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.
September 19, 2011
Now that my weekend of self pity has come to an end, it’s time to get back on the blogging horse. I’ve been MIA since December for a number of reasons, chief among them that I was abroad in Egypt* and then traveling until the end of June. These travels are documented at One if by Camel, Two if by Carpet. One blog is really all this girl can handle. After that I’ll be honest and say it was just lack of motivation.
*A word to the wise: you will get Pharaoh’s revenge if you go to Egypt. This is not fun when you already have Crohn’s.
When I finally got back to New York and tried to get my prescriptions transferred over here (always a hassle and a half) I found out that I had managed to go almost a year without seeing my GI and they couldn’t keep prescribing me immunosuppressants without checking in and getting some bloodwork. Oops. Unfortunate side effect of traveling for six months. I’ve been meaning to switch to an adult GI in New York for a while now but never quite gotten around to it because the pediatrics hadn’t bothered kicking me out and I could always schedule my appointments for school breaks. But I’m not back in Boston until probably Thanksgiving, so this time I had to switch.
I had an appointment for the morning of September 14th, but apparently they switched the doctor’s schedule and didn’t bother to tell me, so when I showed up it was “your appointment is tomorrow, Miss Flowers.” What?? Really now. And to make it worse, they didn’t own up to having messed up. The girl just kept explaining to me how the schedule had been changed like I was too stupid to understand, and not like they had forgotten to call and ask if I could even make the new time. It happened could make it, and it was even a more convenient time for me, but I had already worked my whole day around the old time! I finally got the girl to tell me that the secretary was supposed to have called me but must have forgotten, which is fine. Annoying, but humans make mistakes, which I am happy to be understanding about. Just don’t pretend you were totally in the right.
When I finally got to see the doctor I was much happier. The reception was a disaster, but he (and his two associates I spoke to before him, I can only assume they were junior staff or something) seemed more than competent. I was really happy that they listened to my current case, said “you shouldn’t be living like that” and decided to shoot for symptom free. My old doctor never seemed to see symptom free as a goal. He wanted to make it better, but he was happy to settle for just a little better. The new guy wants it to be totally better.
But with that came the realization that my case is worse than I thought. I have an average of 7 bowel movements per day, at least one of which almost always wakes me up in the middle of the night. My appetite is patchy, and I never feel like I’ve gotten the proper nutrition out of the food I eat. I feel tired all the time. I have flares every couple of months but even in between I never feel really good. My old doctor never seemed too concerned, and since Crohn’s isn’t life-threatening, I just resigned myself to having to deal with this. I thought of it as being mild, compared to people with “real diseases”, and I really thought this was what well controlled Crohn’s was supposed to be like. I have problems, but everybody poops. I just do it more and it sucks harder. The new doctor told me he’d consider my case moderate to severe and doesn’t think it’s well controlled at all. He doesn’t accept that I should “just deal with this” like I’ve been doing.
And, higher expectations for where I can get to means more aggressive treatment, which scares me a lot. There’s a lot that I didn’t know (possibly because they don’t talk as much about the scary stuff in pediatrics?) about other risks as the disease goes on (I’m coming up on the 12 year mark now). Fistulas, cysts, colon cancer, all that stuff. I knew I needed a colonoscopy soon, but apparently now I’ll need one every 1-2 years instead of every 5. And they have to biopsy to check for early stage colon cancer.
And apparently, I’ve basically taken everything you can take before it becomes time to move on to Remicade or Humira. I have been so against these ever since I heard about them a few years back because that’s serious business, and my Crohn’s is really not that huge a deal. I don’t have the kind of disease where you have to go in to the hospital just to get your routine medications (or yes, I know you can inject Remicade at home, but I don’t like that either). Apparently though, I do have that kind of disease (unless bumping up my 6-MP dose is enough on its own, which the doctors don’t seem super hopeful for) so now I have to start seriously considering the possibility of going on the serious business drugs.
But first is the colonoscopy, so they can see exactly what’s going on, what the level of inflammation is, etc. October 11, 1pm. My dear mother is coming down to the city to make sure I’m okay afterwards (last time my legs cramped up for the whole evening, apparently a reaction to the anesthesia), and I’ve been forbidden by my roommate to go to class the next day.
All this has been really hard for me to hear, and consequently I spent the entire weekend, as I said, in one big pity party. I’ve been sewing like a madwoman to take the edge off, but it’s been really rough. As soon as the doctor told me I’m not doing as well as I thought I started feeling like a sick person. Nothing has changed other than my perception of my disease, but I feel physically much worse. This must be what they mean when they talk about the placebo effect. Your body physically manifests what your brain thinks is going on. So now I feel awful. Working is a huge burden, and I’m more tired than ever. I’ve been trying to take some time to myself to adjust and heal, or whatever, but it’s hard when I have so many things I’m supposed to be doing, including social interactions, which are just stressing me out at this point. I just wish I could take a week off and get it together.
Super long winded post today, but there was a lot to say. A couple questions before I leave you.
Has anybody taken Remicade or Humira, or know about them, who can tell me about it? Should I be worried? Are there side effects, a rough adjustment period, etc.? Does it really work as well as the doctor says it will? Should I get a second opinion before starting this?
Anybody have great ideas for “low residue” meals I can make for the week before my colonoscopy? Or good clear liquids for the day before (I know it’s impossible to make a meal out of this)?
I hope all of you are doing well.
December 20, 2010
I’m in the middle of a flair, I think. Comes and goes. Last night and this morning were rough.
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.
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.
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.