Can I just Get a Zipper? - #Wattys2015

Being Special

"So you are the special lady?" Said my new doctor as she sauntered into the exam room. 

I was taken off guard, and either sat there with my mouth hanging open or quite possibly said, "Huh?"

Normally I am not caught by surprise, when a doctor gets excited about my rare genetic disorder. I usually brace myself for it. But this was a specialist, examining my retinas for signs that the tumors in them have grown. Examining people like me was her job. Even though people like me are only 0.3% of the population, a university hospital was one of the places we typically congregate. It wasn't the same as going to a walk in clinic. So, I thought that meant I would be spared the usual song and dance. But it was not meant to be.

Ok, after all my talk about the horrible aspects of having a rare genetic disorder and cancer and all the yuck, you might be thinking, "What is so bad about being treated special?"

Nothing really. I just love having something not quite so awful to complain about. 

Just think about it for a minute. You sprain your ankle. You go to the walk in clinic and fill in the forms. Under "Previous surgeries and serious medical conditions" you simply write "A lot" because the two little lines of space are hardly enough. Inevitably they have to ask what I mean by a lot, because a good doctor knows your complete medical history to properly treat you.

Yep, even for a sprained ankle.

The fact that I have no adrenal glands and am on steroid replacement impacts my healing, interacts with other medicines, can cause immune suppression, vitamin deficiency, or even depression. There is a wide array of effects it can have on many other health issues, and that is only one tiny part of my health history. So a good doctor always asks, and I can respect that. 

But the problem arises when they hear about my disorder, especially the word pheochromacytoma. Their eyes get as round as a five year old on her first trip to Disneyland. A pheochromacytoma is something every doctor hears about in medical school, but most of them will never see in their lifetime. So as soon as they hear about it they naturally want to poke it with a stick and see if it moves.

"What kinds of symptoms did you get when you had your pheochromacytoma?"

"Umm none really....so about my ankle?"

"How did they discover it?"

"I have been tested since I was 6 months old...listen my ankle really hurts could we--"

"So it runs in your family? Fascinating."

"Yes, my nephew, sister, mother, aunt, uncle, grandfather, and probably great grandmother. Do you think I need some x-rays, my ankle is getting kind of swollen here?" 

I complain, but only a half-heartedly. Too many questions are better than none. The time I was in the hospital for an infection and wouldn't get better after 11 days of treatment was a result of them not asking the questions. They were too focused on the infection and my recent surgery to think about the medication I had been on for 10 years and how my current illness impacted it. 

But then there are the times I go into the ER and the doctors take it as their golden opportunity to run every single scan they can to make sure none of my tumors are acting up. Even though I just had a full set of scans a month before. And in the end, giving me nothing but a hefty dose of radiation (just what a girl with a predisposition to tumors needs! Thanks!) and a sizeable bill, which will result in years of dealing with rude collections people. 

But at least I get to be treated like a "special lady" and I get enough attention and ego stroking to make a hypochondriac insane with jealousy. It is actually a little empowering to basically be a teacher to doctors. It is probably one of the reasons I am so proactive about my health. So you have to take the bad with the good I suppose--that is the life of a celebrity after all!