Sandi says, "No," which is harder than it sounds

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.

Healing hands can hurt: Sandi gets a massage

Tag: The wrong massage at the wrong time gives the wrong impression.



Years ago I had a fantasy.
I imagined myself on a massage table having all my troubles soothed away by an experienced masseuse in a fancy spa.
It has to be great right? For years everyone I knew talked about how they felt limp like a noodle when their massage was over and how for days afterward they felt so good.
So, one day I found myself in a five-star hotel to interview Jim Carrey for "Ace Ventura: Pet Detective."
I had several hours before my one-on-one interview with the comedian, and the movie publicists suggested I see if I could get a massage at the spa inside the hotel.
I called and not only did they have an opening, they had a woman who would come to my hotel room and give me a massage there. How could I say no?
After the massage table was assembled, I laid down on it and prepared myself for an hour of bliss.
I was gravely disappointed.
From the moment she began, so did the pain. Everywhere her fingers dug in felt like she had gone right through my skin and was shredding the muscles, tendons and nerves.
Since I'd always been told my neck and shoulders were hard as rocks, I hoped it was just hurting because I was tense there.
I didn't know about Fibromyalgia at the time, but I got an unforgettable lesson on anatomy in that hour.
And sadly, since I'd never had a massage, I had no idea it wasn't supposed to hurt like that. I lay in agony the entire time, thinking at some point the pain would end and the bliss would start.
I was living a minute at a time. I believe that if you can survive a bad thing for one minute, then you can do it one more minute, then another.
When she finished, she told me to take a hot bath and drink lots of water to wash the toxins out.
I did, and it didn't help. In fact, I hurt more, and I stiffened up.
Limping into the hotel suite later to meet and interview Jim, I was miserable. I hid it and managed to laugh though his antics and his answers to my questions. Yes, he was funny, and was charming as well, but I barely remember it. I couldn't forget the pain.
I found out later I had gotten a Shiatsu massage, which is a Japanese form of rigorous massage where the fingers apply pressure to acupressure to points for physical relaxation and to reduce stress.
Big mistake.
I have had massages since then but now the first words from my mouth are to explain I have RA and Fibro so they can be careful and do the best they can to work around it.
I've never felt the bliss of a good massage yet, nor have a felt like a noodle after one, but I'm hopeful one day I'll get lucky.

Sandi in Paradise: Sick is sick, in heaven or hell

Imagine doing your job lying on a black leather couch in a plush office big enough to have the expected large desk, executive chair and two business chairs at one end, that couch and an entertainment center in the center and a nicely sized meeting table with four equally comfortable chairs at the far end.

The glass-walled office is enclosed by thick curtains to shield it from the day-to-day actions of the rest of the world.

Now, while you're imagining lying on that couch on a cold November Sunday, put a walkie-talkie in your right hand. On the other end of it is an arena full of stagehands and roadies, custodial staff and caterers getting ready for The Police's "Synchronicity" tour, and you're directing all their activities from your prone position on that couch, which is the Public Events Director's office.

Yeah, that was me. The director knew how sick I was and trusted me enough to loan me his office for the day.

 I have had some truly great jobs. Most of the time I could do those jobs with few people knowing I was dealing with chronic diseases. I can throw back pills with such finesse most people never know what I've just done.

I worked at a convention center and arena in the 1980s.  We hosted everything from high school proms to major concerts to national events, and I handled every aspect of those events, working all hours, nights, weekends and holidays.

About a month before that November day, I developed pericarditis (The sac-like covering around your heart gets inflamed and causes severe chest pain)  and spent three weeks in bed. 

I came back to work on the day of the Police concert because I have a massive crush on Sting and wanted to see the show. So, I put in my eight hours by being on hand as the semi-trucks full of staging and sound equipment rolled in and the "load in" began.

I had to lay down most of the time to keep the pain in my chest at a reasonable level. I'd make the occasional stroll through the arena to prove to everyone I was really there, but the rest of the day I was lying on that couch in the director's office coordinating everything by radio. 

For the record, the concert promoter let me use his hotel suite to change clothes so I could return that night and watch the show, letting my fellow event coordinators work the concert and settle accounts at the end of the evening.

Ninety-nine percent of the people working there had no idea I was sick, because I didn't talk much about it.

My years at the newspaper though, contained the best and worst of dealing with my diseases. 

Again, it was a job where it was possible to be at work any hour of the day or night, any day of the year. Some of those times I was on the road on one coast or the other, or the best thing, visiting really great places to write travel stories for other people to read so they would visit those places too.

I finally had to tell the editors about my disease in detail because some of my treatments required me to be gone hours at a time for IVs and I came back with the bandages and bruises to prove it. I thought the editors believed me until one travel trip.

In 1994, I took a cruise line up on an invitation to take a week-long cruise of the Hawaiian Islands, and in exchange, write a travel story about it for my newspaper.

I used frequent flyer miles to get to Hawaii, and we landed there at night. I spent the next day resting at a local hotel until it was time to board the ship.

I had been looking forward to this trip for months, and of course, without my knowledge, my diseases had gotten together and decided to show up for the trip too.

There we all were, on a newly refurbished cruise ship in unusually high seas travelling around one of the most beautiful places on earth -- me, arthritis, chronic fatigue, GERD, lupus, sleep disturbances, you name it, it came with me on the trip.

As the days went by, I got sicker and sicker.

I knew several other travel writers and we had trips planned on every island we visited. I tried to tell them how badly I felt, but I could not convince them I felt as bad as I did, because to them I didn't look like it.

I have vague memories of the islands and the ocean, but it was one wasted trip.

The worst day was on the island of Kauai. Our group rented a convertible and planned to drive around and take photos of the scenery and I did my best to convince them I was too sick to drive. They didn't buy it.

I drove. I drove with tears running down my face because I was in so much pain. I was tired. I was nauseous. Not a single one of them noticed. 

I truly was invisible that day.

I'd love to say I had a great trip, that the meds I took on the sly finally worked and I was able to pull myself together and have an amazing time but it didn't happen,  except late one night.

We were leaving Maui and there was a full moon. I couldn't sleep, so I got up and walked on deck to a sight that almost made the trip worth it.

I have no photos of it, but burned into my brain is the sight of a full moon reflected on the Pacific Ocean. It is the sole good thing I remember about that trip.

I slept the entire flight home. I didn't care the airline lost my luggage. I went home and went to bed, ready to get some real rest.

I awakened the next day with a temperature and in a massive flare. I called in sick at work, explaining the flare and how much I needed rest and to see my doctor. The next day my editor called me and told me I'd better be in my office unless I was dead. She was serious. 

So, I went to work, flare and all, because after all, I'd been to Hawaii, so how could I be really sick?

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.