Ugh. That about sums up how I’m feeling about the current situation I find myself in. I have a mouth sore starting and it’s making me mad. The leg and face ulcers really shouldn’t have made me shocked to find my oral ulcers coming back to haunt me, but I guess I kept hoping it was all just my Behcet’s putting up a fight. Then the headache came this morning.
When I woke up, it was there, just like it has been, in the back of my head, with some added fun this time. My words didn’t make the most sense, and I was slurring my speech. Granted I’d only gotten about 5.5 hours of sleep, and was de-caffeinated, I was still aware that I should be making more sense. I just shrugged it off. This is my brain on Behcet’s. Regardless of how my MRI’s have been in the past, and if my new MRI’s show no change, my brain goes rogue.
Today I got to see my primary care doctor and get some more Medrol injected (happy dance), which is going to allow me to skip the oral dose (shhhh don’t tell on me) tomorrow and the next day, while I’m out of town. Listen, I like the guy, and he does not need to smell methylprednisolone farts or worse, poops. Plus, I’d like to enjoy my mini vacation without constant gas and the fear of needing to urgently poop.
My rheumatologist was less thrilled with my, “let’s just throw steroids at me,” approach to handling the wait for the Rituxan to work. Testing me sometime in July seemed appropriate, but as time passes, and my symptoms worsen, even with periodic shots of steroids, I get her concern. Still, I know my treatment options from here on out, and they’re bleak as hell. Without even phoning in the blood test to rule out the gene for a rare type of genetic predisposition towards a weird kind of anemia, she phoned in Azathioprine (Imuran). Now, I’m not starting it on my trip, despite my primary care doctor’s suggestions I get it going, for a few reasons.
- I don’t want to throw up or have diarrhea, both potential side effects, and ones I always seem to get when I start new oral medications.
- I don’t want to end up in an ER out of town, without my medical records, ruining our trip.
- We’re finally going out of town, I am not starting a new really shitty drug on literally DAY ONE of that trip.
- Who tells their patient to drive 2+ hours away and then start a drug like Azathioprine when they haven’t been tested for the genetic mutation you’re supposed to check for prior to administration?
Right. Okay. We all agree? No Aza for me until I return. Then I’ll take it and throw up and go to the ER, and we can get onto the difficult task of the next step.
I thought we were talking about Cellcept, but it turns out we were talking about Cytoxan…in doses that would mean I’d lose my hair, probably throw up a lot, and also likely end up infertile, or nearly infertile. Yay! Sign me up. My insurance won’t cover egg harvesting, or freezing, not that my soon-to-be-ex-husband is going to rush to help figure out how to get it covered seeing as, you know, he’s about to my official ex…
Positives are I can totally dye my hair blue because it’s going to fall out anyhow…negatives include being bald. The guy dates the sick chick with the patience of a saint, but let’s be realistic…I’d need wigs, good wigs, because I don’t feel like being 30, single, and bald, is going to do wonders for me, especially when you consider I’ll have a port in my chest, too.
Oh, did I leave that part out?
I have shit veins, so they always go hands, but because of the nature of the drug, and frequency of delivery, I’d get a port if I wanted to stay at the center I was going to…because it’s more time efficient. Yeah, let’s just put a port in because I have difficult veins! For fucks sake can we try a little?
Mostly I don’t know how to tell the guy that this is the situation as it stands. He was so positive about the Rituxan, and I was, too. I still am, but I really don’t want to start the Azathioprine. He’s looked up a bunch of drugs, and options, and has even said I should go to NYU to seek out other treatment options because I have the gene mutation and maybe that bumps me up some research list. He’s so helpful, and wants so badly to be able to help me find a way to treat and achieve remission, it’s hard to explain to him that getting there may involve a lot of hard sacrifices.
He isn’t my boyfriend. We’re talking about harsh drugs. Potential hair loss. Body changes have already happened, and he’s been supportive, but these are even more drastic. At what point do I get friend-zoned? At what point does my illness become too much of a part of my life to warrant keeping me in too much of his life? Why must I be single and sick, when dealing with either is enough of a bother as it is?
My life has been turmoil filled from the moment I was born. Literally, I died during my birth for a bit, my heart sort of stopped, then started again…Nothing came easy, and I fought hard to just survive. To care for siblings, hell, to raise them, when I was a child myself. I weathered abuse, as a child and an adult. I fought, and I lived, but now I’m facing the prospect of having to lay back and recover. To be alive, but not really living my life. That’s why I’m taking a trip tomorrow, to see a show tape live. It’s why I am staying as long as I feel well up in LA so I can knock some things off my bucket list that are there. That’s why I’d like to try and get to San Francisco before the Aza kicks my ass, or I’m forced to start seriously considering Cytoxan.
Breathing in and out and smiling and joking, it comes easily, because it’s not always real. inside I’m screaming, crying, wanting to be held and told it’s all going to be okay, even if I don’t believe it. That’s the thing people need to understand that’s often odd about someone chronically ill. Sometime we will lash out when someone says it’ll all be okay, because it won’t, it really won’t. It will be okay some days, and other days it won’t be, but it will never all be okay. Still, on days when we get the worst news, sometimes we just need to be held, to cry, to scream, to ask why without getting an answer because there are no answers, and to be told that no matter what it will be okay. Not all of it, but some of it, and that’s all we really need.