This whole blogging thing is not as easy as I had thought/hoped. I keep forgetting or not having the time to post. Bear with me though, I haven’t given up yet (Crohn’s patients do not give up easily).

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Today I feel: great! Keeping busy and still taking care of my body. I may have just been successful at fighting off a cold, but the jury’s still out on that one- I’ll keep you posted.

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My semester started again last Tuesday- it’s already insane, especially now that I’m working at the same time (and right now I may or may not be coming down with a cold; my body cannot decide).  But my Crohn’s has been behaving itself surprisingly well, and I think I owe that to soy milk. If you’ve been following my Twitter, this is old news, but I’ve recently realized that milk is a big problem for me and I’m currently experimenting with different alternatives. Naturally, I tried soy milk first, which worked out pretty well. I still haven’t worked up the courage to drink it straight, but it does the job in coffee. The only problem is that the taste is simply unfamiliar to me. Milk was always my comfort food, and I think a good comfort food is equal parts deliciousness and familiarity. The taste of soy is fine, and I’m adapting to it, but it can’t really replace milk in all its functions because it tastes so foreign to me.

It took (and is still taking) a huge amount of willpower to cut out cow’s milk, but I can see drastic results of it already. The times when I have not had any milk in my body have been rare in the past, so with nothing to compare to it was hard to see if it actually had a negative effect on me. Now it is obvious to me that it does, and I can (with effort) remind myself every time I consider cheating how immediate my body’s response will be if I do, and how much better I feel on the whole when I stick to it. This one change is making it a lot easier to rationally evaluate my food choices in all areas, because if I can give up milk, I can give up anything, right? I’m trying really hard to come to terms with the fact that having Crohn’s really does mean I have to alter my life in some ways that other people don’t, in order to stay healthy day to day.

I just bought a quart of almond milk (I’ve had the vanilla variety recommended to me on multiple occasions but I decided to start with the original) to try next, and after that I’ll test out rice milk, just to see which one I like best.

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A couple quick shoutouts- I just joined the Crohn’s Disease Support Network (the name is self explanatory), and although I haven’t gotten the chance to fully explore it yet, it seems like a really great resource for all you Crohn’s sufferers (and friends/family of) out there in the vast abyss of the internet. Another great resource is the Crohn’s Disease Forum (again, pretty easy name- it’s a forum about Crohn’s). I’m linking both in the side bar.

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I am Maudlin

January 16, 2010

Today I feel: better than yesterday. I’ve been drinking a lot less milk (just in coffee now) and last night I drank 2 glasses. That didn’t work out so well for me, starting almost immediately. I’m buying soy milk later today. (Thanks for the suggestion, Jen!)

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The other day I was talking with my friends about Crohn’s, and I said that I didn’t want to tell my other roommate about it so as not to give her the opportunity to dislike me more. My friend gave me a look and asked me why in the world would Crohn’s be an excuse for her to dislike me?

The only answer I could come up with was that it’s a pretty gross thing to think about, and so if you already dislike someone then the notion of them pooping a lot is going to make you wrinkle your nose a little. But really, it’s a bodily function, albeit a malfunctioning one in my case. I’ve had this idea in my head all this year that not only do I not want to share that personal a piece of information with a roommate who is anything but friendly towards me, but that somehow I shouldn’t tell her.

I still don’t plan on telling her because it’s my business and I only like to tell those people who I think will be sympathetic towards me, but I don’t fear that she’ll find out anymore. What would happen? She’d be grossed out, and she might judge me. But it’s not like she could take it as a personal offense such that she would actually treat me any worse. But it took my friend calling me out on thinking foolishly for me to realize this. I am constantly thankful that I have found so many good friends with a sense of humor about things like this who will not only joke about it with me but who aren’t shy about giving me a good kick in the teeth when I’m being dramatic.

Bus Ride

January 12, 2010

Today I feel: vaguely bad. I haven’t had any actual problems so far, but I keep feeling like I might imminently. It’s probably just nerves.

