Those that can't do... RANT!
rantingsofamadwomanblog.com...
Yes, good news, unlike most of my rubbish rants, this one is about PMR & GCA.... so if you're interested... READ ON!
Warning; This rant does contain some colourful language. If you're easily offended by expletives, perhaps you want to think twice before clicking on the link above.
You sure had one hell of a job to get diagnosed, didn’t you? When it’s happening you just go along with it, ‘cos you have to, but looking back it must seem unreal, not least unnecessary. Thank heavens for tenaciousness (did I just made a word up?)
Long live the tenacious.
Thanks PL, We are warriors aren't we?
“People can be at their most vulnerable, but still tenacious at the same time.” ~ Toni Bernhard
Oh Melissa you blow me away with your "rants". What a hell of a story, and how hard it was to get your diagnosis. You made me feel as though I was on the journey with you. Mine was not dissimilar to yours, but thankfully I don't have PMR just GCA. Thanks for sharing your experience with us. Love you babes xx
Ohhh thank you, how kind. Love you right back! xxx
That was one of the most well written descriptions of the experience of living with this condition , and the things we learn about ourselves and the new relationships we have to create with others I have read.
I am so happy that you have a husband who understands , that you know how strong you are and I only wish that everyone on the site , or with other forms of AI and chronic illness read your post.
It is such a positive affirmation of how you can cope and live with these "invisible" illnesses.
Thank you so much and I am glad you have embraced your creative inner writer.
Wow, many thanks BE. I'm happy it resonated with you. I appreciate your support.
Did you ever go back to work?
No, SK, sadly I did not... I also volunteered at the local hospice, as an end of life companion and on the chaplaincy team and I have not been able to do that either. I miss that the most, but it's been one thing after another, I'm afraid. 😕
I understand I left work too due to this PMR/GCA malarkey and miss the people very much ... oh and the salary !!
Can’t help but want to take a bat to the red coated consultant. We have learned patience I think . Xx
Yes, Chrob, me too!!!! Wanker! I always regret not getting word to the Junior Doctor that she was RIGHT!
Out of interest - did you ever see the Red Devil again? I would have filed a complaint...
No, I did not. I was wondering if they could pull the records and get his name... more importantly get the name of the Junior Doc's, so I can tell her she was RIGHT!
He certainly needs to know he was wrong. Comprehensively wrong. They should be able to identify him if you put in a formal complaint - you could say you were too ill at the time but now it is very clear it WAS GCA you feel it is important blah blah blah
Ooooooo, I may be in JUST the mood to write this letter!!!!! Cheers!
I found this very moving. After reading peoples stories on this forum I thought I was 'hardened' to a level of mostly practicality. So what do I know?
I share so much with you: Difficulty getting diagnosed, having the double GCA/PMR, memories of the head pain, the love and support of a wonderful husband and a daughter who .. (too much to say).
I know that I agree with you on being lucky with this, as you say so many are worse off.
I only found one thing I wasn't sure about.. any frailty that is present, certainly not on show.
So stay strong with the help of this forum, who glide me over the sticky times.
With love
Ooooo, thanks G-b. I am happy to hear it touched you! What a compliment. Thank you. May you never be "hardened," to to your own or other people's life stories....
You stay strong (but not hardened) too! ❤️
Sometimes is sure is hard to see any positives from this, so thank you so much for so beautifully writing about the gifts you’ve found from this very hard year!
To better days!🍷🍷
Ahhhh, you are so welcome M, it is always y pleasure to write to this audience. You are all so appreciate and my truth seems to resonate with so many... it does make my heart smile!
To better days indeed!🍷🍷
Thanks Melissa, good to look back occasionally and see how far we have come and see the ups the downs and the family and friends who have unquestioningly (well most of the time) helped and supported us along the way. Love your rants. All the best. Dot.
Thank you Dot. Appreciate you reading my rants.
Thanks for sharing that wonderful recounting of the beginning of your journey Melissa. Indeed you are a gifted storyteller, and your prose always resonate with me in ways that "non-PMR/GCA" communications do. Look at what you have endured, survived and managed while keeping your closest relationships in tact (no easy feat). They are fortunate to have you in their lives, support is a two-way street. Think of what you are teaching your daughters about resilience, strength and self-awareness.
