I'm ashamed of this...

I try to be all empowering about things. "Fuck yeah! I got fibrofuckingmyalgia!" because I'm relieved that after five long years of suffering through this bullshit, I got a diagnosis. We're closing in on Year Two of "Official Diagnosis Day" and I'm just going to admit it.

I'm embarrassed to say to people that I have this disease. I always feel like I have to say something to explain it or to justify that this disease, disorder, syndrome, whatever the hell they're calling it now- that it is indeed very real. I started having symptoms in my mid-30s and by my late-30s, the signs were undeniable to warrant that diagnosis.

But in that time, I'd gone through so much testing. I'd been told so many times that it isn't this and it isn't that. And I had that one terrible doctor who told me outright: "It isn't fibro, just forget about that..." So I did.

That day- when my GP said she'd refer me to a rheumatologist- I was so happy. I couldn't believe how easy it was- but wait. It wasn't easy. For two years leading up to that day, I kept track of symptoms. I made notes, I had those notes in literal scraps of paper, some in texts I sent to my email, some in Word files. I'd have a Post-it note with: "pain in right hip- 9" with the date. I arranged them all by date, printed them up. I searched online for symptoms and possible symptoms. I was thorough because I wanted to make sure that this doctor- who was new to me that day- understood that I wasn't making this up. I had a list of those symptoms, with the website urls on the page, and I wrote down the frequency/intensity of which I had that particular symptom.

She looked at my list, my three or four pages of information, and said she'd refer me to the rheumatology clinic. She asked if she could keep the printed pages for my records...  And that was that.

And here we are, two years later. And I still feel shame about stating: "I have a very real, debilitating disease" because I feel that people are still judging me. I blame that doctor I had- the bad one who said I didn't have it or rheumatoid arthritis (in case you didn't read that blog, he said he tested me for it, but he was telling me the results to a three-year-old blood test). I feel that people don't understand how I can feel good one day and then the next day I can barely move. How cold weather hurts AND hot weather hurts (it happens to be the humidity or a drastic weather change that bothers me).  How do I go all day long at the ren faire only to fold in half and not be able to sit comfortably two days later?

Well, at the ren faire, for one- I sit down a lot. A LOT. The clothing I wear- while it seems to be binding, isn't. I'm wearing skirts, which leaves the lower two-thirds of my body completely free of twisting, painful fabric. And the part that is tight, is around my upper torso- which rarely bothers me in the first place. Also, being there with my friends and other like-minded people, it feels good. I'd feel the same way if I were anywhere with a group of good friends. I might feel terrible, physically, but being with people who genuinely like and care about you makes you forget the pain. I also have Vicodin in my belt pouch, so if it gets too intense, I will take pain medicine.

This disease is fickle. This disease is unpredictable.  I don't like to be the one to complain all the time, which is why I try to keep my complaints confined to this blog. I have a few friends who genuinely care and when they ask me how I'm doing, I do tell them. But for the most part, I just say "I'm fine" or "I'm alive" and move on. Because I feel that nobody really wants to know how I really feel.

My favorite Aussie posted a link to an article that had some statistics on how fibro sufferers feel that they are perceived by other people. Even though the results show that: "66% of the people with fibromyalgia believed society views them as complainers, yet only 9% of the GP view them that way", I still feel like people don't believe me. Or worse, that I'm lazy. I know a few people in my family see it as "being lazy". That might explain why I feel that way about the general public.

I have fibrofuckingmyalgia. Having the official diagnosis is great. Having the actual disease is not. I don't wish this hell on anyone. And I hope that I'm handling my pain in an outward sense with the same strength and grace my grandma did. I still don't know how she went on every day for as long as she did.

If you know me, I try to keep things light and I use humor to cope. I prefer to do that, because if I let this get me down, I'd never get up again. So, a piece of rope walks into a bar and orders a drink. The bartender sees the rope at the bar and says: "Hey, we don't serve your kind here! Get out!" The rope goes outside and  starts twisting himself around, just twisting and turning himself over... when he's done, he musses his top a bit and walks back into the bar and orders a drink. The bartender eyes the piece of twisted rope and asks: "Hey, aren't you that same piece of rope that was in here earlier?"

