Fibromyalgia/CFS/ME Awarness Day, 2011 a la Lumigrate!!!

Lumigrate was formed out of my experiences having had FMS / chronic illness and lived the frustrations of the western, conventional medicine model (ConMed), and my belief that there was a need for quality, valid and progressive information done in a streamlined way that also made it FUN to come and be learing or teaching others.  I have always been an advocate for my patients and lived by my ethics to do the right thing for them in addition to the things a medical worker has to do in order to make a profit for their employer. 

That was increasingly impossible to do as monies got tighter, so I formed my own business at the VERY start (as in one second after midnight) of 2005 to contract in a PT clinic and provide OT services.  However, the realities of the monies were such that I felt it necessary to go from the frying pan in to the fire for a while, but come out on the other side with a website business that would be able to meet my desires and goals for myself AND others. 

Our first year it was a wonderful SURPRISE as I was new to facebook that year, when the first facebook Cause was initiated related to FM Awareness Day.  I'm sorry to say that I wasn't even aware there WAS a FM Awareness Day before that -- I thought that was the FIRST ONE EVER, but in fact it had been going on much longer.  That's why I have included a piece in this forum about the history of FM Awareness Day that will not have to be changed every year and then every year I'll put a new offering here related to what Lumigrate is 'doing' for FM Awareness Day that particular year.  

So that first awareness day in 2009, what I did was stay up ALL night and start a new topic on Lumigrate in the fibromyalgia forum about Your Story about Your Fibromyalgia.  I wanted people to have a place to 'leave their story' and be able to refer people to it so they didn't have to keep repeating it over and over -- everyone wants to know what your story 'is' about your case of FMS and then you dredge it all back up and it can, in theory at least, keep you kinda 'stuck' from moving forward.  

In driving performance there is a term 'potholism' -- if you look at the pothole and not the solution you'll more than likely have your tire in the pothole; if you look to the solution you'll more than likely go to that.  THAT is what I want for everyone with FMS, to have the solution and be out of the 'pothole', or I call it 'the drain' a lot.  (As in 'I'm circling the drain, going down the drain, and way down the drain in the sewer, am coming up out of the drain or am out of the drain floating merrily in the bathtub of life.)

The Your Story topic was very well received with WONDERFUL stories by enlightened women. I encourage you to take some time now or come back another time to read those and to write yours if you would like.  It inspired me!!  There were so many that I started a separate Forum for Your Stories and then linked the two for continuity if someone wanted to read them all.  About that time people had so many places elsewhere to go write they started coming less to Lumigrate to write BUT our numbers for reads kept going up. 

I don't know how many of those women, though, would give the link to their story on Lumigrate to have people come read their story and not retraumatize themselves again or make it easier on themselves, but in actuality the stories were mostly from pretty 'healed up' places.  And that was the FIRST lovely suprise I had from Lumigrate.com -- like a gift just two months into it's existence on the Internet compared to what I thought was going to experience related to 'where people's heads were at' based on my experiences with real-world patients when in an allopathic building. But that was insurance-based medicine and  the people who were liking Lumigrate enough after seeing the videos to write their stories had also done CAM/Complementary and Alternative Medicine, perhaps!  Suffice it to say, I was happy to be doing Lumigrate that next day once I got some sleep. 

That next year I started focusing more of my time not on finding new people with FMS who would want to read/write/watch/ learn from Lumigrate but more content providers from the professional sector. 

So in 2010 for FM/CF Awareness Day I spearheaded a collaborative effort with Deirdre Rawlings to have her host and interview two MDs who were part of Lumigrate's content provision cadre' at the time, and that was extremely successful with thousands of people accessing it from Lumigrate.com in the coming year/to now.  Since it is / was hosted at Deirdre Rawlings site, there naturally were many more who accessed it from her marketing of it or other places that it got posted with a direct link that didn't filter through Lumigrate.com. 

That, I believe, inspired her with ideas she brought to fruition in the next year, such as the Fibromyalgia Awareness Day 2011 activity she collaborated with via Sue Ingebretson and another provider, both also part of her newly released and very valuable '12 Top Experts' e-book.  It's very interesting to see the burgeoning and flux that goes on with the people who were or are a part of Lumigrate.com. This is a case of how it is 'all good'.  (Some of the other cases have not been but that's the way all of life and all of business is.)

So this year I needed to figure out what to do for fibromyalgia awareness day.  Since I decided in 2011 to 'regroup' and 'bring it back home' to Grand Junction/ The Grand Valley of Western Colorado, I met with several people about different ideas and there were things preventing those activities to happen this year, but they're good ideas for the future -- things just take a lot of time for development and the reality is that FM Awarenss Day competes locally with the BUSIEST season in our area as EVERYONE goes to high school graduations here and across the mountains to the colleges on the Front Range, as well as our own Mesa State College which is becoming something like Western Colorado Mesa University or some ridiculous name I can't remember and nobody will be able to figure out what it is from the name. 

