At Lumigrate, we are spending the week getting all the pieces in order to release our "Premier Podcast" of Chris Young and I (and Adam Cochran of TalkingDigital facilitating the podcast) discussing the old days of why we started the live 'Fibromyalgia Forum' in the medical building in Grand Junction where his practice still is (and where I used to be downstairs in a PT clinic). I did this because many of the people writing on Lumigrate or following along to learn have never seen a video of me because we didn't put our resources 'on me' 2 years ago when we were madly filming (and editing) the doctors you see on Lumigrate.com's video page (2 psychologists, one MD, one ND).
Six years ago when I met Dr Young and was first part of the outpatient medical community of Grand Junction, Colorado, I had a similar experience to what Mariluz describes in this video. I'm writing right now 'hurriedly' wanting to get this posted ASAP, and didn't yet 'put on my face' for the public, but I don't see myself liking to be in front of a camera enough to want to do it without the minimal makeup I typically wear at least. But I do appreciate that she captured her 'true self' as it comes across as so very sincere. I know that it's hard with fibromyalgia and fatigue to chose ... 'do I get this done in an adapted way today or not get it done'.
I encourage you to watch this video if you've wondered why we're not seeing much about fibromyalgia in the media (YET, I think that's changing, and have sensed that for about a year now). I've worked on teams with medical providers who didn't want to see patients with fibromyalgia because they are 'difficult'. And that is true. It is too bad that the average doctor or ancillary medical provider today is so busy that they cannot truly help people from their hearts. It is too bad that so many are going out of business or struggling financially, or having to cut back, do things differently, etc., because the medical system is collapsing. I encourage people to ALSO take AN HOUR OF TIME and listen to The Three Doctors Interview about Fibromyalgia (fatigue, fog and pain ....), a Lumigrate collaborative event for Fibro Awareness 2010 with Deirdre Rawlings, ND, PhD, Jerry Rand, MD and Wm Marcus Spurlock, MD. (Link provided as well, below).
Dr Spurlock basically says in it 'don't get upset with the medical providers when they don't know what to do about fibromyalgia'. He's ALL FOR educating the people with fibromyalgia and the providers and is now back from a busy summer and re-avaialble to Lumigrate! As a matter of fact, he and I will meet in person on Sunday, I'm pleased to say. So, STAY TUNED for lots more education about fibromyalgia and what YOU and your team of medical providers around you can do about it!
In the PT clinic that six years ago didn't want to encourage patients with fibromyalgia, they now don't have that opinion -- because I helped change that by helping them see why the patients were no showing, not coming back, crying and 'high maintenance'. Ironically, that clinic now is looking FOR those types of patients as they are aware of the similarity of returning Iraq veterans and mild TBI (traumatic brain injury) in terms of what they see at the functional level in the outpatient clinic. EDUCATION IS THE KEY.
As I have said in my presentation at Berkeley last year and written about on Lumigrate before, the reason I started Lumigrate was I saw the providers and the people with medical conditions having the SAME REASONS for their frustrations and problems and saw solutions. Education and that includes helping each other undertand the other sides point of view.
I cannot speak for the rheumatologist Mari speaks of in this video, but I know that the only patients that ever caused my schedule to get far behind (which is unacceptable anymore in the medical settings as they have to operate to be viable financially) were those with head injuries or fibromyalgia. If you get too many of them and less of your 'easy, on time, non complicated' patients, you can't function as an office. So I hope Mari will call the doctor and remind him of the conversation and ask him WHY he said what he said, and try to offer some feedback at the least, and solutions if there are any. And at the very least, gain a better understanding of why, just as we with fibromyalgia want to be understood. THAT is solution to the health care dilemma one provider at a time, one patient at a time. And you notice, I'm suggesting the PATIENT be the one in the power seat. I know Mari -- I bet she'll at least consider taking my advise, and no matter what, I'll look forward to what she thinks and 'does' next via a Comment here.
Here's the video Mari did about activism, the media, the rheumatologist who has made her think and take the first steps towards activism:
And here's the link to the Three Doctors Interview I suggested investing and hour of time into (which is in two places, but easiest to find now in the Top Picks in the Fibromyalgia Section of the Forums.) www.lumigrate.com/forum/three-doctors-interview-integrative-approaches-fibromyalgias-pain-insomnia-fog-and-fatigue [2]
~~ Education is the Key! Knowledge is Power! Carpe Diem! Thanks, Mari, for the 'initiation' of this new focus on this today ~~ 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 [3] 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!
