Ever have one of those posts that you sooooooo don’t want to write? One that you draft a million times because you can’t quite say everything you want to say without babbling on like a fourteen-year-old girl who’s drunk off of lemon gin for the first time? Well, this post is one of those, so you have my apologies in advance.
Maybe it will be easier to start at the end and work back. It’s an unusual presentation, I get it, but let’s give it a go, shall we? Okay, here’s the end (that you probably already know from the title of this post): I’m no longer a human guinea pig.
I know that a few of you have probably noticed it’s been a long time since I’ve done a Guinea Pig Diary post and that’s because…well…things got bad. Way bad. The baddest, actually. For most people, no news means good news but for me, no news often means bad news. It wasn’t my breathing that got worse—that was fine—but I kind of went a little bit crazy. And by little bit, I mean batshit.
The best analogy I can give you is this: Picture a brightly lit room. Everything’s bright, happy, and normal. A few days later, the brightly lit room is a bit darker. Nothing drastic, mind you, and really, you probably wouldn’t even notice unless you tried to read a book. Eventually, though, the room goes completely black and you can’t see your hand in front of your face and you don't remember what the light looks like. Only, imagine your hand as your sanity and that’s pretty much what happened to me. Sad things were sadder, irritating things were more irritating, my road rage got super intense, I became consumed with what others thought of me to a point that it bordered on total paranoia, and I was getting so angry at Ernie (the study's Palm Pilot) that I would get physically warm whenever he sounded his alarm.
Not exactly fun times, to say the least.
Now, it's not new information that I don’t do well on Prednisone, or The Big P, as I like to call it. I’m one of the unlucky ones who seems to get virtually all of the psychological side-effects, and obviously, the more medication I’d take, the more intense the side-effects would be. Eventually, in November of 2011, my breathing randomly got worse and I was taking so much of The Big P that my doctors felt it was a good idea to switch me to Medrol, which is similar to The Big P but…well…also a tad bit different. Within a month, I was back to my usual self, and the following year was pretty awesome. I was able to hang out with friends, play golf, and almost act like a regular healthy person. In essence: life was good.
When I got my Guinea Pig Status, though, I had to switch back to the Prednisone. I knew that it was risky, but the chance of getting a new drug that could eventually me get off ALL steroids was worth it. And in the beginning, things were going well. But in late March, everything fell apart faster than an IKEA chest of drawers.
First, I got a cold. A week later, I had an outbreak of Shingles (my second as an adult). Then, my breathing got bad. Way bad. I had a trip planned to NYC for the Writer’s Digest Conference, so we jacked up my Prednisone dose so I’d be okay to go. The good news is that I was so fucking wired that I was buzzing around the conference like an over-caffinated bee. The bad news is that I chalked it up to being excited and didn’t recognize that I was, in fact, halfway through my campaign for becoming the new mayor of Crazy Town.
It would be another two weeks until it was obvious to me that things were bad. And that breaking point was my hysterical crying over a dog. No, not one of mine—a neighbour’s dog. You see, we have a pair of Schnauzers who live behind us and when their owners forget to put on their collars, they like to come over and play with our boys. Well, one morning, only one dog came over. For the better part of ten minutes, I stared at the dog as she ran around our backyard. My mind whirled as I thought about what could have happened to the other dog. Did she not want to come over anymore? Had something happened to her? Was she sick? Hurt? Scared? Before too long, I was in tears because I had convinced myself that the other dog had died, which meant that the surviving dog would be lonely for the rest of her life. I then proceeded to spend the rest of the day sporadically crying about the dog and, when The Remix came home, he took one look at my swollen, splotchy face and said: “Fuck this. You need to call your doctor.”
As soon as he said that, everything changed. As a trained counselor, I know how to check myself and as our conversation progressed, I was devastated to learn that I’d been acting incredibly erratically for weeks, but hadn’t noticed. Accepting that I wasn’t in control of my body was one of the more challenging elements of my illness, and realizing that I had also lost control of my mind was more than I could handle. Like I said earlier, it was a bad time, people. A really bad time.
So, I called the research team and asked them if I could switch back to the Medrol. At first, it didn't go so well.
Even though, I knew that I wasn’t interpreting reality in a rational way, it didn't stop me from having extreme reactions to what the doctors said. For instance, when one said: "Well, there are only eight weeks left in the study," all I heard was: "You’re an incredible disappointment and why can’t you keep your shit together for such a short amount of time, you ridiculous, dramatic, baby." If you know me at all, you know that I'm assertive, so it took all of my self-control to not tell everyone to just fuck off because those 56 days may very well have been 56 years as each minute of my day felt like an hour and I needed it all to stop. But luckily, since I know that I'm not prone to wanting to face-stab people on the regular, I had enough self-control left to bite my tongue.
Several tear-filled, rage-suppressing conversations later, the pharmaceutical company ultimately decided that if I wanted to stay in the study, I needed to stay within the study parameters and therefore, continue to take the Prednisone. I must admit that I was pretty shocked but the reality of the situation is that, as far as the pharmaceutical company was concerned, I was just a number. They didn't care that I was in a state of crisis and doing things to cope that weren’t in my best interest. Nope, not one tiny bit. But, their unwavering decision made it much easier for me to leave the study because if they didn't care about me then I sure as hell wasn't going to try to struggle through anymore. I have more value than that.
It’s now been about a month since I made that decision and let me tell you, was it ever a good idea. I have an incredible medical team, who I know care about me, so the fact that I was feeling that they were all against me is a testament to just how bonkers I was. And, to prepare myself for the inevitable "what ifs," which were sure to come once I was back to normal, I wrote myself a letter while I was still in the midst of my meltdown and when I read it now, it totally confirms the fact that I was crazy.
So, in sum, I’d like to give mad props to The Remix, for continuing to love me despite me having one foot firmly planted in the loony bin. As much as this has all sucked for me, it's sucked even more for him because he has to watch me go through everything, while dealing with my pseudo-psychotic mood swings. So really, the end of this story is that I feel incredibly grateful that he's by my side, no matter what. I'm a very lucky lady.
Hopefully, the new drug will be on the market around September of 2014, so until then, I'll go back to my daily routine, which is a hell of a lot easier now that I'm not a lunatic. Yes, a part of me wishes that I could have made it to the end, but it just wasn't in the cards.
There is a bit of a silver lining to this all, though (you saw that one coming, right?). I figured that since I dropped out, I forfeited the meagre amount of participation money the pharmaceutical company was giving me but it turns out, I still get some! My cheque arrived last week, and I've been scouring the internet to buy myself something awesome--a treat that will turn all of this grossness into something pretty. I found love with a Kate Spade purse (shocker) but it's sold out in Canada (and the website doesn't ship up here) so I'm back to square one. The amount I have to burn is just over $300 and since I can't find anything that I just HAVE to have, I'm open to suggestions. I'm partial to shiny things, fun and quirky handbags, and other generally awesome stuff that borders on "I can't believe someone actually made this crap."
The floor is now yours, my friends.
(Oh, and just in case you're wondering about the presumed-dead Schnauzer, the first Saturday I was back on the Medrol, she appeared on our front lawn, very much alive.)