Fibromyalgia Awareness- Our 2012 Campaign with Shannon Carter and Local Newspaper Showing Us How it's Done!

I look forward to working on this with you and to all that comes from this Fibromyalgia Awareness Day. 

The next step is getting an image on my profile here so I'm not an apple.  Grins.

Shannon

Shannon, you've contacted your local TV station and someone at your local newspaper about doing this story: How does a person know who to contact at a paper or TV station? Did you call them on the phone, email them, fax, or ask to speak with them in person?

For a newspaper, I'd start with talking to a "feature" editor. I'm lucky because I work at the local paper, so I knew him.

You can also write a "Letter To The Editor" if your paper has that sort of column. Most do.

As far as our T.V. station, I simply e-mailed them my story, and naturally, including the newspaper story. Try to stick to the facts, short & sweet at first. If they want to use your story, you can go into all the details later.

Perhaps others are going to do the same after reading this! If anyone has experiences that come from reading this story, I'd love to hear them, please email me at mardy@lumigrate.com [10] or do the Contact Us, and I'll cut and paste people's comments into this comment area for others to see.  Keep in mind, this is a month-long campaign and I hope that a few GRATE stories will unfold by the end of the month. Thanks again, Shannon! I'm looking forward to the process unfolding and most of all, reading the new interview or seeing what the TV station might make available on their website!

My next question: 

What was the response in 2009 to your stories on TV and in the paper: Did it change how people viewed you at work or in your personal life and in the community, etc.?

 ~~ Mardy 

I think it helped my coworkers understand why they would sometimes see me "popping pills" or walking funny. I was surprised how many honestly didn't know how sick I was.

The public response was wonderful! I got calls & letters from our readers thanking me for being brave enough to speak out. Some said it helped them get a diagnosis. Others had never heard of it and were wondering why they were feeling the way they were. And others who have chronic illness said it helped their friends & family understand the disease better.

And THAT, RIGHT THERE, is why I'm doing this again in 2012 for Awareness Day. To help others. To be a voice. It can be embarrassing at times.

I was checking in with Shannon this week to see how they were doing with the interview process.  Since I learned of this weeks ago when she was looking for sources related to what is new since the last article ran in 2009, I wanted to have the opportunity to have input if they wishes to have it.  

Interestingly "real life" is happening: Shannon had job changes at work so is having to also train someone for the job she is leaving and train for the job she will be going to, and there were graduations and weddings going on in her life outside of work, so she's kind of 'slammed'.  She let me know mid-week that she had reminded the person at the paper who had agreed to do a story of the approaching date.  I remember having to learn how 'last minute' the media operates when I started doing outreach to them to get them involved covering the integrative medical center I was part of the initial year while Lumigrate was being created. 

SO, since they might be wanting information -- and anybody else who has been inspired to initiate having a story about fibromyalgia in their local media -- I thought I'd write a little something up here for reference.  

Shannon's story from 2009 is very good, as I have said, above.  I think it showed what the 'average person getting the average health care information and treatment from insurance-based medicine".  I thought about the past year and what stood out for me about fibromyalgia and I had one thought I wanted to cover here.  

Physician knowledge about fibromyalgia: Recently, my regional medical center's continuing medical education had an hour about hypothyroidism.  Naturally, this is part of fibromyalgia (and I've put a link here to get people routed to a good topic by Dr. Spurlock, and extremely knowledgeable MD in Dallas, Texas, whose specialty includes treating patients with fibromyalgia and chronic fatigue. www.lumigrate.com/forum/thyroid-detective-doctors-clues-lead-you-way [13]).

The doctor who was presenting/training the conventional doctors in the seminar I attended locally did NOT get the information as Dr Spurlock presents it for people with fibromyalgia, they actually were told NOT to do the type of testing he recommends in his pieces at Lumigrate.com and elsewhere. And what he does is consistent/similar to the Lumigrate.com video on hypothyroidism which was part of our launch in March of 2009.

So I am VERY concerned that doctors in the US are still getting education from people they consider authorities on thyroid to only test TSH on patients who are 'walking and talking', as the training doctor said when I heard him speak to the local doctors.  I know from personal experience that I went to many doctors over many years and was always fatigued and had other symptoms which should have let them know something was awry with my thyroid, but they would only test TSH and it was always 'in the normal range' and that was the end of thinking about my endocrine system/hormones.