Links:
[1] http://media.causes.com/917626
[2] http://www.lumigrate.com/forum/three-doctors-interview-integrative-approaches-fibromyalgias-pain-insomnia-fog-and-fatigue
[3] http://twitter.com/lumigrate
[4] http://www.lumigrate.com/forum/mariluz-bald-faced-video-plea-about-fibromyalgia-activisim-doctors-avoidance-media-needs#comment-768
[5] http://www.causes.com/causes/514018?m=9e4cc0c7
[6] http://www.lumigrate.com/forum/mariluz-bald-faced-video-plea-about-fibromyalgia-activisim-doctors-avoidance-media-needs#top
[7] http://www.lumigrate.com/user/login?destination=node/583%23comment-form
[8] http://www.lumigrate.com/user/register?destination=node/583%23comment-form
[9] http://www.lumigrate.com/forum/mariluz-bald-faced-video-plea-about-fibromyalgia-activisim-doctors-avoidance-media-needs#comment-769
Comments
Me and my bald face will go back to that rheumatologist and yes, I will ask him WHY he said what he said. And I think I am going to be more annoying than ever because I am going there armed with the knowledge to make this doctor re-think his position.
He's had it easy with me because I was always very well informed of the challenges I was going to face being a patient with fibromyalgia --- I told him I had found him through the National Association of Fibromyalgia's list of doctors and I wanted him to help me get well. I even brought pictures of me doing all sorts of extreme outdoors activities such as repelling down an 80 ft. waterfall, rock climbing, hiking, etc. I told him: "That's is my lifestyle and I am too young to quit". I also brought with me the books Food that Helps Win the Battle Against Fibromyalgia by Deirdre Rawlings and Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome by Dr. Rodger H. Murphree. I was very clear to him when I said I had chosen a holistic approach to treat the syndrome.
I also brought him all the vitamins and supplements I had started taking on my own (through my own research and of course everything I had learned from Deirdre Rawlings' book).
He took the time to look through the books briefly and also read the ingredients of the supplements I was taking. He knew from the very beginning who he was dealing with.
I really don't know why I went to him to begin with, because I knew there's really nothing he can do to make me feel better other than to give me some prescription drug; which by the way he insisted I should take; despite the fact of me telling him I had an adverse reaction to Savella.
I guess it was that little part of me that's weak and succumbs into the quickest fix out of desperation. The 5HTP and melatonin wasn't really doing anything to help me sleep. I had become desperate. I wanted that drug that would knock me out!! And there he was, with open arms with his prescription pad ready.
Yes I did take my Ambien, Xanax, Flexeril, Tramadol, Tylenol with Codeine...everything you name it!!! I was truly desperate. The sad truth is the drugs really didn't help me --- they just made me feel worse. I was a walking zombie in pain.
I wanted to detox my body from these drugs and started all over again with my vitamins and supplements, my diet, yoga, meditation....and all of a sudden BOOM, it hit me with a vengeance - the panic attacks, the migraines, the nausea, and the endless painful sleepless nights and days!
That's what took me back to him. I was having violent outbursts, irritability to the point of becoming a monster, with aggressive thoughts and actions (so out of character) I couldn't believe what I was becoming. I didn't want to hurt my family, the people I love most. Needless to say, he told me I needed to see a psychiatrist.
I am not a violent person nor am I a depressive, negative being - the total opposite. I knew what was happening to me was just a consequence of stopping the medications without weaning myself off them. Do I need a psychiatrist? Maybe so.
After our little discussion about avoiding coming out on TV to not have fibro patients driving him crazy, he escorted me out and told his nurse secretly about giving me a referral to a Psychiatric Centre. When the nurse was dispatching me in the waiting area, she whispered to me "here's the number for the psychiatrist" as if I needed to be ashamed to go to a psychiatrist?! I replied to her in my normal voice, one that could be clearly heard in a quiet office: "Ah, thank you for the PSYCHIATRIST (emphasis) number." No shame.
Like you said, these are my first steps towards activism, but trust me I will be taking HUGE steps now. I'm turning all my anger and frustration into positive ACTION.
I am certainly not one to lay down wounded....I am my own health advocate. This is why more people need to be encouraged to take advantage of educational websites like Lumigrate. EDUCATION IS KEY. Yes, indeed.
Thank you all for your immense support.
Love & Light
Mariluz
Mariluz Fontanez, cosmetologist with over 14 years of experience in the beauty industry. Mariluz holds a Bachelors degree in Communications; majored in Film/TV Production and minored in Public Relations. She was recently diagnosed with CFIDS/Fibromyalgia and it is now her passion and personal quest to put her skills to good use by making a huge impact in the media through an educational, fun interactive Fibromyalgia awareness campaign: "Beauty from Pain". Together with Dr. Mark Guariglia, Mariluz has created IFAC (International Fibromyalgia Awareness Campaign), a support group on Facebook www.causes.com/causes/514018 [5] with a very optimistic approach in health and overall wellness. Mariluz finds Lumigrate to be the perfect venue to bring light to this campaign and help so many affected by this syndrome.
