Friday, September 12, 2014

We Need to Talk. It isn't You, It's Me.

Today was a big day for me in healthcare

I asserted myself and said I wanted more out of providers if I'm going to be seeing them. 
Basically- I'm breaking up with a provider. But it wasn't anything serious. Metaphorically, we like met for coffee, once and I knew it wasn't going anywhere. 


Between just my life experience and my rapidly growing career in health care quality improvement I can't just go to appointments anymore to check them off the list.  I'd rather they not be on the list unless they are going to be helpful.

Especially if I am going to be billed for them or a provider is getting paid. 

Let's look at it this way. I didn't date in high school. Or college really. I knew pretty quickly there was nobody who could give me what I needed and I tend not to pursue things unless I know they're going to be worth it for everyone involved. Ain't no one got time for that. 

Anyway- like other things in my life, I am not ok with the status quo when it comes to my health. I have had providers who didn't want to change things because they were going "ok."  But what if I could feel BETTER? What if I had someone I could ask my questions to and who didn't just give me a blank state when I explained my condition. 

Well those people are in this city. I don't expect anyone to have all the answers. I don't even want answers necessarily, I just want to have the conversation!

Here's the dealio. There is now an army of kiddos who have MID and we have created quite a community. And let's face it, the sister and I are doing really freaking well. I don't need to know why necessarily- but shouldn't the doctors see the potential for this illness so all my babies can grow up and be amazing thriving adults like us? 





I'm also really involved in the genetics community and if nobody is talking about our condition nobody is going to want to research it.  A lot is going on in other countries- but ... We're not there are we? 

I'm a little nervous to go back to my old stomping grounds where some of the scariest things of my life occurred and just be there.... But I'm an adult now- and a professional, and it's time to get talking. 

So after this conversation I was told, "you should be talking to the people who are cutting edge." 

And frankly. I agree.


Let's do this. It's time to change the world, one micro villi at a time.  Even just for a few awesome folks.

3 comments:

Teresa N. said...

"...shouldn't the doctors see the potential for this illness so all my babies can grow up and be amazing thriving adults like us.."
You couldn't have captured my thoughts better! So many doctors don't (want to) realize the potential and capacity that people with our disabilities have to succeed in society, which is so bizarre! Wouldn't it make their jobs easier if they could recognize that? Love the post!! :)

Anonymous said...


You go Mal. I would think the 'ol hospital would be amazed who has developed into a young professional. Good luck and take no prisoners.



teamaidan said...

Preach sister.