Well Played, Fibro, well played...

*slow clap*

I've been procrastinating. I've put off writing this blog for almost a whole week. Lack of motivation, exhaustion, pain, stress... take your pick. On Monday, I procrastinated writing this by going to the store. And we all know how I hate going to the store.

I am a goddess when it comes to procrastination. And the weird thing about that is that when I used to do it, I would suddenly become more creative or become inspired. I had a deadline for homework or something and if I waited to the day before it was due, it would end up being some of my best work. I was even late on a photography assignment. And the teacher had a policy- if you were late, she took points off per day that you were late. I handed in my assignment on panning two days late. I should have had an entire letter grade taken off for that. She gave me an A anyway, because "it was too good for me to give it a B..." her words to me.

My body has decided that since I won't write a blog post in the daytime, it would help me get it out in the nighttime.
Well played, Fibrofuckingmyalgia, well played...

So, one would think that procrastinating this blog post for a week would result in something fantastic. Nope. Not so much. What we are getting, though, is a blog post brought to us by Insomnia Lite. And did I even start this when I got out of my wide-awake bed? No. I went to Facebook where I replied to some posts and then bitched about the fake insomnia. And then I read a really cool Buzzfeed article about one of the jousters I know.
AND THEN I WROTE MY BLOG POST   Nope! Not even then! I opened Photoshop and dug out my backup hard drive to find some photos from last year's Janesville Ren Faire to add text saying: "Soon". But then I stopped myself, because c'mon, I needed to type this up, right?

Here I am, having the all-over-itchy-body thing. And don't get me started on the muscle thing. I'm having the pain, of course. But not just pain, I have an all-over tightness in my muscles too. I feel like I need a good stretch.

"Why don't you just take a moment and stretch things? You used to be athletic, right? You know how to stretch properly..." 

YOU WOULD THINK SO, WOULDN'T YOU?!

As I lay in my bed (Laid? Lied? Lain? Slain?), itching and awake and achy, I decided to do some stretching to ease that muscle tightness. It didn't go exactly as planned... my quad- that's that big-ass muscle in the back of the thigh, right? You know, right under the ass? That big-ass muscle on the back of my thigh decided to remind me it existed by getting a cramp of Charlie Horse proportions. So... that. I started to stretch my arms and shoulders, but I felt that sharp tightening, so I stopped before it became a full-blown Armlie Horse.

To add to this general discomfort, my desk chair broke a few weeks ago (it had a good and busy life, supporting my ass- through the knee replacement and everything, so it was at least five years old). So I took my dad's. I mean, c'mon, he's not using it. Apparently, his ghost was, because it lasted a week in my house before it broke. (I have no idea how old his chair was). So, the Ghost of Dad decided that he didn't like me taking his chair and it broke... it literally broke beyond use the day I ordered a new office chair online (it should be here Friday!). I'm sitting on a hard metal folding chair with a sofa throw pillow on it. I would have thought with an ass as large as mine that I'd have a little built-in padding. Turns out, that's just for show. I'm sitting up so perfectly straight that my 8th grade typing teacher would be proud. (I'm also typing without looking at my hands, because that's how I was taught and my keyboard is on a little shelf under the top of my desk- good thing schools taught girls how to type in the early 80s, right?).

Oh, I do have one good thing to say... remember how excited I was about having that shot in my foot? Well, less than a week later, it was back to its usual level of Railroad Spike Hammering pain. I waited another few weeks, because I wasn't sure how long it should take to go into full effect. The last time I had it done was while I was under anesthesia for my total knee replacement and I was on the fabulous pain medication known as Oxycontin. I even had Morphine the day after the surgery. That was a fun drug. As the nurse put the needle into my IV tube, I was writhing in pain and as she pressed the syringe plunger (that's what that thing is called, right?), I asked: "How long will it be before this takes effect?" Except I said it more like this: "How long till ThIs TaKeSSssss uhhhhffff-ehhhcktuh?" And then I woke up four hours later.

