Bonus prompts? Hmmm. Favorite blog? Can't - there are too many that I love for different reasons. Favorite Tweeter? Haven't really been following health tweets long enough to call something my favorite. Recap a Tweetchat - I've only followed along on one and OMG I was emotionally SPENT at the end and I think I cried for two hours. No thanks. Tap. Tap. Tap.
I read something on Facebook the other day that I really connected with. So many of the things I've said or thought inside my head are in this document - things I never wrote down. Someone did though. And I am totally copping-out on day 2 and sharing this instead because I think a lot of the issues addressed cross over many illnesses, not just the one that I live with. So, Anita Summers - member of Coming out of the Bathroom - No Longer Hiding My Ostomy thank you for putting to paper the following words:
I have put a * in front of things that have crossed my mind before
BEGIN QUOTE - To my friends, family, co-workers, and anyone else who wants what's best for me, before you try to talk me out of having ostomy surgery, please consider this:
You don't really know me.
You don't really know what it's been like to live in my body, with my disease.
*You don't know what it's like to be afraid to fly, because you might have to suddenly go to the bathroom while the plane is taking off or landing.
*You don't know what it's like to not be able to take your children trick or treating, or skating, or horseback riding, or for a walk in the park, or on a field trip with their school, or for a bike ride, or to go swimming out in public, because you have to stay within about 1 minute of a bathroom.
*You don't know what it's like to be afraid to eat - every single meal - because you know you'll pay for it afterward in terribly painful symptoms.
You don't know what it's like to be on a drastically restricted diet for years, trying to figure out what you can and can't eat to avoid being more ill, let alone to get well.
*You don't know what it's like to never feel comfortable going to parties, because of the guest/bathroom ratio.
*You don't know what it's like to never be able to drive your children and their friends anywhere together, for fear of having a bathroom accident in the car on the way.
*You don't know what it's like to have a bathroom accident in the car in front of your children/ grandchildren, especially the teenagers.
*You don't know what it's like to miss theater performances, or movies, or dinner with friends, or a plane, or your children's sports game, or their play that they're starring in, because of being stuck in the bathroom.
*You don't know what it's like to always have to sit in the very back of the live theater, or in the very front of the movie theater, or on the very far side by the door, so you can make a run for it if needed.
You don't know what it's like to never be able to go to the mall because the bathrooms are too few and far between.
You don't know what it's like to be unable to enjoy a physically intimate relationship with your partner for months or years, because of severe pain near that area.
*You don't know what it's like to have to always check and see where the bathroom is first thing, when you're in a new place.
You don't know what it's like to have to make the choice between leaving your very young children/grandchildren in the back of the store while you run for the bathroom at the front, or being slowed down by bringing them with you and trying to make it in time - and risk failing.
You don't know what it's like to have to always shop at inconvenient times because you can't risk getting stuck in a long line at check-out.
*You don't know what it's like to be chronically anemic because of constant blood loss from your disease.
*You don't know what it's like to not have enough energy for day to day life, let alone be able to exercise and be in half-decent shape.
*You don't know what it's like to spend hours of your days and nights in the bathroom.
You don't know what it's like to have to clean explosive, bloody diarrhea from the grout in the bathroom floor in the middle of the night, when you're in such severe pain that you can hardly function, but it can't wait till morning.
*You don't know what it's like to spend months on drugs like prednisone, which makes you fat and people look at you and judge you because they think you just "have no willpower", or it makes you irritable and people think you're just a jerk.
*You don't know what it's like trying medication after medication, month after month, year after year, and nothing works.
*You don't know what it's like to have caring, concerned people like you telling me that after years of living like this, I shouldn't "give up so fast" and make the drastic choice to shit in a bag for the rest of my life, thinking that you're in a position to judge that my life will actually be worse off with that choice than it is now.
You don't know me. - END QUOTE
Well, now maybe you do.
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