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Fibromyalgia Awareness Day 2009
Tue, 05/12/2009 - 1:50pm
As Lumigrate's Creative Director, it has been a pleasure talking to and learning from several of you out there who have Fibromyalgia. Looking back on when I first came to Lumigrate, I'm amazed at how much I've learned. Like so many of you, I spent years going to my doctor with symptoms and was never properly diagnosed (with hypothyroid). So many times we don't take control of our medical issues and we just trust that our doctors know what's best.
And how many people out there are like me and thought, "I'm just going to give up. This is what happens with aging and there's nothing I can do about it." I commend all of you who haven't given up, and who take control by visiting sites like Lumigrate to get better educated, and to share your stories providing hope and inspiration to others.
I invite all of you to share your stories in the Forums area of our website and please feel free to start comments in any other forum that would interest you or where you have information to share. Because so many of us have more than one condition, for example fibromyalgia AND hypothyroidism AND CFS, we have several different topics in our Forums section so you can share your stories and ideas on several issues, ALL at the same website.
Thanks so much for your comments, and please continue to share! :)
Mardy's Note: This is from our FIRST spring on the Internet, Lumigrate, unfortunately, could only afford to employ Linda and her assistant, below, into the summer of 2009. But the website continued on, obviously, with many changes. The IMC providers who were featured in our start-up 'fell apart' and all the providers ever on Lumigrate from the clinic are in separate or different clinics, with the exception of the MD who owns the IMC. I ventured out to find new providers and writers via the Internet (primarily Facebook), and through 2010 we had a wonderful array of women with fibromyalgia writing on a regular basis and many fabulous contributions from people who registered to comment and contribute their thoughts.
In 2011 I changed the format and new users now are screened before being able to advance, unless they are coming to download the videos. By that time, many people were 'using' Lumigrate.com and electing not to write anything, which was a GRATE SIGN that our content to take away is where it's at for them. I opted to do this, in part, because we had gotten such a great team of providers who will contribute, when asked, to various topics, and thus we keep our quality up. One of my biggest concerns about Internet information is accuracy, and by filtering who is writing on Lumigrate, we can accomplish that easier with less 'staff' (which is me). FUN to see this topic from almost four years ago now, as I write this note on 3/13/13 when Linda was inviting people to write. People listened, and it helped get us 'off the ground' and running on the Internet! Thanks to all who were with us back then, I am always GRATE-full! ~~ Mardy
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e-mailThis forum is provided to allow members of Lumigrate to share information and ideas. Any recommendations made by forum members regarding medical treatments, medications, or procedures are not endorsed by Lumigrate or practitioners who serve as Lumigrate's medical experts.
Hey everyone,
Since today is Fibromyalgia Awareness Day we encourage everyone to check out the below link to the National Fibromyalgia Association's (NFA) web page. There is also a link to a fun Fibro quiz that Dr. Teitelbaum contributed for Fibromyalgia Awareness Day.
NFA http://www.fmaware.org/site/PageServerded3.html?pagename=fib...
Dr. Teitelbaum's Quiz
http://www.healthnewsdigest.com/news/Commentary_510/Chronic_Fatigue_Syndrome_Awareness_Day.shtml
Hope these are helpful!
-Alex
I had some good discussions on facebook with people about the clip we posted that is from Dr. Lepsito's 'Food Allergies and Sensitivities'. (We've added it to our Forum section on Fibromyalgia also) He recognizes that some people with FMS have food allergies and then goes on to say that there typically is a stressful event related to the onset.
Someone I was talking with initially thought that this clip was reinforcing the concept that 'it is all in your head.' These are two very different things if you think about it -- Dr. Lepisto's comment is actually able to validate for us with FMS that there IS a brain/body connection! If you download his free video 'Chronic Illness: Full Barrel Syndrome', you will see that stress is one thing that contributes to chronic illness (whether it be FMS or another).
