Sandi's secrets: How much do we tell and who know what?

I have spent decades listening to people answers questions about themselves on any number of topics.
Yes, a lot of them are famous people, folks who were there to talk to me about a new movie, a new album, a new tour or something else exciting and glamorous.
I've talked to just as many people about things that happened to them: their joys, their tragedies, their lives.
I've shared tidbits of information about my life with them too, because a good interview is also a good conversation. Information goes both ways.
Actually, all relationships we have are based on information shared. The thing is, just like the biggest celebrity you can think of, when you are sick, you should guard your privacy as jealously as they do.
Sure, our family and closest friends know the whole story about our disease -- when we got sick, the syndromes we have, how we look on our best days and worst ones.
Thinks get tricky when you add new friends, lovers and family members into the mix. How much does a friend really need to know, and when is the right time to give that  special person "the talk"?
Basic information is easy.
"I have arthritis" can cover any number of ailments that you don't want to talk about just yet. There is enough basic information out there that folks know you've got some level of pain, your bones aren't all that great and maybe that's enough for the moment.
With Fibromyalgia, you've got to get a little more personal a little faster, because when touch can hurt, new friends need to know right away.
When you're dating, man, that can get tough. That special someone has been to your house, but have they seen your collection of prescription bottles? First and most importantly, you hope your person realizes they cannot possibly catch anything auto-immune you have. If they believe they can, escort them to the door. You can do better.
When things get serious, it's time to get the tough information out. I've confessed that pain will win over pleasure every time and if I have to stop that neck massage because my hands hurt, it's stopping. Well, that and other things, but you get the picture.
He or she will have to realize there can be months at a time when you don't feel like doing much but sit on the couch wrapped in blankets, or actually sleep all weekend. You, even with a bum immune system, deserve to be just as happy as anyone who can run marathons on a regular basis, so if you find that perfect person who loves you chronic fatigue and all, keep them around, because they deserve to be happy too.
When that person becomes a family member, it's time for the big guns. They meet your doctors and they hear you have conversations with people who are asking all the questions to you, and you're sharing all your information freely, because those are the guys who can help you.
Seriously, all your friends help you, because they do listen when you start to complain, they do their best to keep your spirits up and they love you no matter what. They want to share your highs and lows and with all that help, you've got a good chance to muddle through.

Hello, My name is Sandi and I have arthritis

Once upon a time in 1974, a 19-year-old University of Oklahoma sophomore kept a doctor's appointment. She was there all day.
At the end of the appointment, the doctor, a rheumatologist, told the coed things about herself that convinced her he was a mind reader.
He wasn't, but he knew her disease well.
"You cry all the time," he said. "You get sick all the time too, but no one believes you because you don't look sick. But, you are. You have a disease and it's called:
Rheumatoid Spondylitis, Strep Sensitive, Female Variant."
I will never forget that day, or that doctor. He changed my life.
He told me crying was good, because it is the body's last stress release mechanism, and the rest of mine were broken.  He knew I did not sleep. I got strep throat every month because my immune system could not fight it. It hurt to make the bed or wash dishes by hand because my lower spine was very slightly involved. He knew that I'd spent a lot of time since puberty with heating pads wrapped around my knees.
He also told me a lot of "Nos."  No running, no tennis, no skiing, no job where I had to stand all the time, no day without a nap.
I was 19. I was indestructible. Well, I wanted to be.
No is my least favorite word and I fought him on every single "No" until he retired and sent me to a doctor who was my own personal witch doctor. He retired in 2007, a year after he gave me a "No" I had to hear.
He gave me three months to live unless I quit my high pressure but amazingly great job that day.
I left my job as an entertainment writer at a major daily newspaper, covering music, movies and entertainment events.
I slept for two straight years.
After he retired, I bounced from doctor to doctor, and I got better, so much so I was fired by one doctor because they specialized in treating arthritis patients who needed some sort of joint surgery, and I do not.
I spent two years with a pain management doctor and a primary care physician who got freaked out by my odd blood counts.
She sent me to a hematologist, who sent me to a rheumatologist.
She took me in.
Hi. My name is Sandi, and I wake up every morning of my life saying "Ow!"
So, it's 2012 now and here I am. Worse for wear, wiser for it and full of 38 years worth of knowledge of how to deal with a disease that evolves as fast as the treatments for it.
Scrap that old diagnosis. Now I have a laundry list of syndromes, along with the spinal rheumatoid arthritis.
My spine is involved now all the way up to my neck and has spread to my hips, shoulders -- all the usual sites.
They include Fibromyalgia, Chronic Fatigue, every symptom of Lupus, and its in my genetics. But get this. I have only had two positive ANA tests.
Genetic testing has changed how arthritis is treated and diagnosed.
Genetics is why I never had children. I carry the gene for RA, asthma, allergies and MS, and I could not find it in myself to pass this sort of burden along. It was a personal decision I made a long time ago.
I live with my husband, two great dogs named Woody and Caro, and four cats. Only one cat is mine, Kneadle, (yeah, it's a personal joke), my husband claims the other three.
I started writing again this year. I freelance for Internet sites and newspapers on various entertainment topics, and surprisingly, I was asked to write this blog.
I can't wait to share my adventures and yes, my opinions on living with this disease and living with it well.
I will be writing about how things have changed, how they've stayed the same. How to cope when you can't, how to fight the depression, the fatigue, the hopelessness and sadness we all feel sometimes.
I'll also tell stories of places I've been, things I've done. I'll drop celebrity names, tell tale of famous hotels and how to get through them, and airports, and how to survive to pass on what you learn.

