Saturday, December 15, 2012

Patients Are the Answer

I'm thrilled to report that, so far, I'm paranoid with delusions of flu. Let's hope it stays that way.

Today we drove almost two hours to a family meet-up for the neurological thingamajig the kiddo has. It was edifying, and I am so glad we went.

On the way down, all I could feel was the weight of my other obligations pressing on me. I couldn't remember why I wanted to spend two hours in the car with a screaming child (she hates the highway, it's a sensory thing for her) to meet people I didn't know that we probably had little in common with given that my kid is allegedly on the 'mild' end of her disorder's spectrum. I have so much work to do at home, it seemed like a poor use of my time to go.

Then we arrived and all the shared real life experiences opened my eyes. I learned things I needed to know. I realized that being discharged from OT/PT is not a discharge from the diagnosis. We still have work to do and a road ahead of us to navigate.

I mean, I kind of knew that, but thought we were in an okay place. She's within the realm of normal on pretty much all the motor stuff now.  She won't be crafting pop-up books or Star Wars snowflakes (it's a real thing) any time soon, but she can meet the criteria of 'motor normal'.

And then one mom showed me how some of the recent behavior issues we've been trying to resolve were all hooked into our kid's neurology. That was a big light bulb and will inform our parenting moving forward.

Patients live with the diagnosis. Doctors only see it in an office visit, a very controlled environment. Patients are much more knowledgeable about what the disease really looks like naked and how effective various medical treatments are. When they get together and swap information, they change lives.

It's really amazing when patients are on the cutting edge while mainstream medicine is behind the eight ball. I think we'll see this phenomena more and more thanks to the internet. Eventually patients aren't going to take this shit anymore and will coordinate online in such a manner that they can't be ignored. That will be an interesting day.


2 comments:

  1. GLad to hear you're delusional

    So true about the rest!!!

    ReplyDelete
  2. Glad you had a good meeting. Did I miss what the disorder is? I don't remember...
    TAM

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/