I should start things off I suppose, by explaining where this particular little mind diversion got started. Now, in addition to writing, attempting to run a nerdly natural nest, and more then a tad bit of sewing in my day.... I also spend my fair share of time surfing the web and reading some very talented peoples work. Some makes me laugh, some think, others groan. At times I find some that cause ideas to pop and yell for attention, becoming either springboards to my own writing or even flat rebuttals. Some of my favorites can be found over in the right side of this page if you're in the mood to wander. I'll warn in advance, a few aren't exactly work safe, so you might want to meander around on your own time.
Now, there are a few writers out there that I check every day. http://ambulancedriverfiles.blogspot.com/ , http://thelawdogfiles.blogspot.com/ http://crankyprof.blogspot.com/ are three such blogs that I eagerly await each new posting. All captains of well turned phrases, all intelligent (and often wonderfully snarky) disputants of a myriad of subjects. But today, it AD's site that caused a slight mental tizzy, coupled with both irritation and dread. I have started a dozen letters to him, (and I'll be sending him a link here, as I think this might be a clearer way to explain then any of the letters I began writing and gave up on.) some angry, some annoyed, a few that sounded frankly whiny, and several that just didn't clearly make my point. A few days ago, he posted another bit on the wonders of fibromyalgia... and that's where it all got terribly difficult for me.
Ambulance Driver is a marvelous writer, chronicling his life as (you might have guessed) an EMT. Funny, dryly droll, educated in his subjects. He has touched on fibro several times, once with me responding, and his latest with another sufferer taking their turn at bat. This time, I'm going to try it separately... and see if I can explain the perturbation his writing is causing some of us.
For those of you looking at this posting oddly, wondering just what the heck fibromyalgia is, allow me to give a quick(ish) explanation. Its a wonderful mixed bag of chronic pain and fatigue, often coupled with such party favors as IBS, heart arrhythmia's, allergies – chemical & environmental, mental fog, and... just as the perfect icing on the cake – depression. To be fair, fibro is really an umbrella term used to describe a whole collective of connecting “issues”. The best way to describe the pain element is to short hand it to – arthritis not in the bones but in the connecting tissue that holds everything together. If you have ever trimmed a roast, that thick silvery skin that keeps the muscles connected to muscles.... it in that. Fun. Now, why do I care about this? I was diagnosed three years ago. Now, don't get me wrong. Some days I'm fine. Beyond fine in fact. The reason the Prime Geek refers to me at times as a hamster on speed is when I'm having a good day, I spend most of it desperately trying to catch up and then get things done ahead for the bad days. I have a fun grab bag to deal with, pain is a pretty constant thing. Now, in my case... I've had health “issues” most of my life and my pain threshold is pretty high. It has to be, I simply have too much to do to sit out my life just because I hurt. But, it IS there. Cold damp days suck for me (the reason we camp in palatial style... or at least the excuse the PG gives to explain his thrill for the ostentatious!), as do severe weather changes. Moving is critical, if I'm still for too long my body will cramp, and that just gets ugly. I don't sleep much (laying still is worse then sitting still) and that no doubt plays a part in all the other issues. Hubby often thinks if I could just get a solid week of sleep in, I could catch my body up and have longer periods of good days. Still searching for something to shut my brain off (a mix of tylenol pm, over the counter sleeping pills, herbal tea that frankly tastes of horse piss, and the odd shot of vodka is where I am at the moment. Any suggestions, feel free to send me a hint.) so that is a case of maybe. No doubt its the lack of sleep that makes me tired, often gets me cranky, and leads to massive brain farts as my mind desperately tries to tunnel through all the assorted piles of crap to get to one needed thought.
