I’m redefining the term “diaversary” originally limited to those who have been diagnosed with diabetes and expanding upon it’s definition to include all of those living with a chronic illness. And as most of you know (because let’s face it, no one else reads my blog), I’ve been living with Crohn’s disease for four years since this past November (I know this post is a little late, sorry). I was initially diagnosed after a slew of tests, awkward questions, and even more awkward procedures during the fall of my senior year of high school. Long story short, after I was diagnosed and treated, the medications gave me horrendous side effects and worsened my already disastrous symptoms. All in all, it sucked. Cringing pain that felt like shards of glass moving through my system and the subsequent weight loss that followed forced me to leave the crew team after three years. Finally, I was able to achieve remission, but was again haunted a year later by a year-and-a-half long of remission-relapse cycles. Fortunately I have been in remission for just over a year now thanks to a little (and crazy-expensive) medication called Remicade.
The only thing us Crohnies can do is face the reality of the matter head-on. We aspire to continue doing the things we love regardless if it’s a little hard or takes us a little longer. While I am constantly aware of the monster lurking inside me, I am more apt to enjoy and cherish the time I have while in remission. Every diaversary is more of a badge of honor, earned and respected, and fortunately I am able to celebrate my fourth year as a Crohnie (relatively) healthy and in remission.
Suck it, Crohn’s.
Sometimes you gotta do what you gotta do. And recently for me that was hoarding a copious amount of Monster Energy drinks at my local Stop-and-Shop (the Absolute Zero variety, obviously). Was I embarrassed to be practically shoveling the cans off the shelf into my basket? Not at all. I have no shame, even when the cashier raises an eyebrow and asks, “Do you even eat anything?” Again, no shame. Plus Crohn’s prevents me from drinking coffee. Trust me I’ve tried multiple times, and have failed multiple times. Something about it just wreaks havoc on my gut, so I have to avoid drinking the stuff on a regular basis. So now I stick to my standard Coke Zero and Monster to get my caffeine fix.
But these next two weeks are going to be a tad bit different. Us MSI’s here at UConn SOM have two weeks until our first exam in Human Bio. I don’t even know how many lectures I need to go through right now, but it’s a lot and I’ve got two weeks to get it all into my head. It’s not that the material is too difficult to comprehend, it’s purely the volume. Imagine cramming an entire semester’s worth of college material into seven weeks. That’s probably a pretty accurate description. Plus now my schedule is something like class 8:00-12:00 everyday with a class on Monday 3:00-5:00, Tuesday 1:00-5:00, and Thursday I have SCP (my clinical thing in pediatrics) from like 1:00-7:00/8:00. Then I’ll be studying the rest of the day everyday until probably around midnight or so and then set my alarm for 6:30 in the morning before crashing for the night. Rinse and repeat.
Hence my mildly concerning stockpile of caffeine.
So it’s like 1:30am and the insomnia from the prednisone has struck again. Now I’m kicking myself in the ass for taking it later in the day than I normally do. Oh well, might as blog about something or another.
I have to admit, this week was long and kind of shitty. Class was almost entirely lecture this week which kind of kills you a little bit when you need to try to stay focused for four straight hours. You kind of just zone out for a minute and then next thing you know you’re a couple slides behind and completely off topic (thank God lectures are recorded). Then toss in some general frustrations throughout the week and things kind of just decline. But the gym saves me.
Ah, the gym. I don’t care if I pay a little bit more cash to go to NYSC versus other gyms in the area. It’s my sanctuary. It’s one of the only ways I spoil myself a little bit (plus they have a pool). I can go, pop in my iPod, crank some tunes, and work out all the stress and frustrations that have built up from the day. All week I’ve gone into the gym either cranky / PO’ed / annoyed / frustrated / all of the above and I’ve been coming out happy and smiling (hooray for endorphins). I’m sure I would qualify as a bit of a gym junky to some people considering I usually spend an hour and a half to two hours there whenever I have the ability to go, but I couldn’t care less. It’s my personal two hours or so that I give myself aside from class and studying, and it keeps me sane. Plus with Crohn’s, the gym helps me to bring my stress levels down, and last time I checked stress for me is a huge factor in causing a relapse or making one worse. The gym keeps me happy and healthy, and those are honestly the two biggest reasons I go.
And I only have a couple of months to get ready for the Santa Speedo Run in December up in Boston, but that’s a completely different story.
