This past weekend has been a new type of everyday terror within my body, and throughout the rest of the world. “You are at risk for sudden death” are the words uttered to me from my specialist after multiple tests have proven that my heart is in fact ready to give out. Yesterday I had three tachycardic episodes from everyday tasks – where my heart rate raised way too high too fast, and my failing heart could not move oxygen to my brain and the rest of my body fast enough. Have you ever suffocated before, and lived to tell the story? How good did it feel to be in indescribable pain while feeling your life slipping away into an unknown in between hoping that you will wake up?
You see, I didn’t ask to be diagnosed with Pulmonary Hypertension. I didn’t dream for a fatal diagnosis when I was a kid. Yet, here I was barely celebrating my eighteenth birthday being told that it was going to take a lot of effort on doctors, pharmacies, and insurances behalf to keep me alive the rest of my “life” which at the time was an estimated two years. Here I am, seven years later, and getting ready to switch to a different type of therapy to keep me alive before the final decision to accept a double lung and heart transplant.
“Now one way to force it [coverage] is to force insurance companies to provide health insurance coverage to someone as soon as they show up, regardless of what condition they have, which is kind of like asking the property/casualty company to rebuild the house after it’s burned down.” -Senator Pat Toomey
“Everyone is so offended these days – buck up like we did back in the day” is something I see flash across my Facebook more times than I care to. I mean, I guess it’s an easy life when you have the ability to breathe without assistance, or money. I guess it’s an easy life when your biggest concern is affording groceries, and taking a “what color is your aura” quiz on facebook in your past time.
However, when the government thinks that you are a waste of time, a lost cause, a “burned down house” life gets a little shaky. When you depend on three speciality medications that total around fifteen thousand dollars monthly, an oxygen machine, oxygen saturation readers, one specialist, two physicians assistants, countless pharmacies, medications to control side effects, labs for blood work, and now you’re looking at an IV pump with a hickman line, possible transplant, and a Government who doesn’t believe in supporting “pre-existing conditions” which you have…life isn’t so easy is it?
It is very personal. It is my heart and lungs. It is my life, my hopes and dreams, my future, my unborn children that I have fantasized about, my career, my beautiful cabin in the woods, my art, my goals, and my drive that is being called a “burned down house.”
I am offended. I have every damn right to be.
I encourage you all to please tweet AT @sentoomey showing him what a burned down house looks like using the hashtags of what you suffer from, #burneddownhouse and #preexsistingconditions and #humanrights. WE ARE HUMAN. Show them that.