As far back as I can remember, I've hated to be told "No."
It's the fastest way to get me to do any number of things I shouldn't have done.
I had no idea back then that now I'd be telling myself "No" on an increasingly regular basis
I still hate it, but we do what we must do to survive.
Back when my disease was new, I ignored all the doctor's rules and did everything I'd always wanted to do.
In the 1980s, I went to every rock concert that came along, I learned to scuba dive, I rode an elephant from the convention center back to the circus train, I slow danced with Richard Simmons, I was a chaperon for Miss Rodeo America finalists during the National Finals Rodeo.
And those are just the ones I talk about.
There were no consequences for years, but slowly, bouncing back from adventures because a little harder, took a little longer.
When I returned from that Hawaiian cruise in a big flare, it took months to recover because I was still working full time in a job that had no set schedule or hours. There were times when I was off work a matter of hours between one day and the next.
Don't get me wrong, I still hated the word. I remember telling Garth Brooks' publicist that I thought his only job was to tell me "No." (Garth eventually changed his mind and we talked. A lot. He even called me on my birthday once and sang to me. Wow! I still consider him a good friend of mine).
By 2000, I was trying to give myself enough time to recover between adventures, but it was hard. I was dragging all the time and couldn't think of how to continue.
Out of nowhere, the idea came.
I didn't have to continue. I could simply say, "No."
No to flying to Los Angeles or New York City to see movies and interview celebrities.
No to leaving work to see a concert -- with a laptop -- and writing the review during the show, sending the review from the venue, then going home.
No to going to movie screenings morning, noon and night, and returning to the office.
No to business lunches, meetings, speaking engagements.
It sounds easy. Its a little word, but what power it has.
I started slow, saying "No" to going to movies I didn't want to see, being more selective about the concerts and trips I took.
Still, the powers that be at the newspaper told me "No" when I asked to do a little less work, or for some help with my work load.
The last six months or so I worked at the newspaper, I had stopped driving because I was exhausted and saying "No" became a necessity.
When my doctor told me I would die if I didn't tell my job "No" the true, unmitigated power of that tiny word became crystal clear.
Six year after I left the newsroom for the last time, I've become a master of "No."
The secret is not to feel guilty. I learned I was more important than anything else.
I have learned to assess how I feel and use "No" accordingly.
And sadly, the secret to using "No" is to be more careful saying "Yes." I now consider how much energy something will take, how much I need to rest before and then, how much time I need to recover afterward. If I feel it's worth it, I'll say "Yes." Even today there are time I know I should say "No" but "Yes" comes out before I can stop it. A good time is still worth the sacrifice every once in a while, because fun has healing properties medicine can't touch.