Rant alert: Has anyone else had this happen more often since gluten sensitivity became big news?
Of course, it's good that people check for celiac disease or allergies or even sensitivities instead of suffering from debilitating conditions that might be remedied through dietary changes instead of major medical intervention.
But what I've got is Crohn's Disease. No one ever asks me what it is.
Instead they tell me that it's gluten or soy or lactose or that I need to get on the Paleo Diet or drink alkaline bottled water or go to an Oxygen Bar or have a coffee high colonic or a a green algae enema or that I could be cured by a fecal transplant or tapeworms or dirt. Or that I need less stress or more mindfulness meditation or should try tai chi or quit having a negative mindset or ask Jesus to intervene. No doubt we all need less stress and it's good to think positive thoughts, but the whacko advice stresses me out and makes me want to kick them.
So I listen and thank them, because I'm sure that they're trying to be kind and helpful, but it would be really refreshing to have someone actually ask me something about it without automatically jumping to share what they vaguely recall having heard somewhere. "I've heard of Crohn's, but I don't know much about it" or "do you think you're being treated effectively?" or "do they know anything about what causes it or how to prevent you getting hospitalized again?"...that would be soooo nice. Kind of like saying, "I'm sorry for your loss" instead of "at least it was a quick death".
I did not cause my own disease. Jeez. That's not the way it works. For most people all they did was to be born, and it's kind of tough to avoid that. All I did was go to India and stay at American chain hotels and eat hotel food (I had a nice plan to travel more "Lonely Planet", but I got sick before I could get to that part). I caught some mystery bug that knocked me flat, and my doctor, and the state's Labor and Industries disability doctor, say that, more likely than not, that's what triggered my immune system to freak out and attack me.
[Since I was traveling for work, I eventually got compensated for 2 weeks' lost wages when I was too sick to go back to work immediately. And they closed my file, because, after all, I was back to work. I quit that job after my next 2 flare-ups and week-long hospital stays. So the job's long gone. But I'm going to have this for life.]
In my case, I was lucky...the doctors got all fascinated because it was "exotic" (you know the saying, "if you hear hoofbeats, don't think zebras"? These doctors were thinking unicorns and pegasi...) and checked everything they could think of 12 times. Oh, and along the way, one brilliant guy said, "you know, whatever's causing it, maybe we should just treat the symptoms for now." So I didn't die.
Before this, I think that I myself had some kind of vague prejudice that people who got sick must have done something to cause it. But boy do I regret that now.
Don't people realize that it's insulting to tell me what caused the disease or how to cure it? What I want to say is, "wow! i never knew! Why don't you do some randomized double-blind clinical trials and then it'll be international news!"
Grrr...but I do know that they're well-meaning.
Currently in a venting mood because I'm 3 days out of the hospital...and nursing my (somewhat-less-than-well-meaning) husband (from now on I think that I will begin introducing him as, "my first husband"), who has a sniffly cold. Who told me I don't look sick (yes, because I take 40 mg of Prednisone for fun, you know). And that I must not be that bad off, since I'm not bedridden and didn't need surgery (he declined my offer to show him the vivid colonoscopy photos, somehow). And who said (from his sickbed), "now that you're home and not working, you could at least vacuum". After being apart for a few years, I moved back to make it work, so this is the first time he's dealt with a flare and hospitalization. And at this rate, it's going to be the last. Another brilliant question from him, "so now are you just going to be sick all the time?"
Thanks for giving me space to vent! and good health to all!
Of course, it's good that people check for celiac disease or allergies or even sensitivities instead of suffering from debilitating conditions that might be remedied through dietary changes instead of major medical intervention.
But what I've got is Crohn's Disease. No one ever asks me what it is.
Instead they tell me that it's gluten or soy or lactose or that I need to get on the Paleo Diet or drink alkaline bottled water or go to an Oxygen Bar or have a coffee high colonic or a a green algae enema or that I could be cured by a fecal transplant or tapeworms or dirt. Or that I need less stress or more mindfulness meditation or should try tai chi or quit having a negative mindset or ask Jesus to intervene. No doubt we all need less stress and it's good to think positive thoughts, but the whacko advice stresses me out and makes me want to kick them.
So I listen and thank them, because I'm sure that they're trying to be kind and helpful, but it would be really refreshing to have someone actually ask me something about it without automatically jumping to share what they vaguely recall having heard somewhere. "I've heard of Crohn's, but I don't know much about it" or "do you think you're being treated effectively?" or "do they know anything about what causes it or how to prevent you getting hospitalized again?"...that would be soooo nice. Kind of like saying, "I'm sorry for your loss" instead of "at least it was a quick death".
I did not cause my own disease. Jeez. That's not the way it works. For most people all they did was to be born, and it's kind of tough to avoid that. All I did was go to India and stay at American chain hotels and eat hotel food (I had a nice plan to travel more "Lonely Planet", but I got sick before I could get to that part). I caught some mystery bug that knocked me flat, and my doctor, and the state's Labor and Industries disability doctor, say that, more likely than not, that's what triggered my immune system to freak out and attack me.
[Since I was traveling for work, I eventually got compensated for 2 weeks' lost wages when I was too sick to go back to work immediately. And they closed my file, because, after all, I was back to work. I quit that job after my next 2 flare-ups and week-long hospital stays. So the job's long gone. But I'm going to have this for life.]
In my case, I was lucky...the doctors got all fascinated because it was "exotic" (you know the saying, "if you hear hoofbeats, don't think zebras"? These doctors were thinking unicorns and pegasi...) and checked everything they could think of 12 times. Oh, and along the way, one brilliant guy said, "you know, whatever's causing it, maybe we should just treat the symptoms for now." So I didn't die.
Before this, I think that I myself had some kind of vague prejudice that people who got sick must have done something to cause it. But boy do I regret that now.
Don't people realize that it's insulting to tell me what caused the disease or how to cure it? What I want to say is, "wow! i never knew! Why don't you do some randomized double-blind clinical trials and then it'll be international news!"
Grrr...but I do know that they're well-meaning.
Currently in a venting mood because I'm 3 days out of the hospital...and nursing my (somewhat-less-than-well-meaning) husband (from now on I think that I will begin introducing him as, "my first husband"), who has a sniffly cold. Who told me I don't look sick (yes, because I take 40 mg of Prednisone for fun, you know). And that I must not be that bad off, since I'm not bedridden and didn't need surgery (he declined my offer to show him the vivid colonoscopy photos, somehow). And who said (from his sickbed), "now that you're home and not working, you could at least vacuum". After being apart for a few years, I moved back to make it work, so this is the first time he's dealt with a flare and hospitalization. And at this rate, it's going to be the last. Another brilliant question from him, "so now are you just going to be sick all the time?"
Thanks for giving me space to vent! and good health to all!