I posted the above little story because frankly, most people don't get what this RES stuff does to the people who have it. "Don't worry, no one cares." "So your all red, it's really not a big deal." "Try not to let it control your life." "It's all in your mind." Statements like these don't help. They belittle what for me has been a rather crippling disease. As for myself, I've had some RES for most of my life, but in the last 3 years (I'm 34), it's become almost unbearable. Hot airless rooms, touch, strong emotions (happy, angry, sad etc), exercise (especially sex) all ignite my ears in a sudden and dramatic way. I won't say I have it worse than anyone else, but I will say that my ears don't get red, they get PURPLE and hot and they throb and will stay that way for hours on end.
I'm a high school teacher so you can imagine how it's affected my life, personally and professionally. It's gotten to the point where I carry a tiny spray bottle around with me and mist my ears whenever I can. My friends ask me why I've been such a hermit lately. I'm running out of excuses. I'm always calculating. Ok, it's 87 degrees out and I'll have to take the subway so I'll already be screwed by the time I get there. No sorry guys, not feeling well. What kills me the most is I'm, I'd say, extremely confident and love interacting with people. In the past, my level of social anxiety on a scale of 1 to 10 would probably have been a 1 or 2. Now it's about 12 or 13. One of the doctors I went to see early on was convinced that, although I seemed calm, I was a worry wart and that my mind was responsible for making my ears bright red. I said "Really? Ok, do me a favor, turn your ears red for me please." To which she replied after some hesitation, "I can't." To which I said, "me neither." Interesting conversation.
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I posted the above little story because frankly, most people don't get what this RES stuff does to the people who have it. "Don't worry, no one cares." "So your all red, it's really not a big deal." "Try not to let it control your life." "It's all in your mind." Statements like these don't help. They belittle what for me has been a rather crippling disease.
As for myself, I've had some RES for most of my life, but in the last 3 years (I'm 34), it's become almost unbearable. Hot airless rooms, touch, strong emotions (happy, angry, sad etc), exercise (especially sex) all ignite my ears in a sudden and dramatic way. I won't say I have it worse than anyone else, but I will say that my ears don't get red, they get PURPLE and hot and they throb and will stay that way for hours on end.
Here's what I've tried to fix it:
Doctors (beyond useless)
Specialists (worse)
Vitamins
Creams
Cover-ups
Dietary changes
Blood tests
Chiropractors
Osteopaths
V-beam laser
IPL
Acupuncture
I'm a high school teacher so you can imagine how it's affected my life, personally and professionally. It's gotten to the point where I carry a tiny spray bottle around with me and mist my ears whenever I can. My friends ask me why I've been such a hermit lately. I'm running out of excuses. I'm always calculating. Ok, it's 87 degrees out and I'll have to take the subway so I'll already be screwed by the time I get there. No sorry guys, not feeling well.
What kills me the most is I'm, I'd say, extremely confident and love interacting with people. In the past, my level of social anxiety on a scale of 1 to 10 would probably have been a 1 or 2. Now it's about 12 or 13.
One of the doctors I went to see early on was convinced that, although I seemed calm, I was a worry wart and that my mind was responsible for making my ears bright red. I said "Really? Ok, do me a favor, turn your ears red for me please." To which she replied after some hesitation, "I can't." To which I said, "me neither." Interesting conversation.