Difficult to be Brave

In April, I met my new specialist at the SUPER FAMOUS Hospital (SFH from here on out). He ordered half a day's worth of lab testing on me to try to figure out why I'm having so many complications from my surgery last fall.




Please understand, I was sent by doctors trying to look out for me to this new specialist. And he's not just a boring specialist: he works at SFH, and leads the world in research at what I have been trying to combat.


I never heard back from the office, and received none of my laboratory results.


When I contacted the doctor, pages of results flooded my screen as well as the doctor's plea that I call his office IMMEDIATELY to schedule follow up testing for a worrying result. He cleared his schedule for me, and got me in the next day.


Here's where my story gets weird. He started insisting that my blood work *showed* a diagnosis. I can read blood work too... and one of the three markers we're talking about is elevated, not all three that usually need to be elevated. This does not conclusive evidence make.


So I went in for invasive testing - and my doctor pronounced his diagnosis confirmed. The results were again released to me, with the words "inconclusive" and "presumed" throughout the paperwork.


This is when it gets really difficult for me: now I have to disagree with my specialist at SFH. Why is this an issue? I have several more doctors at SFH, and now I'm fighting with a very well respected doctor.


Why on Earth would I argue with someone who has gone to medical school?


The reason I'm writing this - the reason I think this is important - is because of the answer to that question: my body says he's wrong.


He told me to do it himself - I checked out the symptoms of the disease he believes I've been diagnosed with, and out of the 300 symptoms listed on the page he gave me, I have 7 of those symptoms. All 7 of those "symptoms" are diagnoses of other illnesses.


The disease we're talking about is an allergy. People have severe, painful and very noticeable reactions to specific foods/allergens. When it comes to this allergy, it's actually the only thing that makes me feel better. I'm not kidding. I have documented in my food journal (yes I have one, suck it) that when I am around the very thing that's supposed to cause me pain and illness, I have notes reflecting how much better I feel.


So there's that. There's also the fact that I've been tested before, and all the reasons listed by standard of medical diagnosis from 4 of the top hospitals throughout the country have not been satisfied. Therefore, there's no logical way a diagnosis of this disease is appropriate.


So why am I fighting? Just do what I'm asked and when it makes my life worse (not better) I can show my doctor he was wrong?


I could have something else, including several possible cancers. I'm not going to waste time treating something I do not have when it puts the rest of my life in jeopardy. I refuse.


So now, I have already asked for the second opinion from a doctor I trust who has listened to my symptoms and understands my sincere belief that I do not have the disease suggested. I want to make sure this is right before changing my entire life, only to find out it was wrong.


Why am I telling you this? Because it's never easy to be brave. It's painful, and scary, and can feel incredibly lonely. I'm not saying I'm brave at all. I'm saying that it takes courage to stand up and say, "Hey. I get that you're a doctor - please understand that my body, my life and the reports you are sending me say you're not even 50% sure. Please consider that you could be wrong."


I know this many not change anything. I can't help hoping that it does.