*sigh* It's like having a puppy

Rant post

<<begin rant>>

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

thanks, all

<<end rant>>

I read the whole thing! Look, people are jerks. Even your boss has his moments. My philosophy is that he is going to do whatever he wants to do and you arguing with him about it is not going to change anything. So, why bother. I had a boss whose son had Crohn's. I thought that would make him a little more apathetic to my situation.....it didn't. His son's case was always so much worse than mine. I get everything you are ranting about, and I agree with you. But it sounds like you just have to sit back and wait until he hits another flare. Then he will be asking for all of your advice again. If you love you job, hang in there, it will pass.

Thanks, lemonhead, you're absolutely right. You guys are great xxoo

In real life I've been dissed by IBD people and it made me much madder than other people.
That's why I don't really want a doctor who has UC, because their treatment may be biased towards how their UC acts, not mine.

I was "the boss" when I was self-employed and took 2 sick days in 24 years. Because if I didn't work there was no paycheck (didn't have a great employee like you). I scheduled my blood transfusion for overnight so I wouldn't miss work (very anemic but kept working).

Try not to let your boss's UC overshadow your own situation and don't get in a p***ing match, he's the boss.

Like they say in Washington "If you want a friend get a dog."
He's lucky to have you but now that he knows exactly what UC is like he may wonder about your ability to do your job (based on his own ability). Before your symptoms were theoretical, now he knows what it's like.

Good luck.

janey47: If you are getting irritated by your boss, you might want to limit your discussions a bit and have a "boundary". You got irritated with him because he asked you how many bowel movements you have, right? Or were you irritated at his response? There is no boundary to the conversations you both are having with each other. Anything goes. Set some boundaries before you do end up losing respect for him.

janey47:  tell your boss to come visit this forum    Tell him there are tons of great resources here.  But before you do, let me know and I will delete this thread so he won't see it

never knock the queue cutting benifits of UC. I love using this disease, VIP camping, disabled toilets and viewing platforms at festivals!
rince this thing dry, in the UK they're campaigning for disabled car parking badges, that may be a step too far though