So you can see that I wasn't sure how long that shot would take to work. I went back after four weeks and the doctor discussed my options with me. And so as not to bore you to bits again, I covered that in a blog post on Conversations with the Disabled Guy. To summarize- my choices were "another shot and hope for the best" or surgery. And the surgery needs 6 weeks to recover. And I won't have that kind of time till November. Just a reminder- my fibro made my knee replacement recovery last a year and a half instead of just a year. So quite obviously, I can't count on my body going along with that 6-week timeline.

We opted for the "another shot and hope for the best" option. And good news- it worked this time. Now the only pain I have to deal with is the fibro (and the tendinitis in my feet and shoulder, and the arthritis in my hands and wrist... but hey, that's okay!).

I'm sitting here, in the middle of the night, on a horrible metal folding chair and sofa pillow, listening to Flo Rida, and itching like I've got some kind of medieval disease.

But at least my left foot doesn't hurt.

And we've got 39 days till the Janesville Renaissance Faire.

Bring it.

What happens when you get ALL THE SPOONS!

"Spoons? What the hell are you talking about, crazy lady?" says you, in a really snotty tone. I mean, really, we're one sentence in and you're already sighing and rolling your eyes. Aw, c'mon... there's going to be photos related to this down below. And maybe some illustrations!

You'll love the illustrations! I'm so talented.

Not at illustrating, just in general.

First, let me link you over to The Spoon Theory by Christine Miserandino. Go on, go over there and read it. I'll wait here...

Hey, while they're over there reading the article, I'll just talk about the gist of it- you see, the "spoon theory" uses regular old spoons to demonstrate how people with chronic illnesses get through their days. You start out the day with X-number of spoons. Each task takes a spoon from you. Some days, you have a HUNDRED SPOONS and you never run out! Some days, you have no spoons and those days suck ever-so-hard (and not in the good way, know what I'm sayin'?). Some days, you have four spoons and the very act of getting out of bed takes a spoon. Walking down the stairs takes a spoon. Getting your breakfast takes a spoon. And you're down to one spoon and you haven't even gotten dressed yet. And guess what? Those hundred spoons you had the other day? Yeah, you don't get to keep those. They don't carry over like those rollover minutes on your outdated mobile phone plan.

What's all this got to do with me? Well, I'll tell you...

Welcome back, guys. Did you enjoy that article? I hope so. It made me cry the first time I read it. But then, yesterday, I cried during "Independence Day", so don't listen to me about things that make me cry. (it was the Russell Case scene when he says: "Do me a favor... tell my kids I love 'em..." and BAM! TEARS!).

For the record, crying takes a spoon.

But back to today! TODAY!

I was going to illustrate today's stuff in a series of photos. But, I ran out of spoons before I got to the photo part. I had to go to the store and that took all the spoons I thought I had.

So, let's get started.

Today, I woke up having a pain flareup. I struggled to sit up on the edge of my bed. It took two tries to turn off my alarm. I use my mobile phone as my alarm clock. And the alarm that wakes me up first is a song by Steam Powered Giraffe. Hey, I like to wake up to a smile and SPG makes me smile. Especially that song.

This is a recreation of the event. I wake up early, before the sun is up. And when I got the idea for this blog, it was well into the daytime and I didn't feel like recreating it with a photo. Hence this lovely illustration. We have a reasonable facsimile of my room. A window with a dream catcher, me sitting on the edge with my red mobile phone. A lump in the bed representing the Disabled Guy.




I was rested, which is shocking, but I was in agony. All-over aching pain. I felt like I'd been thrown down a flight of stairs and stepped on. So, when I finally made it down the stairs- getting up and walking to the bathroom- one spoon and Putting on a T-shirt and yoga pants- one spoon (I sleep naked. Yeah, I'm naked in that illustration. How about that, Internet?)... Where was I?

Oh, yes... when I finally got downstairs- which took about ten minutes- I did my morning usual: took my thyroid pill, and 20 minutes later, took my morning muscle relaxer. But today, I had a Vicodin chaser with that. About 45 minutes later, I got up to go take the rest of my stay-alive medicine (some asthma stuff, a couple water pills, a blood pressure pill, and some vitamins the doctor told me to take) and to get my breakfast (I had Raisin Bran). I felt good. I felt really good! The muscle relaxer and Vicodin cocktail on an empty stomach worked!

