Oops?

[next_to_normal]

So, I was chugging along at a good clip there, posting everyday for almost a week... and then went two whole weeks without posting anything. Whoops?

I hope everyone who celebrates it had a good Thanksgiving. We had dinner at my parents' house this year (determined by whose house was closest to the hospital where my cousin - an OR nurse - was on call). Considering that I'm still on a pretty strict diet and the medicine I'm taking hasn't seemed to have any effect yet, it went about as well as could be expected for a holiday dedicated entirely to food and overeating. At least it was only my mom's side of the family, since we haven't actually told anyone on my dad's side that I've been sick. For those who like menus, we had: butternut squash soup, salad, turkey (of course), stuffing, mashed potatoes, sweet potatoes, broccoli casserole, corn and peas, cranberry sauce, corn bread, cranberry orange bread, chocolate cheesecake, pumpkin mousse pie, carrot cake, and cookies. (Bonus points if you can guess how many of those things I actually ate.)

My parents went out shopping for Black Friday (my dad is usually up at 4am anyway). I opted to sleep. My parents came back empty-handed (the stores had already sold out of the stuff they wanted), while I went out at 11:30, shopped for less than an hour, and managed to get two Christmas presents. We also put up our Christmas tree while I was home, but I didn't really help much because I was laying on the sofa, supposed to be doing my homework, but mostly just being in pain.

Speaking of the health issues, I've been on the meds for almost three weeks now. I'm taking Asacol HD, which is an oral pill, and an oh-so-fun suppository, which, like I said, don't seem to be doing much good. I've had some luck with seafood, but I'm still unable to eat large portions of the food pyramid (like red meat, processed meat, complex grains, or vegetables in any form, and I'm still a little afraid of milk). I also went for a small bowel MRI to see just how far up my intestines this inflammation goes, which, judging by the pain, I think is pretty far. I don't go back to the doctor until next Thursday, but I'm getting really impatient at this point to just get better. It's almost like I'd sort of resigned myself to the fact that I'd just be sick and in pain forever when it took them months to figure out the problem, but now that we have a diagnosis and I'm on medication, I'm like why the fuck isn't it working right NOW NOW NOW? I think I'm just so far past my breaking point, I don't even know how I'm doing this anymore.

I do seem to have a pretty impressive ability to turn it on and off, though. Like I said, we haven't told my dad's side of the family, but we went to visit my grandmother on Saturday, meaning I had to pretend I wasn't sick and that I just lost weight the usual way (diet and exercise). We couldn't pretend that didn't happen, since I do look drastically thinner. Then I had to eat a meal in a restaurant that wouldn't raise suspicions. It was kind of like a reality show challenge or something. But we went to Red Lobster (see above re: luck with seafood) and I passed with flying colors. People I haven't told generally don't realize I'm sick, which I guess is a good thing? But it's kind of exhausting. It's also kind of weird to have half my family not know. Originally, we didn't want to tell my grandmother, because she'd worry like crazy and call me fifty times a day, and that's really, really annoying. And, I mean, it's not like my aunt and uncle can't keep a secret, lol, but there was this weird limbo thing where we thought it wouldn't be a big deal and I'd get better, and so there'd be nothing to tell. And then I didn't, and it turned out to be more serious than we thought, but the more time that passes, if we tell them, it's like, well, why are they just hearing about it now? And there's weirdness. I don't know.

So, that's me. How's your week?

Comments

[shapinglight]

Sorry to hear the health issues aren't improving yet. Maybe if you give it a little time? Also, maybe there are forums/LJ comms out there who could give you some helpful info about how to manage this condition?

[next_to_normal]

Thanks. I'm sure it'll get better eventually - I'm just impatient after four months. :-P I've been reading a lot, and it's sort of helpful, but my digestive tract is still so inflamed that digesting anything is going to hurt, no matter what I eat. The only thing I can really do is try to stick to the stuff that hurts less and wait for the meds to start working. (Either that, or I go to the hospital and they feed me via IV, but I'd rather avoid that.)

[xxbrightxx.livejournal.com]

I've got Crohn's so I totally feel for you. Middle of the summer all I could eat was white food (carbs like potatoes, pasta, bread and cheese) because I was in so much pain. Don't give up yet, and keep up on your doc because it was when I finally got assertive and told him that something needed to change that things got better for me. Sometimes what I found was good for the back pain was eating earlier in the day (nothing after four, for some reason) and using a heat pad on my back. Good luck!

[next_to_normal]

Thanks... that diet sounds rather familiar. :) I figure I'll give the doctor one more week (until my appointment) before I complain, but if the meds still aren't working by then, then I think we need to try something else.

I haven't had any real back pain, though... it's all been in the front, lol. I wonder if a heating pad would work for that.