My PMR anniversary is coming up next month, and when I take stock, I'm hoping to reflect and celebrate how this condition has contributed to the strong, patient woman I've become. So pleased to have connected with you through this wonderful forum.
Leslie
Ahhh, thank you for reading Leslie! I am again honoured that my rants resonate with you and with others... how gratifying to know that my truth parallels with others... makes me feel I'm not alone.
I'd say Happy Anniversary, but there's not much happiness surrounding it, I'm afraid. But good job you (and everyone else!) for turning what is a series of unfortunate events, into a powerful, positive learning experience!
👏🏻 for all of us!
Thank you Mamici,that was a wonderful blog,thank goodness they ‘got it ‘ in the end ,rather worrying though as it could have been left too long and your sight could have been affected .l cannot add to the previous posts,they have all covered the amazing strength and resilience you have shown throughout your journey with PMR/GCA,which has inspired us all.Best wishes,Patriciaxx.
You are most welcome Patricia! Thanks for reading!!! Best wishes back at ya! xx
.... and you've lived to tell the tale.... Much similarity to my journey, and others, with the migraine path some doctors want to go down initially - I recall telling a Consultant 'I know what migraines feel like and this is not one of them'. I was lucky we got a new GP at our surgery and he knew about GCA - we had the fast track system and I was diagnosed within 24 hours because I had lost sight in one eye at that point and thanks be to god my sight miraculously came back and the rest is history as they say - 4 1/2 years on....PMR tagging on to the shirt tails among the rest - the list goes on and on....
If you don't mind me saying you've done really well in the last 12 months, even though it doesn't feel like it - you're strong and that helps a lot but you were so lucky - having that untreated headache for so long.....it could have been a totally different story - the 'Red Devil' has a lot to answer for - but we don't look back do we it's onwards and upwards I think we say. Keep smiling (and entertaining us with your writing).
How's the knee today?
Terri xx
*smiling* as I picture you telling the Consultant, "... I know what migraines feel like and this is not one of them." Hahahahahaha!
Thanks for reading T and for the kind words.. I have done okay the past 12 months huh? I never thought I'd make it, but thanks to this amazing, loving, giving, community, I did. xx
PS - The knee is GREAT! Thank you! I feel like I could do a game of hopscotch... but better not! 😉
Nooo you'd better not do hopscotch - there's only so much sympathy we give to friends!
But 'snap' to the UTI - I've got another to go with my GCA flare - first one proper (flare) since diagnosis - woke me up this morning and feeling pretty crook I have to say. I sat in the surgery for 3/4 hour to be told I'd to contact Rheumie, which I'd done prior to leaving the house, and secretary said as they were all in clinic to keep the doctors appt and get back if need be. So need be it was and waiting for instruction to either see Prof or follow his instructions ....I haven't changed my dose for months so know it's a flare. Anyway what a lovely sunny day it is.....
PS: My usual GP wasn't in today so saw the fairly newly qualified son of the retiring partner who said GCA was a specialist area, little known about, and he was not happy to titrate the steroids. 'Ring your rheumie nurse' he said, I told him there is no rheumie nurse on call as there used to be - all go through Prof's secretary and said I'd already spoken to her prior to seeing him today and that it was expected that my GP would manage patients in between their rheumie consultations. He just repeated himself saying he wasn't happy to titrate the steroids. I then thought it appropriate to tell him that I'd brought a laminated poster, given out at the last PMRGCA Meet, 'advertising' GCA/PMR and who to contact if patients had any queries about this unknow illness, but couldn't see it on the notice board. (Reception told me they had more important things to do and had no-one had time to prioritise the pile of notices they were constantly given. 'Really' I replied. She saw the look and said she would mention it.) Thinking it would have been a good time to raise the profile of this unknown illness that needed specialist care - thus saving the doctor's precious time - I asked him why it hadn't been put up. He said they couldn't put everything up on the noticeboard unless it was deemed necessary!!! ALSO he wouldn't dip stick my urine sample - said it was now done in batches by the practice nurse. So I left the surgery only to get a phone call 5 mins later saying 'You've got a UTI' collect 'script' - grrrrr!! You can see how the practice is to be run when he takes over.
