I am Asking for Opinions, from those familiar with my Story

I am working on creating my page for the Support group I want to begin, I. Basically want to Include RA, Fibromyalgia and Other Auto Immune Disease, Suffering In Silence No

I was thinking of things like" Suffer in Silence No More" what do you think of that one, and any suggestions as to what I may want to include in My page would be greatly appreciated, I could not have got this far, with out the care and inspiration, the special people and friends on here have given me, It is only right that I ask you help and input, in this venture I am taking upon myself x

Thanks so Much Lisa XXXXX

7 Replies

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  • Good for you lisa.How about The faceless disease. You can't see it,touch it or feel it,but boy is it there and it hurts.

    You should have been in bed before you posed this question so i am assuming that you are in pain this morning lisa.

    Sending you Hugs from me. Love sylvia.xxx

  • Hi Sylvia, well You know me soo well, must be that connection,

    yes, yesterday was a real Hell Day, I had a real difficult time getting to co op, seemed like forever to get there and back, had really bad flare, and my R hip, R ankle, and left knee kept, going, so I had No strength in my legs at all, so I either had to keep stopping, Or hold on to buildings or wall with my free hand, and walking stick in other, Yes, I spoke with Natalie, yesterday, and discussed it, and it would be an extension, of my Facebook page, So I am getting some ideas, to include, before I get to work, on it, so if anyone else has Ideas, of names or what to include in page keep them coming x Thanks so Much, Hope you are doing better today, Hugs n Kiss

    Lisa <3

  • brillant answer. it says it all.

  • Hi Lisa,

    What a great idea. Presumably you mean a web page? Goodness knows how you go about starting such a thing so I'm impressed already. It seems like a fantastic project.

    Do you have a good relationship with your rheumy team? They may be a good source of information on what to include.

    I would want to know who else was in a similar position to me locally and whether there were facilities available to take advantage of.

    Oooooo, the list could be wonderful - how about a buddy page, so many of us feel isolated and don't want to put upon our families to help so advertising outings with the help of ring and ride to the theatre/swimming/cinema/beauty parlour etc etc may be a great way to support each other. Or maybe set up sessions where you can all get together to have a natter with pedicure or something. I remember a friend of mine setting up an introductory party for a friend of hers who was just starting in the massage/alternative therapy route. We all got together and sat with our feet in bowls of warm, scented water and took it in turns to have either shoulder, head, hand or foot massages for a very small fee. Wonderful.

    Good Luck and keep up informed

    Judy xx

  • Lisa---Good for you! I'm glad to see you are going ahead with your ideas! If I understand it, your web page will be like a meeting room..I like that!

    Tha Title is a good one, sure, that way it is an open invitation to anybody, so might be useful to put a line under it, that says "For All people with Rheumatoid diseases, such as RA, Fibromyalgia, and other Auto-immune diseases." Something that specializes the site.

    Really like the idea of an on-line chat room type set-up. Only thing is, how can you handle newly diagnosed people who don't have a computer? Young ladies often just starting out in a new marriage, or new baby, might not be able to afford one. In that case, maybe make up a small informative flyer that can be posted at the GP or Rheumatologist's office, with a phone number for questions, if you are willing to take that on> Just another thought. Might be too much though.

    A flyer that can be posted in the surgery office, so all patients can see, would be good. Just telling people, if they wish to "Not suffer in silence," and give the online address.

    My group is a live meeting once a month at the local hospital conference room, and I did take flers to the Dr's that would likely see these patients. Now, I often have them come to the meetings because their Dr. told them to come.

    All the best of results, Lisa Loret xx

  • Judy has some good ideas too, for when you get started. Outings would be a wonderful treat for so many who do not have much chance to get out and go anywhere. lol, like me :)

  • Hi Loret,

    Actually I have been offered a room at the Metta Centre here in St Ives, as a place to hold meetings of support, so people can share with like minded people who are also suffering, and Like me, dont have someone in their life to share with, I think the Idea of the Page is to get the word out, also, If the group grows Larger, It has been offered to me (the Group) a room at the Surgery in town, that has been offered by the PPG Patient Participation Group, and also I can announce the Group when it begins in The Stennack News Letter, So I think it will roll on all on its own and Grow, I am just waiting forthe room at the Metta Centre to be avail for start, si this is why I have asked people here for their input and thoughts, That way all of us have contributed in some way, and can all be proud of this group, when it is up and running, and hopefully, will inspire more people on this site, to do the same in their area, If they Like Me, Dont have one Locally, and the nearest Group already running is Just too far to Travel, This is what has Happened to me, And this is why I have had the desire to start this up xx I also have the support of the community Support Worker at our local surgery so All Ideas are welcome, Please Pass on

    ((HUGS))

    Lisa XXXXXXXXXXXXx

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