Sandi's tired tale: Overdraft at Energy Bank causes celebrity blackout (Hers, not Robert Downey Jr's)

I am in a continual battle with fatigue.
It's a battle many people with auto-immune diseases share. It's part of the disease, but we don't generate energy the way healthy people do, so we must be especially careful with the little we have.
It would be great if we could hoard it, saving some back for special occasions. Sadly, that's not how it works.

A nurse gave me the best explanation I've ever heard.

Every day we are allotted a certain amount of energy in our personal bank account. We need to spend our energy wisely to keep from overdrawing our account, because the overdraft fees are brutal.
If you've never had a waking blackout, good for you. It is horrifying, especially the first one.

When I was a movie critic I traveled nearly every weekend.
I live in the middle of the country, so I was always going to one coast or the other to see early screenings of movies and to interview the cast and crews. Those time changes were often brutal, because it meant I was seeing movies at least an hour later than I did at home, or worse, I was doing interviews hours earlier than I did at my office. 

Having your schedule messed up like that all the time will take a toll. 

There was one dreadful movie junket, just before the holidays in 1995. Movie studios would band together and combine their movie screenings and interviews, saving money on getting the press there.

We writers could get numerous original stories for all the big movies to run the day the movie opened in our particular market. This one trip had seven movies and seven sets of interviews.

We flew in to New York City on a Friday and flew home Sunday night. I watched one movie before I left. That meant we saw three movies back to back to back both Friday and Saturday nights. We got back to our hotel rooms well after 1 a.m.

Thank heaven the hotels we stayed in had 24-hour room service.

That Saturday, we started interviewing at 7 a.m. and interviewed stars straight through until 5:30 p.m., when we boarded buses to see three more movies.

Print press shares interview time with six or seven other reporters and we got the stars and directors for 20 to 30 minutes. All the reporters asked questions during these interviews and we used all the information to write our stories. 

Sunday held three sets of interviews, then a trip to the airport for the flights home.

The second set of Sunday's interviews was for a movie named "Restoration." The only interview I wanted was one with the main star, Robert Downey Jr.

I knew I was exhausted, but I didn't know how dangerously tired I was until the movie opened in my market over a month later.
At my desk at work, I got my tapes out and ran the cassette up to where I thought Robert's interview would be, opened my notebook to the notes I made during the interview.

I started the tape. The voice didn't sound right. What the guy said didn't track with my notes. 

I was puzzled. 

I ran the tape forward a little more and found Robert Downey Jr.'s interview. 

I listened to the mystery man again and realized it was the director Michael Hoffman. He was in the room before Robert.

I had blacked out.

I have no memory of seeing this person. I didn't write a single thing down while he was in the room, but my tape recorder had the cold, hard truth. 

I fought exhaustion and exhaustion won. It will, every single time.

Blackouts are one of your body's way to keep you breathing. Your upper level functions shut down. It's life support only. 

There are symptoms, but when you live with a certain degree of fatigue every day, it's hard to tell when your systems start running in the red.

I found that telltale signs of imminent collapse include trouble following any conversation, clumsiness and an overwhelming urge to lay down exactly where I am and sleep for about 18 hours.

Since most of the time you can't do that final thing, you need coping skills.
Sleep whenever you can, even if it's only for 15 minutes.
Walk as little as possible. In New York City, I've taken a cab three blocks because I couldn't face the walk.
Learn to say no. If you don't feel like doing something do not do it. You are more important than any thing.
Rest as much as you humanly can.
Do not be afraid to ask people for help. I've found people like to help. I made that discovery soon after I discovered I was not from the planet Krypton and don't possess superpowers.
I take every shortcut I possibly can to do everything.
I try to keep the balance in my energy bank in the black. Some days it's harder than others, but every one of us discovers ways to survive each day, because the worst thing about the energy bank is there is no savings account. Energy doesn't accrue, nor does it draw interest.
And finally, sadly, my energy crisis is real and ongoing and every day brings new challenges. If only we could discover alternative forms of energy for us.