The rope exclaims: "No, I'm a frayed knot!"

One of two things happened just now. You've either got an earworm of that Chumbawamba song ("when I get knocked down, I get back up again!") or you've just unfollowed this blog.

YOU'RE WELCOME!

Gravity is a harsh mistress- The Tick

The Tick- the live action version- was a fantastic show. I have it, in its entirety, on DVD. You should get it and watch it. Its priceless.

The last few days, something has finally occurred to me. And I've actually posted about this before... apparently I forgot that this is just a fact of life now.  Gravity fucking sucks. I don't know who had that great idea, but it fucking sucks. Let me explain...

The other day, I was exhausted in the middle of the afternoon. It happens. I don't like to take a late-day nap but sometimes, the body demands it. So, I went to my room, stripped off my jeans and crawled into bed. I crashed for an hour and ten minutes (I set an alarm). Then I fell back to sleep for another ten minutes. When I finally decided to get up, I felt as if I was being pulled down. All my muscles ached as if I'd been stretched, then released. I could barely stand up. I pulled on my too-big yoga pants and shuffled downstairs.

I spent the rest of the night, shuffling around like a little old man, and lamenting the kids these days. The next morning wasn't much better.

Today, I started to get tired in the middle of the day again. I had two choices- go do the dishes or go watch the shows I've had on the DVR for the last few weeks. You see, I'm a bit of a jousting nut. I know you probably don't believe me, but its true. I like jousting. There have been two TV shows in recent months. One- "Knights of Mayhem"- it was terrible. I called it "Jersey Faire". I couldn't get past three episodes. So much poorly edited, badly scripted "reality". The other one is "Full Metal Jousting". To be honest, I don't give a flying fuck who wins the show. I don't care. I just like watching the horses and the joust itself (and I swear, if I have to hear someone compliment a 12-year veteran of theatrical jousting on his lance control, I might have to punch a baby. He's good at lance control because he's been, you know, controlling lances for twelve goddamn years).

But I digress...

So, today, I chose to kill a few brain cells and see what was going on with the divas of the jousting world. I sat on the sofa, I fast-forwarded through the commercials and most of the talking (like I said, I like the actual jousting parts)... so I was sitting still for a little over an hour. I watched two episodes of the four I had on the DVR (so I'm still not caught up, but I don't care). When it came time for me to get up, I could barely lift myself up. All my muscles were stretched- or seemingly stretched.

Gravity fucking hurt. I could barely walk, much less walk up the stairs- which is where I needed to be. I dragged my feet, almost literally. I had trouble taking a regular step. I don't know how else to describe it other than to say I was being pulled to the floor by a very tenacious dwarf.

I'm still heavy feeling. My muscles are achy and they feel like they're burning. Oh, that's a familiar discussion, I know I've bitched about that before. It hurts to turn my head from side to side. But not like I have a crick in my neck, more like my shoulder and neck muscles lost a tug-of-war battle with a tenacious dwarf. A really tenacious dwarf who knows all my stress points and hits every one of them as he drags me to the floor. "You're a lousy housewife! You're husband abandoned you! Those boots you're wearing look like combat boots! Your kids' mother wears combat boots!"

The good news is that while I was still not feeling terrible- because at this point, I can't call it "feeling good"- I made chili in the crock pot, so dinner is taken care of tonight. The sink is full of dishes though. I wonder how hard it would be to train the dogs to do the dishes. And I mean do them properly, not just put them on the floor and let them lick them clean...

Wait, that does seem a little more convenient.

Oh stop groaning, I'm not going to do that.

Again.

No news? Good news? There's news?

Sadly there is nothing new to report. I've had some rough days and I've had some good days. Mostly though, I've been operating at around a five on that ridiculous pain scale. Five is tolerable, I can function without daytime pain meds at a five.

And that's kind of sad. Nobody should have to "function" with a pain level that makes most people to to the ER and re-enact the needle scene from "Pulp Fiction" in an effort to ease their pain. (Yes, I know it wasn't a pain drug, but Uma Thurman with a giant syringe in her chest was the first thing I could think of in a dramatic-needle-jammed-into-a-body scene).