I will be interested to hear what my usual GP thinks about that approach. I said I understand it's not a common illness but that I was eternally thankful to Dr ......who knew about GCA and saved my sight by fast tracking me - as I'd lost my vision. He didn't say anything.
Needless to say I shall be passing comment when I next see my rheumie, who is passionate that awareness is continually raised in GP practice. The saying you can lead a horse to water........comes to mind!
Ohhhhhhhh Telian, I am just reading this one... OMG! You are having a TIME aren't you??? If there is one thing that makes my blood boil it's incompetence!
Dear Melissa
A 'wonderful' accounting of an experience we all share many aspects of and something for 'newbies' to read which may explain a whole lot !! Like others here have said you have managed to glean from all of this invaluable things which have made it more a meaningful than disastrous 'journey' - and having a partner who loves you 'unconditionally' through all of it is an irreplaceable 'thing'.
Fortunately for me I did not have those awful A&E experiences - which sounded so harrowing - let alone 'dangerous' - and these are really indicative to me of how even a person such as yourself - very familiar with hospital 'mechanics' can be completely floored by them ...
We have all benefited so much from your presence here - your creative capacities are quite unique and I don't think this forum will ever be the 'same' again (LOL) !!
So well done Melissa - and thanks for being 'here' and helping us all stay kind of 'madly sane' !
(PS. no sign yet of the masks as yer - but mail to OZ from the UK is often 'slow' so not to worry)
Love Us
XXXX
...as usual Rimmy, your words have made me quite emotional. Thank you. Thank you for your ongoing support, encouragement and validation. I cant tell you how much it means to me.
I love the phrase 'madly sane!' I may have to plagiarise it for a future rant title!!!!! I'll split any royalties I get with you! 😉
Oh Melissa i just wrote a response to your UTI drama and think I lost it (due to only one glass of wine - I hardy EVER do it) just to say WTF !!! ?? i can't believe it you just aren't being well treated by the universe - and it is NOT bloody fair !!! - Thinking of you and you can keep any 'royalties' as you deserve them MUCH more than me !!
Lots of Love
XXXX
I couldn’t make this shit up! Xxx
Melissa,
Well said! GCA/PMR does change us in many ways. I believe it has made me more adaptable to change, thankful for a many things I had never thought of before, more sympathetic to those in pain, and maybe even a little stronger. Keep on writing, you have a gift.
Enan
Thank you Enan, YES! I too am much more adaptable to change... maybe that's the lesson I needed to learn? ...and thank you for the lovely compliment!
That was really uplifting Melissa . Thanks for your dazzling blogs, always. My story pales in comparison. I'd been hobbling about with groin and shoulder pain for sometime but was due to get on a flight to Australia, so I did, like you do. Half way there 10s of thousands of feet up on a Korean Air flight ( thank you Korean flight crew, you were wonderful girls) I started to throw up. God the embarrassment, the unpopularity, the fear of being turned back again. The lovely cabin crew calmly and kindly, cleaned me up and best of all provided coffee beans to neutralise the smell. I had to wait until I was back in the UK for a diagnosis 4 weeks later. By that time I could hardly walk or climb into a bath. GP spotted it pretty quickly and here I am.
I feel chastened and changed by this experience. I have had much more time to think. I am gentler and kinder but it some ways more selfish. I treasure the great people in this community who keep me going more than anything else. Of whom you are one my old mucker! Xxxxx
Ahhhh SJ, my treasured friend. Thank you. And your story DOES NOT PALE in comparison! OMG! You were on a plane!!!! To Australia, no less. What a nightmare.
I didn't know you before PMR, but cannot imagine you be anything but gentle and kind.
xxx
I loved reading your story! I’m always curious how people come down with GCA/PMR. Eyebrows raised at that part where the red suit guy sent you home on paracetamol for your “migraine”. My migraines laugh at that. Thanks for posting it. How’s your knee feeling? I’m getting my ganglion cyst drained from my ankle tomorrow, and I can’t wait to get that beast off my perineal nerve! Got to love a good draining, lol.
