To answer some questions:
Why the experiment and online documentation?
* Collect data. I've never tried this for so long, and don't know what the result will be. According to some people (that includes cureforcurezon who made the website, and started the forum) their lips eventually got better with time. I try to not be too attached to the results though, it's easier to handle if I just observe what happens. Blogging, youtube and facebook makes it easy to document and make the results available to many people.
* Support. I wished there had been pictures or video clips on the web when I first got this 2003. I wished I could have showed them to all the doctors I went to, who either rolled their eyes and shrugged, or gave me the wrong diagnose. 2003 there was nothing, not even this forum. I didn't even know what to call my condition and I felt like a very lonely freak that first year. During the years I have googled and youtubed my symptoms, but I did not find exfoliativecheilitis.com and this forum until two months ago.
* I feel strong and calm enough to do it. Of course a part of me just want to cry, scream and smash things, but I kind of did that the whole first year. Instead I try to be like the people we see every day that gets through life in spite of their psychical, emotional or cognitive hardships. Someone pointed out that I looked kind of happy, and yes, I am rather happy. I can think and express myself, move around as I please, I have a job, my own place, food in my fridge and loving and supporting family and friends. Besides, I think you rather see me smiling instead of sobbing "why oh why cruel fate!?" from under the sheets. ;)
* The result from the biopsy will not come until late august, and with that, possible new medication/treatment. This is an opportunity to see what happens before any new medicatiion/treatment arrives.
* I can currently work from home. I may not have that opportunity in the fall.
* I've treated the symptoms for 5 1/2 years (lip balm, and gently helping the loose skin to come off), I know what kind of result that will bring.
* Give the finger to exfoliative cheilitis. You can't touch me! ;)
I except all sorts of reactions. We're all in the same boat here I know this condition can be extremely fruststrating and stressful, and it's not always easy to be positive when you're in the middle of the storm. I do favor encouragement.