Our mild winter did nothing to help me. Aside from the lack of snow and shoveling, it was quite humid and Humidity and I do not get along. She's cranky, I'm whiny. We're a terrible sitcom couple. Nobody would watch the "Pahz and Humidity Show". That's ridiculous, I don't even go by "Pahz" in real life.

I have spent a lot of time this year sewing. Sewing by hand hurts a lot, so I usually wait till the end of the day when I'm totally FUBAR on my pain meds, but it doesn't always help. Luckily, my parents kept my mom's rarely-used Kenmore sewing machine. Mom got it the year before I was born, so that makes that sewing machine almost 44 years old. The thing is- I don't sew well. Even on the machine. But, the machine is less painful and faster. And technically- that's wrong. I shouldn't be machine-sewing anything for the renaissance faire. But you know what? I'm putting it up there with my asthma inhaler. Yes, I'm a rennie. Yes, I like to look as authentic as I can. But, I'm not going to die of an asthma attack just because my emergency inhaler isn't period-correct. And if my machine-sewing a skirt is wrong, well, then I'm not as hardcore a rennie as I thought.

And you don't even care about that. You're reading about sewing skirts and garb and saying, "Blah, blah, blah, Patty! Get to the boobshelf already!" At this typing, we have thirty-six till the fabulous boobshelf is unleashed at the Janesville Renaissance Faire. Good news is that I'm working for six hours on the first day- which frees up some cash for spending on the second day.

The disabled guy is still gone on his ridiculous trip. And I'm not going to touch that topic with someone else's ten foot pole. Let's just say its been stressful for me and leave it at that.

I'm soldiering on, as usual. I have a doctor appointment in a couple weeks with my GP. My rheumatologist threw me back to the GP because my fibrofuckingmyalgia symptoms seem to be controlled by the Cyclobenzaprine. Not great, but also not terrible. And that's fine... I'd like to be pain-free, but I know that's about as likely to happen as winning the lottery. Although, I would think sleeping on a mattress stuffed with money would be quite comfortable, but who could sleep with all the maniacal giggling that would be going on?

What? You wouldn't giggle maniacally if you'd won the lottery and stuffed a mattress full of money?

Wow, what a weirdo.

I wish I could say that "no news is good news"...

Its been almost a month since my last update and there have been days where I wanted to write a blog post, but I just couldn't. This ever-changing weather we've had lately has been kicking my ass so very hard. I've had some good days, sure, but for the most part, I feel like a whiny little baby.

The disabled guy is still visiting his parents in North Carolina. And while some people would be all: "hells yeah! Alone time!", I've gone past that point. He's been gone over a month and I've had it with all this bullshit. It doesn't seem like much- just me and one adult child. But I also have to take care of all the dogs, plus the cats, and those two stupid rats. I don't get one day as a break- which one wouldn't think would be all that much anyway, I mean, they're just dogs, right? And the cats are fairly self-sustaining in that I don't have to constantly lavish attention on them like I do the dogs. And those goddamn rats. They chewed through three water bottles in five days. I finally popped for an eight-dollar glass bottle. Little bastards. I guess they don't remember how the disabled guy is their human advocate. (and yes, I've asked him to come home, he tells me "not yet").

There are little stressful things that keep happening. And I can handle the stress just fine. I'm a fucking magician when it comes to handling stress. But after the stress has passed and settled, it settles itself in my body and I hurt. Right now, I'm in so much bodily pain that my skin feels like its inflamed. My clothing hurts me. I ache in every muscle you can think of and I feel like those burning, achy muscles are wrapped in swollen, sore skin. Essentially, I feel like a giant bruise. An exhausted, giant bruise.

The adult-aged child who is still home doesn't care about the stress. He doesn't think it's a problem. He doesn't understand why I feel stressed. He doesn't understand how my body can be in pain without having done anything. Of course, to him, standing in the kitchen for a half hour to do dishes doesn't include sitting down for two hours afterward. I've tried to explain it to him, how I have to pace myself and plan out my day based on my expected level of activity. After a particularly annoying day, I told him that I hope his future spouse never has a chronic pain problem, because she'd never get sympathy from him. He wasn't amused. (but you know what? Fuck him and his amusement).