I have the heart issue, in my case a fortunately mild malformation of a valve that while I pass out from time to time, my body has figured out how to essentially reboot itself once it figures out there is a problem. A moment or two of my blood not flowing, my brain kicks out its own Mayday yelp and I'm back in business. More annoying for me then anything else (my backside is well padded and injuries are usually nominal.) its more of a trauma for those around me. A 6'1 female suddenly going white and hitting the floor is a concern for any shorter person around me. My mom laughs that's one of the reasons I married the PG, if I fall on a power lifter I will not risk crushing him.
The fog? Check, got that too... but as a writer, I'm rarely without a pad and pen. With lists shoved in pockets and taped to walls, notes to check for lists on mirrors and computer screens, even reminders typed into my cellphones alarm, I manage to keep my life flowing more or less smoothly. The things that I do completely space out on, I have a portable brain (wave PG) usually somewhere near that I can pump for help.
IBS? Well, we covered that when I was discussing giving up toilet paper. There's a reason I don't have a magazine rack in my bathroom, I have a bookshelf. With the new laptop I'm considering having the Prime Geek build a lap desk to mount next to the toilet. Might as well be productive when I'm stuck in there, right?
Allergies? Check – fun ones too. I don't mind the food allergies all that much, although I could kill for a piece of my mom's banana bread some days, and I do miss shellfish. But the chemical ones are the biggies. Can't take most pain killers, as they would, well... kill me. Vikoden? Seizers. Oxy? Same. Anything with the word "Codone" or "Codeine" in it are big no-no's. Heck, if you wanted to find out where people are partying when they shouldn't, have me walk around, I'm better then a drug dog. One sniff of weed and I'm puking in the corner. Avoiding “those” kind of parties in college was no biggie, the thought of my dad killing me didn't keep me away, the thought of ruining my new leather boots did. Its these allergies that lead to so much difficulties in treating my fibro. If I can't take painkillers to manage the pain.... what can a doctor do other then pat me on the back and say “Sorry kid, it sucks to be you. Next incarnation try for an upgrade.” I've seen countless doctors, many who simply shrugged and admitted themselves to be at a loss. Only in the last few years was I able to find a doctor who could identify my “issues” and allergies as part of one illness. I lucked out and found the doctor who actually DID end up writing the book on fibro. Sadly, not all are as lucky as I.
Depression? Yeah. Sometimes. It's hard not to when you're hurting, aching, sitting in a bathroom being sick. Its a tad bit of a downer. Frankly, only the fact I have a sick and twisted sense of humor keeps me going at times. I laugh when normal folks cry, I get a morbid curiosity over what is gonna fall apart next. Its what keeps me sane(ish).
Which leads me to what started this post off in the first place. Apparently some folks are using fibromyalgia (a hard to diagnose, often MISdiagnosed, still not terribly well understood syndrome) to scam their way to hard core meds. I can fully understand how frustrating and sickening that would be for a heath care provider. I can sympathize with the annoyance of having drug dependent people littering up ER's and urgent care facilities with long lists of why they need their fix dragging them away from people who need REAL care. Honest. I get it. I can even see the humor in his post regarding the Fibromyalgia Claus ala' Virginia's Santa. AD even throws us a bone by stating “Just because I've never personally seen a legitimate fibromyalgia sufferer does not mean that they don't exist. It may just be that they're too busy living their lives to show up in an ER six times a month begging for a fix.” He states he's willing to believe in us, just that those that HE sees don't fit in his head as a real patient.
Too busy? Damn straight. Being 28 and having to have my husband remove the round shower handles and replace them with ones I CAN grip is embarrassing enough. Showing up at a hospital just isn't in my plans. Hades. It's hard enough to get me to a doctor anymore these days. And, frankly.... that reluctance is built on mindsets like AD's. Years of being thought I was lazy, stupid, mentally defective, unmotivated, or worse – all of the above make me dread going to the doctor. The day I found out there was a portion of my heart that was visibly not what it should be was an actual relief. I wasn't nuts! I wasn't lazy... frankly the doc was shocked when I rattled off my day to day list of things to get done. It took a seizure in the waiting room for another to realize I really WAS allergic to certain meds. (A cracked skull I was glad to get.) My tp usage is proof of the stomach issues. I've been poked and prodded, tested up and down,and swallowed more green glowing goo then anything that is landbased should ever contemplate ingesting.