The great part about Full Barrel Syndrome is it opens the door for us to look at what we can do to get our bodies' barrels unfull and get back to being chronically well. So if you like the clip, please let people know how to find it here by providing a link to where you are right now! Lumigrate has much in development related to chronic pain and fibromyalgia, so we really look forward to people knowing about us.
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
I thought it was great -- it really showed what momentum there can be when a lot of people are applying themselves at the same time. Like rowing a boat.... I was every so honored to have a former patient who moved away when our live and successful Fibromyalgia Forum was going on write something on facebook that was so complimentary (and make me miss working with patients!). I had amazing conversations with really neat people that are circulating out there on facebook, and was very pleased to make some good networking connections with pretty important people in the fibromyalgia world. It reminds me that if I worked this hard every day I might be getting farther faster!
I think it is ironic that we were joking about having 'repetitive NONmotion injury' today from so much on the computer and it just serves to remind me that balance is the key.... and that a year from now I hope I'm better at both and have continued to have great conversations and networking and feel that the FMS world is going to get a whole lot better all the time... (and then think of what we FMSers could do to help the OTHER problems of the world!). -- Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
I wanted to post this here to thank all people who have helped make Lumigrate what it is. If a person came and read one thing and told something, thank you. If you came and looked and left, thank you. If you came and wrote, thank you. If you advised, put in the IT infrastructure, worked on the website directly or indirectly, with our marketing directly or indirectly, thank you. If you took my photograph or edited and modified a photograph to make it more 'Internet and big screen' likeable, thank you.
And if you find something not working right and let me know, thank you! You can imagine that over the years, many links at the websites we link to change. I didn't know that when I modified a title it would make the links 'break', or if I moved a container or forum (I am not a 'techny' person, so this has been a LOT of learning for me, but I've 'done it' (more than I thought I might, at least.)
I'm going to provide, verbatim, this most excellent example, and also hope that people check out the website Gwen is part of. I have ALSO set up a topic on Lumigrate in the Fibromyalgia forum about AutoImmuneMoms, where I also educate as I will here on one 'small detail', that I think is an important one, since Lumigrate is about the mind/body type of medicine: Allopathic terms we use everyday have power -- "suffering", "battling", "fighting" ... can often be replace by saying 'with' or 'experiencing' or 'diagnosed with'. And people first language is something I try to encourage as well, which this is a good example of ... can you imagine if someone said 'autoimmune disease mothers'. So why do we say 'fibromyalgia patients' or 'diabetic patients'? Because that's how the allopathic model of Western medicine taught us.
These subtle shifts are things which, in the first year of Lumigrate when we had an office for a short time before being asked to move out to make room for providers who 'brought patients into the building', I noticed were being said in the more 'progressive' way by providers such as Dr Lepisto. I learned it in OT school in the mid 1990s, it's called "people first language", and then I continued to learn various places about the effect of our thoughts on our bodies. So I hope that this will be picked up on by other educators out there, whether representing a website like AutoImmuneMoms or people who simply comment and write on their Facebook or Twitter accounts. And most of all THANK YOU GWEN, for this GRATE example of being a team player on the Internet education world about health care!
Hello, I wanted to send a quick follow-up to an email I sent regarding a dead link on your site. As a refresher, I was reading through the resources on this page of your site: http://lumigrate.com/forum/fibromyalgia-awareness-day-2009 The dead link I found is:http://www.fmaware.org/site/PageServer?pagename=fibromyalgia It looks like that resource is now located here: http://www.fmaware.org/site/PageServerded3.html?pagename=fib... And while you're making that change, I wondered if you might consider an additional resource? I know you have many, but this is a unique, educational site that offers fantastic support for mothers battling autoimmune diseases: Help, Q/A and Forums for New Moms with Autoimmune Conditions http://www.autoimmunemom.com/Thanks very much - I appreciate your time and consideration! Best, Gwen Gwen Stewart gwen@autoimmunemom.com
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!