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I’m on the bus back to NYC! As a kid, I could never get on a bus. On school field trips, my mom would always drive me in her car so she could stop at a bathroom if I had an emergency, which a bus is never going to do! Now though, a bus falls into the category of things I can do if I prepare well. So here’s what I do. I eat a good breakfast, meaning one that is filling but as easy on my belly as I can make it. If I do this well enough, I can sometimes cut out eating on the bus altogether. Then I make sure I bring more nosh than I’ll actually eat on the bus itself, including a meal if I think I’ll need it. The most important part of this is the drink. I don’t know if it’s just me or if it’s a normal Crohn’s thing, but dehydration and low blood sugar are huge problems for me, so I make sure to have an iced tea to tackle both at once (I don’t usually drink sodas). I also take some sort of solid food, although my life is easier if I can hold out until I’m off the bus. Because my mother likes to spoil me, and with the excuse that I’m traveling with 3 friends and can share with them, I currently have a bag of original (not cheddar) Goldfish, Pirate’s Booty, a baguette, 2 bananas, and my iced tea.

However, this could all be overkill since I take the Bolt Bus, which has a (remarkably clean) bathroom at the back of the bus. Hence, I always sit at the very back (this also considerably lowers your chances of having to sit next to a stranger), so that even if I’m in the middle of a flare I can still access a bathroom within moments.

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A quick story about Pirate’s Booty, and no butt jokes, I promise. We all know that popcorn is a big no-no for Crohn’s patients, and Pirate’s Booty has always been my substitute. It tastes just like the fluffy bits of popcorn, but with cheese instead of butter on it (which I really like much better). Two of the friends I’m traveling with are twins I’ve known since elementary school. I used to go to their house all the time, and their mother would keep us supplied with as many snacks as we could want. She knew that I had Crohn’s, and so one day I was watching a movie with the girls and she brought us a big bowl of popcorn, followed shortly by Pirate’s Booty for me, even though there was so much other food and candy around that I could eat that I would never have felt the lack of it. I have known her and her daughters for every one of the 10 years I’ve had Crohn’s, and she has never once forgotten. She is a dear friend of my family, and I will never forget how kind and thoughtful she has always been to me. Things like this are what make Crohn’s bearable.

Happy New Year!

January 10, 2010

Wow, I took a longer hiatus than I expected to. Sorry about that! I hope you all had a wonderful holiday season, I’m always glad to spend Christmas and New Year’s with my family. But now it’s time to get back to the proverbial grind.

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Today I feel: middling, for me. No major problems, just the day to day annoyance of having to deal with Crohn’s (my thought as I wake up every morning and have to get myself to the bathroom first thing: “It’s still here? Oh come on.”).

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Just a few days after my last post I got a new job, which has been incredible so far. I worked almost non-stop my last week in the city, including an overnight shift (and all this starting mere hours after my finals ended). It’s great to be getting paid again, and I’m so glad that I got a good job rather than having to take whatever I could get, but they did manage to run me ragged in that one week. I had one 12 hour overnight shift that threw me completely off my sleep schedule, which I found out is disastrous when you take your meds “when you wake up”. I know I missed at least 1 day of meds that week, maybe 2. Which isn’t great when you then have to continue working constantly. On Friday night I managed to get myself into a spot where I had to run off to the bathroom 3 times in a half hour. That was extremely unpleasant. Apparently I was really sick the whole time (said a nurse I saw a few days later) but through sheer willpower I managed to ward it off until the morning my bus left to take me back home. So of course I spent Christmas with a bad cold, which, again, is not terribly much fun and not so good for Crohn’s.

Lesson learned: when you’re most stressed out is the time when you tend to neglect the things you need to keep you healthy, like taking meds on time and eating right. But it’s also the time when your body is most susceptible to bad things happening, so you need to take extra care so you don’t pile on one more stress!

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This vacation has confirmed for me that I cannot eat ice cream anymore. I started craving it and went into the ice cream shop where my sister works, and predictably was tethered to the bathroom all night. I have a theory that I may be able to get away with frozen yogurt to feed the occasional desire for ice cream, because of the different source of the “cream” part, but I haven’t experimented enough with it to say for sure yet. Does anybody know if frozen yogurt is at all better than ice cream in terms of not exacerbating the digestive system?