I'm not nuts. I'm not lazy. I'm not a hypochondriac junkie looking for her fix. I live my life as best I can, always trying to find ways to work around my health issues. Some days all I need (as
one commenter on AD's blog stated) is a hot bath and a handful of tylenol. Others aren't as rosy... but I get through.
So why the rant? Why the need to address someone else's view on my own site? Why, to put it simply, am I doing this?
If a police officer said the following, how would you react? (Oh boy, I'm gonna get some nasty comments from this....) “All I even see are black men beating on their wives. Everyday, smacking their women and kids around. That's all black men are doing as far as I can see. Course, the good ones might just be living quietly, being good husbands. Perhaps. But all I see are black men beating down on people.”?
A politician who stated “All the gay men I know have been pedophiles. There may well be some good gay men out there. I just don't see them.”?
Riots in the streets, media screaming for their heads, or worse..... a Barbara Walters Special. (shudder)
Can we just drop the fibro=malingerers thing now? Yeah, you're having a rough time with people in the ER. I get that. I do. But at a time where fibro isn't really very well understood, when doctors are still arguing over treatments AND diagnosis, when people are still struggling to figure out what is wrong with them and why they just don't seem to be getting better... can we just drop the whole shtick? I'm the last person to scream for PC behavior, but at the moment you're making a lot of people's life that much harder. Saving face by hiding behind the lines of “You just haven't met them, they might be real” is perpetrating a bigger problem... and frankly it stopped being amusing awhile ago.
Lupus was once “All in our heads”. So was MS. You state in your own comments that you realize the majority of fibro sufferers are not the problem. That you fail to see the harm in you spouting off after a bad day. Here's the problem.
Not everyone reads through the comment following a post. To someone reading a site, written by a medical professional – you've essentially explained away fibro as nothing more than a crappy attempt to get prescription meds. To someone seeking information on a possible diagnosis... a MEDICAL professional has just waved it away. Yes, no one should self-diagnose or refute a doctor's diagnosis from something a humorous slice of life website says... sadly however, its a common things. PG calls it the Wallmart factor, ie – the lowest common denominator. You are an amazing writer with a huge audience. Several times now people have written into your comments reactions ranging from fury (a bit melodramatic, but some folks are) to despair, with a fair amount of frustration and epic long explanations and attempted reasoned replies... and yet it still gets dragged back up again in a few months.
Can it just be let go of now? Please? At this point its just getting worn into the ground. Your website, your point of view, your slice of life as it happens around you. I get that, but what I also get it there is power in words – be they written or spoken. Now it just comes off as a bit smug and somewhat pat. Please. Just move on.
I have never met a fibro patient who simply walked into an office and was clapped on the back with an instant diagnosis of fibro. Most of us endure years of misdiagnoses, meds that cause more ills then good, dark periods of wondering if we really ARE just nuts (lazy, stupid, what have you). Maybe we did something wrong, was it a punishment... why can't we fix it and get better. There is no magic pill to pop, no surgery that will render us better once the bandages are off. If we're lucky, we have a lifetime of searching and researching ahead of us, therapies to try, diets to follow, exercises to do, and family members to placate. We often hear the chant of “But, you LOOK fine.....” and either have to keep silent to avoid the views such as yours or accept the stares and doubts and try to educate those around us in the hope that in time others will have an easier life because we tried to explain.
If all you see in your ER are the fakes and the phonies... before you smirk and dismiss so many others who, as you said yourself, are simply trying to live their lives quietly... look around for us. Take an afternoon and read sites like http://www.fmaware.org/ for the facts, or track down one of us and talk to us. Most of the ones just trying to live their lives will be happy to answer anything that might help others skip the path we had to walk to a diagnosis.
I think you might be surprised.