YES!

I HAVE ALL THE SPOONS!

Normally, on a flareup day, I end up going back to bed after breakfast. Sometimes I sleep, sometimes I don't. Okay, most of the time, I sleep. But today? No way, man. I didn't need to sleep! Instead of stripping down and crawling back under my two fleece blankets, I stayed up. I took a shower.

I HAD ALL THE SPOONS!

*photographic evidence of ALL THE SPOONS*



"Wait a minute," you say, "Is that a whisk?"

Yes, that's a whisk.

"I think I see a ladle." you tell me.

You do.

"And a spork. Is that a spork?"

Yes, it is. You see, when it comes to having ALL THE SPOONS, we don't discriminate. WE HAVE ALL THE SPOONS! AND A WHISK! AND A LADLE AND BY GOD, WE HAVE A SPORK!

So, imagine my disappointment when, during my morning routine of blowdrying my hair and getting dressed, my spoons were being rapidly depleted. I don't know what happened. A task that was supposed to take one spoon was taking two. And I might have dropped one. All I know is that the spoons were gone by the time I had to drag myself to the store.

All the spoons...



And I no longer held them in my hand. No, they were gone. Sure, they look like they're on that table, but they're not. What happened to the spork? I have no idea. Even when I came inside, the spork was gone.

Instead of having ALL THE SPOONS, I was now being crushed by the spoons.

*artist rendering*



By the time I was done dragging myself around, I decided to do the photos. And halfway through the two photos, I said: "To hell with this standing and moving thing, I'm going to draw some stuff in Paint."

And that brings us to now.

Today's spoons were an illusion. They were held up to me and I was toyed with and still managed to get to the store and I made chicken casserole for dinner. Because comfort food, goddammit.

When you think you have ALL THE SPOONS, make sure you do. And if your spoons are rudely taken from you as mine were today- don't mentally obligate yourself into doing tasks that take energy. Stick figures in Paint are just as good- IF NOT BETTER- than photographs.

Also, I made today's chicken casserole with fresh chicken. It really wasn't any extra work than using canned chicken. I suggest you give it a shot if you haven't already.

The worst part of losing today's spoons? I didn't have the energy to bake the cheesecake I was going to bake.

Dammit. DAMN YOU, SPOONS!

Mutant powers aren't all they're cracked up to be...

I've said it a few times- my superhero power is fast healing. That accounts for my ugly scars and the fact my knee healed so quickly after my knee replacement that the doctor had to knock me out and bend my knee for me. He described it as: "Snap, crackle, and pop" as the adhesions (sort of like scar tissue) were broken up as he forced my knee to bend to 90° (up till that point, it had been going to around 70° with help, 50-ish in its normal state).

I've had a hellish week. Maybe longer, I don't even know anymore. I trudge on because what else can I do? On the days I don't have to leave the house, I take my Vicodin on a six-hour cycle. The days I have to leave the house, I don't.

You all know the drill... aching muscles, focused pain in different parts. On top of all that, my skin is aching. The shower hurts. The water hitting me feels like hot needles jamming into my skin. I can't tolerate the tiny dogs stepping on me. It feels like someone is jamming a rod into my muscle when teeny-tiny, four-pounds-on-a-good-day Beefy steps onto my lap. I've been swelling for over a week now, too. My legs, ankles, and feet. I don't know if I'm swelling anywhere else because when my skin hurts like this, I wear my huge clothes. Mostly the 4x and 5x "I shoot RAW" T-shirts. 3X is loose, but not loose enough. And don't even come at me with a 2X. That barely fits over the boobshelf on a good day. I sleep naked (sorry for that mental image), but between  the "get out of bed" and "take a shower, get dressed" stages of my day, I have to wear something. Since I used to exercise in the mornings, I'd put on sweats and a loose T-shirt. I still do. Except now its yoga pants and a huge T-shirt. (mostly, black yoga pants and my blue 5x "I shoot RAW" T-shirt). Today, after my shower, I put on a different pair of black yoga pants and my maroon 5x "I shoot RAW" T-shirt along with my black, fleece-lined hoodie. I was going to change before I sat down to write this, but jeez, why bother? I'd be switching a pair of yoga pants for an older pair of yoga pants and a huge T-shirt for a slightly more-worn huge T-shirt.

