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. 


Monday, July 07, 2014

What I Did on my Summer Vacation

I took a week off last week.

Like OFF OFF. the last time I recall having a legit VACATION, where I unplugged, and did not touch my work phone, or business e-mail, or call into just one conference call, or say I was “working remotely,”  Was probably when I went to Vegas for my birthday in 2011.  that was probably the last time I felt so refreshed, empowered and rejuvenated by a week off.  And this time, I didn’t go ANYWHERE.

I simply took the week and attacked everything that was stressing me out, and took care of me.  the first big step of this was not taking classes this summer, then once my fellowship finished it was just work.  I’m getting unfortunately accustomed to not having school work, so going back in September is going to be rough.  I have also made some choices however, that I think will benefit my schedule once school does start back up.  I have no classes, or obligations past 5:00 pm, once Fall comes.  Although it gets dark at 4 in the winter, there will be no chasing down transportation, or not getting home until 10 after my classes.  Owen and I can still maintain a reasonable typical work schedule, which I’m psyched about.

SO. What did I do on my summer “vacation?”  Nothing, and everything!

I read whole books, in record time.   For those who think I’m some politically minded, health care addict.  Stop reading this right now. And go away.  When it’s up to me, I’m a shallow, materialistic Vegas party girl.  You know what I read?  Here are my literary confessions:

My Life in Loubies:
A real housewife tale of a shallow chick who wants to marry into money to maintain her shoe addiction, but actually gets an interesting surprise- I was not expecting (and I usually predict these things, because I could probably just write one…)  

Jodie Sweetin’s (that’s right- Stephanie Tanner) memoir about her struggle with addiction and partying in the Hollywood Hills.  I was obsessed and finished it in 2 days.  Full House will never be the same, but yea.  It was good. No regrets.

And the hilarious, superficial, tongue in cheek, “I could’ve written this”  White Girl Problems.  Based on my favorite Twitter account, I buzzed through this one, flipping through my kindle problems on the T, in the back of black uber cars, and ok, even during the Red Sox game.  So sue me.

Along the self care route, I also got my hair and nails done, and get this-  I had lunch with FRIENDS.  TWICE!  And it was “let’s get an overpriced sandwich from the snack bar before class.”  It was afternoon margs, and actual sit down and talk about each other’s lives meals.  I truthfully do not think I have done that since I moved here.  It was AWESOME.

After one, we went SHOPPING!   We plotted which Michael Kors bag we’d get, whether or not it was on sale, swooned over Burberries we’ll probably never owned, and got foundation matched in Sephora and got matching mask variety packs.  It was a true, long overdue girls’ day that just put me on cloud 10.

The other girly outing was centered around interior decorating.  My neighbor, LEND classmate, and dear friend and I did some damage at TJ Maxx  then went to town on the Element Studio.  She made magic happen on our shamefully small closet, I put new 750 thread count sheets on our bed, and we hung things on the wall.  It looks like people live there now, and are not just hoarding a bunch of boxes.  Owen and I are SO happy.  I’m so proud of my little home!  It’s not longer an overpriced studio that was “all we could make work.”  It is our HOME!

Part of the reason (other than the fact that I was keeping myself up at night having OCD about all the stupid piles all over the apartment) was that Owen’s family came to visit, which was primarily my reason for taking the week off at all!  And man, did we see the city!  We went to a Sox game, a duck tour (so fun!!!! Can’t believe it took us so long), went to the aquarium, are planning to eat in the North End, and spent the fourth on a harbor dinner cruise!  It has been wonderful, and it is so nice to really know where we are now, and how to live here!  It was such a good feeling to really host people, and show them our city, and not just be like “well… I think this is nearby, it just may take us all day to get there.  We didn’t even go in a circle ONCE.