[gabrielleabelle.livejournal.com]

Gah. *sends healthy vibes your way*

[next_to_normal]

Thanks! How are things going in your digestive system, btw?

[gabrielleabelle.livejournal.com]

lol! Fine. But I've managed to avoid aggravating my condition in any way. I've just been putting off having a small bowel x-ray done.

[next_to_normal]

Well, if it helps, my MRI was much less unpleasant than the colonoscopy.

[riccadonna.livejournal.com]

Really hope your health improves before the next holiday's (food) ordeal, I'm very sorry to hear that it's still so hard.

[next_to_normal]

Thanks, me too. My mom was optimistic that I'd be better by Thanksgiving, but I was skeptical. Maybe Christmas...

[brunettepet.livejournal.com]

Sorry to hear that the meds aren't doing their job. I hope that just means that they aren't doing their job yet. This is such a drag and not having the family in on your illness just adds more pressure. You have to act fine when you're feeling anything but!

Was there actually anything on that menu that you could stomach? I'd think all the starch would be a real strain on your over taxed system. Turkey looks like the only semi-safe bet.

[next_to_normal]

Heh, actually, it's the opposite - starch is about all I can eat! Well, simple starches. I've been eating a lot of rice, plain pasta, and white bread. Anything with whole grains or fiber is a no-no. I've been calling it the anti-diet, because it's basically the reverse of what you'd eat on a diet to lose weight. :)

I managed turkey, mashed potatoes, stuffing, and a little soup, but I definitely felt it afterward!

[louise39.livejournal.com]

Sending a wish that the meds start to work for you. It must be so difficult not to share personal stuff and yet be easier not to share.

:hugs:

[next_to_normal]

Thanks. I do feel sort of conflicted on the sharing. It would be really nice to have the support of the rest of my family, but I feel weird about doing it after four months. And I definitely don't want Grandmom calling all the time. :)

I think the reason my mom told her side of the family is because she needed their support. But obviously, she's not as close to my dad's side, and he's a manly man who doesn't need emotional support to get through difficult times. :-P

[empresspatti.livejournal.com]

Sweetie!! I hope your health improves more rapidly. You sound miserable.

I also understand about not telling people about your illness. It is exhausting to have to reassure family when you feel bad, plus all the explaining and general conversation.

Still, at some point you are going to have to come clean. Here's hoping it won't turn into a goat-rope (News people can't say clusterfuck all the time)

Your Thanksgiving menu sounds fab! What kind of butternut soup?

[next_to_normal]

Aww, I'm not that miserable! Really, I'm not! lol

Well, I have my good days and my bad days, and I definitely had a few bad ones over the holidays, so that kind of affected my mood.

As far as telling or not, I think it really depends on the family. My mom's side is great - they mostly talk to my mom, so I don't have to field the weekly status updates, but they keep in touch enough that I know they care. And it was nice not to have to pretend to be healthy during Thanksgiving dinner, or explain why I'm eating so little.

But my dad's side... man. They're exhausting either way, because it's all about making them feel better about my situation, whether by reassurance or just pretending to be fine. Good thing I don't see them often!

The soup... I dunno, my parents make it. Not sure what all goes in it, but it's mainly pureed squash and cream, I think.

[ladyofthelog.livejournal.com]

I hope that you start feeling some relief soon! From the perspective of having different, but no less chronic, health problems - the first year was difficult because I had to substantially change my lifestyle (and to an extent, my diet), on top of having a body that wasn't working quite right. It will take time for both you and your body to adjust - but it will get better.

If you can, come clean to your relatives. Make it clear that it's not an issue that you want to talk about unless you're ready to deal with it - but let them know if you're comfortable. You may find that people are ready to help out and accommodate your dietary needs. :)

[next_to_normal]

Thanks! It does seem that the beginning is always the hardest, and once I get things stabilized, it'll be much better. It's just waiting for all that to work itself out that makes me crazy! :-P

I'm pretty sure my family would be fine with dietary accommodations (one cousin doesn't eat cheese, his girlfriend has celiac's disease, and my uncle's the pickiest eater ever). But it's kind of developed this weird dynamic where it feels like it's not my decision. My parents pretty clearly don't want to tell them, and talk me out of it whenever I bring it up. I suppose I'm a grown-up and could call them up and tell them if I wanted, but I dunno... it's just weird.

[petzipellepingo.livejournal.com]

I'm sure the meds will work but, unfortunately, it's probably going to take some time. And with the holidays coming up that's a very cold comfort.

[next_to_normal]

Yeah. My mom keeps being optimistic - first, she said I'd be better by Thanksgiving. Then, she sent me home with lasagna and meatballs (which I totally can't eat) that she's been saving for me. They could continue to sit in her freezer just as well as mine, but she gave them to me on the assumption that I'd be able to eat them before the next time I came home (at Christmas).

Either that, or she's trying to kill me with food. Hmmm....