1) Be patient with yourself and others.
2) Get a second opinion.
3) Keep looking until you find someone empathetic and preferably knows the "old you."
4) Be open minded. Most are learning about this as fast as you are searching on the web.
-----------------------------------------------------------------
BrokenBrilliant wrote about A Brilliant Opportunity amongst the community of people frustrated like us. I completely agree with his take towards the resources of the world wide web - and he and I have taken a similar route to begin our educating journey about TBI through the web and our blogs:
An opportunity lies before us, to come together and pool our resources and offer one another help and support — largely in the form of information that’s distributed across the world wide web. Our info can go a long way. We can do for ourselves, what others cannot do for us. So, let’s do it!
However, I do strongly disagree with the statements he made about the medical community not having any interest in helping people like us. I know it was written out of frustration and anger at the system - and I have had the same thoughts and angry feelings about it all as well. But my love has always been to help other people, my career has always pointed towards healthcare, and I genuinely feel most bad differences (in healthcare and in the world) can be accounted for by having a lack of adequate education.
For the sake of condensing my post - here's what I wrote as a comment... it was easier to cut and paste!! Cheers :)
Hey BB, thanks for the comment! I’m so glad you’re back in the game. I took a short sebatical myself… and may need a little more time before I can fully collect my thoughts on your recent postings. But I’ll start a little with this one…
I couldn’t agree and disagree more. I too had some iffy experiences with the wrong practitioners… and was quite shocked after devoting the last six years of my life towards working in the American healthcare system. Needless to say, I was greatly disappointed!!
But I’ve found a lot of things in my own research that have recently been published from the medical community - one document released July 2008 (wowly-recent!). I believe this relm of concussion is a new ‘hot spot’ for research; and those who are unaware of how dramatic the consequences of a concussion can be, they are now diving in to find out. I want to firmly believe that most practitioners just haven’t been presented with enough adequate research to make an incredible dent in the way they practice medicine around concussions and mTBI.
This doesn’t make the problems less warranted for medical advice/treatment. Nor am I excusing practitioners that seem to lack the gold standard of empathy needed in any practice. However, I’m suggesting that the education of what’s really going on, or how to really treat (medically, not just respectfully) patients like you and I has just begun to gain some ground.
Your search for all this knowledge is right at the core of where medicine is heading in regard to the brain and concussions. Soon I hope to post some articles for thought - and I’ll put up the one I mentioned earlier. I also hope to eventually use my doctorate to educate these practitioners as more information is available.
Keep diving into information! Some is credible, some- well, not so much, although definitely thought provoking! I can’t diffuse it all, but I was certainly trained hard enough to look at all the variables and relate published context to real-life situations and actual populations. There are reasons the system works as it does.
I read everything you write and I find your desire to educate empowering. Keep it up - and maybe together we can hit the points that need to stand out and that can be validated amongst a medical community. I have the educational background, I’m close to finding the respectable audience to begin this ‘education-debachle!’- but all is wasted without credible information to relay!
Talk soon! NEdream
1 comment:
Hey NEDream -
Thanks for the reality check on that post of mine. I was coming off a period of feeling really marginalized by the medical establishment, helpless, frustrated, abandoned, discouraged, you name it... quite self-pity-full, in fact... and as my temper has always been an issue, I guess it got the better of me one more time.
I actually do feel for folks in the medical establishment who have to deal with a lot of stuff that's mysterious and quite unknown in many ways. I think part of the issue is that there just hasn't been a lot of great experience-based reportage "from the field".
From what I've seen, doctors get folks coming to them when they're in distress, then they treat them a bit, and they go away, and if the doctors do their jobs right, they never see those patients again... which is problematic in itself, because then how can a doctor or a nurse or a pharmacist or a therapist or whatever other care provider is involved, find out how well they did their job?
There's no reliable feedback loop, a lot of times, and that must be a total bummer for a lot of these folks.
I do feel for them. It must be a terrible situation to be in.
So, I guess my mission of sorts is to fill in the gaps I see. I'm not degreed -- my tbi-related difficulties put finishing my college education just out of reach (I may go back and finish up, yet, 20+ years later), and I don't have the professional connections and cred to gain entrance into professional circles. But what I CAN do, is record my own experiences as a successfully recovering and extremely high-functioning mtbi survivor, who refuses to miss out on my life, just 'cause I've gotten banged up a bit.
It's my hope that, while not double-blind controlled-clinical-study based, my reports from the world of post-tbi life may do some other people some good. Including medical professionals who spend their lives seeing the worst of the worst and rarely get to see the best of what they contribute to.
Cheers
BB
Post a Comment