I was going to an MD who was considered a regional fibromyalgia expert and had just had my second hour-long visit and went to get a massage and the therapist saw the goiter on my neck! She refused to set up another appointment with me unless I got another appointment with the MD about my thyroid: Thankfully, once the symptom that was obvious visually to those who are observant was pointed out to him, he knew how to test in a way that teased out the thyroid dysfunction. Even Oprah Winfrey, on her first show of 2009, revealed that she'd gone to several doctors and it was viewers commenting that they could see evidence in her neck tissue that she had a thyroid problem! 

So potentially having the articles or news segments educate people about the unfortunate 'disconnect' by the majority if medical providers available to people, like Shannon, who have insurance and seek out primarily insurance-based, conventional medicine.  

Another aspect to the story about fibromyalgia and changes recently in treatment has to do with the increasing numbers of medical providers are leaving their insurance-billing practices in favor of clinics such as I was part of in 2008/9, and Dr Spurlock's clinic in Dallas, Texas. It is actually a very risky and expensive undertaking, and I made the switch out of being an insurance-based occupational therapist in 2008 to start Lumigrate about integrative medicine and functional medicine for chronic wellness or curing chronic illness issues.  So people are not doing this because it's 'cool', it is because we cannot function in the 'system' of medical care in the US and be able to give people the information and treatment they need with the influence of what insurance allows.  

Example: I had a patient with arm pain who clearly had inflammation from foods but I couldn't advise her about nutrition as an OT and when I suggested she talk to her doctor (worker's compensation), she came back with a big prescription bottle of ibuprofen!  That's not going to solve the underlying problem, it actually will add to the problem of the GI tract and make things worse.  I had experienced the benefits of functional and integrative medicine and set out to create a website which I can consult 'through' with people who want or need individual attention and that turned out to be Lumigrate.com.

Increasing numbers of patients are turning to alternative medicine providers and products as their insurance is paying for less or they are losing insurance coverage.  While Dr. Spurlock's charges are very reasonable, in my opinion, it is out of many people's immediate budgets, and that tends to frustrate many consumers who do not have the concept of how to look at their medical care and where it comes from differently. I recommend people think creatively -- ask for family gifts to be funds to pool for a visit to providers who can help.  Consider doing fundraisers -- there is a local man who was just diagnosed with cancer and they're doing fundraisers to pay for things which are not covered by his insurance, as he believes 'integratively' and not 'allopathically' related to medical care.  ("Integrative medicine" addressed the whole person's body, mind, and spirit but also integrates ("brings together") different types of providers such as naturopaths, acupuncture, psychology, holistic/biologic dentist, etc. and that includes MD/DO AND pharmaceutical medications as necessary but they are used as a tool you use after other more underlying problems have been tested and addressed.)  

I saw in the 2009 photo of Shannon that most of her bottles on the table of what she takes are BigPharma medications she obtained over the counter or by prescription, AND some are nutritional supplements. I would have to say that in the three years since Shannon's story ran in 2009, and Lumigrate hit the Internet and I started seeing what people around the country were experiencing related to treatment for fibromyalgia, there has been a dramatic increase in awareness about nutrition.  "Food is your first medicine" has become a concept that is embraced by increasing numbers of people who generally find success in 'simply' changing what they eat. 

It is actually VERY difficult for people, particularly who live with others, to make changes in their eating habits. But when the person communicates how important it is for them to get better and feel better, those people can become very helpful in reinforcing things and the whole family becomes healthier and more successful long-term. An example I think of in the workplace is popcorn: it can be a wonderful snack but boy is it hard to stick to not eating popcorn if someone is making it at work! Hospitals typically have banned microwave popcorn because of the lovely wafting odor being problematic for people unable to eat or unable to eat popcorn! 

When people learn that organic foods are grown in more nutrient-dense soils or have better fats in them, such as with beef, and it's not just about them NOT having toxins, people often say 'but my budget cannot include those more expensive items' because they're envisioning switching to the more expensive versions of things they eat currently.  Realistically they need to eat differently overall and their food bill doesn't have to change typically.  Example: Eggs: Organic are at least double the cost of those from hens that are fed a poor diet and chemicals.  But breakfast won't be centered around eggs in the new way of eating; people might eat an organic apple and some organic nuts instead.  A big salad for lunch with some seeds in it instead of thinking 'sandwich meat and bread that is more expensive organically'.  In the summer when people have gardens, it can be a really inexpensive time of year for those who have gardeners in their support system.  

