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.🫂💞💞
Written by
Grammy80
To view profiles and participate in discussions please or .
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💞
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Recordings of webinars from PMRGCAuk Week
A Special Meeting in Truro
Signing off
