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.

Wednesday, September 10, 2014

You were bound to Fly Away

The song in Starbucks right now, “You were bound to fly away…”

I can’t write this stuff.

Except that’s exactly what I’m going to do.  So indulge me.

There is no more denying it.  Fall is HERE.  You know how I know?


Also, I’m wearing my Ralph Lauren fleece, because it’s cold.  And school. 

Which brings me here right now. 

This semester I’m taking a class at the College of Communications at BU, which I’m so excited for.  I get to write again and be creative, and think about other things besides how sad and unhealthy the world is.

Unfortunately, this class begins at 9:00 a.m., which for anyone who lives in Boston, knows is just ridiculous to even try to be anywhere for which is why most people just sleep at their offices (or get there at like 5….) or roll in around 10:30 when all the BU students are already where they need to be, and the B line becomes normal again.

Anyway-  the Comm School is 1.8 miles from my house… it takes me exactly 30 minutes to get to work which is downtown, at the very last stop of the train, so why would it take LONGER to get 4 four stops?  BECAUSE THE B LINE.

But also- because Scooter.  So whereas an average BU Basic would be able to squeeze in any old spot on the  train so they have to force the doors close- I don’t have such a luxury.  Last week, I left my house around 8:00… thinking I might even have time to grab a coffee, and THREE TRAINS LATER, I am on my scooter, in the middle of hoards of people, not even in the parking spot, or able to reach the button to tell the driver when I need to get off.  Total anarchy. I honestly went all 2 years ago and almost started weeping.  But whatever. #Blineproblems.  We’ll get there.

I’m also moderately determined to not need to have the “accommodations talk” with my new professor.  I’m not afraid to talk to her, and I’m no longer afraid to ask for help, but I don’t want to play the “scooter card.” I’m sure it will come up, and honestly that’s what I want to do my story on for her class- about what it’s like for a non-walking individual to get around this god forsaken city, and how it is NOT the fault of MBTA, but the general public who think that standing in your way staring at you while you’re trying to get on the train is actually going to make the ramp come down. 

I just want to show that I got this… I’ve lived here for 2 years, and go to work on the B line every day.  If I have to leave the house at 7:30 every Wednesday then gross, but I just need to put on my big girl journalism panties and roll with it.

But for now… here I am.  Drinking a latte, writing on my sparkly MacBook, remembering who I am, and what I’m passionate about, in a CITY.  Full of opportunity and people who want me to succeed.

Seven years ago, the beginning of September, I sat in a coffee shop in the small town of Farmington, with a journal, and tried to convince myself it was the same thing.  It wasn’t, and I knew it… but it was a step in the journey.  And here I am.

There is so so much more to write about, as I venture into this fall, feeling like the best Me I have ever been, but I just had to capture this moment and share it.  For all of my young college almost graduates who are cranking on your last year, just remember- the dream is out there.  You just gotta find it… and it may not be what others think it is.  Keep on, keeping on.

Love you all.