I don’t know what it is exactly, but drinking coffee everyday does something to my gut that can induce relapse of my Crohn’s no problem. I’ve tested it out here and there, but every time I think I’ll get away with it my Crohn’s always seems to catch me in the act and subsequently seeks its revenge. And because, little does anyone know, that staying properly caffeinated is pretty much a requirement for medical school, I’ve been forced to seek alternative sources for my much-needed caffeine kicks in the morning, early afternoon, and evening. Luckily, I’ve found my new source to be Coke Zero.
For any of my former co-workers reading this, I’m sure they’re laughing their asses off. My old PI’s office would more than occassionally be littered with multiple cans of Coke Zero and the mini-fridge would be appropriately stocked to maintain his supply of the magical elixir. And currently I have to 12-packs in my apartment with another in the trunk of my car which will soon be transported to my locker at school. Yup, my name is Ted and I’m addicted to Coke Zero.
I’m craving the snap of the can and hiss of the carbonation just writing this.
So today at work my phone buzzed violently, and when I checked I didn’t recognize the number so I sent the call straight to voice mail. It was like an automatic reaction. I hate answering calls from random people and then getting annoyed with having to deal with something at their convenience, not mine. I’d rather call back on my own time and when I want to take their call. Plus half the time it’s someone calling from this program set up by my health insurance for people with chronic illnesses, and honestly they only tell me information I already know. (Yes, I know to take my medication. Yes, I know to get a flu shot. Yes, I know to see my doctor on a regular basis.) So today when I didn’t recognize the number, I didn’t think anything of it. So I swiped up on the screed to decline the call.
But then at lunch I figured I’d check to see who it was, mostly because there’s this little icon on my phone screen that doesn’t go away until you actually listen to the message. That little icon really annoys me when it’s there. Well, it turns out that the message was from a nice woman at UConn calling to ask for (get this) my sizing for my white coat. Yeah, my white coat. Because I’m going to med school. It was a holy-crap-this-is-really-happening moment. I was stunned. I mean, I knew it was going to happen, but now that things are really moving forward and things are being finalized, going to med school is becoming more and more a reality.
Now I just need to find an apartment.
So after a weekend filled to the brim with maximum fun combined with the extra-sleepiness from tapering off of prednisone (at the 15mg/day level, what what!), I was EXHAUSTED yesterday in every sense of the word. I was falling asleep at my desk after pounding a disturbing amount of iced coffee to my face. I skipped the gym, went home, cranked the AC to the max, ate some dinner, took a shower, then went to bed at 8:00pm. I felt like a little bit of a dork, and kind of like a six-year-old because it was still pretty light outside. But I didn’t care. I went out like a light. I got a solid nine hours straight of sleep, waking up around 5:30 on my body’s own accord. That’s more sleep than I’ve normally been getting these days with the prednisone and all, so it was amazing. Feeling refreshed, I hit the gym again this morning for a nice little 3-mile run to get back into my routine.
It’s amazing what a solid night’s sleep can do.
Remicade. It’s my drug. No, literally.
Last year was a particularly rough year battling Crohn’s. No matter what I did, I just couldn’t seem to get off steroids. I was able to successfully taper off prednisone, but then in a couple of weeks I would find my symptoms start creeping back and then eventually I’d have to go all the way back up to my standard go-to level again. Try again. It sucked. Then the insomnia would kick in (again), I’d break out in acne uncontrollably (again), I’d get bitchy mood swings (again), I’d get an insatiable appetite (again), and I’d get fat face (again). None of these side effects really bothered me because I knew I couldn’t control it, but still it’s annoying feeling like certain aspects of your life are out of control. Kind of actually sucks. But whatever, I knew I just had to deal with it and that eventually things would get better.
Well, they didn’t really get better too quickly. So my doctor decided it was finally time for me to try some biologicals. I was pumped. Nothing like getting half a gram of Remicade infused into your body to make you feel better. Let me just let you know that Remicade is an antibody that blocks the inflammation cascade in your body. And without getting too sciencey on you, antibodies are these specialized molecules that bind very specifically to one thing. So essentially what it does is bind to this molecule in my body that’s out of control and it blocks its function. Pretty cool. It’s actually a relatively new method of thinking about drugs and treating disease. It’s also incredibly expensive. Considered a form of chemotherapy, my bills without health insurance would be around ten grand for each infusion, so sixty thousand smackers a year. But with insurance (hooray for insurance) I don’t pay a dime.
So that’s what I get to do today. Nothing like 400mg of Remicade to make you feel better. Although at the same time I know it can take up to a year or so of getting infusions and working with my doctor to figure out what dose and frequency will work best for me.
But if it keeps me from needing to get surgery then I’m all for it.