Years ago, before I was diagnosed with fibrofuckingmyalgia, I would have what we all now know as a flareup and I would wonder how people could live this way. My Grandma Viola had severe rheumatoid arthritis. Her hands essentially became misshapen claws, with horrible lumps on her knuckles. She couldn't pick up a glass or hold a pen. I didn't grow up near her, but we'd visit once or twice a year. I have these memories of her, from when I was a child, where she would sit in her wheelchair and cup her hands in one another and cry from the pain. And yet, she soldiered on... in pain and in a perpetual state of near-tears. I don't know how she did it. I'm having one of those days today. As I've been typing this, my right hand and wrist keep burning and my fingers go numb. I've had to stop and shake out my hand.

The housework has suffered the most from this. I haven't vacuumed in far too long. I only do the bare minimum. I do the dishes, because we need dishes. I clean up after the dogs as best I can. My sleep is totally screwed up. I don't even feel like eating, but I do because I'm hungry.

I mentioned the weather... weather changes tend to hurt a lot. And we've had every kind of weather possible in the state of Wisconsin and we had all that within 72 hours of each other. No joke. It was warmish, sort of typical for March. Then the temps dropped and it snowed for a day and a half. Then it warmed up and all the snow melted and it rained. But not just rained, we had a thunderstorm. Then we had high wind advisories and sunlight. Then it got cold again. We essentially had Spring, Winter, Spring, Summer, then Autumn... all within three days.

The next time someone says to me: "If ya don't like the weather in Wisconsin, just wait a few minutes! HAR-HAR-HAR!", I'm gonna punch them in the throat. I think that's a perfectly reasonable response.

Ren faire season isn't getting here quickly enough. We're under sixty days till the Janesville Faire. I have new garb to wear and that makes me happy, and its really comfortable garb (the lovely woman who made it did so by my actual measurements). I can't wait till faire season starts. I've already dressed up twice and taken photos. Why twice? Because the bodice is reversible and it makes two outfits that way.

I'm really tired of this fictional disease. For a made-up disorder that isn't real and just a cop-out for lazy people, it damn sure sucks. I wish this post was funnier, but I can't seem to muster my sense of humor for it. I'll end with a joke... brace yourself, its a damn good one.

Q: Why did the Turtle cross the road?

....

......

........

A: It was the chicken's day off!

And now, a MS Paint drawing of a turtle crossing the road that I literally just did after I typed the "Q" part of this joke. Consider yourself amused. YOU'RE WELCOME!

Entering Day Three of this "Flareup"

Seriously, man, they need to change the name of "flareup" to something else. The "flare" part gives the illusion it isn't going to last long. Like "hot flash". There's nothing "flash" about it. I've had hot "flashes" last for two hours.

I have fought the urge to get all whiny on my Facebook status today. I really, really wanted to just bitch about it today. I had to change my shirt three times before leaving the house this morning because each one wasn't soft enough. My skin aches today. Where my clothes are touching it, it outright hurts. And itching. Sweet Captain Frobisher, the itching! Why "Captain Frobisher" and not "Jesus" or "Fanny Adams"? Because I like Captain Frobisher- that is to say, I like the guy who plays him at Bristol. I have never walked away from a conversation with him and not been smiling. (also, who the hell is "Fanny Adams" and why is she sweet? I have no idea if the actual Captain Martin Frobisher was sweet or not, but I have absolute proof that the man who portrays him at Bristol is sweet).

I'm sitting here at my desk, listening to Shake Hands With Danger Radio, hoping that I can lose myself in the music. But it isn't working tonight.

I took Vicodin this morning, but it didn't do much other than make me type an email with a lot of typos that I had to fix. Much like I'm typing now, and I'm catching them as I go, because that's how I roll.

I can't sit still. When I sit still, my muscles twitch. So I'm doing that leg-jiggle thing that annoys people who are seated near you in a crowded room. But I'm alone in this room- canine presence notwithstanding- so it annoys nobody but me. Earlier today, I was chilly. Shivering caused me to hurt. Getting goosebumps caused me pain. But putting on a hoodie- which I have since donned- hurts like a bitch too. Being too cold makes me hurt with the shivering and goosebumps. Being too warm makes the itching more intense.