In addition to all of the above, I accomplished one other REAL success.  I managed to address, attend, or schedule, every. single. medical appointment or obligation that I had outstanding.  We’re talking, PCP, eye doctor, dentist, iron infusion, GI speciality, started medicine for completely life ruining stomach issues, and I even took the ultimate self care measure of getting a therapist, who I managed to see TWICE, just during my time off.  I believe in being super transparent about addressing mental health needs, because EVERYBODY has them.  It has been fantastic, and I have not felt this good in a long time!

So bam.  For all those times that there were not enough hours in the day, I finally just buckled down and stopped making excuses.  I can check all of those off the list, and basically, I should win some sort of prize.

Today I am back to work, but I am calm, comfortable, tan, and confident.  I am ready to lean into my new role, and this second half of summer.  I am taking care of me, and it is amazing how the rest can fall into place.  One thing I have learned over the last few years, is, as urgent as everything may feel, at the end of the day, if everything else were to go away, all you have is yourself, and if you’re not happy in that solitude, you need do some re-arranging.

Here’s to a happy, healthy, zentastic summer.


Saturday, July 05, 2014

A Night in Room 506

Things have really been picking up for us!  Owen is doing an internship, supporting with fundraising, and social media.   In addition to my “Day job,” which is undergoing a serious transformation because the whole organization is restructuring (a good thing), Face Forward is in full swing, and it looks like we are going to have an amazing turn out this year!!

Because of all of this, we have had some days where we had an obscene amount of things to accomplish.  One day, a couple of weeks ago, I had to bounce from meeting to meeting, and then switch gears for an event, and then a concert that Owen and I were going to, at House of Blues.

I must say, I was really proud of how this day went.  It was the first time in a long time, I have had to be in my multiple roles in one day, and I was able to feel fully present at every single piece of the day.  Then, at a certain point, I made one last phone call, and made the decision it was time to put it away.  Owen and I had the opportunity to debrief a little and unwind at the open house, I wisely remembered to actually print our tickets for the concert, and we took the train down to Fenway.

Come to find out, the concert started an hour after I thought it did, so we actually had even more time, but it worked out.  We had awesome “ADA” seating, high up, with a private bar, and a great view.  We weren’t next to the stage this time, which worked out because parts of the concert were SUPER loud (or I’m just old.  Those kids and their damn rock and roll!)

It was a fun night.  I found myself doing a lot of “Oooooh! I remember this song!  I didn’t know they sang this!”  And enjoying a ton of high school nostalgia, and basking in chart toppers that graced the ORIGINAL Now Album (yes, kids, BEFORE there was even a number in the title… I think they’re up to 51 now?)


After the show, we both felt remarkably energized, and I was starving.  Usually, when I’m going to a show, I like to get dinner before hand, and transition a little better than bolting from a work event, but we had done it, and now we wanted food.  No big deal I figured, these crazy kids go out all the time and now the T is open late!  Let’s do it!  (Side note- we did not even have a drink during the concert, all of these decisions were made at full mental capacity…. Just saying)

We settled into one of our favorite places, Boston Beerworks, and enjoyed sandwiches and their epic sour cream and chive fries, before heading back towards the B line to go home. 

We arrived at the elevator in Kenmore Square and hit the button.  It didn’t light up.  We hit it again.  And again.  Nothing.  Both of our phones were dead at this point, so I asked a kid nearby what time it was, and he informed me it was 12:38.
“I don’t get it.  It’s open later, isn’t it?”

Then we realized the gate to the stairs leading to the train was also closed and locked.  Oh no.

Of course, at this point, I also had my old/new completely NOT portable scooter, so there went any idea of ubering, and we also had NO phones to even complete such a task.

The funny thing is, a couple of years ago this probably would have ruined our night, caused panic attacks and we would’ve made some foolish decision like walking the two miles home because “it’s not that far.”  But at this point in the game, we just looked at each other, laughed and went “What the hell are we supposed to do?”

Luckily, we were very centrally located.  We were still near all the bars of Fenway, there were other people around, and there was a hotel right across the street.

