CCFA has scheduled a new webinar/teleconference for December 6:
Managing IBD: Taking Charge of Your Disease
Unfortunately I'll be busy at the time of the 'cast, but CCFA is excellent at archiving their webinars for future viewing, as they did with the IBD&She one back...whenever that was.
I also noticed they've got another link up for webinars:
Optimizing care for patients with IBD: highlights from the "Advances in IBD" conference
Unrelatedly, bookshelves of doom had a link to a Judy Blume interview! Sweet!
Judy Blume: Often Banned, But Widely Beloved
Consider me one of her full-on belove-rs.
Showing posts with label CCFA. Show all posts
Showing posts with label CCFA. Show all posts
Thursday, December 1, 2011
Wednesday, August 24, 2011
YAY more Mike McCready
Mike McCready talking about Crohn's Disease and running.
I love his nutshell description of Crohn's. It also reminds me of this time I was talking to my friend D. who has chronic regional pain syndrome; we chat about pain lot in a strictly noncompetitive sense. (Really! Okay, 90 percent of the time.) Anyhoo, she said, "Hey, I had super bad gas the other night, and as I was writhing in pain on the floor, I thought, I wonder if this is what ulcerative colitis feels like? I'll ask Peppery." Man, I just love my friends.
I love his nutshell description of Crohn's. It also reminds me of this time I was talking to my friend D. who has chronic regional pain syndrome; we chat about pain lot in a strictly noncompetitive sense. (Really! Okay, 90 percent of the time.) Anyhoo, she said, "Hey, I had super bad gas the other night, and as I was writhing in pain on the floor, I thought, I wonder if this is what ulcerative colitis feels like? I'll ask Peppery." Man, I just love my friends.
Wednesday, April 13, 2011
Pregnancy, fertility, lookin' sexy and other "ladies-only" stuff
Okay, you know I really don't believe that the above subject line is really "ladies-only" stuff, especially, I might emphasize, the "lookin' sexy" part.
My shocking revelation:
I don't know if I want to have children. Wild-and-crazy, right? But seriously now, I see some of my friends getting pregnant (because we're just at that fun baby-making age, apparently) and I see other friends raising their children, and I see still more friends dealing with their grown children and their new grandchildren.
A. and I wrangle back and forth about it ("Do you want to talk about it?" "I don't know. Do you?" "I thought you wanted to talk about it." "What do you think about adoption?" And sometimes, a day after I've proclaimed thoroughly and loudly my desire that we should A|remain childless or B|have lots of kids for C|whatever present reasons, I come out with some argument for the opposition, which leads A. to grasp his head and make loud unintelligible noises) but ultimately, we're still undecided.
One of our big recurring discussion pieces revolves around the ulcerative colitis. I'm worried (as I repeatedly hash over via keyboard on this blog) about passing on the nasty stuff, or about flaring during pregnancy. I worry about being unable to calm a flare without resorting to crappy meds. I'm incredibly worreid about my meds affecting the fetus during pregnancy and with breastfeeding, especially since breastfeeding has been shown* to increase a person's defenses (so to speak) against developing IBD. I'm worried about needing A. to look after both me and the baby, if I'm all incapacitated after the birth. And I am stupidly worried about all this nonsense when lo! I am not even pregnant and I AM on birth control.
Ahem.
Considering all that, I'm not sure why I still have a sometime-urge to start a family. It could be a mystical maternal instinct. It could be the Neverending Poke of Conformity. (It's a sneaky Poke, that one. Always getting you just before you fall asleep, or as you're admiring a pair of red pants.) It could also be that I am constantly channeling John Locke because I don't want any damn autoimmune disease telling me what I can't do!**
I don't really have the time to research the pregnancy/UC stuff, I just occasionally talk to my gastro or read an article or happen upon some alarmist shit on the Internet. But luckily, there are doctors who do research this stuff. And without further (endless) (seriously, infinite) ado, here's CCFA's webinar by two doctors on IBD and the lady population:
IBD & She
(I know, it took me a while. But I got there.)
If you can't access the webinar for some reason, here are the slides and transcript:
Slides
Transcript
I loved this, cheesy name and all. Not only did it give me more solid hope that I could have a biological kidlet of my very own without irrevocably damning them to ulcerative colitis, but I also learned that screwing up a fetus with my UC medications is more difficult than even I imagined. I feel a little less like a freak after listening to this. I still don't know if I want a baby, one that's biologically mine or not.
A note: UC/Crohns ladies even less interested in the pregnancy/fertility discussion, you should still check out this webinar, because the docs also discuss menstruation and menopause, self-image and self-confidence issues, birth control, and intimacy/sex life problems. All these topics should probably have individual webinars and discussions, but this is a great start. Thanks to CCFA for sponsoring this, and I heartily vote for more to come.
* Mentioned in the webinar! I suppose I need 3 sources, though. Damn it.
** Eh, double negative, waaah. DON'T TELL ME WHAT I CAN'T DO, grammar nazis!
My shocking revelation:
I don't know if I want to have children. Wild-and-crazy, right? But seriously now, I see some of my friends getting pregnant (because we're just at that fun baby-making age, apparently) and I see other friends raising their children, and I see still more friends dealing with their grown children and their new grandchildren.
