Today as the doctor gazed at my chart his eyes bulged as he shook his head and said in shock, “You’re on way too many medications… a lot of these have really serious side effects we need to cut your medications down.”
But yesterday I was on the phone with a different doctor, asking if I could cut some medication out of my regiment (because thinking about the severe side effects that can come with the pills I’m on has literally kept me up at night). And that doctor said, “We rate how inflamed your esophagus is on a level from A to D, D being the worst. Yours is at a C. And with how inflamed and poorly your whole GI tract is, I don’t dare take you off any GI medications. I want to schedule some new tests, bump up your scope and colonoscopy, and depending on the test results I may add an antibiotic.”
My body is a landmine, covered in rare, life-threatening, complicated diseases, ready to explode at a second’s notice. I can’t help but think that each doctor who is brave enough to take my case must feel like an EOD desperately trying not to make the wrong step, and cut the wrong wire that will lead to my brutal end.
But for the past month, each doctor appointment I go to contradicts the one before it.
“I think your prednisone is causing the issue,” one doctor says.
“It would be extremely atypical for prednisone to cause this issue and I think something else is going on,” says a different doctor.
“With your new heart condition it makes it really dangerous to be put under sedation.”
“With the new issue going on we are definitely going to need to do another test and put you under sedation.”
“You know these meds are killing you right?”
“These meds have side effects… but they are the only thing keeping you alive.”
My health has currently been on a steady decline, which means a majority of my time has been spent at home or in hospitals and I’ve been desperately listening to doctors, trying to be the “perfect patient.”
And everyone, friends, family, even medical professionals stare at me with their gaze basically saying, “It’s your body, so you should know what to do with it…”
But in all honesty, I’ve never felt so hopeless and clueless when it comes to my health. And for years, when it has come to my health I’ve had absolutely no idea what I’m doing.
Basically I’ve been throwing doctors’ suggestions to the wall as hard as I could, and hoping one of them would stick. But not until recently did I truly realize that I was throwing things in a glass house, and all the walls are beginning to crack… but these walls can never be replaced, and the ones who have been trained to “fix the walls” have no idea how to even begin to cover the smallest cracks.
This month in particular my health situation has left me terrified to the point of tears, wondering if one day I’ll regret what seemed like at the time to be the only choices I could make if I wanted to stay alive. Medical TV shows always show the medical mystery patient experience a major decline, and then doctors work together to find the magical cure. And don’t get me wrong, some patients get their miracle. But from my experience, most are in my situation, where catch-22s aren’t just cautionary tales, but your current life story. Every choice your broken body forces you to make is a “screwed if I do, screwed if I don’t” situation. And you’re left to wonder, “How on Earth am I ever going to survive this?”