**Scroll to the bottom of the page to turn off the music!**
Crohn's Disease is seriously the shittiest thing in the world. Pun intended. It is probably one of the least publicized and most life-altering thing to have. It's like the gateway disease. Once you have it, you start on all these medications that just lead to other problems, like arthritis, liver & kidney disease, and even leukemia. And my sister Kate has it.
I can't even begin to tell you how upside down her world has turned in the last two and a half years. She went from just fine to 30 days in the hospital, bleeding, vomiting, shitting in total pain and humiliation, with no privacy and very few understanding or compassionate nurses and doctors to help. And at the end of all of that there was still no cure for it, just a handful of drugs to take 18 times a day and a "we'll see."
Have you ever take Prednisone? How about Flagil? Asacol? Reglan? Protonix? Well imagine being on them for over two years (and a ton of other, far more expensive ones too) and waking up to find that the prednisone has weakened your bones to the point of arthritis, leaving you constantly fatigued, and that the flagil has caused peripheral neuropathy, which is just a fancy way of saying that your limbs are in a constant state of that fallen-asleep numb feeling and your brain just isn't cooperating the way it's supposed to. How about taking a $1000+ a month medication that has no generic version, and finding that 8 of nine of them have passed through you whole. Not exactly encouraging, is it?
And then on top of that having everyone on the planet tell you that you'd get better if you'd just make better food choices. Which is the biggest pile of you know what because, um, 'scuse me, but don't you think if there was a menu called the "Get rid of Crohn's by eating this" menu that surely everyone would stick to it? Because I can promise you, if it meant not living with a toilet tethered to your ankle, you would. And if anyone is motivated to get better, it's someone who has to visit Uncle John 20 times a day.
So after two and a half years of fighting for care, from a doctor who's recently revealed himself to be the biggest shithead of them all, she is starting over. And she's not alone. My mom has been very involved from the beginning - Kate's best advocate. Kate's boyfriend Thomas reaaaaaalllllly loves her and is totally there for her. And I am three hours away researching and blogging about it. And can I just say, that if I were her, I wouldn't be half as sane. And positive. And humorous. And that, I think, deserves a metal.
Or at least a donation for the Take Steps Be Heard walk. That's right, we're walking for Crohn's on September 17th, and we need your support! This is really the underdog of diseases, and every dollar helps to find better meds, create better resources, treat so many people who have been diagnosed with Crohn's, just like my sis, and to hopefully find a cure.
Thanks for all your support!