How has being a member of HEALTH UNLOCKED PMRGCAuk COMMUNITY supported you?

[Marilyn1959]

I am sitting here this evening watching 'I'm a celebrity get me out here', marvelling at how quickly a group of strangers become reliant on one another and unite when placed in unfamiliar, challenging circumstances. Supporting each other through the peaks and troughs, congratulating, commiserating, working as a team but responsive to the individual. Ring any bells for you?

It certainly did for me as my thoughts immediately then turned to THIS community, a group of strangers, thrust together not by choice but due to diagnosis of a shared disease in a jungle full of nasty surprises, where sometimes you can't see the wood for the trees and snakes can bite you on the bum when you least expect them to.

I then thought of the considerable and far reaching gains I have had from belonging to this community. Here's my list, in no particular order, of positive outcomes your support has enabled for me.

a) Growing knowledge and confidence to question, challenge and contribute to the decision making about my treatment regimes

b) The tools to track my progress against the experience of others and question why when I am going off track, leading me to find a solution to get back on track.

c) The ability to analyse, reflect and confidence to adjust regimes to accommodate my changing needs

d) The immediacy of reassurance when panic sets in with no GP or Rheumy appointment in sight

e) Positivity and Laughter

f) A sense of belonging - Sharing experiences with like minded people who speak and understand my language and can therefore empathise.

e) By contributing to posts feel that I am able to give something back, hopefully adding value to the 'whole'

I wonder what the key benefits have been for you since joining this community?

[SheffieldJane]

I would echo all that you've said. It is a relief to me to concentrate on somebody else's struggle, it gives me a break from myself.

Talking of laughter, Mark has been very quiet, scribbling his gems into his book I guess.

[Soraya_PMR]

Good post Marilyn 👍🏼

All of the above! But the premier benefit was ‘discussing’ (ok, I admit, it verged on arguing!) with my GP re diagnosis. ‘Normal’ bloods versus PMR. I had already gleaned the FACTS from forums. Facts which my rheumie later confirmed. Not seen my GP since. Couldn’t take any more ‘I don’t believe you have PMR’, when he was incapable of seeing that steroid reduction was too much too fast. Thus far I have always found an answer to my queries/questions/wobbles on here. And sympathy/empathy abound here, but not from my GP! Neither does any explanation. Sometimes that’s all we need, a bit of time, someone to listen, a laugh along the way....

P.S. if you tell me the forum diet is changing to kangaroo b@lls and cockroaches, I’m off!!!! 🤔🤣

[Marilyn1959 in reply to Soraya_PMR]

So who is monitoring your well being if you are not seeing GP Soyara? Just concerned for you.

kangaroo b@lls and cockroaches could constitute low carbs methinks! (Cracked me up thank you!) X

[Soraya_PMR in reply to Marilyn1959]

Thanks for your concern Marilyn. Saw my rheumie end of September, and will see again December 12th. She also thought I’d been ‘abandoned’. I have a direct line to her rheumie nurse, but haven’t needed that (yet). My BP is being monitored by my pharmacy as my surgery don’t seem to want to do it!!! Blood tests this week ready for consultant on the 12th. And as my ESR and CRP are not raised, I just have to listen to my body. Unfortunately I’m a bit deaf sometimes in that respect and have weathered a flare at 10mg, which couldn’t be caught at 12.5, but was at 15mg. Now down again to 12, where I’m staying, after advice from..... you guessed it, this forum!! 😎

And b@lls and roaches can be as low carb as you like, they’re not entering my body. My body is a temple you know!!! 😂🤣😂🤣😂🤣

[Marilyn1959 in reply to Soraya_PMR]

That's reassuring Soraya. Does your Rheumy communicate with your GP? GP can't ignore 'the expert' surely?

[Soraya_PMR in reply to Marilyn1959]

Well I was cc’d into her letter to him, so yes. But as he probably sees around 400 patients a week, I don’t suppose he’ll lose any sleep over it.

[Baileyw06]

I got the diagnosis of PMR inApril and this site has helped me so much!!

I can communicate with my Doctor with the knowledge I have obtained from the “aunties “ ,which has really helped me.

I am so happy I have all of you for support and information.We have nothing in the States.I was very lucky my Doctor diagnosed me Quickly.

Thank you😊

[Insight329]

Marilyn1959, you took the words right out of my mouth; however, you said them so very eloquently. The Aunties have fostered a really supportive culture in this forum/family of sorts. So many blessings to be found here but I think I’m most thankful for is the knowledge that is shared and explained in such a way that I understand the reasoning behind it. Knowledge helps alleviate the fear. Thank you for this post! It was a balm to a hard day!

