Hello everyone!!
When Mardy first set up this area for me to write and I saw that she called me an 'activist', it took me back a bit. I have visions of Black Panthers, groups sitting and holding hands, others hugging trees when I hear that word, and really, could that be me? On further thought I realized that yes, I am an activist. First and foremost for myself and then for the fibromyalgia community.
So what's the first step in this? Being the one in charge of your own health! Be an activist for yourself!
For many of us with fibro or any other chronic illness, we knew more about our bodies and symptoms than the researchers out there did. We all have likely had the experience of a doctor being disrespectful and telling us to lose weight, get a hobby, stop whining.... I don't have to go on, do I? And we took it and kept going back for more. After all, it's "The Doctor!" A person we've been taught to respect and listen too. So we did.
But why? Being a doctor doesn't make one invincible. Fibromyalgia was misunderstood for so long, and the doctors were telling us what they were told, but we knew better. And now we ALL know better. So it's time to assert ourselves!
We must educate ourselves on whatever our illnesses are. We have to take advantage of the internet and learn all we can about our illnesses and options for treatment. We need to take advantage of websites like Lumigrate where there are nutritionists, naturopathic doctors, physical and occupational therapists, and many other specialists and learn what all of these folks can offer for treating and managing our illness. Then, we have to educate our doctors!
We need to realize that after a doctor leaves med school, their only ongoing education is their required continuing education, and for some, they will never take a class about fibromyalgia or other chronic illnesses. So then the only information they get is from the drug representatives who keep them stocked in samples. And it's easy to guess that any information they share with a doctor will be self serving towards their medication. Did you know one company acknowledged telling doctors that one particular medication was a "cure" for fibromyalgia? Is it any wonder our doctors get frustrated with us? They gave us "the cure" and we still aren't better?!?
Then we have to talk WITH our doctors. Share some of what you have learned, explain the holistic treatments you are trying (ALWAYS discuss any vitamin, supplements or herbals before starting them with your doctor and pharmacist if you are on any prescriptions, they can interact negatively!), exercises you are doing, foods you are eliminating, and how that is going. Talk about any meds you are currently on and those you have tried in the past. Get your doctor on board for treating all of you, not just handing out a new script and an appointment in 3 months.
And be prepared, some doctor's won't be interested in hearing about these things and will try to minimize using complimentary treatments. That's when we have to get tough and walk out sometimes -- some doctors just aren't ready to change in time to help you! But at least you've maybe paved the way for someone in the future. Think about it this way, we are paying the doctor for a service, the same as any other consultant we hire. And just like we'd fire a maid who didn't clean, we can and should fire a doctor who won't work with us! It takes more than a drug to treat fibro, and it's critical that our doctors are on board.
I take interesting articles to my doctor. I tell her about new drugs being studied before she hears of them elsewhere. My doctor now calls ME to get information on how to treat some of her more difficult fibromyalgia patients! I refused the latest FDA approved medication for fibromyalgia due to the issues of possibly increasing heart rates due to my history of a heart attack. My doctor really wanted me to try it, and said all of her fibro patients were on it and at that point, the FDA did not have any information about the heart rate issues on their site. Since then, all of her patients have come off it, and a couple did have heart rate or blood pressure issues and this is now a very widely known side effect. My doctor works with me in every aspect. She encourages thinking outside the box of allopathic treatment and then in turn passes on to her other patients what I give her.
We ALL need to be an activist for ourselves! It's why we are in the middle of Lumigrate's model, we are in charge of our health, if we so choose. It means being responsible and proactive, but really, isn't it worth it?
Be gentle on yourselves everyone and be proactive!!
Links:
[1] http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee/94975642116
[2] http://www.lumigrate.com/forum/activist-we-all-can-be-one#comment-686
[3] http://twitter.com/lumigrate
[4] http://www.lumigrate.com/forum/activist-we-all-can-be-one#top
[5] http://www.lumigrate.com/user/login?destination=node/524%23comment-form
[6] http://www.lumigrate.com/user/register?destination=node/524%23comment-form
Comments
This cracked me up to initially read that Aimee's head wasn't computing what I was meaning by 'activist'...
I am SO very pleased to see people are 'getting that 'You model', which Dr Young and I scribbled out on a white board many years ago together. The very first doctor I spoke with when I formed my own contracting company for OT was a rheumatologist who didn't know I had fibromyalgia and said 'what I really need is someone to see my patients with fibromyalgia' when I was marketing to him about general OT services for those with hand and body issues from arthritis (home assessments, for instance). He drew out a model of a patient having a team and going to one provider every month so they were being followed. I remembered that and later when meeting with Dr. Model, er, I mean Dr. Young (who thinks in models and diagrams in an amazing way), we came up with a draft of what graphics artists keep producing for me with Lumigrate.
Ironically, that's basically what we're looking at today for patients with complex medical conditions with the new 'patient medical home' model that primary care will go to over the coming days and years in the United States. I'm pleased to say I'm active in a portion of bringing that to people and hope to have a significant role.
An early version of the You model, (just for fun, the final version is on the Home page) in case anyone wants to print it out here and take it to their provider is:
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!