My hands are cold (Raynaud's Syndrome, part of the fibro), but the pain is making them burn as well. I'm also getting the little electrical jolt-y feeling in various places. I suppose the fibrofuckingmyalgia is getting back at me today for mocking that ad yesterday. Also... my ear started ringing this morning and it didn't stop till about a half hour ago (which was an hour after I took my nighttime Vicodin).

Now back to something more fun.

Captain Sir Martin Frobisher...

After discussing with the good Captain Frobisher that my boobshelf is indeed shelf-like, I told him about this photo (or one like it, there are two). Not to be outdone, Frobisher showed us the skills he had... with his codpiece.

This initial discussion was about facial hair. I said that I had some German in me, and I stroked my upper lip and added: "I use a cream. It smells terrible, but it works." Frobisher's companion said that it was "The German way- it smells terrible, but it works!". That's why the Captain is stroking his epic mustache in this photo. (that is his companion's hat on his codpiece).





Captain Frobisher and Jane the Phoole (another Favorite Person of mine).



At Stronghold, six months after the above video.

I've Seen those Ads, You've Seen those Ads, We've ALL Seen those Ads...

You know the ones, where the woman (always a woman!) is in her business casual clothes complaining that she's got "chronic, widespread pain" and how her doctor told her that attached to those aching muscles are nerves that send messages to the brain.

Wow, lady, I took general science in the eighth grade too! If you haven't witnessed the impressive creativity that is a drug ad- and congratulations, welcome to the Internet- here's a YouTube video of one...



Did you see that? The graphic with the brightly-lit "nerves" is a "dramatization". You know, just in case you believed that's what nerves look like.



I can't take Lyrica. Mostly because when they had me on Gabapentin, I swelled up like a startled blowfish.

See? Yeah. I swear this is a totally real photo of me.



There are many drugs out there that are supposed to help with "chronic, widespread pain" also known as fibrofuckingmyalgia. And to get to a point where one helps with the "chronic, widespread pain" is a crapshoot. Some people get lucky and have certain drugs work for them and they need not seek out more. In my case, the muscle relaxers help me sleep, which usually helps me feel better. I also have the Vicodin for my nightly pain and any spontaneous daytime pain.

But I digress.

In those ads, the woman whinges about her "chronic, widespread pain"- and I don't blame her- but she grasps her shoulder and makes a small wincing face to show her discomfort. Let me tell you what fibrofuckingmyalgia makes me feel like today.

Today, my skin feels hot, but when I touch it, its cool and normal. Under my skin, I have the beginning itches of that "millions of tiny, hairy-legged spiders" thing I've complained about before. I'm hoping that it doesn't escalate because as I type this, I'm an hour from taking my Vicodin at its regularly scheduled nightly time. That hot-feeling skin thing, that's my muscles. They feel like they're being pulled to the point of burning pain. But it isn't really intense, more like an annoyance. The burning pain- you all should know what I'm talking about. You've done a task, be it on purpose or accidentally, where your muscles were overworked. Weight-lifting, bike-riding, carrying a toddler for any length of time. And you can't stop what you're doing, but you can feel your muscles burning.

That would be the lactic acid being released in your muscles. But imagine that feeling all the time. All the time. Right now, sitting here at this computer, typing on this keyboard, my arm muscles burn like I'm in the weight room screaming: "Feel the burn! FEEL THE BURN!!" Except I'm not. I'm sitting here at this computer, typing on this keyboard. There's nothing strenuous about what I'm doing.

This pain I'm having in my muscles, below that burning feeling, isn't a wince-inducing, shoulder-grasping thing. It is actually more like: "please don't touch me or I may have to rip your arm out of the socket and throw it because it hurts." The hoodie I'm wearing hurts my muscles. My clothing is hurting me. I'd be sitting here, at this computer, typing on this keyboard, stark naked if I could, but my computer desk is in the dining room and the dining room and living room are kind of open to each other. And I simply can't afford the therapy my kids would need after seeing their mother surfing on the Internet, while naked.

