Being Your Own Advocate Particularly Critical with Fibro

Dr Mark -- I really appreciate your registering at Lumigrate and writing!  As you like have seen, what you're discussing here is what is on the home page of Lumigrate, and basically the 'hub' of our model of doing the business of the occuapation of health education.  Remember, I'm an OT/occupational therapist, so I'm always reminding providers and patient/consumers that how you occupy your time is 'occupation', making money is 'vocation' and occupations include showering and shaving shopping, as well as how to be a medical consumer.  That's pretty unique of an OT to strike out to bring such a robust mechanism as a full blown website to the Internet in order to accomplish this task, but I felt it was necessary and I had access to some amazing providers here in my 'back yard of western Colorado' to get things started off with. It's been wonderfully inspiring and rewarding to see the net of valid, progressive providers coming to Lumigrate stretch across the country!  All the way to the NorthEastern corner of the US with you, I believe....

I'd like to clarify that sometimes the users of Lumigrate.com have been fortunate enough to stumble upon us when they're not all that knowledgeable about fibromyalgia.  I've been astounded at the number of people who were spending a lot of time on the computer learning but had never heard of Jacob Teitelbaum, MD, for instance!  To me, it's interesting that they're finding Lumigrate and me and haven't heard of him!  (NOT that I'm compaining).  You'll see that I have information about Dr T and links to his website, as he does have a wealth of information that fits my paradigm for education about health, fibromyalgia and fatigue.  If there's a good wheel out there, I want to find it and route people to it in a streamlined way and if someone sees something on here that interests them, then link out to delve deeper in that pod of information. 

Due to the overwhelming amount available on the Internet and the simplicity of throwing information onto facebook if you're wanting to 'help people', I've found people have sometimes become mired sometimes in less that the best information, unfortunately. Lumigrate DOES want to capture those people and rapidly get them up to speed, but you're RIGHT, we do cater to the more educated, "sophisticated" medical consumer who is interested in 'integrative medicine' and being proactive with their health. 

We offer solutions and suggestions for those that might be caught in a negative place (see the piece on 'going from shame/blame to letting it go' in the brain/mind (psychology) forum, as much for those who are questioning why it is there are SO MANY out there who are seeming initially to want to get better and have information but then they don't put that information into action.  There ARE reasons for that to happen, and it requires people quite knowledgeable about the psyche to explain, and just before I got on the computer and read your new post/above, I was on the phone with Chris Young about what I'd hope he could provide easily to Lumigrate (he's super busy), and had an email exchange today with Paula King related to 'resistance', resulting in her providing NEW content about that for us here!  (They are both PhD psychologists with Lumigrate.com who are some of the 'local talent').  

So everyone, Lumigrate just got GRATER with Dr Mark coming along I think!  Thank you so much for your interest in Lumigrate and taking the time to share with people here!  I'm going to put the YOU picture up here again for your benefit... a different version than what we put on the home page.  A picture's worth a thousand words.  ~~ Mardy  (PS -- Dr Mark: there is not 'chiropractic' on this model because they were created to be utilized within the integrative medicine center Lumigrate was part of it's first year, and they didn't have chiropractics BUT that's why we put 'who would you add' and 'your provider' on some of the 'advisor orbs'.

REALLY an important bit to read from Dr. Mark..... 

So what do you think?  I think Dr. Mark has a FANTASTIC point.   We must be our own advocates!  And that can be hard, after all, most of us don't have the training to read the complex studies or to interpret some of the findings.   But, there are places where we can get the information we need, especially someplace like Lumigrate, which brings to our computer monitors some amazing experts and their valuable insight.

One point though I want to really focus on for a minute:   "When a doctor is “dismissive” of a patient’s symptoms, it is understandable that they are sure to feel an enormous amount of frustration. On the other hand, a doctor who paints a picture of “gloom and doom” or scares a patient into unnecessary testing is certainly going to cause fear and make matters worse."    

THIS is why we must educate ourselves and know what our limits are.   I know so many of us have had the doctor say fibro is in our heads and I know how depressed that made so many of us.   We can't allow this to happen anymore.   The point Dr. Mark is making: that the more we know, the better we can manage our care, the more we can assert what we want to have happen, which in turn, gives us more control over our health care.   Sound like an integrative model of care?  

I started educating myself on fibromyalgia and ALL the various treatments out there a long time ago.  But it's just been in the past 5 years that I have had to really get firm in my knowledge and firm in my expectations.   I know people who won't tell a doctor they have fibro, for fear of the doctors response.   I've been there and done that, and who loses?  ME!    Since I've gotten comfortable in my knowledge, since I've taken charge of my health, I tell any specialist my various diagnosis'.   And I haven't had a single snotty remark, a single dismissing of my concerns or a single rolling of the eyes.   I have heard "it's just your fibro", but I knew better and I pushed for the help I needed.   And when I have been proven right, I count it as a win and a moment of education for the doctor.

Part of advocating for ourselves is educating ourselves.   Seek out the knowledge.   Ask questions of the GRATE experts here on Lumigrate.   Keep logs of your symptoms, food, medications, side effects so that you can see patterns as they emerge.   And take charge!

Thank you Dr. Mark for some grate inspiration this afternoon!