Posted 5/15/2013 10:54 AM (GMT -7)
My boss is in remission and tapering prednisone after a very bad first flare, which his initial GI did everything possible to make worse. I know, I really truly know, all of the magical thinking that one goes through in one's first remission. The idea that it'll never happen again. The idea that you can control it. The idea that if you do have another flare, it's because you weren't vigilant in your diet or your meds. The idea that if you do have another flare, you can quickly go into remission using the exact same strategy as your first.
So I mentioned to him that I was going to try to watch my intake of histamine rich foods, and give that DAO enzyme thing a try, to see if that makes any difference. He's like, "That's just a theory". I told him that the idea that gluten could cause a flare is also just a theory and it's one that he buys into (as do I).
I can't get on board with the idea that you just dismiss out of hand any possibilities, no matter how far-fetched (fecal transplant, anyone?), but worse is the fact that this is my BOSS, and I can harass him and disagree with him to a point but there's always that point where you think you should back off. And of course everyone's UC is different.
He was hospitalized for 10 days and I blame it entirely on two things -- first, he waited too long to seek medical help, and second, his first GI REALLY messed him up and kept switching Rx's without giving the drugs any chance to take effect. So, okay, you bet, he has had a way worse time of it than I have. But he took 6 weeks off work, of which he worked part time from home for about the last 3, and he's still working a short day every day, which means that I'm doing the work he isn't doing.
But that has also kind of given him this sense of entitlement, like "oh poor me, my health is so much worse than yours" so when I told him I was in a flare again, he has consistently told me it's not as bad as I think. Even though I don't do that with him. And the fact is that, once the prednisone kicked in for him, he was in complete remission in 5 days -- no urgency, solid stool, no blood, no mucus, and one to two bm's a day.
Yesterday he said, "well, at least you're not having really bad abdominal cramps" and I was like, "I'm a woman. I've been having really bad cramps every month since I was 13 and haven't had the option of lying in bed until they pass." Ugh, I mean, really.
He asked this morning if I was better and I'm like, well, you know, it looks like the bleeding is getting under control, but it starts and stops, it's not like I have a magic pill that makes it go away forever, despite your great response to the drugs in your first flare. So he's like, do you feel okay? And I said, yeah not really. So he said, do you need to take time off? and I said, I don't really have that option.
I really don't. I have to live with this disease, whereas he apparently can stop his whole life when he's in a flare.
Sorry. I just needed to get that all off my chest.
Okay. One more thing. He told me that he got a letter from his doctor stating that he has this disease and that he's going to use it when he takes his kids to Disneyland this summer to get a disabled pass so that they don't have to stand in lines. I was like, oh come on. Come on. That's some kind of rich people privilege bullcrap. That's teaching your children terrible values. His response? "Standing in line with 4 kids acting up is a real drag." I told him that cheating to get to the front of the line enables bad behavior and that the only way to stop bad behavior is to not tolerate bad behavior, not to enable it.
I really like my boss. I really like my job. I also need to say that I scheduled all of my breast cancer treatment in such a way that I took a total of 2 days off of work for it (and left early a few times when the radiation was tiring me out). Breast cancer. 2 days. And I've only taken 2 days off work because of the UC in the last 4 years (not counting the 2 days for colonoscopy & prep before diagnosis). So he values me, too, and probably for most of the right reasons.
And I just really don't want to stop liking and respecting him.
Being able to post this rant is taking some of the pressure off, so thank you guys for being here, even if you aren't going to waste your time reading all of this LOL