The Cushing's Awareness Challenge is winding down, and I haven't posted every day. I have tried to post at least twice a week. I have been so busy with work plus dealing with allergies I haven't had time or felt like posting when I have time.
I do believe my allergies are worse since my BLA. Perhaps the high cortisol treated them? I don't know. I do know this spring allergens are worse in my area than they usually are. Everything seemed to bloom and spout pollen all at once.
Someone asked me the other day why we are so concerned about awareness for Cushing's. "Isn't is a really rare disease?"
"No", I said, "It's just rarely diagnosed."
And there is research to back up my statement. One recent research article is one you should take to your doctor if you believe you have Cushing's. It talks about the reality of testing for Cushing's Disease/Syndrome and that it requires a lot of testing. One can have a lot of normal tests and still have Cushing's.
As I go through my daily life, I see a lot of people who have the signs of Cushing's. It's a daily conundrum deciding whether to approach a person about it or not. Many times when I have, I've been met with cynicism or been ignored totally. Other times, folks want information. A few times, I've been contacted by these saying either a) my doctor thinks I'm full of it or b) my doctor thinks you may be right but doesn't know what to do from here. It's tough, having this disease. Although there are a lot of textbooks for doctors describing how to test and diagnose, so many of us aren't truly textbook cases. That's the problem with textbooks. They are a "one size fits all" type of diagnosis/testing. We come in all sizes, shapes, and genders. We don't fit the textbook mold. Slowly, the textbooks are changing. Recent research is changing how doctors test and diagnose. In my opinion, it's going to take another generation or two of doctors to really get it right. Until then, many people won't be diagnosed and treated.
Wow. You're still going. Very impressive. And oh yes, I've seen loads of patients suffer for years before being diagnosed with Cushing's, so it's not at all a minor problem (too bad so many of them are met with "yer just fat, get off yer arse and go for a jog hurhur").
ReplyDeleteGlad you're still blogging. I'm rooting for you, along with the many readers who don't comment. Keep it up!
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ReplyDeletei was impress, my personal advice is to visit your doctor and get a monitor guide from it. Practice is make things perfect.
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