“There’s a bus that stops here.  We can ask the hotel where it goes, at least.  There’s that.”

Without having much other choice we headed into the (ritzy, historical) Hotel Commonwealth to beg for a brief lesson in MBTA since we have only taken a bus once in the 2 years we have lived here.  Luckily, we did discover that the hotel was accessible, the woman was pleasant, AND it smelled delicious.

She looked up the bus schedule and told us that there was a bus arriving in 6 minutes, which would eventually end up a couple blocks from our house!  Perfect.  So we went back outside and waited.

Soon a bus pulled up, far away from the curb, and we watched anxiously as the driver turned off the ignition…. Put his coat on…. Shut the doors to the bus…. And left.

The bus was silent, and dark. The street was dark, and it was almost 2 a.m. at this point.  

We looked at each other.

After thinking for a minute we concluded we had two options.  “Well… the hotel is right there, so let’s see if they can call us an accessible cab, and we can actually get home.   Or, I mean, I guess we could just see if they have a room.”

Here we were, two miles from our home, both having to work in the morning, completely stranded, with no way to get in touch with anyone.  Planning FAIL.

We headed back into the hotel and waited sheepishly while the woman at the front desk finished with the phone call she was making.  Once again she was super kind to us, and called about a wheelchair accessible cab for us, before even asking if we wanted to stay, which I thought was great. 

Unfortunately, the accessible cab would’ve taken “around a 2 hour wait.”  TWO HOURS. On a Thursday night at 2 a.m.  What?  I also had this terrible image of an “accessible cab,” arriving, at 4 a.m. and not actually being what we needed, and we would’ve had sat there for 2 hours, when we could have been, oh you know, sleeping.

Had it been early, we probably would’ve challenged our city and seen what arrived, but at this point I just wanted a bed.

“Ok then, do you have a room?”

“We have one room left actually, with 2 beds, but it’s not accessible, is that going to be a problem?”

No, Ma’am.  The problem has already occurred.  The problem would be sleeping in Kenmore Square, since we apparently can’t read fine print on new transportation policy.

A few minutes later we were checking into a GORGEOUS, historical, non- ADA room at the Hotel Commonwealth.  Truth be told, the “lack” of accessibility really didn’t matter, because the room was huge. 

The other funny thing, of course, cause… oh hey universe, you so funny.  The room was #506.  Our apartment number?  506.

Almost home… so close, but SO FAR!

Without having toothbrushes or any other clothes but those on our back, we set the alarm clock on the bedside Kindle Fire, and climbed into the cloud of an Eloise style bed, and passed out.

And slept like a dream.  When the sun was up, we turned around, checked out of our room, and headed home to begin the day.

I’m considering a business investment, because the hotel got a stellar review.

Our solution?  Crazy? perhaps.  Impulsive?  Maybe.  But we were able to make it happen, it meant that we got home safely, and were able to take care of ourselves to be able to be productive the next day.

Lesson learned.  No regrets.

Tuesday, June 24, 2014

Healthcare, Hotels, and Horse Racing...

Well.  I’m done with everything!!! And by everything, I mean,  I’m not taking classes for a couple of months.  I’m JUST working, and planning a summer conference!  Hooray!

Before I jump back into real time, of all that’s been going on, which frankly, you don’t want to hear about, or is just me figuring out how to have “down time.”  Mostly me playing Farm Hero Saga, and talking about all the things I feel like I SHOULD be doing, then realizing the world won’t end if I don’t do them.  It’s thrilling.

So let’s jump back to Mid-May, when Owen and I were going to present at a conference in Baltimore.  We were moderately excited for the quick trip, and made a point to stay the extra night to make it a mini get away, since it’s a lot for us just to fly somewhere for one night (or in and out the same day. ugh.)

As fate would have it, Scootie took her last scooter breath the DAY before we were supposed to leave.  This whole process will be another blog post, but basically, as I was heading to work, she stalled in the middle of the road (she had struggles with intersections), I pushed her the four blocks home and then even after giving her a full charge, there was just nothing.  A day we all knew was coming, but OF COURSE it would happen before we needed to get on a plane.