This chair hurts to sit in as well, but I haven't yet mastered the art of levitation, so there isn't much I can do about that.

I can feel every single muscle movement. Even the ones that are supposed to be unconscious- like breathing and blinking. When I blink, the skin and muscles around my eyes ache. When I breathe, the muscles and ligaments in my chest ache. I feel every muscle ache because my muscles feel like they're pulled to the limit.

Sometimes, when I feel that I can't take the pain much longer- or if the Vicodin is taking too long to take the edge off- I will purposefully press on one body part or flex a body part just so it will hurt more than the other body parts and I can forget about the "chronic, widespread pain" for a few minutes. This time of year is particularly rough because the weather seemingly changes daily and I've got almost nothing to distract me. In the Spring and Summer, I can lose myself for thirty minutes in photography. Then I can lose another hour, sometimes more, by editing the hundred photos I took in that thirty minutes.

I just tossed my hair out of my eyes and felt everything from my head down to my mid-chest burn and scream out a little. The hair is still mostly in my eyes. My "overactive nerves that send messages" don't look all sparkly like they do in that ad. Mine are angry and ugly, and look more like that guy from the toenail fungus ad.

Yeah, this guy.



So there you have it. How fibrofuckingmyalgia makes me feel. And this flareup has been going on for two straight days. And most of the time, I go through my days with that slight burning pain in my muscles. Those are "good days". Today is a moderate day. I didn't take any Vicodin, even though I wanted to. I did spend about an hour curled up under my fleece blankets in bed.

About Falling... as in "On my Ass"...

Last Monday night, my second worst fear happened. I slipped on the ice and tore up my human knee again.

Why is this my second worst fear? Because my worst fear- with my knees, of course- is falling and destroying my cyborg knee. I have this irrational image of the metal knee joint shearing away from bone and leaving me with a blindingly painful rubbery knee. I found out last year that isn't what happens when one damages a metal knee joint. What happens is much worse, involves metal rods and screws and the rebuilding of your femur like a thousand-piece puzzle.

I didn't write a blog about this last week because I wanted to see my surgeon first. I had that appointment this morning. I was hoping that my appointment last year was my last-ever. Well, that's today, dammit. As nice as he and his nurses are, I never want to see them ever again. He agreed.

The good news is that there is nothing wrong with my cyborg knee. It isn't chipped, cracked, injured or otherwise damaged. The human knee has nothing structurally wrong with it from this slip and fall. The bones are intact and not dislocated. The arthritis is "very obvious", similar to what caused me to need the other knee replacement. But it is in no way needing a replacement.

And the injury itself triggered a delightful fibro flareup. Using crutches for three days just about killed my arms. That was a muscle memory I was unhappy with and I wish my muscles would remember the yoga and the walking. I stopped using the crutches and started using the two canes. George and Gracie. Yes, I named them. Eventually, I stopped using two and was down to just the one.




Since I've been putting off writing this blog, I got even lazier and did a video of my route on my deck.



I mentioned a photo in the video. Here's the photo in question- I did some Photoshop to show where the ice/water was when I was old-man shuffling around. And the red X is where I landed on my ass.



And, my knee has a glorious bruise on it. These photos were taken on Wednesday- so not even two days after it happened.

This was taken in the morning, after my shower. Yes... I was naked. YOU'RE LOOKING AT A NAKED PHOTO OF ME! I KNOW, YOU FEEL ASHAMED!



And this one was later in the day. I'm poking the part where my kneecap is supposed to be.



So, according to ol' Doc Bones, I'm doing everything I'm supposed to- ice, elevation, pain meds as needed. And I'm still trying to stay active. As active as one can be while whining about a fibrofuckingmyalgia flareup and a hurt knee. And, the knee exam left me tired and sore. I feel terrible right now. Well, not right now because I took some Vicodin a few hours ago. I felt terrible... Yay, Vicodin!

Also, on Saturday, this happened:



And today, this happened:



So if we just ignore the whole slipped-on-the-ice thing, this week wasn't all that bad.