My hands are aching, not like arthritis (thank fuck, because that shit hurts more than the fibro-ache), but when they get to the point of being so sore that I have to rub them, it feels like I'm rubbing the skin from my bones. The pain in the muscles and tendons in my hands and fingers feels like it goes right through the bones. I assume because my finger bones are closer to the surface than say... my ass, I mean my hip. Not my ass... that cushions my hips, but there's a lot of ass between the skin and the bone. Or something.

We had rain and cold all week. I assume that's what caused this flareup. Whatever it was, it can just fucking stop now. Seriously. I'm done with you. I need to go to Home Depot, goddammit and I can't do that if you're going to attack me like an angry, yet lazy The Blob. That's his real name, right? The Blob. I mean, just "Blob" is a little familiar and I'm not going to call him "Mister Blob" because fuck him, he's a blob.

Now this is going to take a random jump, because I had to stop typing for a few minutes.

I really want to sit on the sofa and watch a movie (I don't know what, we have tons, even a few I haven't watched yet), but I know what it will feel like when I try to get up after two hours of sitting there. It will hurt. It will hurt so much that I can't find adequate words to describe how much it would hurt. And right now, after hurting so much for so long, I don't want any extra hurt.

I mentioned taking the Vicodin on a six hour cycle- I should mention also that it doesn't take the pain away. It takes the edge off the pain. It makes me hurt a little less so I don't end up crying. Although, at this point, I just might put in a really sappy movie and just let myself cry at that so I can feel better after. Although, I'm not sure I'd feel better, because I'd have that pesky "sitting on the sofa, can't get up" pain.

Here is my normal pain. Normal, manageable, totally go without Vicodin all day.




This is the "I just got up from the sofa" pain. The kind of pain that makes me exclaim swear words. The kind that brings me to tears.



Does that help? Do you get what I'm saying? Are you picking up what I'm putting down? Are you smelling what that rhino is cooking?

No, wait... that's not quite right. I don't think you can really grasp the whole thing here. So, I made this in Photoshop.



Ah, there we go... that's more like it.

All I've done so far was bitch about the pain. I haven't even whined about the exhaustion. Well, I really can't. I've had some days when I'm so tired I can barely sit up and I've had other days when I'm fine. The one constant in all these days is the pain. The Disabled Guy called me today about something trivial (the title of a movie) and I tried to explain to him that I wasn't thinking clearly because of all the pain and Vicodin. He didn't care. He just wanted to know what the name of a movie was. Spoiler alert- "Planet Terror" from the "Grindhouse" double feature.

I have to go now. I made a strawberry cheesecake because I had too many strawberries and had to do something with them before they went bad. What? That's a perfectly reasonable thing to do an hour after you take Vicodin. Also, this happened today. 

What does this feel like?

I get asked that more than I can remember. Or maybe I only hear it in my mind. Who knows... But, you're here and reading this now, so let's discuss how fibrofuckingmyalgia feels. And I know that's what I whine about on this blog a lot. But in a general sense, how does this stupid thing feel...

I've compared it to being thrown from a horse, hit by a truck (I've never actually been hit by a truck, except when I was in another vehicle, which isn't the same thing), and more often than not, I compare the overall feeling of pain and tightness to that of a heavy workout. Like, you know when you work out after not working out? And the next day, your muscles are tired and they're sore? But it feels good, sort of. In an accomplished way. Fibro is a lot like that, without the accomplishment.

Last week, I was forced to change my description.  I had a product gig (in case you don't know, I take product photos for a local clothing designer, for their website/catalog). And I had twelve products to shoot (this time, sandals). Twelve sandals, six photos each (front, back, side, side, three-quarter front, and top). And for each photo, I had to adjust the sandal... straps, buckles... And these sandals are NICE. The leather is so soft that it doesn't stand up on its own for a photo. I have to use tricks and things to prop up bits here and there.

So, there I was, standing, then sitting to take the photo, then standing, then sitting, then standing, then sitting (I have a folding table that I take my product photos on, about the height of a card table, but half as wide). For more than seventy-two photos (because I kept seventy-two, I probably took 80 or more). Later that evening, every time I moved, my thigh muscles screamed out in pain.

