While talking to Dr. ANS about treatment options as we move forward, we had an interesting discussion about his role as my doctor and main specialist.
I'm a big advocate for, well, advocating for oneself. I believe in listening to your body. I still hold true to the statement the first doctor at Hopkins told me to live by:
"Listen to your body. And don't take no for an answer."
I believe in making sure I ask the right questions, that I communicate well with my doctors and that I do my part to manage my health and be a good patient.
I am in constant communication with Dr. ANS. When something doesn't feel right or a medication is causing me problems, I email him right away and he emails me right back.
Early on in my illness, I didn't have a team of doctors and healthcare practitioners like I do now. I didn't have a group of people looking out for my best interests, and I had to do most of the work of figuring things out on my own.
Thankfully, I had enough of a science background from my degrees at Davidson to pour through medical articles and understand the research well enough. I had parents who could go to appointments with me and help me problem solve. And, in general, I'm a very good problem solver.
Still, a lot of times I felt like I was just shooting in the dark trying to figure out what to do, or what to try, or what doctor to see.
As I was talking to Dr. ANS during this visit I mentioned that in recent years I have stopped participating in support groups or forums, that I have stopped doing research into things, and that I have stopped trying to follow all of the news that is coming from various organizations about Dysautonomia and Chronic Fatigue Syndrome.
This doesn't mean that I don't continue to keep my ears open or research things I am interested in, but it is no longer my full-time job.
What is different is that I have a team that makes me feel safe. I have a team that I trust to keep their eyes and ears open for me. I don't have to obsessively research the options for gastroparesis because Dr. GI is already doing that for me and entering in to each appointment with a plan before I even arrive.
Dr. ANS responds to my emails and questions and, when applicable, he sends me research articles to read. He keeps me abreast on the research and medications that he feels are relevant to me.
While I was feeling a little bit like a slacker patient when I mentioned that I no longer engage in these forums or research activities, Dr. ANS praised me for doing this. He said: "That's the way it should be. It's my job to sort through the scientific research and figure out what is really good science and what isn't. It's not your job to try to figure all of that out. It's my job to take all of the information that is out there, sort through it all, and figure out what can be helpful to you. I don't want you to have to do all of that, nor should you be."
There are things that I don't have the skill to sort through or the access to--for example the knowledge that Dr. ANS has that some doctors are just good at making a name for themselves and getting funding--even if their research isn't as solid as it should be.
It took me a very long time to let go of my feeling that I had to 'figure things out on my own' or that I was 'being a burden to my doctor by asking him to do so much work on my behalf'. But once I let go of all of that time I spent on the forums and the researching, my stress level decreased dramatically.
I already spend what I call my full time job working on my healing and dealing with what I need to do to manage my health, so letting one more thing go feels fantastic.
While Dr. ANS separates the wheat from the chaff, I can use my energy to live life. I also have tremendous peace after a decade of having him as my point guard that he truly is always looking for what might help me. He's proven it over and over again. I don't need to be hyper-vigilent anymore and that is invaluable.
That's what it means to really have a point guard as your doctor.