Obla-Dee Obla-Dah, Life goes on...

I am sinking into a pit, a pit of pity. My lips are swollen (good news: saves on collagen injections!) and I have multiple lesions on my lips and gums, but again, good news is they are smaller than they have been in the past. I have discovered two very good blogs about Behcet's. One is called Behcet's Land and it is written by a young woman, only 22 who has Behcet's. Her blog link is:  http://behcetsland.blogspot.com/
   Another is written by a young woman in her thirties who has quite the harrowing tales to tell, mainly about mistreatment by various physicians, medical personnel, and even the DMV when she went to get a disabled parking pass! It is a horror story! In the second one, Chrissy (the writer) has an excellent blog entry about what a flare-up is like. I felt like I was reading my own diary. If you are interested in reading about it, it is in her April blog posting. Her link is this:http://livingwithbehcets.blogspot.com/2012_10_01_archive.html
 There are more blogs than I thought possible, but another one is written by a woman named Joanne Zeis. She seems to be quite the activist and is very knowledgeable. Although a "lay" person, she has been featured on Discovery Health channel and written books about Behcet's. She has been a good source of info as she has quite a few links on her blog with reputable people. If you would like to watch the video from DH, there is a link on her blog: http://behcets.blogspot.com/

One of the things I have noticed that is a commonality of Behcet's sufferers is the mentioning of horrid feeling of heat coming over your entire body. One man described it as feeling like his "blood was boiling". What an apt description. I will have 20-30 incidents per day when it feels like I am heating up from the top of my head down my whole body. I tried to describe it to the snotty rheumatologist in June, but I most likely made it sound like a hot flash, but tried in vain to let her know it wasn't. But of course she didn't listen. None of the symptoms listed on different sites describe this odd phenomenon, but so many sufferers do, so it must be a "thing". Let me tell you, it is one of the more wretched things I have ever felt. During the day when it happens, you feel as if you are going to pass out. During the night when it happens, you feel as if you drenched in sweat and throw the blankets off, but there is no sweat...It's a dry heat haha, like being in an oven and you are the main course. Or maybe Death Valley. Whatever it is, I hate it. But hey, menopausal women suffer with this daily, right? and they don't whine...or do they?????