I'd hoped that Yenta, whose Peace Fleece has been making an interesting little journey with me to promote fibromyalgia awareness would be writing something about the history of fibromyalgia because she is such a wonderful and FUN teacher of history, but she was off being a snowbird and she's like anybody else, stuff comes up and FUN has to wait a bit.  (She really enjoys writing for Lumigrate, you know, and everybody Yenta too!)  (No worries, Yenta, Bubbie, you know where to find us! We'll be here, we're not going anywhere but up!). 

I'd hoped to get some custom giveaway items made as giveaways and there are snags on the production end of that which have at this point two weeks before the 'big day' made me think that might not be feasable.  That's okay, it's a good idea and it too will be something we look forward to AFTER May 12, 2011.

So I have picked on my local 'homeys' this year.  You might have seen since January my writing about the Grate Groove of the Grand Valley, a handfull of providers I know in town who had GRATE newsletters, blogs, websites, classes or histories related to their personal or volunteer service in the community related to helping people.  They have all gotten to know what each other does, there has been cross pollination of information from one to the other or one to all or all to all at the four gatherings we've had. 

We've started moving forward to include other providers we know well in the community who also:

• live by ethics instead of greed and have proper qualifications and background to be doing what we're doing (valid)
• have an interest in moving their reach as professionals forward and are actively pursing and/or are learning about marketing, collaboration, networking and are as eager to teach others and 'give' as to learn from the group and 'take'.  They are as willing to refer out a consumer/person as they are to refer in/take  (progressive)
• Are reliable and mature. If there is a 'flake' they handle it in a mature manner and we as a group collectively or as individuals accept that as part of reality and recognize that as providers we also struggle with all the same things our consumers/clients/patients do -- we're human, not G-ds, which is some of the pressures we feel sometime. (progressive and streamlined both, as this keeps us on track moving along rapidly).
• Are busy because we're in demand and also recognize the need to make getting together a priority, whether in person (preferably), on the phone or video conferencing, or via email and facebook.  We make it as STREAMLINED as possible because we are all very busy.
• FUN -- apparently I selected people who all like to talk about food and nutrition and enjoy getting together to eat and cook!  I had hoped everyone like live music and while everyone was interested, when the time came they were off doing other things -- likely eating!   I hope that some of the photos I'll share about the Grate Groove can prove that -- here's one from the most recent gathering we had.

Starting on May 1 -- which is May Day, a day to ring people's doorbells and leave a basket of flowers, Maypoles if you're inclined to do such things, I'll be getting in touch with the existing people/provider in what we are going to call the LumiGrate Groove of the Grand Valley on facebook (so that people can find it if they Search on the word Lumigrate), and supply information for them about utilizing facebook for getting the word out THIS YEAR on Fibromyalgia Awareness Day about what the Grate Groove is 'about', which is wearing a groove from each others 'doors' by going and visiting personally, by referring people who might be helped by these other talented providers, products and modalities, and services.  And then, we'll just have to wait and see what happen on May 12th for it! 

Our concept is to create something in our community and have it documented on Lumigrate to serve as a recipe for success to make it easier for others to do the same in their communities around the country and world!  Naturally, like food recipes, adaptations are made each time you make something due to the unique nature of the ingredients. 

And then maybe over the coming years the Peace Fleece and I will come around to other communities who have a groovey group too and take a picture with it there! 

People keep suggesting I raffle it off and what Yenta didn't know is that as a little girl I had a blanket, not a doll, and I wouldn't let my mother take it to wash it --it was so worn by the time I went to kindergarten that it was literally unrecognizeable as a blanket.  The nurses were horrified when I had my tonsils taken out at age 4 and my mother packed it and pulled it out for my overnight stay and surgery to comfort me (we lived a long way from the hospital so I was going to be there with my sister in the next bed and no parents for about 12 hours overnight.  I was horrified when the nurse held it up like it was a dead animal and said 'she can have this when you check out to go home'.  Yeah, sorry, it's going to have to be BIG to have me pass this blanket on -- I've seen it comfort people who were blue, I've seen it light up the faces of children of all ages, including our Minister of Music, Rock Cesario when we recorded our podcast about the healing power of music.   

Maybe it will get shipped and some day be worth as much money as Dorothy's red slippers from The Wizard of Oz and do as much for fibromyalgia awareness as Yenta requested of me when I received her LOVEly gift, as the movie did for making terriers popular dogs. Maybe someday in my lifetime we'll find out, like Dorothy did, that there is no place like home, and that our dreams can be the ultimate reality.  Maybe Lumigrate and all these other positive people and forces out there pulling for the wellness movement related to fibromyalgia and all the related chronic illnesses will one day not have to have an awareness day anymore because it 'is' no more.  I hope so, for everyone concerned.  Maybe I'll get to retire someday, or take a vacation!   And YOU will too -- a lifetime vacation from pain and fatigue is why I work so hard virtually every day -- so YOU and I will have that.  The sooner, the better, so I hope that THIS YEAR, our AWARENESS a la Lumigrate goes further than the successful one last year so that some year there won't be any need to plan for one next year.  Then what will we do?  Something else GRATE and GROOVY.  You can bet on that.  ~~ Mardy