Traveling with AND without a scooter is a blessed curse.  Traveling WITH a scooter, is easier for me.  Well, easier for my legs.  We can zip through airports, explore cities with less limitation, and it doubles as a luggage carrier.  But it also means we need to hunt for accessible cabs, be more aware of curbs, elevators, etc, and just, have a giant motorized beast to account for.

Without a scooter, I can jump into cabs, sit anywhere in a restaurant, dart through crowds with reckless abandon.  but that’s about where the joy ends.  When I don’t have a scooter, I realize how much difficulty I really have getting around.  My legs are TEENY.  And I move slow, and everything is high, and I get tired.


but alas, there was no choice, and we left for Baltimore with no scootie (may she R.I.P.)

Of course, as our “vacation” luck would have it, the weather was terrible, and upon check in we elected to do my favorite travel activity, the “Post check in nap.”  This serves many purposes!  Not only to rest up before the events of the evening, but to properly assess the quality of the bed and compare it to other places of hospitality that may be superior.

I had stayed at this hotel before, and as soon as we checked in, I remembered all the not so wonderful things about it- how I could hear everything the family did and said in the room next to me, and how I had to call the front desk every time I wanted my thermostat adjusted because I couldn’t reach it myself.  

So back in the moment- we take our nap (awesome, btw).  And as we are waking up we hear what sounds like someone DESTROYING the ice machine. I honestly thought we were going to exit our room to a hallway of ice, since it was right next to our room.  Soon, we realized the people in the room next to us- courtesy of the paper thin walls, were indeed filling a COOLER with ice, for shenanigans that were to occur that evening.  We thought nothing of it at the time.

Being pretty hungry at this point we began perusing Yelp to find somewhere to eat dinner, since we had already eaten at the affordable restaurant in the hotel.  Within minutes, Owen came across a place called MAISY’S!  So duh.  We had to go there!!!

We knew it would be an adventure, getting anywhere without Scootie, but I refused to spend the night sitting in the hotel when the day had turned out to be pretty nice, and we had designated this a weekend of recreation, in addition to the conference.

What we learned was that- if you are someone who values your time and and energy- do NOT use Google maps.  for the love of Steve Jobs, just use Mapquest.  We killed about an hour trudging in the wrong direction before we realized, Maisy’s was actually like four blocks, a straight shot from our hotel.  Up a hill, of course.
So we trudged.  There were a couple of times that I began to doubt myself and thought “Why don’t we just swing in to Subway… cause it’s right here.”  But we didn’t.  On this journey to Maisy’s, I also realized a couple of things, some of which will be saved for another blog.   The biggest was that- I NEED scootie.   I often over-estimate my own ability, and since I went so long without using any mobility equipment but my car when I graduated college, I had sort of convinced myself that it was a luxury- that it simply increased safety, and saved time.

After a much needed rest and dinner at Maisy’s, we trekked back to the hotel, for what we THOUGHT would be a restful evening.

We settled in for the night and after laughing to the point of tears at the ridiculous billionaires on House Hunters International:

Home Buyer: *sigh* I just don’t know if I want to have to pay a staff.  Is it really Spanish enough?
Owen:  Spanish ENOUGH is a must have? I just want to use the bathroom without having to crawl!!

...if you can’t laugh about it, just go home.  now.

Even though the party was over for us, the cooler filling boys next door were just getting started.

Mind you- I do not consider myself a prude.  I have had my Vegas nights, and I like a night of cocktails as much as the next girl.  But I was over it, come 2:30 a.m.  I have never in my life called the front desk in the middle of the night before, but I guess there is a first time for everything.

Thanks to the paper thin walls, we heard everything from endless drunken obscenities, to an actual beer inventory being taken, to slamming into walls and talking about doing illegal substances.  It was when there was an actual attempt to come into our room thinking it was someone else’s that I lost my cool.

