough down! And I've followed - but on previous experience with following blogs the email notifications are not very reliable!
Being bitter and twisted and nosey - how many of the offers of instant care and assistance on the first page actually materialised?
in reply to PMRpro
Hahahaha. I love "twisted and bitter and noisy!" I believe a person's intentions are as important as their actual deeds... I try not to judge. There were some AMAZING acts of love an compassion shown to me... and for that I am forever grateful.
Obviously you have nicer friends than I did - or you are a far more deserving person than me!
in reply to PMRpro
Hahahahahahaha. I seriously doubt that!
When OH had his first brush with the Big C people said "just say/ask..." When I did I was looked as if I was crackers (probably was) and met with evasive "I'll try". And having given up and finally crumpled in tears at a medic colleague's kitchen table was told "But you were coping so well."
You know what I mean?
in reply to PMRpro
Yes, I know what you mean! I think people really do want to hep and provide support, but they are paralysed with the fear and uncertainty of intruding, or over stepping boundaries... You probably gave off an aura of strength and calm. People thought "you had this." As an End of Life Companion... I don't worry about overstepping or boundaries... if my intent is pure, I go with it.
Wish I'd known you then! He had cancer, his mother, who lived with us in a granny flat, decided she didn't want to outlive him and literally turned her nose to the wall and was dead in 10 days. Our daughters were 13 (N) and 10 (F) )and the school announced "whatever was going on at home, N shouldn't be skipping school" while a classmate of F's turned to her in class and "is your dad still dying".
Yes. Well.
in reply to PMRpro
OMG! Seriously?????
Yup. I found out much much later - it was, shall we say, an interesting year!
Have you ever read "Peace, Love and Healing" by Bernie Siegel? The day OH's mother died he started to get better. His brother hated her - to his dying day, but I never found out why. But she was pretty poisonous.
Fantastic. You expressed so well much of what I've been feeling.
Loved this. left reply on the blog!
Great blogging !!
So many of us I am sure share your disappointment at not turning out to be the 'gracefully ageing type' - I somewhere had also envisioned knowing gentle smiles and a mature 'kindness' written all over my face - with JUST the right amount of (mild) 'creasing'. This is NOT what I now see in the mirror ...
The loss of magnanimity - at least the dose of that I intended to have is what also gets me. It's hard to be 'nice' generous and understanding about everyone else's troubles when you feel bloody awful yourself and are trying to pretend you have your old energy and can keep up with all the demands most women continue to have all their lives !!
On top of all those basic indignities we have to spend ages researching GCA/PMR - at risk of being treated or mis-treated by medicos who seem all too often not to have the faintest idea about these conditions generally or your version personally. Then many of us get (condescendingly) ticked off for 'google doctoring' !!?? - but crazy if you aren't as informed as you can be as everyone is SO busy anyway that advocating for yourself and understanding what's happening to you - is the best chance you've got of riding this all out.
On the 'bright' side - most of us should recover in time - 'time' being the operative word - and THAT requires lots of patience - another quality our efforts at some ideal of serene maturity is meant to cultivate (sigh). Choking on that idea - and having now realised I am going to be very much like other members of this forum and have to taper back up after a flare I am asphixyating (after only ONE year) on the 'patience' word - realising I am more like an 'impatient' patient than I ever thought I would be.
But anyway reading great writing like yours which talks about how many of us REALLY feel about all this stuff is a great antidote to all the frustration we often feel - so thanks for that mamaici1 and all good wishes for the smoothest journey possible.
Rimmy
in reply to Rimmy
Manaste Rimmy, Namaste.
mamaici1:
Excellent piece!
In that vein, let me quote Bette Davis:
"Getting old is not for sissies."
in reply to GOOD_GRIEF
LOVE THAT! It sure ain't!!!!
Article is hilarious and right on! Thanks for the levity at 3:00 am waiting for 5 a.m. Pred!
in reply to Sandy1947
Ahhhhhh, the non-sleep, sleep! I know it well! Mine is 2:00 to 5:00 but I'm new at this! Thank you for your kind words.
Worst part for me is the disruption of my vanity Botox shots! Dating at 70 is a bear! I also have no patience and fire potentials at the first mistake! Yesterday a guy called at 12 instead of before to meet (between 12 and 3) so I refused to answer. Prednisone irritability is real!
in reply to Sandy1947
Hahahahahahaha. I was like that before I started the Pred!!!!! ...and, I'm sorry WHAT???? No more botox????? You gotta be fucking kidding me?
Don't you just love Sandy? 🤣
So glad I have a fan across the pond! One of my friends got sick of my
“poor me I have PMR cries” so she ditched me for a while. She’s back and I realized I can only complain to forum friends!
On the train to Boston for holiday parties. Alcohol free for the first time ever! Low sugar, low carb diet...look like a Halocaust survivor at 104 pounds! A relative said that at Thanksgiving.
Nice!
That’s what my Rheumie and one of my doctors (plastic surgeon) said. However, many Drs. say it’s OK. Are they whores for the money? I have been on hold re. surging ahead. The wrinkles are unappealing and the products from Sephora to suck in under eye bags are not consistent. Growing old gracefully has never appealed to me.
Your thoughts.
in reply to Sandy1947
Hmmmmm? I must admit, my vanity is one of my biggest concerns. Have you see the list of Pred side effects! The hair on my head will thin but I'll grow a beard! Not acceptable! I'm only two weeks in (on the steroids front), so it's all quite new to me! ... but the future is looking a bit bleak for sure! : (
My already fine hair has got thinner, a lot comes out in the hairbrush. I have had it cut in a kind of layered cut with highlights and low lights. I don't brush it at all, just fluff it up and sometimes add rose oil to the tips and twist it a bit. My husband loves it and it looks much thicker and is sooo easy. It is also giving it a break. Think When Harry met Sally, without her sweet face alas.
Get creative girls. X
in reply to SheffieldJane
My creativity will be extreme! If my hair thins too much... and won't spike like it does now, l'll just shave it off!
SheffieldJane in reply to
Well you do appear to have the face to carry it off.
Mamaici1 I remember when I was 60 someone at the golf club saying "I hope I look like you when I am 60. Nobody says anything like that anymore!!! At least I am still alive. My husband says "what is the alternative" I at least so far have not had GCA. Found PMR bad enough. Good luck to you! May
Great blog! Glad life has picked up for your daughter - now let's hope life does the same for you
in reply to Mai45
Thank you so much!
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