My belly hates me.

April 20, 2012

I have not been kind to myself. Not that I really could have, unless I somehow happened to get really lucky and just fall into a job and an apartment. Schoolwork I can handle. Schoolwork plus grownup stuff, all at the same time with zero experience to back me up? Not so much.

This is crunch time for me, with graduation looming in slightly more than four weeks. I have finally finished the paper from a year ago that was stressing me out so hard, just in time to have to start my apartment search. I have won all these awards for school; I’m the “outstanding classics major” of this year’s graduating class, I’ll be graduating Magna Cum Laude, and I am about to be inducted into Phi Beta Kappa. I keep acing all my tests, even when I don’t study as much as one would hope. Basically, I win at being a student. (Year-long paper experience not withstanding.) But then throw job hunting and apartment hunting (neither of which is easy in this economy, especially not for someone who sucks at it) into the mix, and there goes my ability to function and treat myself well.

I had a second interview for a job on Monday that went really well.This was very lucky, because basically nobody else was calling me back, and those who did had already decided not to hire me, apparently. But I adored this job, and all the people I met at the company, and the fact that it came with a solid salary. Then I spent the rest of the week in a constant state of nausea because I was so nervous to hear back. I stopped eating properly, which just made it worse. Cue vicious cycle. Today I called back to check on progress, and found out I didn’t get the job. Which sent me further into digestive purgatory. I managed to get in a second cup of coffee before realizing (two minutes before I was supposed to leave to view apartments) that I hadn’t actually eaten any food at all. So I gulped down some yogurt before running out the door. Between apartments, we stopped at a Dunkin Donuts for (another) coffee and a donut.

And that’s all I’ve eaten today. Three cups of coffee, a donut, and a yogurt. But my belly doesn’t want me to eat anything else.

I don’t know what is going to happen now but this can’t continue. Something has got to give, so I can maybe focus on only one horrifyingly difficult life-changing task at a time. Then maybe I can start eating like I’m a person again and not feeling nauseous all the time.

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Page Turn

January 31, 2012

Once again, I’ve managed to stop blogging entirely for months at a stretch (I’ve been on Twitter, but haven’t felt equal to a full length blog post). While I’m glad to report a vast improvement as of today, last semester was probably the most stressful of my life (to put that in perspective, the previous semester saw an evacuation from Egypt and a very painful two months of seminars to “replace” the priceless abroad experience we were supposed to be having). I did the bare minimum to keep afloat in class and at work, and spent the rest of my time sleeping or watching videos on Netflix, because that was all I could manage. I kept trying to push myself to get back up on my feet, but finally realized that I was only wearing myself out. I decided to pick one and only one thing to do every day. Often, that one thing was to take a walk. During the week it was to go to class. One day, I decided to go to the library. I got out of bed and put my clothes on, but before I got my shoes on I began to feel lightheaded and had to get back in bed. So that day my one thing became “get dressed”. That was the low point. In mid-December I made the very difficult decision to quit my Thesis, which cost me the “honors” part of my degree. That same week I begged a professor for some sort of extension on a research paper that was long overdue, and she gave me all the time I need. I could not have been more grateful for how supportive people were of me, when I felt I was letting them all down.

On November 11th I started Remicade. I had to get a bunch of blood tests and immunizations before I could start, but I finally got it. It helped a little, more with each dose, but it was by no means the miracle everybody said it should be. I had almost no energy, still, was getting very frequent headaches, and by December my appetite was gone (and when I did try to eat, I would get nauseous and stop). I was finally weighed in late December at a doctor’s appointment, and it turned out I had lost 8 pounds since September without realizing it. That day my nurse decided to double my Remicade dose, along with prescribing Omeprazole for the nausea and increasing my Lomotil. She brought up a dietitian to go through my diet with me and figure out how to get the most out of each meal (if I could only convince myself to eat once each day, I might as well get the most out of that one meal), and what to eat that wouldn’t make me feel so awful. Finally, things started to get better.

By New Year’s Day, I noticed that I had turned a page. I was running to the bathroom far less frequently, I could eat a little more, and my energy levels were higher. The headaches were going away. When I came back home after the holidays (a very needed 3 week vacation at my parents’ house) I felt well rested and ready to start getting back to my life. I didn’t dread the idea of going to work, for the first time in months. I can do more than one thing every day.

I’m only two weeks into my final semester at NYU, but already it’s going so much better than the last one. I am part time, only taking the minimum credits required to graduate, and I haven’t taken up any more hours at work. This means I am only in class three days a week and working two; they seem fond of putting me on for Sunday and Monday night shifts, so my week starts Sunday afternoon and lasts through Wednesday, leaving Thursday through Saturday entirely for me. I’ve been spending the time working on my resume and cover letter, and working on my (mercifully extended) research paper. I’m back to sewing again (my very kind sister has waited almost six months for me to get to work on her trench coat). I’m still sleeping and watching Netflix a good deal, but it doesn’t happen overnight.

