Thursday, January 17, 2013

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

Thursday, January 3, 2013

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.