I have been attempting to order DVD copies of my latest test for one week now.  I have called two offices to have them help me, left voicemails at the number I was given for the Echocardiogram desk at Columbia and NOTHING.  It is a seemingly impossible fete!

You must go in person to actually sign for these copies which I am aware of and ready to do BUT I wouldn’t even know where to go at this point.  I have been sent in circles.  Why is this so hard?  Why hasn’t anyone called me back?!  What is the problem?!

I am in a dysfunctional relationship with the healthcare system…  I give so much of myself with little to no reciprocation yet I still call and leave messages constantly.

I need these copies because I have a plan (soon to be discussed).  I am tired of waiting around.  I’m doing things my way.

It’s one of those times in my life where I am feeling quite overwhelmed.

I have not stopped to reflect and truly put things into perspective since last week’s flurry to get my test results and all of the nonsense that comes along with something like this.  Learning new information like my valves are “eccentric” (and therefore could not be helped by the Evalve trial) is staggering but I didn’t let it trip me up this time.  I made a promise to myself a few months back that I will never get my hopes up about medical “things” until they are 100%, and I will take each piece of new information, absorb it, file it in my brain, but not allow it to harm me.   I knew this time I wouldn’t let myself go backwards.  You just gotta keep moving forward.

I process a lot of information when it comes to my health.  It’s always on my mind, I’m constantly thinking and researching, and calling offices and insurance companies, etc.  It is my full-time job (as I’ve said so many times before).  I have been so busy just trying to manage my healthcare that I actually feel removed from it –as if I am calling for some other girl.  Like I am watching a movie. I forget that I am actually working on ME and my heart!

The most daunting aspect of this insane ride is managing the doctors and their egos (and don’t even get me started on the hospital staff and secretaries that I’ve encountered).  It’s actually nauseating how political you have to be with these dudes.  Through experience I’ve learned (most times the hard way) how you should speak to this particular breed of human (doctors with tremendous egos) to get the most successful outcome.  It is work, let me tell you.  I want to compare it to being an assistant or PR person to some diva Hollywood star… you have to revere their feelings first and foremost, then figure out a plan from there. (I’ve noticed that Rheumatologists are especially sensitive, or “macho” as my pharmacist called one).

I have decided that I reached my limit today for this quarter.  I am so sick of it.  I stopped to think about what I was doing at one point and I am appalled at the fact that this is a GAME.  Healthcare is a game, a joke, a system you have to work in order to make it work for you.  If I wasn’t so exhausted I’d get into details but I think rehashing at this point will only get me agitated.

After tomorrow’s Rheumatologist appointment I need a break from associating with my doctors and calling hospitals searching for my test results.

I really need a break.  Just a nice little sabatical.  Sucks that you can’t take a vacation from being chronically ill with a fragile heart.