There is much more awareness today than in 2009 about supplements for fibromyalgia, and naturally we have a lot of that content on Lumigrate in the fibromyalgia section as well as the general nutrition section / "supplementing what you eat" forum if anyone wishes to explore that information.  You will see we have two sources of information, one is a brick and mortar compounding "and natural wellness" pharmacy in Colorado, ITC, which is a large operation and has 75% of it's patients with fibromyalgia, so they definitely cater to FM and are resources for information for interviews.  And Robin Thomas, a former medical researcher whose son had medical problems which forced her to shift to working from home; she distributes in a network marketing way for a supplement company, USANA, which is one of the top rated supplements in the US for quality. Since people like to buy things both ways we have experts on Lumigrate from both ways to narrow things down for our followers, or in this case, people reporting about fibromyalgia.  Robin is an excellent person to interview as well.

Since I developed fibromyalgia in 1994/5 after a significant chronic fatigue syndrome in 1989 which I recovered from well, I have been at this a while and have seen so many changes, and I am hopeful for many more people to have better outcomes related to fibromyalgia! I believe that the popularity of Facebook in recent years for the majority of people who have fibromyalgia turned the Internet into a powerful learning tool; that is how Shannon knew about Lumigrate and where she contacted me, on our fibromyalgia-specific page "Lumigrate: Fibromyalgia".  

So to answer Shannon's question about what is new since 2009, I would have to include Facebook's impact on connecting people who have fibromyalgia.  I have also observed through the MANY conversations you can view on Facebook and observe individuals over time, there seems to be a 50/50 split with those who have fibromyalgia: Some want to learn and change and do differently, and the other half want to stay with what they have.  Lumigrate caters to those who are the mindset to make changes and 'roll up their sleeves' and do the hard work of evaluating their mind, body, and spirit issues and address things.  It takes years typically, but often people start seeing results very soon when they apply themselves to the functional medicine concepts.  For those who don't initiate improving their lifestyle and making changes, their treatment needs to focus initially with why they are resisting changing.  Others who are open to change can typically start with what they drink and eat.  Often I start people out with meditation so they get centered and can better direct themselves and their care.  We are all different and so our processes have to be unique as well.  That is why it is so difficult for the typical physician to treat people with fibromyalgia; they're used to treating one aspect of a person, like a broken toe, for instance.  But what causes fibromyalgia is not one thing, it is many and it covers body, mind and spiriit, which is just foreign to the insurance-based medical care system we have relied upon up to this point in the US. 

I think that has ALSO served to allow people to 'come out of the closet' about having fibromyalgia, which you see, above, was part of the benefit of the story in 2009 for her, as it helped those around her at work understand her special situation better.  I definitely work EVERY DAY for fibromyalgia awareness through Lumigrate's social media and other marketing, and hope that this topic about doing a news story, including my thoughts and links in this comment, are helpful to get more awareness from Lumigrate's perspective out into the mainstream media as well.  At least it is a start!  If anyone has questions, I welcome your contacting me.  Contact us comes to me or you can find contact information listed at the website and our Facebook pages; my email is easy -- mardy@lumigrate.com [10] ! 

Live and Learn.  Learn and Live Better!  ~~ Mardy

Here is a link to the Fibromyalgia section, although you can also navigate to it using the links above the top of this topic: www.lumigrate.com/forums/health-issuesdis-eases/fibromyalgia-chronic-pain-and-chronic-fatigue/exhaustion [14] .  