It felt GOOD. The pain was that post-workout pain and it really did feel good. I poked at my thigh. Ouch. Ha! Poke... poke... I'd flex my leg muscles just to make that pain happen. It felt that good.

The next morning? Oh, here we are... back to the fibro pain. And yet, that pain in my thighs still felt like post-workout pain. (I really do miss working out). So, fibrofuckingmyalgia feels nothing like workout pain. And it doesn't feel like: "...an all-over feeling of tightness..." that the TV drug ads tell us it feels like as the physically fit woman reaches over and gently squeezes her shoulder.

Yes, there is tightness. But it isn't mild. It feels as though your muscles are being pulled apart. Pulled  slowly away from the joints. A steady, slow, agonizing tightly-pulled feeling. And you know that feeling you get after you, say, hold your two-year-old toddler too long? You're standing, he's bored, you pick him up but then end up holding him for too long? That tired-muscle feeling... happens all the time. Every day. That's what I felt just now when I paused in my typing to pick up a six pound Chihuahua who wanted some attention because that's what six pound Chis do (want attention). Six pounds and I felt like I'd been holding a toddler while waiting in a slow line at the DMV.

The pain isn't just all-over and tight. There are "hot spots". I've mentioned a few of mine before. My hip muscle. It used to be my right one. Now the left one hurts, but not the right one. And my foot and ankle. I spent almost six months with a pain in my ankle and into my foot that felt like a severe sprain. Every day. My hands from time to time cause me a lot of pain. My shoulder joint- right side. I have tendinitis in my shoulders, so it usually feels like a terrible tendinitis flareup.

And, of course, the skin. Itchy, itchy skin. But not a normal itch, more like a "oh, I've burst into flames after stumbling into an itchy convention" kind of itch. Under the skin, painful, feels hot. I've wanted to drag a vegetable peeler across my skin. How much worse could it feel?

Today was about a six or seven on the pain scale. I managed not to fall asleep for no reason, so that's good. But gravity has been especially harsh lately and because the weather is changing (again, still, I can't keep track), I'm treated to the fire skin.

That's what it feels like. Sometimes. Other times, it is much worse. And even other times, it is much better. But mostly, fibrofuckingmyalgia is full of suck and it has nothing good and fun. Well, except me... because I'm awesome.

So much achy whining- today was a daytime Vicodin Day

I joined a group on Flickr called "We're Here!". Members choose a day of the month and they set a theme. Then everyone in the group does a photo in relation to that theme and posts it in the "We're Here!" group and a group related to the theme that the theme-chooser found or is already a part of- it isn't as complicated as I'm making it sound. Its a good idea, because I'm in my third year of doing the 365 self-portraits. I haven't missed a day yet. And having someone else decide my theme for me takes some of the pressure off. Not that I was ever under pressure, of course.

I have a couple Flickr friends that are in the group and through the urging of one of them, I joined the group. I didn't think I'd participate all that much, but so far I have till today (today's theme is "facedown for my birthday" for a member's birthday. I can't do it- its called "planking"). Why am I telling you all this? Because the "Water, Water Everywhere" theme triggered a flareup. I was going to try and get a shot of me dumping water over my head, but it didn't go as well as I'd planned. I filled a gallon jug with water and went outside. I held my camera at arm's length and went to lift the jug. And I couldn't. The gallon of water was too heavy for me to lift easily.

So I had to dump half of it out before I could attempt to dump it on my head. I didn't get the shot I wanted. What I did get was absolutely drenched. Soaking wet. And that's where the problems started. No, no, the water didn't hurt me- nothing as silly as that. But, it was chilly outside because we've had a very weird Spring so far. And with the chill in the air and the wind blowing (we've gone from having a heat index to a wind chill to a heat index again), the cold settled into my muscles. I took a few photos while outside, even tried dumping a bottle of water on my head (shaking it out over my head). It was cloudy, so my camera wasn't firing as quickly as I'd hoped. The photos look a lot like this one:




My end result turned out to be a macro of a large droplet of water falling off the end of a soaking wet strand of hair. My face was out of focus in the background, but my eye is in focus, and upside-down, in the droplet.




