Sunday, June 14, 2015

Here we go again

So, I started having chest pain a few days ago and around Thursday I started being short of breathe so I gathered up all of my courage and went into the emergency room. I say courage because going to the emergency is nothing short of a torture test for example, it took them 11 tries to get an IV. 11 tries! My arms are black and blue and I am exhausted.
Eight hours later my CT scan showed that I have pneumonia so I am taking a course of antibiotics.
This isn't a big deal in the grand scheme of life but here's the thing that has been bothering me since February. My Hemophilia Clinic has been telling me to go to Emergency and anyone who has hung out in emergency knows that it is torture.
Id much rather go to a place where the doctors are experts, I see them right away and I don't have to wait around in a crazy emergency room for 8 hours.
But lately they've been telling me to just go to emerg and it is causing major stress for me and my family. After all, one of the main reasons we moved here is because of the Hemophilia clinic.
I can't tell you have frustrating it is to have a rare complicated disease and feel like you are being pushed away but literally the only people who equipped to take care of you.
I go to emergency and the doctors are rude, they look for blood clots they think I have factor 5 leiden which is the EXACT opposite. I explain and explain but its like it doesn't compute.
Anyways I am going for a meeting tomorrow with my clinic director so we will see how that goes but I honestly feel like it won't make a difference and I just have to take what I can get. I mean what can I really do to change it? And to be honest I'm already so tired I just want to have good care.


  1. I feel sad to read about your illness. I hope you get more supporters who will stand by you.

  2. Thank you so much! I really appreciate you reading and writing!