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.

Advertisements

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.

Back to School

August 30, 2010

Blogging to fill the time between eating lunch and leaving my appartment. Seriously, if I left right now it would be a half hour (spent walking) before I was at a bathroom, and I would start to need one about 10 minutes in. So I wait at home, let it all sink in, then bathroom, then errands.

——————————

Saturday was a driving day. At least four hours in the car, broken up variously, and that takes some intense planning for a Crohnsite. I  wanted to minimize eating while actually driving, which meant that before we left I had to eat a pretty substantial, protein filled lunch without going to the greasy or otherwise problematic foods. I ended up going with meatballs, which worked out well.

We had reservations at a great place in Stamford for dinner that night, and after an excellent meal, out came the desert menu. There was an almond cream tart with raspberries, and with very little hope I asked the waitress if the almond cream portion was cream with almond flavoring or if it was actually made from almond milk. And since I’m blogging about the experience you can probably guess that it was made with almond milk! Almond cookie topped with a thick almond cream and whole raspberries, topped with a mint garnish and a dark chocolate drizzle. (I wanted to paste in the menu description but it isn’t on the online menu.) You cannot imagine how incredible this was. I was in heaven.

——————————

And now I’m back at school, armed with physical copies of my scripts so the pharmacies don’t give me a hard time, ready to take on the world. Or probably just my next semester of classes at this point. Classes now, world later.

New News

August 25, 2010

Wow, I was starting writing this thing with a nonchalant reference to “my trip,” and then realized that I haven’t told the internet about this yet! How could I forget?? So, before I get to the intended content of today’s post, let me say officially that I will be spending the first few months of 2011 in… Egypt! My spring semester this year is going to comprise various seminars on Egypt/archaeology/Egyptology, coloquial Arabic classes, an archaeological excavation in the oasis, and finally a month of travel to all the cool sites, well known and otherwise. This is going to take some doing as a Crohn’s patient. Filling scripts is not easy, nor is the mail reliable. I will be carrying in everything I need (plus some emergency antibiotics) for upwards of 3 months. Once I get there, staying healthy and minimally Crohnsie is going to be a matter of (luck and) eating very very carefully. We have a chef who cooks family style for everybody at the dig house, and I’ll be making very good friends with him, then remaining extremely vigilant about what I eat. I’ll also have a stash of my own food (I hear from a previous student with celiac that protein bars are great, and lots of people have liked having a jar of peanut butter) to fill in the gaps. Even so, all the first timers in Egypt get “Pharaoh’s Revenge,” which is 3 days of diarrhea, stomach cramps, and vomiting. Sweet. At least I won’t be the only one.

——————————

And now back to our regularly scheduled programming!

So this morning I went to see the doctor, to check in before I go back to school, and also to get everything squared away for my trip (there it is). I waited in the room for an hour and a half before he showed up. But once he did, I got hard copies of my scripts to take back to New York (a preemptive strike against the evil pharmacies of New York City) and some for Egypt so I can work out the kinks on the vacation override in advance. We also decided it’s likely that I am both lactose intolerant and sensitive to milk fat, but I don’t have time to get the test right now, so we’re just going to keep doing what works without the official test.

Oh, and he broke it to me that I’m going to need another colonoscopy next year. Awesome. I love that. Last time I had a colonoscopy was in ’06, and I spent the rest of the night hunched over on the couch with awful leg cramps that somehow resulted from the anesthesia (take home lesson: don’t let a man named Igor administer your morphine). That probably won’t happen again, but it still makes me nervous. Number 3, here I come.

Today I finally got through the month’s worth of emails I had been neglecting, and I found among my Twitter requests one from Baron Gottsacker, who has an upcoming website, Adapt Cookbook, that I’m so excited for! It’s a cookbook that is designed to be Crohn’s friendly, which is perfect for me! It even seems to be lactose free, leaning towards organic. I would probably change the recipes myself to be less organic, maybe soy milk instead of “lactose free organic milk”. The website isn’t fully functional yet, but it should be shortly and then I’ll start trying recipes; I can’t wait!

Ugh. I just typed this all up and then it erased it when I hit publish. Take 2.

——————————

Even though it was literally a hundred degrees out, I did not have ice cream for dinner on Tuesday. I had sushi. (The power went out at my house so my family went out to dinner, and you don’t say no to sushi.) But I had ice cream right after dinner. I had a taster each of a ginger snappy thing and malted Oreo cookie (my ice cream shop calls Oreo ice cream “hydrox” for reasons unbeknownst to me), and eventually went with a micro (the real small, since “small” in ice cream shop speak seems to mean “lots”) of regular old non-malted hydrox. And with it, 2 Lactaid pills. One before the tasters, and one before the micro just to be safe.

Either it didn’t work, or I was in for a rough night anyway. I could not tell you. All I know is that today is the 5th day in a row the temperature has been above 90, and I will not be having ice cream again tonight, nor any other time soon. I’ll stick to my iced coffee with goat’s milk (and by the way, yum).

Side note on goat’s milk: I’ve had this in a few things so far and it’s scrumptious. Ooey gooey animal fat. I love it. In cooking, you absolutely cannot tell the difference. In other stuff you can definitely taste the goatyness of it. But it does not, as I feared, make your coffee/smoothie/whatever taste like chevre. The taste that separates goat cheese from cow cheese is in there, but the cheese flavor itself isn’t. I don’t know why I  thought it would be, but I did, and it isn’t. (Thank god.)

For a while now, I’ve been totally unable to eat the right amount of food to feel full and nutritionally satisfied. Have I talked about this before? I guess not since finals. I don’t remember if I had a reprieve between now and then, but it’s been at least a month. Here’s how it goes: 1. I eat, I don’t feel satisfied; 2. I eat something else, that doesn’t work; 3. I keep trying until I get too full to try anything else (but still feel nutritionally off) or until I find something that works (for now). Then there’s the learning curve: 1. I eat, but less than before because I know I’ll end up trolling for something in an hour. Repeat 2-3 as before. The result, that I probably get even fewer of the nutrients I need by eating less at mealtimes.

A few weeks ago we discovered that it was absolutely imperative for me to have meat (protein, yes, but actual cooked animal does the trick like nothing else) in my diet always. Often when I’m feeling less than fully fueled, a good hunk of chicken makes me feel much better. But it’s obviously not all I need, because just having meat consistently does not necessarily stave off that feeling of lacking. Last night’s dinner was hearty- 2 sausages and a few little caprese sandwiches (with buffalo mozzarella, no lactose!), but sure enough an hour later I was standing at the fridge, trying to find something to fill the hole.

I really don’t know what to do about it at this point. It’s been a month and I can’t find anything more than a quick fix. I know you always get hungry again, but this is different. There’s something I’m missing, and I don’t know what it is.