I have an appointment with my doctor on Thursday, and two weeks after that is my next infusion. I hope that will help even more.

My best to all of you.

Deep Breath

September 28, 2011

Since I last posted, I’ve not been feeling my best. Despite everyone’s best efforts to lift my spirits* etc., etc., the fact is that I seem to have stressed myself into a real live flare, and it isn’t going away just because I’m starting to process this new information. It makes itself worse, because I’m too wiped out to do any of the things I need to do (never mind the things I want to do, haven’t been to the gym since August), but then I have to do them anyway which just fatigues and stresses me more, so that the next day I want to get up and go to class and work even less.

*A big shout out to my roommate, my parents, my sister, my manager, and very good friend from home. Thanks so much for your support, you guys make it so much easier.

One quick solution to this is that I’ve cut my hours at work to only two shifts a week. Besides the obvious “more time to rest,” I also get a few days in between shifts, so I don’t have to deal with the stress of many days in a row where I feel like I just left when I have to come back. This is helping. I now have far fewer days where I don’t get to come home from dawn until long after dusk (like normal), and this is really much nicer.

Even so it hasn’t fixed everything and I’m still feeling pretty bad. Yesterday I went to my voice lesson and explained what was going on to my teacher, who really got how much this was affecting me and decided to tone down the intensity of what I’m working on. The awful thing is how offended I got when she told me she had an easier song for me, with less ornamentation, that wouldn’t be as difficult to learn and sing. How dare she think I couldn’t do the harder song! But she’s right. I need a break. I want to sing, but it isn’t helping to push myself so hard. My pride and drive to be good at simply everything are normally what push me to keep improving myself, but now they’re working against me. I hate to say “I can’t,” but right now I can’t do all the things I want to do. I can’t read all the Greek and learn all the history and work out every day and teach myself to sight read right now.

So I’m going to try to be good to myself. Do what I have to to stay afloat in school and at work without sacrificing my health. I keep telling myself that once the colonoscopy is done, once I get my meds sorted out, it will all be better and I’ll be able to be myself and do everything again. And I really really hope that turns out to be true.

Professor Gregory House, M.D.

December 20, 2010

I’m in the middle of a flair, I think. Comes and goes. Last night and this morning were rough.

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I had a dream. In my dream Dr. House was my professor. I do not think that I was in class, exactly, but I was certainly under the supervision of a T.A. at the time. This T.A. was on a power trip, I suppose, and told me I was not allowed to go to the bathroom (when does this happen in real life? Not often.). So, I ran to Dr. House and told him how his T.A. was being horribly insensitive towards my condition, and to get him to behave properly. Dr. House seemed somewhat sardonically amused by the situation and told off the T.A., at which point I went off to the bathroom, where they had curtains instead of stall doors. Then something like the apocalypse occurred, we all started running out of the bathrooms, and I woke up.

My subconscious really likes to tell people off. I would be righteously indignant a lot more often in real life if I could think of something cleverly demeaning to say on the spot to make the person understand how much worse of a human being they are than I, but realistically I usually only think of what I would have said an hour or so later.

Good and Bad

November 6, 2010

I few days ago I had a couple of pretty bad Crohn’s days. But, I realized, they were only bad compared to how good it’s been. For at least this semester, I’ve been very consistently sleeping through the night, and on the maybe 3 nights I’ve had to wake up to go to the bathroom, it’s been once and only once. Time was I would be up several times a night, every night. I had a very predictable wake-up call 2 hours before I wanted to get up, courtesy of Crohn’s, and other less predictable ones throughout the rest of the night. So when I was awoken the other night, I was highly disgruntled. But only because I wasn’t used to it anymore, which I can only count as a blessing.

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Also, here’s something weird I’ve noticed: My Crohn’s is much, much more active while I’m at home than while I’m at school or at work. I haven’t tested it far enough to figure out if it’s actually home versus out, or if it’s morning (when I’m usually home) versus day (usually out) versus night (usually home). But it’s very noticeable. I don’t usually have to jump up in the middle of class, and I usually only leave my chair at the library once per 4 hour sitting. Sometimes I only have to use the bathroom once in a whole 7-12 hour day (not usually but sometimes). But then I get home, and it hits me over and over and over. Maybe I’m less careful about what I eat when I’m home? Maybe I have less of an incentive to hold it? Maybe I psych myself out fight-or-flight style so that the system slows down when I’m away from my own bathroom? I really couldn’t say.

Blood

March 12, 2010

So last night I was not doing so great, and I can’t think of a reason why. Urgency, frequency, the works. And then I woke up this morning to blood. Not the extent I used to get as a kid, but more than I’ve had in a while. Plus, last week I was getting some cramps, nowhere near the right time to be getting them. I’m thinking that’s more likely related to this.

Now aren’t we glad I emailed the doc? Going in on Tuesday.