I'm curious. Did anyone else in the States participate in the Pillar Advocates Study about GCA?

[Grammy80]

I did and I found it fascinating and helpful. The primary purpose was regarding support: what support you needed most, where you found it, the importance of your rheumatologist's role, your treatment plan in the beginning and now, and what ongoing support helps you most as you progress.

I mentioned Health Unlocked so many times. HU was there when I was searching to find out what I had....didn't know what or who to ask...I'd never heard of it. Through the journeys of others, I did learn specifics, but mostly I listened to survivors and people under treatment who lived full lives. There were people who no longer took meds. No matter the question or activity, I was forever referencing all of you.

They called and said there would be an interactive bulletin board online and activities from November 27 through December 1 and it would take about thirty minutes a day...at my leisure. Well, it took me about three hours a day....but often I have a lot to say. Even shorter responses would take at least 90 minutes. You could do a video response on some or type, I did both depending on the question.

I just hope that something good comes of it for support and further awareness.💞

[potterylady]

I signed up. I hope it won't take 90 minutes a day!! If it does, I'll bow out. But I want to help others with this disease and that is why I did sign up. Thanks Grammy!

[Grammy80 in reply to potterylady]

I don't think most people would spend this much time as I did and I don't think you have to. I have a tendency to gab or type too much....... It is the closest I get to a conversation for the most part.😉💕

[potterylady in reply to Grammy80]

I get that. This illness has really changed my life. I'm much more isolated now. xo

[Grammy80 in reply to potterylady]

or their baby , there are Especially this past year, I've worked really hard to get away from that isolated feeling. I have interests around my home...but NO people.Soon, I hope to return to the Senior Center (I never thought I'd think of that as a blast) for classes and company. I've also connected with every person walking their dog by my house. Sometimes I get the rollater out and walk with them. People are my window into the world.....that includes interacting here.💞

[Lenore58]

I have not participated in any studies. Did they find you or did you find them?

[Grammy80 in reply to Lenore58]

PMR2011 had mentioned it on the forum and I gave them a buzz. Very professional and the questions they asked were just what we would like to share.💞

[montebello]

I did not sign up, but after reading your post I wish I had. At the time, I was swamped with other issues. But thanks for asking, and I'm glad you found it of valye.

[Grammy80 in reply to montebello]

I have a gal come in twice a week for 4 hours and had referenced her in the study. She allows me to use my energy for things I LIKE to do. The study contacted me yesterday while she was here and want her to give the caretaker's perspective on how she sees her 'support.' Bonus.....they are going to pay her $300 for taking part. (I was thrilled because I know she can use it, but she would have done it for free.)💞