Heaven knows I have been all over this forum, through good times and bad, offering comfort and support. This is also where we can all gather and gain knowledge and support from those who came before us. People here GET these diseases; even though you look fine. You gain knowledge to be a better advocate for yourself with your doctors. PMRGCAuk has kept me sane, I kid you not. This started when I suddenly lost sight in my left eye after months of misdiagnosis in 2019, and now, while I fight to keep my right eye while feeling 'otherworldly' on 60 mg per day. So much for 'quality of life' now, but I can still see, though I did lose some right-eye vision.
As a GCA-er, I was losing the battle with my emotions, though usually positive. At first, I didn't write a post because I felt I would be complaining. I was so Wrong~! I was surrounded by love, advice, and support when I wrote. The friends on the forum helped me identify my most troublesome feelings: fear and lack of control. This is a safe place filled with people who share your experience. My OH has dementia; he sees I'm different, and I know it scares him
My deep need and dependence on the forum started me thinking. I wondered how many people were members so we could be sure it was always here for all of us. I became a member from the States in August 2019 when I felt lost and in the dark. The cost is 15 pounds per year, keeping the charity and the forum working with and for us. It easily took my Credit Card and converted it to USD. It was and continues to be life-changing for me.
If you need help, you can contact fran@pmrgca.org.uk; she's terrific.
The added pluses are that you will receive a PMRGCAuk Newsletter seasonally, emails to listen to various lectures and meetings, and invitations to the Annual Members Meeting with terrific speakers. Though I'm in Indiana, I am part of a Zoom meeting in England that meets monthly. What a lift that is!! I'm sure many of you could connect to local meetings in England. I'd love to be there with you in person; Zoom does nicely.
I'm off to the rheumatologist tomorrow morning, half hoping for taper and half scared. I got online before bed to grab all the support that was there for me, and that is what started me thinking about how vital membership is. I'm sure many of you are, and if you aren't, you are missing many benefits. I hope you don't mind my reaching out like this, but I cannot imagine how different my journey would have been and how alone I would feel now.🫂💞💞
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Grammy80
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Thanks for this timely reminder, and should anyone wishes to join the the monthly zoom meeting see this -and although it’s based in UK, anyone can join,..so long as times fit for you…
I hope your appointment goes well and yes, of course I am a member. I hope, as you do that those that use this fantastic forum are also members as it is such a good charity.
Of course you are!!.....I wondered when so much interest was expressed after the Annual Meeting....if everyone knew they could join. You have helped me so much!💞
I'm so glad, you were so interested in the speakers and the Annual Meeting!! I know you'll like the Newswire articles also. There are sometimes other speakers too, montebello.💞
Good luck dear Grammy today.Regarding the £15,even though it is going up I believe,it it worth much,much,more.I have sent separate small donations and Xmas will be a time to send a larger one,it is the season of giving right???Without this forum I hateto think what would have happened to me.SO much help from DL and PMR pro and others,such kindness and a good sprinkle of humour to help ease the load.Like you dear Grammy,OH being very unwell,sometimes makes me feel overwhelmed but just got to realise that there are LOTS of other people worse off than me,count my blessings( if I can find them,must have put them away somewhere!😱) Am praying for good results for you today.Love and kind thoughts.xx🌹🐈❤️😜
It is true; there is always someone worse off. I guess with the highg meds; I was struggling and unhappy with my lot and having a hard time putting a positive spin on it. When I poured my heart out on the forum...the wisdom and kindness I was shown gave me an understanding of what was swirling around in my mind, an opportunity to yank up my bootstraps, tips, and permission to relax and stop fighting. I often think of the two daughters who came on the forum because their Mom had completely lost her sight...boom.
I just started sending a small monthly donation through my credit card as well. Being raised a frugal Yankee....I know how pennies add up. It sure is a great charity and forum, available 24/7~!💞
Thanks for this Grammy. Please be aware that you form a very important part of the warm, supportive and loving culture on the Forum. ( I am a member too). 💖
That's so kind.,..OH, Jane!! There was no doubt you were a tenured member in good standing!! You were one of the first who offered this Yankee a cuppa!!!💞💞
There is always good information and good fun....it is a great way to be able to 'chat' !! DorsetLady put up a link for online support right under my post~! Good Luck!!! 💞
I will definitely donate, Grammy. I was not aware we could. As you wrote, this forum is invaluable as it helps us to advocate for ourselves and provides needed support and understanding (even though we look ok!). I understand how you feel hopeful and scared about reducing your prednisone.
Good luck today and thank you for sharing your experiences and your love.
That is great! There was so much interest and response after the last Annual Meeting....I wondered....do folks even know that they could attend also? It is so worth it, not only making sure it is always available to us, but you can gather so much additional info. I remember my beginning....I didn't even know what questions to ask..xx💞
Dear Grammy, I must change my moniker to 123-late again!