I also was exhausted and we both had to present the next day.  I called the front desk and explained we were not feeling safe, and I had never in my life experienced such disrespectful debauchery.   HOOLIGANS.

I was promised that security would address it, they never came, and we somehow fell asleep to Iggy Azalea’s Fancy on loop.

Needless to say, the next morning, when it was ONCE AGAIN put on loop at 8 a.m. sharp, I was already feeling less than enthused about sitting in a conference all day.  I have done this long enough however, where I just went through the motions and inhaled all the caffeinated beverages necessary to put on a good show.

Suffice to say this conference, was one that just left me shaking my head and wanting to quit everything.  It was disorganized from beginning to end (I still am not done getting all my paperwork in to get reimbursed…), and was one of those times where we just left going, “some people will never get it.”  I felt offended as a presenter when my words were twisted and others were put in my mouth, supplementing answers the audience WANTED to hear, versus the reality that needs to be spoken.

It was just rough.

But it also went hand in hand with a lot of the rough realizations I’ve had recently, that I am done reading the script.  I am done saying the words of others, and preaching the good intentions of all these “programs,” and “resources.”  If I am going to stay in any of this murky health care nonsense, it is going to be to speak the truth.  My truth, and the truths of others, even if it’s not pretty, and from what I’m gathering…. a lot of people and organizations are not ready for that.

So be it.

But now I was fired up.  I may not be good at the script anymore, but you know what I am good at? HOTELS.

So I marched my little angry advocate self down to the front desk in my little coral sundress, and kindly explained how I am not sure what horse racing shenanigans are going on, but what we experienced the previous evening was absolutely unacceptable.

The woman nodded, and knew exactly who I was talking about, as apparently they had already been rowdy when they checked in.  She confirmed they were not checking out that evening, which happened to be the evening that we had dubbed as “vacation,” and after the day we had, after getting only 2 hours sleep, I refused to let it be a repeat of the night before.

“Then we need to move, or we’re leaving.”

Within moments I was investigating a hospitality suite on the club floor.  “I’m pretty sure this will do,” I said, trying to hide my giddiness that it was a room about 3 times the size of our apartment with a full kitchen and gorgeous dining room table.   “However, we had an ADA room, so let me confirm that this will work for both of us.”  And I had Owen come and check it out, SINCE, in order to be provided with proper customer service and a pleasant lodging experience, we had to sacrifice our ADA accommodations (which were far from luxurious, but helpful).  Since we were exhausted, and only there for one night, we dubbed it workable and moved in.

harbor pic.jpg

That night was much better.  We had a sushi dinner and debriefed about the day’s events, and just let ourselves relax.   The bed was comfortable, and we had a great breakfast before flying back to our own little Element in the city.


but there was one other piece that cannot go unmentioned.  As you all know, it is sort of a theme in this blog, and in my life when the universe just provides irony that makes us go “haha…. very funny.”   And I’ve grown to appreciate it, and Owen recognizes it pretty frequently as well.

In addition to our swank suite we achieved, we also were granted access to the Sheraton Club!  A top secret hide away that you build up so much in your head, but is really an over air conditioned lounge with a buffet with fruit and some chicken dip.   But there was free bottled water, and a view of the harbor.

The reason for all the Baltimore Shenanigans, for those who may not know, was that the “Preakness” was also that weekend, which is the 2nd race of the triple crown.  I have absolutely no affinity for horse racing, nor have I ever attended or paid attention to any sort of derby.

But as we were snacking, and enjoying the harbor view in our “exclusive” Club Room, that we had achieved through a mission of advocacy, I overheard that one of the horses was named “Social Inclusion.”

We looked at each other and just shook our heads and laughed.  It was the perfect way to end the weekend.  Owen and Mal, with a view of the harbor, rooting for Social Inclusion.


I couldn’t have written a better punch line myself!

(for the record… it did not win).