A. and I wrangle back and forth about it ("Do you want to talk about it?" "I don't know. Do you?" "I thought you wanted to talk about it." "What do you think about adoption?" And sometimes, a day after I've proclaimed thoroughly and loudly my desire that we should A|remain childless or B|have lots of kids for C|whatever present reasons, I come out with some argument for the opposition, which leads A. to grasp his head and make loud unintelligible noises) but ultimately, we're still undecided.
One of our big recurring discussion pieces revolves around the ulcerative colitis. I'm worried (as I repeatedly hash over via keyboard on this blog) about passing on the nasty stuff, or about flaring during pregnancy. I worry about being unable to calm a flare without resorting to crappy meds. I'm incredibly worreid about my meds affecting the fetus during pregnancy and with breastfeeding, especially since breastfeeding has been shown* to increase a person's defenses (so to speak) against developing IBD. I'm worried about needing A. to look after both me and the baby, if I'm all incapacitated after the birth. And I am stupidly worried about all this nonsense when lo! I am not even pregnant and I AM on birth control.
Ahem.
Considering all that, I'm not sure why I still have a sometime-urge to start a family. It could be a mystical maternal instinct. It could be the Neverending Poke of Conformity. (It's a sneaky Poke, that one. Always getting you just before you fall asleep, or as you're admiring a pair of red pants.) It could also be that I am constantly channeling John Locke because I don't want any damn autoimmune disease telling me what I can't do!**
I don't really have the time to research the pregnancy/UC stuff, I just occasionally talk to my gastro or read an article or happen upon some alarmist shit on the Internet. But luckily, there are doctors who do research this stuff. And without further (endless) (seriously, infinite) ado, here's CCFA's webinar by two doctors on IBD and the lady population:
IBD & She
(I know, it took me a while. But I got there.)
If you can't access the webinar for some reason, here are the slides and transcript:
Slides
Transcript
I loved this, cheesy name and all. Not only did it give me more solid hope that I could have a biological kidlet of my very own without irrevocably damning them to ulcerative colitis, but I also learned that screwing up a fetus with my UC medications is more difficult than even I imagined. I feel a little less like a freak after listening to this. I still don't know if I want a baby, one that's biologically mine or not.
A note: UC/Crohns ladies even less interested in the pregnancy/fertility discussion, you should still check out this webinar, because the docs also discuss menstruation and menopause, self-image and self-confidence issues, birth control, and intimacy/sex life problems. All these topics should probably have individual webinars and discussions, but this is a great start. Thanks to CCFA for sponsoring this, and I heartily vote for more to come.
* Mentioned in the webinar! I suppose I need 3 sources, though. Damn it.
** Eh, double negative, waaah. DON'T TELL ME WHAT I CAN'T DO, grammar nazis!
Wednesday, December 5, 2007
Happy horseapples and the like
The Crohn's & Colitis Foundation of America is starting to irritate me. Naturally, I have no real evidence against them other than the fact that they send my membership bills at very inopportune times (say, every Christmas season when I'm paying two hundred and some change for heat, so I do not have money for gifts, let alone thirty dollars for a single membership fee. Pathetic. Now I feel much better) but today I came home to THIS.
All right, so this is my garbage bin. I come home to it every day. Let's see what's inside! (Okay, we can't, because the evidence is in shreds, obviously the result of some mad berserker just passing through eel infested waters...)
Suffice to say, it was a letter from the CCFA. A membership reminder, you ask? I thought so at first, until I noticed hmm, zero percent financing for all of 2008? Wait a second. I see. In addition to Shire, Salix and Bristol Myers Squibb, CCFA is also in bed with Bank of America! So nice of them to sell my address! Of course, since it's in the interest of getting a hot little BoA credit card with the CCFA logo on it, I guess it's okay.
Oh no, I see, through some halfhearted googling, the Bank of America is CCFA's bank! That explains ... something?
I give up. Too much homework (a state which will change next Thursday midnight) has obviously addled my brain.
Neat fact of the day: you can warm dying rechargeable AA batteries in your hands and they will then work in your camera. Wow! I guess it's better then if they exploded. Or is it? Eh. Useless post. Back to homework.
All right, so this is my garbage bin. I come home to it every day. Let's see what's inside! (Okay, we can't, because the evidence is in shreds, obviously the result of some mad berserker just passing through eel infested waters...)
Suffice to say, it was a letter from the CCFA. A membership reminder, you ask? I thought so at first, until I noticed hmm, zero percent financing for all of 2008? Wait a second. I see. In addition to Shire, Salix and Bristol Myers Squibb, CCFA is also in bed with Bank of America! So nice of them to sell my address! Of course, since it's in the interest of getting a hot little BoA credit card with the CCFA logo on it, I guess it's okay.
Oh no, I see, through some halfhearted googling, the Bank of America is CCFA's bank! That explains ... something?
I give up. Too much homework (a state which will change next Thursday midnight) has obviously addled my brain.
Neat fact of the day: you can warm dying rechargeable AA batteries in your hands and they will then work in your camera. Wow! I guess it's better then if they exploded. Or is it? Eh. Useless post. Back to homework.
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