There are many forums for different types of providers or content category and I want to point out that the plain "Fibromyalgia" forum has a ton of information in it, including the US and UK nonprofits about fibromyalgia I selected to link to from Lumigrate as I liked the type of information they cover.  In the case of the Fibromyalgia Network in the US, they are supported by members and grants and not by advertising revenue.  I found in the past when I visited the NFA website, which has a lot of advertising from Pfizer, their content seemed to be about the symptoms of fibromyalgia which Pfizer's medications addressed but not about other symptoms OR solutions.  I find WebMD to have some really good information but they also seem to potentially be influenced by what advertisers want people to know/believe which is often in disagreement with what functional medicine teaches, which is what Lumigrate's approach is. (Functional Medicine: Find the underlying causes and change things so those are right again, instead of addressing the symptoms. Essentially.) If people need to learn about food allergies and change how they eat and that solves their health problems, that's making money for the food/wellness industry in different ways and naturally there are many businesses and people who do not want people to go that route as they will no longer purchase/need/consume what they are selling! And that is behind the education conventional medical providers get, in my opinion, and that has caused a lot of people to not have their thyroid levels properly checked, not to have been given advise about proper nutrition and food allergies, etc.  Think about this: The top 10 foods in the US people get inflammation from are the top 10 foods consumed in the US!  That would shake things up a lot of we limited those foods and ate the 11th through millionth most frequently consumed foods, eh? 

PS - Shannon and those at your paper working on this story -- I hope this has helped set up some ideas for your story if it comes to fruition.  I always work to educate people about thinking differently when you have fibromyalgia about priorities.  I don't like to think of it as an 'easy out' but people develop fibromyalgia from not listening to their bodies as thing tip from chronic wellness to chronic illness, and part of recovery has to include changes in how we structure our lives; meditation/prayer twice a day for 15-20 minutes for example, but also allowing yourself to say 'my intention was good but this is going to be too much' and 'knowing when to hold 'em and when to fold 'em', so to speak.  From MY standpoint, your contributing to this process has had 600 people reading about it BEFORE FM Awareness Day, so you've contributed to the awareness!  But if an article is done, you can talk about it and provide it for us below and we can see the end result!  It's a month-long awareness cycle in my mind so hopefully sometime this month we'll close the loop on this one!    

Thanks for this informative article, Mardy.  Shannon, thank you for sharing your personal story.  I have great hope that the medical community is slooowly coming around to awareness of the significance of nutrition and support for quality of life issues in fibromyalgia, as well as in all chronic inflammatory diseases.  

At least I know that clinical research is now ongoing concerning the benefits of nutritional supplements to our health.  It is frustrating how long actual clinical trials take to bring significant answers to the general public. Most previous studies have been based on surveys, and the long-term memory of participants on what they were eating and what supplements they were taking, with little emphasis on the quality of those supplements. 

As you know, I am affiliated with USANA Health Sciences.  I have been quite pleased to see their partnerships with top research facilities such as the Linus Pauling Institute and TOSH.  Their research encompasses many supplements and follows many different health concerns.  Not specifically fibromyalgia, but my personal opinion is that improving total health will always increase our quality of life.  My background in the research of inflammatory pathways showed me the interconnectiveness of dis-ease.  

Here are a few articles written, not by me, but by a non-scientist writer, describing a few of the research projects going on right now affiliated with USANA Health Sciences: 

Research at the Linus Pauling Institute [16]

Teaming with TOSH [17]

USANA In House Research [18]

I always keep my eyes open for new nutritional  research around the world.  When I find it useful information, I share on my weekly newsletter.  Awareness is the first step to healing!

Live Well,

Robin

How have things changed since 2009 in the area of fibromyalgia? I commend the efforts here at Lumigrate for education and the great example shown in Shannon's story of someone wanting to share her story to raise awareness through those who read the newspaper where she lives. So thank you for asking!  

Best wishes for your future health! 

I truly appreciate that, through Lumigrate, I have become more aware about chronic fatigue and fibromyalgia. Lumigrate is such a great site to empower people to get information and resources and to become the well informed patients they are. I appreciate being included among these providers related to health care.  

I've had a provider in the past tell me the reason they wanted to write on Lumigrate is so they would learn more about fibromyalgia (Beth Patterson, our spirituality coach and guru/crone when it comes to information about end of life as she had a long career in hospice and palliative care administration).  And then she went on to say how much she felt was possible with collaboration and communion related to the providers at Lumigrate, and having each other as resources as we are on this journey together as providers/teachers/mentors/coaches, etc. So thank you, Martine, for having recognized and stated that!  

I REALLY appreciate your taking the time to post a response since you NEW book, The Take-Charge Patient, comes out in the next few days.  And believe it or not, Dr Spurlock was not aware of that -- there is a most interesting serendipity which happens sometimes in how things come to be on Lumigrate.com!  

