Fifty Shades of Fine

Not many people want to know how you really feel.
"How are you?" is such an ingrained way to begin a conversation that "Fine," is the expected answer, no matter what is really going on.
Anyone with RA, Lupus, Fibromyalgia or any of the hundreds of other auto-immune diseases --especially the invisible ones -- knows all the ways to say "Fine."
I am an expert.
Most of my health problems are auto-immune and invisible.
My spine is slowly collapsing. I used to be 5'7." I was measured for the first time in years in my hematologist's office this month and I am now 5'4."
My spine specialist has offered to do surgery on my next and lower back. My total time of recovery from each surgery would total nearly 18 months, so I declined.
My knees, hips and shoulders hurt too, but so far none of those are bad enough for surgery.
Add that up and I have a pain management doctor who brilliantly takes care of me. Most days my pain levels are 2 to 5.
I have Fibromyalgia, Chronic Fatigue Syndrome, occasionally test positive for Lupus.
How do you explain that someone poking you in the arm to get your attention that it hurt really bad for like five minutes.
It stinks on ice that no matter how much sleep you get you wake up tired. It's even worse when you have no idea when your energy will run out and you are dead on your feet. You can't think clearly, you shouldn't drive but you do because you have to get home somehow.
Now, combine all these diseases and guess where it gets you.
Light years away from fine.
I had the perfect job for someone with these diseases. I covered concerts and movies, mostly at night. Because I could write reviews during or directly after an event and turn them in, I had extra time to crash at home.
I had time to learn life hacks. I found a makeup that I could put on and be TV ready in 5 minutes so I could sit at my desk and struggle right up until I did my stint on a local TV show to talk about entertainment.
For seven or so minutes I burned all the reserves of energy I had left to sound and look bright and enthusiastic for TV cameras. As soon as my bit was finished I grabbed my gear and went home.
Doing radio was much easier. By the end of my career as an entertainment writer I was doing those radio bits while lying in bed. I hung up the phone and slept a few more hours.
My rheumatologist/oncologist doctor I had managed to keep me on my feet and in my job for years. He watched my white cell count rise, my leukocytes and lymphocytes fall and finally scared me into doing something I should have done a few years before.
"If you keep up working like this you'll be dead in three months."
I quit my job of 17 years that day.
I was out on disability by 5 p.m. and while I miss my job like crazy even nine years later, I have been healthier than I thought possible during the lunch hours I slept in my car, or the weekends spent in bed.
There still are weekends I spend in bed, and sometimes, like this month, I was scared because my bloodwork was starting to look like it did nine years ago.
My hematologist has just told me that while my blood it's no better than it was nine years ago, it's no worse.
And that, my friends, is just fine.