The war inside rages on, or the invisible battlefieldDONE

I've had arthritis a long time and it's been a long battle.
Basically it's your body against your strength of will, aided by drugs, therapy and rest.
It's a dirty war because you never leave the battlefield and the skirmishes can go on for years.
The best days are the ones when you discover you're winning, you've beaten back the disease and slowed the damage.
The worst is when the sickness is rampaging through your system and you're out of energy and ammunition. You simply lie where you are, waiting for relief via steroids or morphine or something with an unpronounceable name.
There are no negotiations and cease fires are rare.
In this war, we pray for our version of the military -- our doctors, and our version of black ops -- researchers.
We wait for the next magic bullet and hope its powers to contain or destroy are what the doctor ordered.
We endure the "injuries" (aka side effects) with stoicism and hope. We rejoice when some people get better, we feel their pain when they don't.
We mourn with friends and family when a loved one has lost their fight and we remember them as the brave, honorable warriors.
Many of us show our battle scars -- our limping gaits, twisted fingers, swollen knuckles, oversize knees, ankles and wrists. Others have rashes and sores that are ever present and hard to explain.
Then there are those of us whose scars are on the inside. People can't see my spine is stacked like a toddler's building blocks, or that my damaged nerves cause never-ending pain.
Our good friends, our allies, know we don't sleep much, or we can't seem to stay awake, that we forget things all the time, that we cry with frustration when the money runs out before the doctor bills are paid or the prescriptions are bought.
Still, we soldier on. We do what work we can. We rejoice when we win those hard fought battles and are stoic when the going is rough.
We hang on with courage, we use our strength of will to meet our daily goals, whether they are simply getting up and dressed at some point in the day, or doing the laundry and helping cook a meal.
Our battlefields may be invisible to the healthy among us, but the rest of us believe eventually we will win the war.
What can friends and family do? They can be our USO. They can cheer us up, listen when we whine, comfort us when spirits are low and keep believing we are doing the best we can with what we have.

The war inside rages on, or the invisible battlefield

Vomiting from coast to coast/DONE

Welcome to the holiday season, the time when we tend to overdo everything. Most people put on a few pounds from all the amazing food available and way too many of us drink a bit too much and pay dearly for it the next morning.
There really is not much worse than a hangover, unless it's really overdoing it and spending the shank of the night driving the white Honda.
Vomiting is simply awful, and most people can avoid it 90 percent of the time.
Not me.
I have had arthritis a long time. I have been on so many drugs I can't remember all of them but I do know this: I have been on every non-steroidal anti-inflammatory drug( (NSAID) that has been on the market. For example, I was on Motrin while it was a prescription.
They may have worked for a time, but they always stopped, and I always was put on a different one.
I didn't know it then, but while it helped with inflamation, it also did a number of my stomach lining, giving me gastroesophageal reflux disease (GERD).
If you add this to the sad fact I have one of the fastest gag reflexes on record, it means I can pretty much vomit at will. 
Before Gerd was so fashionable I spent a fortune on allergists and digestive specialists. I was told by one, the best diagnosis he could come up with for me was "You have a funny tummy." (Say this was an upper crust British accent and it sounds much better. I always smiled when my British doctor said it).
Whatever the reason, I spent years retching from coast to coast at all the best places. Whether traveling as an event coordinator, movie critic or travel writer, I have emptied the contents of my stomach in the best joints around, including the friendly skies.
I became a master both of heaving and hiding it. I could do a phone interview at my office, talking to movie stars or rock gods, taking notes and throwing up in my trash can with no one the wiser.
It was not fun. I tried all sorts of anti-nausea drugs and some worked for a time, but not always. The first drug that really worked was the original "Little Purple Pill."
When I started taking it, it was $10 a pill. Now, it's everywhere. And, while it soothes my unruly innards most of the time, it still doesn't work 100 percent of the time.
I've used barf bags on airplanes, drink cups in darkened theaters. 
One would have thought I'd become thin as a rail, but the addition of steroids to the mix nixed that.
Oddly enough, I was out on disability before acking finally drove me to the  ER, and it wasn't because I was throwing up blood. It was because I couldn't stop gagging.
Every time I wound up in an ER, my potassium had tanked. I'd get a bag full of saline and potassium and a wide variety of drugs that those docs hoped would stop that nasty gag reflex. 
Once, I impressed the nurses with my prescience. I could tell them with pinpoint accuracy when I was going to be sick, and to get me one of those lovely basins. It was strange to have an audience, to know my gastro-intestinal system so well.
These days NSAIDS are banned for me, and that with the addition of potassium and B-vitamins to my diet, I haven't been sick. I don't know if this is coincidence or dumb luck, but I do feel better knowing I can now talk to celebrities face to face without the fear of heaving up my dinner at their feet.
The final insult? To this day I can't drink anything too acidic -- especially wine. A small glass of red wine is not equal to a night full of tequila shots and beer.
With that, I'll save the biologics for another day. 

Pain management or purple prose?DONE

There is pain, and there is PAIN.
If you're reading this, you or someone close to you  is dealing with pain on a regular basis.
Whoever you are, I hope your pain is easily controlled, something you can ignore and go about your business, because there are too many of us out here who have pain that doesn't behave in any predictable manner.
Most people dealing with chronic pain (it's considered chronic if you've had it 90 days or more)  have their own coping strategies, things we do while waiting for the medicine to kick in.
Because I am a writer and words are my tools, I try to find ways to describe the pain so someone who thinks pain is a headache or a bruised shin gets a picture of what it feels like inside my skin.
There are days when it feels like a blacksmith is using a red-hot pincers to lift up my kneecaps and hammer equally hot nails inside.
There are the mornings when I literally roll out of bed and tell my husband "I feel like I've been beaten with hammers."
The weather can be a vicious enemy when fronts come through. We had a major one come through recently. I was sitting in an office waiting for my rheumatologist to come in and I knew when the barometric pressure started changing. Imagine you have firecrackers taped around your kneecaps and the fuses are lit. That explosion is unbelievable. Then imagine someone is shoving a chisel into your shoulder joint, or your rib cage is full of C4. Those are some big time explosions too.
Ow!
For some reason, today I feel like my bones are being held together with barbed wire.
I know it sounds like I should be writing a screenplay for a slasher movie but it's how I keep my sanity.
If I make fun of the pain, it makes it a little smaller in my brain and a smaller foe is always easier to manage.
And, it beats swearing -- though if I'm alone the language coming from me would probably make a sailor blush.
And, when all else fails, I lie down. "Home and prone" with heat is my last defense. Generally if I combine it with listening to music or trying to conjure up memories of some of my favorite experiences, I can live through it until those pain killers start taking off the edge.
So, right now, I'm propped up in bed with pillows behind my back and a netbook in my lap. I'm wearing headphones and am listening to my favorite playlist on a  free music website.
I've got about 10 more minutes until the pills should start working, so I thought I'd share my woes with you guys.
If you'd like to share your coping strategies, I think it's a good idea. The more we share, the more we can discover something better to try.

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.