Monthly Archives: January 2016

Time to Get Real

Just yesterday, a single sentence from a Facebook friend led me to ponder something I take for granted.

I am a chronic pain patient, most doctors’ worst nightmare, and I am tired of being treated like a second-class citizen.

Among the litany of ailments, which I won’t list here, I have fibromyalgia.

I can see the virtual eye rolls from those who think that fibro is a “garbage can” diagnosis meant to shut up the patient who presents with debilitating pain, exhaustion, and memory issues.  And, it was just that.  Until some dedicated scientists and doctors began to really study the disease.

Now, it’s an accepted disease and the criteria for diagnosis has been narrowed and focused to the things that nearly all fibromyalgia sufferers share.

All of this has little to do with this post, but I use the first few paragraphs to set the stage for the real reason I’m writing.

It’s the shame, the guilt, the overwhelming feelings of inadequacy that so many chronic pain patients experience.

We feel it every time we have to explain to a doctor that yes, we hurt, and yes, we understand your lab work doesn’t give any indication why.

We feel it every time we encounter a pharmacist, skeptical as to why we need yet another month’s supply of an opioid medication.

We feel it every time a family member or friend – always well-meaning, of course – tells us about the latest breakthrough in treating chronic pain with home remedies like beet enemas and anecdotal evidence that it worked for someone’s brother’s wife’s mother.

Or worse, when friends and family tell us we just need to get up and do more…everything. Walk, exercise, go vegan, deny gluten, and drink lots of water.  I mean, if we did all that we’d be fine, right?

We look normal.

We (usually) act normal.

We desperately want to be normal.

We don’t want to wake up every morning more tired than when we went to bed.

We don’t want to hurt from the top of our heads to the tips of our toes.

We don’t want to feel like we’re slogging through molasses that gets thicker as the day wears on.

And so many of us don’t want to have to rely on a pill to get us through the next day, the next few hours, until we can take another to dampen the pain to the point of making it possible to function for a while.

Mental health gets a bright spotlight, and almost everyone is understanding and caring. Take a pill to elevate your mood, or keep you from going all stabbity?  That’s considered a good thing.

Chronic pain patients don’t always get that same TLC.

And we need it.

What we don’t need is to be called “addict” or “drug seeker” because we rely on chemicals to get through the day.

 

 

Because…

….there’s never, ever, not ever, not for one minute…a dull moment in my life……..

Christmas went well.  It was a hunnert degrees outside, and Santa looked like he would melt inside his suit when he visited the gaggle of screaming grandchildren gathered to meet him on Christmas Eve.

Months of preparation and the entire gift-opening extravaganza was over in 12.4 minutes.

The adults at my house engage in a White Elephant gift exchange.  The concept, for those who don’t know, is to gather gawd-awful items you already have, wrap them prettily, and then every person gets a number and we pick packages based on if we’re first, second, and so on.  After the first pick, the next person can either ‘steal’ a person’s gift or get a new one from the stack.  And so it goes.

The idea is to give someone you love a hideous/disgusting gift.  It’s a Christmas Spirit thing.

Of course, there’s always that one relative who doesn’t get it.  That person invariably brings a truly magnificent gift.   This year, it was a giant bag filled with gorgeous household knick-knacks, wall hangers, and so on.  It was the FIRST gift picked, so you just knew the receiver wasn’t going to hang onto it.

Except the receiver, my youngest son, literally guarded his loot and threatened anyone who came near.  He looked like a dog guarding the food bowl as he’d place his body between the would-be thief and the bag…growling and giving the thief the stink-eye.

The kid’s got game when it comes to intimidating looks.

I thought we were going to have a brawl a time or two as shouts of “cheater!” and “That’s not how this game is played!” fell on son’s deaf ears.

For my part, I’ve got so many knick-knacks and crapola around already I’m thinking of changing my name to Pier One Kirkland’s (got a nice ring to it, doesn’t it?), so I didn’t want a giant bag with more dust collectors.

In the end, son got to keep his big bag and I got a coloring book and crayons..perfect..no, really, perfect for when the grandkids come over.

I think we need to explain the White Elephant rules one. more. time.

Christmas Day is usually quiet and laid back at our house. I won’t get out of my jammies all day, unless we have company for dinner – which we did this year.  It was still quiet, as all the grandkids were occupied with their new stuff.

The very next day I came down with the latest version of norovirus.  This was the day we were supposed to start taking everything down because the day after that we were going to visit my mother some 700 miles away. Instead, I spent a day and a half praying to the porcelain gods and wishing I could sleep until it all passed. I mean, really…you get the pukes and a raging fever with body aches all at once.  Seriously?  ONE is bad enough, why oh why do we have to get both?  Then, I spent the next four days (three of which were at my mother’s house) with a come-and-go fever, cold sweats, and zero appetite. Good times.

But, it doesn’t end there…as we were preparing to leave on our long road trip (a day and a half behind schedule) – and let me tell you just how excited I was for that, having been so sick so recently – when my sister’s frantic calls and texts began.  Her husband was admitted to ICU with sepsis.  How he went from a healthy, cutthroat, corporate attorney to death’s door can be attributed to the medical profession.  He had a biopsy, it got infected, then it really pissed his body off and he wound up in the hospital for a solid week.  He’s home now, with a PICC line for antibiotics.  Out of the woods, be definitely still on the mend.

And that was just last week…hell, part of last week.  The rest, though, was anti-climactic after all that led up to it.

I even rang in 2016 asleep, on the couch at mom’s, for the first time since I was a child.

It was a hint for this year.  Keep it quiet, dude. I need my rest.