Since you were busy with the preparations for your book release, I don't think YOU knew about something that went on around Lumigrate's forum on hypothyroidism in the last couple of months.  Naturally, thyroid is always part of what is going on for people with fibromyalgia, that is just part of the cascade of the chicken/egg 'catch-22' of cause/effect/symptoms and further symptoms.  I had excetedly attended a provider CME (continuing medical education) on hypothyroidism.  These are always geared for physicians and then other providers can attend and we get a certificate if we want that says we attended so we can count that toward our respective discipline's continuing education requirement.  

The speaker was affiliated with a highly regarded medical university system. Within the first page of slides on my handout, there were already things that were not sounding consistent with the training I have had these past five years about thyroid and people who have fibromyalgia and chronic fatigue syndrome.  Granted, I've been seeping in "integrative medicine" which looks at the functional/underlying reasons and works to solve those and not a 'top down/Band-aid' approach which is what allopathic medicine's strong suit/foundation is.

But I ALSO know that I've been seeping in nation-wide frustration from 'average' patients who have been so mistakenly medicated, underappreciated and misunderstood, to the point they are frustrated at best and angry at worst -- 'toxically so' sometimes. Almost without exception, tears  are shed when someone with a chronic pain or chronic fatigue/fibromyalgia history tells their story in our strategy session or initial meeting.  (That is on their part and sometimes on mine too, particularly when they have been misunderstood by the systems around them (medical, family, employer, etc.)  The initial part of your book where you describe your long process of getting missed-diagnosed and suffering for such a long time is a great example, as it sets up the importance of the book and your similar background with 'coming from the trenches' having also had to persevere and also do your own research and guide your diagnosis. 

At that one particular training, I literally got to the end of the hour and my heart had sunk/broken in a way  .... and I was also ticked off because I saw a roomfull of doctors/physicians get educated just like my doctors had 10, 20, 30, 40 and 50 years ago, with information that was going to mislead them with what to do when they had a patient like me in their office.  I understand that in the past this newer thinking was not out there yet, but it's been the standard of the "progressive" fibromyalgia treatment industry for decades now, and at some point I guess I can't really call it "progressive".  

Much of what he said was truly VERY MUCH contrary to what the 'resident experts' at Lumigrate have said over the years that I have known them. Jacob Teitelbaum, MD, who is working on the FOURTH edition of From Fatigued to Fantastic was definitely the 'teacher' through his books to all of them, and Milton Hammerly, MD who wrote a wonderful book in the late 1990s about an integrative approach to FMS was my MD in the years just prior to that.  

To see doctors being lectured to by someone saying 'for your walking and talking patients, unless you suspect pituitary issues, just (do the one basic test)' was frankly shocking to me.  From my early to mid 20s and for 20 years after, countless physicians would rightfully pick up on that I had a thyroid issue based on my symptoms but they only did that one basic test.  Over and over, in four different cities I lived in for college or my professional journey as an occupational therapist.  (I see now that I needed to not be walking and talking and maybe I would have gotten the proper testing! I was very compliant with diet and exercise and had a very full life but I also had a lot of determinism and so perhaps they didn't REALLY 'get' how exhausted I was, and might not have looked it to them because I was putting on a good 'front'.  A good front can help you get through a lot in a much more positive way.

SO several of the Lumigrate providers collaborated and added onto a topic about T3/T4 to serve as the 'antidote' to that.  If someone finds it at Lumigrate and likes what they see, they might just get a paper or digital copy of it (or the link) to their provider, and certainly studying up on someting ENOUGH to be able to 'stand your ground' when you're talking with a provider who might think you don't have knowledge about something is crucial.  

I'll provide the link for that below for those who are interested.  But with people with fibromyalgia, it is often too complicated for them to learn or in the moment of the appointment they might not have the 'quick wittedness' between the ears due to 'fibro fog'.  That is when an advocate can come in; someone who might go with them to an appointment, or check in after and then be available to speak to the provider or their office to clear up any problems.  In the future, video conferencing will be the norm I believe, and that will allow distant advocates to be present DURING appointments.  But for now, we have to essentially "meander" through the transition phase of all these changes in the medical world and do our best. 

