Last night I had another great Fibromyalgia support group meeting. The structure of the meeting was new for the group; each of us brought books we have read that have had a positive impact on our lives in one way or another. Members brought books on topics from self-help and memoir writing to Lake Wobegon. A very clever member shared a book that has had the greatest impact on helping her with the dreaded fibro fog – a notebook! Seriously, everyone of us should have one close by at all times, and what ever you do, don’t lose it like I did mine. Devastating!
As each meeting does, last night validated all of the work I put into organizing the group, because each meeting and each interaction rewards me, supports me, and encourages me. I feel blessed and honored to be a part of the group, and proud that I played a part in bringing us all together. After each meeting, members are asked to rate the meeting and leave a comment about their experience. I would like to share with you a comment left by a new member attending her first meeting.
Dannette called the group “a bunch of scientists” once and that’s a pretty apt description. Very rarely have I ever run into people who were so interested in learning without having a (well at least I didn’t sense one…) hidden agenda. The people were kind and generous with both listening and talking and the interaction is a lot of fun. It is very obvious to me that Dannette nurtures this group and puts a lot of careful thought into how to best meet the needs of the members. The people who have joined the support group but have not yet attended a function are really missing out. This truly is a support group.
Can I tell you how happy this comment made me. Of course I appreciated what she wrote about me personally, but it was her overall impression of the group that pleased me the most. She sees the group as I do – kind and generous people who respect and support each other, and who are actively interested in improving their lives. We are a realistic bunch and recognize that there are so many layers to Fibromyalgia, and each book we share, topic we discuss and positive results we report is just a part of a piece of this million piece puzzle. But together we are a much greater force than each of us is alone.
A group like this does not just happen. First it takes someone to decide to make it happen. And that someone needs to be commited – despite their own health issues – to nurture the group and put “a lot of careful thought into how to best meet the needs of the members.” But that is only the beginning. Then people need to join the group. And then the people who join need to trust their instincts and honor their need for support by participating. And when all those pieces come together, a night like last night happens – a night of sharing and caring and community.
I can’t tell you how much I wish I could create a group just like this for each and everyone of you. Everyday in comments on my blog, on Twitter, in message boards, I see the need for more connection, more support and more interaction for people suffering with Fibromyalgia and other invisible illnesses. My heart literally aches with the need to help. I feel like it is my purpose, and nights like last night reinforce my commitment.
So what am I going to do about it? I have been brewing a plan for awhile now. It is a slow brew due to the faulty filter and machine I call my brain, but it is brewing non-the-less. My blog Fibromyalgia Haven is just the beginning of my passion to create a Fibromyalgia community for everyone, like the small FM community I am lucky enough to have created here locally. I am lucky to have this group, but the key is, I created my own luck.
“Diligence is the mother of good luck.” – Benjamin Franklin
“Luck is what happens when preparation meets opportunity.” – Seneca
“I’m a great believer in luck, and I find the harder I work, the more I have of it.” – Thomas Jefferson
And that is the truth about luck. The harder I work, the luckier I get. I am here in this place, poised to heal and to help others heal, because I have worked for it. I am going to continue to work at it. It is the commitment I make to myself and to anyone who wants to join me on my journey. You are all invited, but it is up to me to make sure the journey reaches everyone, even those of you so far off the beaten path that you are certain no one will ever find you or care that you are there. I care! And as my wise friend Hillary reminds me often – you are loved, and you are not alone.
I as always love the blog you wrote about the group! This is why I was so sad to miss you all lastnight due to being sick. I knew that it was going to be a great meeting and i really wanted to hear what each member had to say and share. There is always something to take away, learn and share. And if reinforces that I am not alone and leaves me feeling hopeful. We have a great group and none of that happens by accident. Dannette, you made that happen , not by mistake but by all the effort and hard work you put into our group. It gets better and better and I sure am happy to be part of it.
Dani,
I am so happy that I was directed to your blog tonight. I am feeling so many different emotions, but I feel a huge sense of gratitude that I know you . . . as a fellow fibormyalgia “sufferer” (for lack of a better word) I find support is so important to have, particular from others who “get it” and deal with the same types of issues. I do not have that in my life, in a physical sense. I do have it on-line but I think to have that community in the “real world” would be great. I have been struggling, as you know, going through a tough time on many levels, but particularly due to a flare that has come up and brought me down. What a joy it is to know you and some of the other positive and supportive people we have the opportunity to know through twitter. I think I will look further into finding a support group in my area, and if there isn’t one, research how to make that happen.
Thanks for the inspiration and your kindness. You are a beautiful person!
Hugs,
Amy
Dannette you are so inspiring. You do such wonderful things, you have such a beautiful heart and soul. Just wanted to tell u that 😀
Hi Dannette! I’ve been following your blog for some time now and I’ve been so inspired by you and other fibromites blogging about their life with fibro that I’ve started my own blog. I’d be honored if you’d stop by and check it out. Thanks and hope you’re having a good day =)
Jenn
fibrologie.blogspot.com
Hi Dani
You’re so lucky to have a great support group. I have fibromyalgia, too but I live in New Zealand where there’s no support whatsoever for us fibros. Your blog is very inspiring!!! 🙂 If you like, come and check out mine on
http://myfibromyalgiajournal.wordpress.com
Okay, Enquiring Minds Want to Know. Would you like to share what this fibro community looks like? Or is it still percolating? And I’d like to help… I’m never a leader always a follower and this sounds like a great idea to follow.
I really wish my subscription to your blog would work. I signed up for it via email but I never get an email. I think I just figured out how to get it posted on Facebook. We’ll see. And what in the heck is RSS and where do I go learn about it? I know it stands for “Really Simple” something but I haven’t figured it out which shows how technologically savvy I am! And obviously any “helping out” isn’t in that area…
…and I really like the nickname Dani. It kind of rolls off the tongue 🙂 Okay to use it?
Glad you got validated. That is an awesome feeling!
Another proud moment for the BIG SIS……. I am so proud of you, I am blessed to call you not only my Best Friend but my Sister. I wouldn’t change a thing….. except one thing…….. I wish with all my heart I could just take all your pain away, make it disappear and never ever come back. I wish that for everyone with FM.
It fills my heart with joy to read all the comments about your blog. I can see and feel all the hearts you have touched. You truly are an inspiration to all that know you. To know you is to love you.
I like hearing other people call you Dani. It is an honor to have named my Daughter after you. The world is a better place because of people like you. Keep up the good work and getting the word out to others about FM.
LOVE YOU
Dannette- I miss you my friend. This is such a blessing. You are an incredible lady. I am really happy for you and wish you much love, health, and happiness. You are doing great works!! love, cathy
My doctor told me I have fibromyalgia. I’ve been in denial for years because in my mind, I thought it was something else due to all the pain & other symptoms I have been dealing with. I never knew much about this disease until I read this blog. HELP! Someone please reach out to me..