Thank you Ciar. I like your comment, "My migraines laugh at that." My knee is GREAT, thank you! Good luck with draining! Yeah, ya cant beat a good aspiration! Oh the small joys of life, huh?
Mamici1, what a beautiful story to wake up to. Your rants are inspirational to all of us. You are a lovely strong woman, I really really wish you well, and please please continue the rants xx
Ohhh, thanks Jeannie29. Thank you so very much for the kind words and for your continued support. It means a lot to me. xxx
10.....10....10....10....Done it again M.
KEEP ROCKING!
Cheers PD! Your rating of my ranting means a lot!!!!! xxxx
Thank you for sharing your story Melissa.What a journey! I sometimes wonder if we go through this stuff to help others on their journey.The many experiences we have with PMR and GCA and advice from the 'aunties and uncle's' we are so fortunate to be able to share.We should count our blessings😊. Have you thought of writing a book? x
Thanks Sandradsn, Hmmm? maybe you're right... maybe we're supposed to share our journeys, not to rid ourselves of the weight of them... but to lighten someone else's load? Wow! You're good! Thank you!!!!
Thank you, I may someday incorporate all my rants into a "book." ...but not sure who'd be interested out side of a PMR/GCA community, but we'll see.
Brilliant as usual. My 2 year anniversary with GCA/PMR is 16 November. Still on 21mg Pred. Diagnosed in hospital after 3 weeks with CPR of 254.
Cheers riake! Ummm, Happy Anniversary. (?) Nope, it just doesn't sound right. I hope the day is more uneventful than it was two years ago!
Hi Mamic I have such a similar story it is uncanny maybe it is a South Coast thing i live just a few miles from you. The worse aspect for me was waiting in A and E for 19hours and not being listened to. I am 18mths in and have more or less with the help of this forum and the Internet managed these conditions on my own.
I now have such much more sympathy with my fellow man but unlike you have not found my creative side!
Good luck love your spirit
I so enjoy reading your posts, please keep them coming. They help me make sense of this blinking illness. Xxx😊😊😊
Thanks York54! I'm happy to hear my rants help you to make sense of all this! It's always good to know someone else 'knows' what you're going through. Thank you.
And here's me thinking an 18 day headache was bad. Pleased to see you coming out the other side. Just take it slowly!
You too allykat, you too. And hey, going 18 days with that headache, is award winning! God job you!
What a lot of unnecessary angst,pain and anguish!!!
Hope that one day we will be free of this b.....y Illness!
🤕🤕
From your mouth to God's ears Sue. xxx
Anniversaries!!
I am disappointed at reaching my PMR anniversaries now, after being told it would burn out in 2 years!! We know what tosh that is!
I was diagnosed by a locum GP, after being helped into surgery when I couldn’t walk....came on progressively over 2 weeks on holiday in France. He ordered all sorts of blood tests, which I looked up “What’s that for?”. And 6 days later was relieved to find PMR diagnosis, which I had read about on line ( even found PMRGCAuK ) and not MS, which 2 of my uni friends have.....at least it does not last forever.
Three and half years on and only needing 2mg per day of Pred to keep PMR symptoms controlled, I hope I do not reach a 4th anniversary.
Cheers....have a small glass of red.
🌝Valerie
Yeah, I'd be disappointed too... My expectations were set thank goodness early one by someone on this site... 3-5 years. I cried when I read it, but it was good to know the truth. so were you actually diagnose din France? Good job you.. 3 1/2 years and on 2mg!!!! Keep up the fight, you'll get there! xxx 🍷
Magnificent writing . disgusting pig of a consultant. You have brilliantly described the helpless feeling that swamps us inthe ER and the stupidity of some medics. Thank you. Please keep writing. You inspire and comfort us darling Melissa xxxx
Thank YOU my lovely... for your kind words and support. xxxx
Demons and Self Doubt
GCA DIAGNOSED ONE YEAR AGO AND STRUGGLING...
One year on
Tocilizumab after one year