Again, this is an 'outlier', what I experienced in attending these types of trainings, they normally are VERY good -- and for all other patients but those with CFS/FMS, that expert's presentation/training was very good, I think.  It apparently is the norm across the US when it comes to this core issue of the increasingly common and very underdiagnosed endocrine/thyroid conditions that are CFS/FMS.  I normally find them very beneficial, and that includes the local providers who submit to present as well. So overall I agree with what you/Martine have said here; perhaps when it comes to things that are part of fibromyalgia -- hormone/thyroid and treating chronic pain from FMS/CFS, there is a 'gap'.  I'm interested to find out what you discover as you go forward across the country talking about patients taking charge in the various settings YOU'll be in!

I have a different view from my vantage point since my work for so many years has focused on neurological, brain injury, and fibromyalgia. Perhaps important to note and invite people to look at Dr Spurlocks' vitae, as he has worked in the more typical environments earlier in his career and then diverged into the more complex specialties, so I feel he has a very 'comprehensive' background which people might not initially see.

Again, it is very rewarding to see the provider opportunities here for absorbing/taking in as well as sharing/giving out.  I know of no other population of patients who can benefit from "taking charge" than those with this "bunch of bananas" called CFS/FM/ME/....Lupus...MS .(and on and on depending upon how far you want to look at the commonalities of effect/cause).  Truly, half of the people in the US, which is the current number with at least one chronic illness, could be impacted positively by finding the underlying causes of their illnesses and helping them do what is needed to restore wellness.

Many things require lifestyle changes and "work" on the part of the patient/person with it, so it is a very difficult and long-term situation, and when I was able to do it I developed Lumigrate.com in hopes that others would be able to as well. Now we're able to bring such experts 'to the table' or 'to be with us around the fire' and talk, it has been one more drop in the quiet pond with a ripple that has gone around the world.  Someone from Finland saw this piece on our Facebook page (Lumigrate:Fibromyalgia) and she is starting a FB page for people in her country in their native language as it's difficult for them to interact in English. It is interesting, those from outside the US have the impression our health care is the best and they are getting treated worse than those in the United States, but their results sound about the the average person who is getting treated in the US, again becasue, in my opinion, the physicians are not getting educated about what to do and what not to do for patients with FM/CFS, some still just 'hate the diagnosis' and some won't even take the patients who have it because they are so perplexed by what the patient presents with.  Oftentimes anger and frustration, naturally.  

That link, FYI: www.lumigrate.com/forum/thyroid-hormone-supplementation-t3t4-hows-it-made [31]

~~ Mardy

I wanted to follow up with Shannon at the end of May to find out if the paper ever did a story this month.  They did not and didn't give a reason as to why, but she said  

"I only have a few minutes to write, as I am still training (for the new job she was promoted to after she had initiated doing another story and reached out to me and others to get informatoin about what is new since the first story in 2009).  But that's ok because maybe I gave others the idea on how to do (a story) in their home  town.

The main goal is to spread awareness & educate. And I appreciate everything you have done and any input that was shared by others. I also think I took on way too much - I ended up having the WORST flare up EVER. I almost collapsed from the stress & exhaustion (as I was organizing a celebration in my family in May as well).

I'm slowly recovering, but I am now looking for a new physician, as this process has helped me to see new information related to taking charge and getting a doctor who can help me better. " 

I want to THANK SHANNON for participating in the closing of this year's Awareness Day/Month topic/event at Lumigrate.com. The neat thing is that June 1, 2012 on, people can still refer to this and think about how they can get something in the works for next year.  And mostly, it shows a very important concept, one which I as an OT or as a consultant about function teach: "pacing".  

Since May is ALWAYS a busy month with end of school and in some cases graduations and ceremonies, perhaps planning to do the interview with the media at a slow time in their year and 'news cycle'.  Just because Florence Nightengale was born on May 12th and that's what was decided by some people in the 1990s to use as the 'awareness day' around the world doesn't mean that's the best day for YOUR community to be focused on it.  The long, lazy days of summer might be a good time.  The early fall after school is back in session might be a good time.

 I think it varies based on what your community offers.  I moved eight years ago from the eastern slope of Colorado/"Front Range" to the western slope, which is the banana belt and has much to do with agriculture, so things here have seasons -- we are in snap pea season right now, and in a while there will roll out the various delicious fruits grown here as well as the vegetables: peaches, apricots, cherries --- and then at the end of all that is WINE FESTIVAL.That is when school is back in session and everyone has a million other things going on: Palisade Peach Festival, Apple Fest in Cedaredge --- it's the perfect cool yet warm enough weather and typically not with rain, so outdoor music festivals are held.  That would be a lousy time to have an awareness article in the paper or ask the TV news to do something about you.  