As artistically rewarding as the photo turned out, I was- within an hour- fully into an all-over body aching flareup. I wanted to smack myself in the head for doing it to myself, but it hurt to lift my arm. I've had a lingering aching since the day I took those photos. The mornings are terrible for me, so much so that I keep sleeping in. Of course, it doesn't help that I go to bed and then lay awake for an hour before finally dropping off. Today dawned as an itchy and sore skin day and by 10 AM, I took two Vicodin. And you all know how much I hate taking pain meds in the daytime. I've been under some extra stress in the last couple weeks too. I'm so over the stress now. Really, I am. There's no cure for the stress right now, but I'm so looking forward to the ren faire. I've talked up the faire to so many people- both online and in real life- that I think I should get a commission on the tickets sold.

Janesville Renaissance Faire is March 19th and 20th. Bristol's 25th season starts July 7th and runs through Labor Day (Labor Day is their closing day). You should come out. You'd enjoy it. At Bristol, if you want to find me, you know where I'll be.

Oh, you don't? Well, click here for a hint...

I have a follow-up appointment on Wednesday.

I've been keeping track of how often I take a pill and a half of the muscle relaxer (which is what the good doctor has told me I can do if I feel like I need it). Its been more often than not.

I'm ever-so-tired of feeling like I've been thrown from a horse, then trampled by the Budweiser Clydesdale team on their way to a commercial shoot. I try not to complain much in real life because if I do, I'm met with either being ignored or eye-rolling. Of course, that's a lot better than what I've had to deal with since last night.

I'm not going to say which family member has said this- but I will say it was not the disabled guy. He's the one who ignores it for the most part. He also says- in response to any complaint- "I know, you tell me you feel like shit all the time. I get it."

No, this was someone else. I was lamenting that I was tired of feeling like hell. I said, "I'd like to take the dogs out or go to the store, or hell, even walk up the stairs without feeling like I'd just crossed a goddamn desert."

And you know what I mean, right? You get that I mean worn out, exhausted. In pain and drained of any kind of energy or drive. You get that. No, what I've had to hear since I made that analogy is constant mocking.

I sighed while in the kitchen. "Oh, come on. Its like standing in the desert, you're not walking across it."

I was putting on my boots to leave the house and paused because the weather came on TV. "Jeez, you're only putting your boots on in the desert, you're not walking across it."

This afternoon, after doing laundry and going to the grocery store, I started to go upstairs. I stopped at the bottom to grab hold of the railing and take a deep breath before I tackled the stairs. "You can do it! You're only walking up the stairs to the desert, not crossing it!"

Those are just the ones I can remember. There are a lot more. And I'm tired of it. And I've voiced the fact that I'm tired of it. I repeated that I said I don't want to feel as if I've walked across a desert at the end of the day.

I'm tired. Worn completely out. I used to feel like this after working all day. Working, not sitting at a desk. When I was a kid, I used to go to the horse stables on the Army base and offer to trade work for horse-riding time. I did anything- I cleaned stalls and paddocks, I painted barns, I cleaned tack, I hauled feed buckets and hay. And if a horse owner was kind enough, I got to ride. I would fall into bed at the end of the day- exhausted. But with a reason.

Here I am now, worn out and drained from doing laundry and going to the store. I don't keep track of how often I take the dogs out or how many times I go upstairs, but its more than a few.

I try not to complain too much on my Facebook profile, because I know how irritating it can be for others to constantly read whiny updates and I much prefer to be in the good graces of my friends there. As it is, they have to put up with my psychotic photography addiction, link-spamming of upcoming novels or even awesome radio shows.

Of all the people in my life though, its my online friends who care the most. Mostly, I think, because I don't see their eye-rolling and if they're taking something I said out of context and beating it to death, I'm not hearing it. Or... maybe, just maybe, they actually do care. I know I don't tell them enough, but I appreciate knowing they care.

Before I start rolling my eyes at the mushy crap I'm typing, I'm going to point out that you can Shake Hands with Danger through podcasts now. You have no excuse not to listen because you can listen any time.