I was gonna write a really uplifting post about how a great oncologist made me a better patient but then homeschool math and my period got in the way. Oh yeah, sorry fellas, earmuffs. I’m probably going to mention menstruation a few times in this one. You’ve been warned.
Period. Ha. Did I make you flinch?
It is true that a great doctor teaches you how you should be cared for, shows you how to advocate for yourself, and I gotta tell you I have had the best. I’ve also had the worst, but that’s a story for another day. And everything that my amazing oncologist has taught me has come into play now that I’m on the hunt for a new doc in my new state.
My period has been a wonderful help as well.
Did that sarcasm come over as well as I’d hoped it would?
For those of you who don’t know what it’s like to have a period, imagine you’re on a rollercoaster. Now this isn’t a literal roller coaster, it’s a figurative one. But, just like a literal rollercoaster, you’re up, you’re down, you’re looping around desperately trying to keep nausea at bay while feeling like you might die. Only, with your period, the roller coaster is your emotional state and at any given moment you will want to murder someone for saying hello to you while also sobbing when the realization hits you that the narwhal is the unicorn of the sea.
Also, you’re really, really tired. Like, you could sleep for an eternity and still not be able to figure out how many scoops of coffee makes a pot, ya know? An added bonus for me is that the joint pain I’ve been experiencing since I finished chemo is even worse. So, even if I remember how many scoops go in the paper doodad that sits in the basket thingy, I’m going to end up dropping the coffee cup on my big toe before I can pour some liquid gold in my cup and then I’m going to remember the narwhal thing and I’m going to cry. Hormones are fun, kids.
If I do manage to get some caffeine in me, I’ve got to use whatever brainpower I have left to teach the kid math and math is such a terrible, horrible, awful thing. It’s just the worst. Do you know how horrible math is? It’s like the Pol Pot of school subjects. Math makes me cry, but not like I cry when I realize narwhals are the only real true unicorns. It’s more like a cry of desperation, like on election night when I saw Hillary’s chances slowly slipping away and the idea that the great, bloated egomaniac was actually going to be president hit me. Like that. Math is like that. Math is bad.
So, I’m tired and math is happening all around me and the narwhals are making me cry, but I’ve still got to tell you all the inspiring tale of how I advocated for myself and, despite the stupid lady on the phone that didn’t know the difference between an oncologist and an endocrinologist, I ended up finding a specialist that I think is going to work for me. But then math took up all the energy the caffeine gave me and when it was still light outside I actually asked myself, why does God hate me and won’t make it night yet?
When I woke up this morning I was all, today is the day! Then, more math happened and my hands hurt and have you seen all the dogs being rescued from Hurricane Harvey? Holy shit, if narwhals will make ya cry, you might as well pack up all your stuff and go away to some sort of facility after you see that. So, my inspirational tale of fighting and persevering over a nonsensical, bureaucratic healthcare system would have to wait another day because dogs. So many puppers that need homes.
But then I made myself a delicious pasta dish with kalamata olives and garlic and lemon and onions and it was so yummy. And I made myself a big, fat cup of strong Irish tea and math was all done and I had energy for approximately 17 minutes and I wrote a funny tweet and I really hunkered down and was like, this is it! I’m going to write the best, most inspiring, the deepest, most emotional blog post about learning how to fight for yourself when you’re sick! Then the tea was done and I had about 20 minutes before we had to move onto other homeschool subjects.
So, long story short, I couldn’t find a doc here in Charlotte that understood the gravity of my disease, so I took it upon myself to find an oncologist at Duke University. The new patient coordinator seems very knowledgable and I think the doctor she is going to set me up with might work. I’m just waiting for my records from Miami to come in so that we can make an appointment.
It sucks that I couldn’t find someone local, but this is my life and my health and my leg that we’re talking about. I have a complex disease and I can’t sit around and wait for someone here to figure it out. I have to go find people that know what it’s all about. I’ve been there before, with a doc that didn’t know enough, and I almost lost my leg because of it.
So, if you’ve got a rare disease you really need to do whatever it takes to get to a specialist.
I learned that the hard way so you don’t have to.
Now, if you’ll excuse me, I’ve got narwhals to cry about.
*Featured image courtesy of Pixabay.