[Brixhamhampster]

Marilyn1959 what a nice take on what I thought was a pretty awful programme but you are right. I agree with all your comments about how this forum has been a lifesaver. Although I always give my doctor credit for diagnosing my PMR very quickly the support from there on has been zero. All my help has been from this forum. I do now book myself regular blood tests and have “discovered” that if I ask the receptionist nicely she will press a button and I can get a full print out of my results. Can’t understand a lot of it but I can pick out the information I want such as CRP. Very nice post thank you.

[JulieR2]

I have loved the non judgmental advice! Never being told you told me so although you all did.... thanks

[Hidden]

Agree with all the above. I limit my reality tv but one of funniest things I ever saw was Christopher biggins cuddling a rat in his sleep.

Almost as funny as guy goma Who went to bbc for job interview behind scenes and ended up on screen commenting on law story. They are both on YouTube and i watch when I need a good laugh.

Thanks to everyone for asking questions I didn't know I needed answers to.

[Charlie1boy]

Excellent post Marilyn, I agree completely with all you say. This forum has helped me manage my PMR for three years almost entirely on my own.

My GP Practice has been very good, and diagnosed the PMR instantly, but, with the advice and help, primarily from PMRpro, Dorset lady and Celtic, I have only had to visit my GP once more about the PMR, and that was to get a blood test.

I wonder how much money these good people save our NHS?!

Paddy

[Marilyn1959 in reply to Charlie1boy]

Once in three years Paddy. Blimey! Wish I could be that confident in trusting my own decisions and managing my own illness.

[Slowdown]

There's a lot of fragmentation and division going on in the world of 'the news from elsewhere' and yet I believe 'real' people are kind, thoughtful, probably feeling cut off from what they constantly see and hear and powerless to do anything about the chaos. But here we can sit around a virtual kitchen table with a cuppa and, beginning with our PMR experiences as common ground, we toast each others' successes, commiserate when times are hard , offer our own experiences, and sometimes stray down strange paths of wacky humour .. because we feel safe we reveal who we are. We feel connected.

Thanks for this post, Marilyn, it made me think!

[Sandy1947]

I echo your sentiments. I don’t feel so alone or frightened when posing my difficulties to forum friends, Dealing with the unpredictability of PMR for a control freak has been a challenge I manage with lots of help from fellow sufferers.

[Jackoh]

I think you have summarised it all so well Marilyn. I never thought that a forum would become part of my daily reading!! For me knowledge is power and unfortunately so many GPs know so little about PMR and GCA it has been so good to refer to this forum whose opinions I trust. I also feel there is a high level of understanding and support which I believe we all need on this roller coaster of conditions and to try and eliminate the isolation that many of us can feel from time to time. Again today I was told how well I look!!! I just smile and say thank you!!

Jackie x

[altywhite]

Good post Marilyn. I never ever thought I would follow a forum such as this but the more I casually popped on to read the more I felt it could give me support and maybe eventually I would be able to support others. The main thing for me, initially, was to help me understand, and come to terms with, the fact that this disease (GCA for me) has it's own agenda and will not be rushed. The rheumatologist had me thinking that I should be getting off the pred much more quickly than I was with no explanation as to what the effects would be. I am much more at ease with it all now and though it is taking me a long time to reduce I am not panicking. 8mg and counting!!

[nuigini]

You pretty much covered it Marilyn. The main thing the forum has allowed me to do is manage my own treatment. I live in a remote area with only locum doctors and no specialists. My initial diagnosis almost 4 years ago was by an excellent Nurse Practitioner (NP). He left the clinic about a year and a half later, however, by the time he left I was on pretty solid ground for self monitoring. Before he left I was telling him things that I had learned on this and other forums through discussions and/or shared research. He said I knew more than he did. 😁

For the first year I had monthly blood work done then it switched to quarterly. I was given a glucose monitor to check blood sugar from time to time and also told to monitor my BP on a regular basis.

I did see a specialist within the first month of getting the diagnosis, but all he was interested in was getting off prednisone ASAP. The Nurse Practitioner and I decided no further visits were warranted. He did however notice a heart mummer and the NP had me in for a echo cardiogram within a month. All was fine for my age.

For the last 2 years I've only visited the clinic and see whatever locum GP is available to renew prescriptions and discuss blood lab results. It can be frustrating as every GP I see knows very little about PMR and I get very tired explaining and re-explaining my understandings and beliefs.

So, the forums and all they offer are key to my emotional and physical survival. Thanks so much to all who share and advise! 😍