April 20, 2012
When I was in sixth grade or so (only a couple of years post-diagnosis), my family went to Disney World. We wanted to go on Splash Mountain, and I was super nervous but also excited. I really wanted to ride it but I was new to roller coasters and I had no idea what to expect. I kept getting part way through the line and then needing to use the bathroom and ducking out, then getting to the bathroom only to find it was a false urge. It mast have happened three times. I gave up for the day and we went back to the hotel.
I finally managed to ride Splash Mountain the next day. But it was a huge struggle, for such a little thing.
Most people’s is probably like this, but my Crohn’s keys in on stress so strongly. I hate that the hardest part of my life gets worse when everything else is hard. It’s like, “Oh, your life is hard right now? Let’s go ahead and make it even harder.”
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.
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.
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.
May 4, 2010
After a grueling week, I have finally finished the bulk of my work for the semester. And I have not been feeling so good. I’m having trouble sleeping, and moreover I can’t seem to find the right food balance. It seems like every time I eat a meal, no matter what it is, I come out full (volume-wise), but nutritionally lacking. Hence I just went out and bought cookies, of the chocolate chip variety. I feel better already. I’m extra sensitive to what I’m eating, constantly watching for problematic Crohn’s foods, and also just making sure I have enough of everything I need because my constitution is so weak. I get really light headed really fast if I don’t get enough to eat or drink, and so I’m really wary of it. I think this week was a confluence of stress, an erratic schedule, eating poorly, and just being nervous that I might pass out during a test! (I didn’t, though, I made it through 3 of 4, and the last one is easy.)
March 11, 2010
It is seriously time to take a break. I’ve been studying pretty much nonstop for the past 2 weeks, which is a killer because it’s so nice outside!! Even though I’ve been sleeping 8-9 hours a night (I can’t afford to sacrifice sleep to the altar of midterms, no matter how much I want to keep studying), I still feel exhausted by 3pm every day. 2 weeks of overwork will do that to you. Luckily my Spring Break starts tomorrow, and on Sunday I’ll be going home for some major rest. I can’t wait.
I’ve emailed the doc to see if I can get an appointment while I’m home so I can talk out this whole lactose intolerance thing with him. I assume he’ll have dealt with stuff like this before and be able to give me some good information on stuff like why I can eat cheese no problem (or if that’s just wishful thinking) and what else I can eat to replace the nutrients from milk. Maybe I’ll even get tested so I’ll know for sure if this is lactose intolerance or some kind of milk allergy (I had never heard of this, but one of you suggested it to me as an alternative).
January 29, 2010
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).
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.
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.
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.