So I do encourage everyone to

1. Learn from the information we have provided on this topic about fibromyalgia and how to get the best medical treatment from the various providers you can benefit from utilizing. Then TAKE ACTION, as Shannon has said, above. 
2. REALLY learn what the opinions are out there about what causes fibromyalgia and what can be done about it.  Form your own opinions.  Then take action and make EVERY DAY awareness day! That can be something big like initiating something with the media, starting a support/education group in your community or online (or both since people often cannot get out to meet in person regularly).  
3. Often with fibromyalgia it is those around us -- our family, friends, and coworkers who can help us the most by being properly educated.  They can best help you if they understand.  Often, it is not a priority to them to learn and then TAKE ACTION and consider whether they are of benefit to have around you; perhaps you can open up space for other people who will end up being a help to your health in the future. 

I hope that you find much information at Lumigrate.com which can help you.  Many have helped me in the last four years to create something that today is EXTREMELY helpful to people who take the time to learn and DO.  Remember, it is one thing to learn, another one to implement the change.  

If you value yourself and see that you're worth the effort, as Dr Spurlock says, above, 90% of patients make improvement in reversing the symptoms and it is curable. If you're saying 'huh, is that part of things for me?', then please explore the appropriate forums at Lumigrate.com; we have providers who are coaches and can work with people across the US and beyond if you don't have access to someone where you live.  If it's spiritual issues or lack of spiritual empowerment, you might look into Beth Patterson's work on Lumigrate.  Otherwise, Gwen Pettit, who is also a PT with years of experience, is a certified life coach and makes things very simple, she's very friendly and well qualilfied.  I know them both personally now, though we met through mutual professional colleague/friends. 

But having a team around you that is to your benefit and not your detriment is the key as much as your having the self-efficacy to take action.  I hope you see our team at Lumigrate, Shannon included now that she has been a contributor, as part of your team.  ~~ Live and Learn.  Learn and Live Better! ~~ Mardy

Shannon let me know "good news!" that the paper was going to do a new article and then sent me a link as soon as she had it. Here it is!  miningjournal.net/page/content.detail/id/576510/Fibromyalgia--Treatment-is-often-challenge.html [34]

They did a nice job!  She had let me know that she mentioned Lumigrate.com ("I hope that is okay" she said).  YES, that's great.  But they whitewashed and that is fine, I understand how that goes. 

This is a really nice article and I'm really pleased to see that they interviewed a complementary/alternative medicine (CAM) provider, and mentioned the Internet being a tool for you, since you'd started out contacting me/Lumigrate to give them information on what is new since the first article done about you for FM awareness in 2009. 

I'm very proud that Lumigrate.com was part of your Internet experience, and hope that it goes beyond 'comfort'/support as the article indicates, as we are an education tool which hopefully is a comfortable place for people to come and 'be' who want to stay healthy or get back towards or to "healthy". From my standpoint, fibromyalgia is the epitome of the opposite of ideally well, as are the other chronic illnesses.  Illness simply takes many different paths down the hill from the peak of ideal health.  

Shannon, so far, what reaction have you gotten from the article from your coworkers, family, friends, grocery store clerks or whatever? 

 

This may help people who have fibromyalgia reach out and initiate similar articles if they hear what comes AFTER having one about you in the paper when you live in a rather 'average sized small city'. 

Again, I appreciate your taking the time and energy to raise awareness at Lumigrate.com with me on this piece for our 2012 Awareness Campaign about FM and the related 'etcetera'. ~~ Mardy

I think it's too soon yet. Most papers are being delivered as we speak. We will see what this next week brings.

Last time I had gotten many calls & letters here at work. I think internet awareness has grown by leaps & bounds in the past few years. I don't think I was even on facebook at the time.

Online support is everything to a lot of people, especially if you are disabled. I will keep you updated as reactions come in. Thank you for all your support and I'll check back in with you about what the response is.

Veteran's Day Update -- I have gotten a few calls at work with positive feedback from this article. It has also helped family, friends & coworkers understand a bit more what I deal with every day. I intend to continue to spread awareness!!! Education is the key! :)