I have had a crisis of faith — albeit a minor one — over the past ~10 weeks.
Thankfully, the world righted itself: Bristol Palin did NOT win DWTS.
I have had one other thing going on to keep my attention lately. I had shared with you my crazy journey with mysteriously low potassium causing cardiac symptoms here and here. Well, once again, Divine Intervention brought me to the ER at precisely the correct time: when a young doc noticed my combination of symptoms for what they are: hyperaldosteronism. Otherwise known as Conn’s Syndrome.
I have had only one appointment with the Endocrinologist so far; I go back next week to learn, based on the results of the tests being run right now, what the next steps will be. Basically, we need to figure out what is causing this problem (to determine whether it’s primary hyperaldosteronism or secondary hyperaldosteronism), which will then dictate how it is treated.
The relief that a respectable, card-carrying member of the AMA not only believes me and acknowledges my symptoms (quite a few docs haven’t…), but can actually validate that I do have an actual condition that can be treated — well, that kind of medical advice makes me happier than I can express. But as huge a deal as that is, there’s even more to the silver lining of this rotten storm cloud that’s been hovering over me for at least a year (probably longer).
Let’s be honest: Google is a wonderful thing. I know the politics and the strangleholds and the silos that can be created by big business of any kind. But a tool that I use a minimum of a dozen times a day, and that never fails me? I’d be a good old-fashioned rat-fink if I didn’t admit that Google really does make my life better.
So, how could my hyperaldosteronism have anything to do with Google? Well, on a macro level, there’s the basic education component. But on a micro level, Google led me to a proverbial goldmine: the Hyperaldosteronism group of Yahoo Groups.
‘Yeah, yeah, yeah,’ you’re thinking. ’Big deal. Whatever. So you’re part of/a subscriber to a “group”.’
But it IS a big deal! The honesty and sharing and validation and suggestions shared via this group are powerful. This synergy is one part, the comfort of caring friend; one part, support group; and one part, medical education. There is a retired doctor, Dr. Clarence Grim, who posts frequently in this group — I bet he had 15 posts today alone — who worked with the doctor who originally discovered this syndrome (Dr. Jerome Conn). Dr. Grim helps folks better understand the disease, and provides information you can share with your physician, and questions you can ask, to arrive at the best possible treatment for your particular version of the disease. On the group’s webpage, you will find medical papers, published articles, even dietary recommendations that Dr. Grim has shared, all in the interest of good health.
And as far as I can tell, NO ONE is paying him for all this advice, direction, and education (though he offers to consult for a fee). There doesn’t seem to be egomaniacal component. No insurance company is directing or controlling the flow of information, or trying to package it or deny it or ignore it in some pointed, counter-productive way.
If this is the future of medicine — medical professionals working in true collaboration with patients, educating and guiding them to be an instrumental, critical factor in the decision points of their own health — then I think there are some truly amazing things to come on the medical and health frontiers. Seeing this kind of dialogue has actually renewed my faith in human beings. Which after listening to any given newscast, I really, really need.
Yes, such a beautiful thing puts the idiocy of Palin-o-rama in proper perspective.
{ 2 comments… read them below or add one }
I am so glad that you were able to find what you need exactly when you need it. There is comfort often in finding out you are not crazy but indeed sick. There is even more comfort in finding out you can be fixed for whatever it is that is ailing you. I am glad that you were able to find what you needed.
I also can say that my entire career over the last 6 plus years has been an attempt at getting the right information to the right patient in the right format. We are making great strides and adding things like education modules to our systems. I think with the growing shortage of doctors and nurses and the growing ill population you will see more of this. It is just too bad that with most things it took a crisis to start to address the issues.
Your prayers have been answered dear one. Your faith has been tested and again shown to be strong and true. You are truely blessed.
Sounds like you are headed in the right direction.