I was like a kid on christmas eve, waiting for my surgery thus past wednesday. My doctor said that I should finally have relief from the pain I had been living with for the last year. I'd be able to sleep thru the night and swallow. I was anxious about recovery, and having more pain during that time, but everyone assured me that there would be no pain...I'd finally be able to have my life back...They lied.
Since my surgery, I have been in more pain than I ever could have imagined. I can't speak properly, everything I say sounds like a different person. I sound like I'm deaf. And besides what I sound like, it's excruciating to even attempt to speak. The right side of my nose up to behind my eye, feels like I have razor blades moving up and down. The constant throbbing pain has even made the right side of my face swell, including my eye and my temple. The roof of my mouth is starting to form some sort of perforation, and feels like it's splitting in half or caving in. The sensation is like acid is burning from the nasal floor to my palate, eating it's way thru to the inside of my mouth. The right side of my throat, behind my tonsil, is red and inflammed, like someone cut it and decided not to repair it. My nasopharynx (the back wall of the throat, up behind the flap where the uvula is) feels like popcorn kernels covered in needles are stuck up there.
And to make matters worse, my pcp, the surgeon, and everyone involved, states that because I shouldn't have any pain, than they can not prescribe me anything for the pain. It must be all in my head. You can see the erosion, ulcerations and inflammation in my nose and throat....But the pain, they say, is all in my head.
I can't talk, I can't eat. I spend my days curled up in a ball, crying, in the most pain I have ever felt in my entire life.
The surgeon also didn't have any answers....After debriding my nose and throat, he said he had never seen anything like it before. The erosion and deterioration was caused by some sort of unknown condition. So next week, I start my journey all over again. With a new panel of specialists, new questions, more tests, and more pain. I have to see a rhuematologist incase it's some sort of auto immune disease, infectious disease (cdc) incase it's something of that nature, and pain management, to see if the pain I am experience is legitimate or "all in my head".
I wouldn't wish this on my worst enemy. The things I am going thru now, are the exact opposite of where I thought I would be. The surgery was supposed to bring me closure. It was supposed to clean out all of the "bad stuff" and make it so I could finally have my life back. But it did the opposite. It wiped away all of the answers we thought we had, created more questions and more pain....I'm further back than I was in the beginning, with a surgeon who has no compassion for me at all. The only piece of information he had was that my condition resembled wegeners granulmatosis. Which, is a severe condition in which the mucous membranes of the nose, throat and palate deteriorate, causing a hole in the center of the face. It's a fatal condition if left untreated for too long....Once diagnosed, most patients have less than a year to live, and I've been battling this for a year already......
I would kill for some pain medication....My only option at this point is to go to the ER and hope that they do something for me....But the truth is, I'll sit there for 5 hours, be sent home and told to contact my pcp or the surgeon...and both of them, told me to go to the ER....So here I am, alone in my battle again, with no medical advocate....being told that I probably have a serious chronic infectious disease, but yet that pain I am experiencing is "all in my head." So fuck the state of Maine and their stupid ass health care system. When this is all said and done, I am going to have one fucking huge lawsuit against all of these people who refused to help me and sat back watching me suffer. Being denied disability. Refused to be given pain management. And given surgeries that did nothing but hurt me....They'll be sorry that they made the decisions that they did, because I will own their homes, their cars and their kids college funds. They messed with the wrong sick person this time....I'm going to fight to get my life back. And then some!
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