Mariluz -- you're a wonderful story teller! Thank you for your openness. I feel that many MANY will be able to learn here at Lumigrate because of your generosity of time and spirit.
I think what is interesting is the years of difference between your and my experience -- I've been 'at this' for 20 or 15 years, depending on how you look at it. ... I was 29 when I was brought down in a limp and anxious mess with chronic fatigue syndrome, then made a full recovery which was lead by a chiropractor who subscribed to a diet that I now think put me into adrenal fatigue and lead to the fibromyalgia when I was mid 30s (along with other things, NOT just the diet). And here I am, 50.
You've only been 'at this' and 'with this' intensively for a short time relatively speaking -- under a year, if I remember correctly (though I bet you'll see it was creeping in chronically once you learn more -- I now can go back to my childhood times -- 'that ear infection at age six months, that likely was right after immunizations ....... hmmmmmmmm'). So YOU are experiencing what Dr Young presents about in the FREE hour long video on Lumigrate titled 'Health Management', where the patient is running here and there to doctor and doctor and getting frustrated. BUT it's not entireley a waste to go to a rheumatologist in case there IS something else going on and since generally they see a lot of patients with fibromyalgia, they will have a sense of what THEY THINK IT IS, and what to do about it. I'm actually pleased to hear they gave you a referral to psychiatry because that specialist might shine the light of knowledge from a different angle on things and you'll learn a little more from that as well. At least the rheumotologist was seeing the mind/body connection!
It sounds to me like there's a 'ramping up' of the nervous system that you're describing that I know I was helped for a while by the medications that affect GABA. Lyrica being one that is new and you only need to take 2x a day but it's expensive since it's new. I took neurontin longer and did better with it -- years I was helped with that. And I thought Ambien was a horrendously bad drug for ME, and loved loved loved Lunesta, but it was expensive AND I heard a doctor I was following, Jacob Teitelbaum, say at a conference that the cheaper, older drugs were just as good and he even specified Ambien, so I switched to it as I was needing -- always wanting, but last year was 'needing' to get my medical costs and all costs down as low as possible.
It's a lot to figure out what works for you -- and what I found is just when I figure out something that's working really 'peachy', then something shifts and I have to figure out what it is that's shifted and make an adjustment. For example, last year I was down to only being on a muscle relaxant at night and the gabapentin / Neurontin and I could tell something was 'too much', so I titrated down on one then realized it was the other that was too much and I stopped the one and was 'good' for a while. But I didn't stay 'good' without the muscle relaxant and so I started using it as a PRN instead of scheduled every night. And then after a while I realized I'd gone weeks and months without using it even. And now I only use it very rarely, when I get into a problem like I did with my back after lifting my dad in the last week of his life. THAT didn't fix the problem so then I went to a couple of my doctors and got humpty dumpty put back together again!
It takes a Village .... it takes quite a TEAM. I think you are going to LOVE what Dr Young presents about when we relase the podcast this week when we have it all polished up and ready for it's grand entrance. I directed the conversation to talk about the adverse childhood experiences work he has studied since he presented for his wife who had laryngitis a few years ago when she was going to guest speak at our Fibromyalgia Forum. When we were emailing with Adam the podcast draft after he gotten it edited ... and you can only imagine when you hear how something is going to be for the first time, or like when I saw the edited videos in the past as well, you go 'wow, we did good'! And then there was a buzz noise that made my heart rate go to 200 I think, that he has edited out upon my request. But Dr Young responded in his email 'BTW, Mardy, that heightened startle reflex is a symptom of adverse childhood experience and all that goes on with the brain'. He's provided a written explanation that we can post next week as well. SO STAY TUNED TO LUMIGRATE, we have LOTS of NEW STUFF COMING and then hopefully really GRATE SOLUTIONS which will have the input of our medical team -- Wm Marcus Spurlock, MD, Jerry Rand, MD, Deirdre Rawlings, ND, PhD, April Schulte-Barclay, DAOM as the 'typical team players' on an integrative team, but then also Kohava Howard for YogaDance, Analii Cunningham for movement strategies, Bryce Christianson, DC and hopefully your Dr Mark, the DC there in your area collaborating together on what they do with us that helps, so that other doctors and providers can read, watch, listen and learn to do as well as we are lucky to have access to.
Yes, Education is the key and I'm so proud and pleased to have Lumigrate in place FOR YOU, Mari -- and the many, many others who are also here learning all the time! ~~ 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 [3] 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!