I hope you realise that your contribution on this forum is invaluable. You have a way of expressing yourself that surpasses eloquent and when I read your posts I can ‘see’ you sitting across the room from me and hear you clearly. I also know that it it’s your birthday week but I’m not sure if the actual day was yesterday, is today or tomorrow (not sure which time zone you’re in) but my very best wishes are on their way inside this message. 💐x
What a kind thing to say. I only give back what I have received here these past five years. It is easy because we are all in the same big boat. We get each other! We hurt and care for each other. So often, my fears are erased by someone else's sharing their concerns. You all keep me together and things in perspective. I'm just a reflection of what I found here in 2019.💞
Im a member too! As you say soooo much information and support. It's given me so much confidence to take control of my PMR.I always now send a bit more than the asked for subscriptiom because it is soooo important that the charity keeps going! In fact just sent my subs on Sumday!
I don’t visit here very often at the moment as things mostly under control PMR GCA wise. But I can absolutely endorse everything you say. Without PMRGCAuk so many of us would flounder. It’s worth every penny and even once I’ve stopped pred I’d like to continue membership. Thank you everyone.
I’ve stopped Pred too but have one or two other issues and will always be a member: can’t imagine otherwise. I was at a support group meeting yesterday where there were around 18-20 attendees; many were new faces and on asking how many were members of this forum only one hand went up to add to mine and one other who is my ‘partner in crime’ 🤭 (you know her) and we were effusive in our recommendations of the forum and all its benefits. I do hope they all become members.
So happy things are under control, that is great. Do keep coming back, you can be that hope for someone who is struggling; they can learn that it does get better. That is what kept me afloat in the beginning, for sure! and still does. 💞
We are so glad to be able to provide this forum for so many people and we know it is a lifeline for many of you. We absolutely do rely on membership payments and donations. Without them, there would be no charity and sadly no forum.
So thank you to everyone who supports us. It's appreciated, not just by us but by all the people who benefit from sharing their worries and experiences here, coming to a support group, receiving one of our info packs, calling the helpline and so on.
Just one thing. Donations are wonderful, however if you want to receive our magazine and invitation to Members' Day and its speakers, you need to join as a member - then you'll get emails with information about all of these things. Message me if you're unsure.
It is simply the truth....I've been unable to access the site for a few days (as we discussed and you explained). It was a real 'cut-off' feeling and wondering how everyone else is doing. Thanks to all and to DorsetLady and PMRpro who are just a wealth of information and kindness.
I did want to add this link for people to get an information packet...not sure if membership is required first...but worth a try. pmrgca.org.uk/get-support/i... 💞
The info pack is available to anyone whether the are a member or not. It's really easy to download and is pretty instant. It is possible to request the info pack by post but this is only available within the UK.
Thanks for comments re this forum…as you say it’s a life-line for many people with PMR/GCA, especially those overseas who seem to be getting more by the day. Although, have to say I’m very often surprised at the number of UK patients who don’t seem to be aware of it..they can’t al be tech averse as many seem to attend zoom meetings..
When I lost the left eye after the diagnosis was missed...I didn't even feel the medical team knew much, and I knew nothing. I can remember searching and searching for info. I found a video on YouTube of a rheumatologist made for doctors...to aid them in diagnosing the disease. That was NOT reassuring at all. The ophthalmologist in Maine had put me on 125mg of pred per day, but then rheumatology disagreed, and I was reduced to 80mg.
I only knew one thing for sure!! I knew nothing and wasn't too sure about them. Then, like some miracle, I found PMRGCAuk. My OH and I were separated, though friends. I was living in rural Maine and him in Indiana. For me to say that this forum saved my sanity and restored me from such a sense of loss and fear is not an understatement. You all helped me learn and understand and gave me such valuable information and caring support!! I knew I wasn't alone and I knew from people like yourself....there was hope and light ahead. Even now, with my situation, I cannot express how much everyone has lifted the doomed feeling I fell into...I feel so much love and passion for this mission and all of you.💞💞💞💞💞 Big hugs...
When I started, I could find nothing in the States, and I don't think that has changed. I even wrote to a few autoimmune organizations. A few years ago, I did find a group from the Mayo Clinic, but the organization was not there. Nor was he reviewing of posts, the focus, the speakers, reference articles, Newswire & more...this PMRGCAuk rocks!!!
In fact, it was partly a forum on your side of the pond that sowed the seeds for the charity and (believe it or not) the tapers! There was one but it folded - but not before Mavis had met Ragnar. The rest, as they say, is history ...
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Norwich PMRGCA. Is anyone interested in joining a local support group in Norwich, with the assistance of PMRGCAUK? 
A Special Meeting in Truro
