*Dusts off blog, walks into cobweb, becomes a ninja*

This is a perfect post about chronic pain. I haven't been updating here since before my knee surgery because everyone who follows my blog is also on my Facebook and I didn't see the point in updating the blog with the same thing. My updates there were usually short and faire-related. (I know, you're as shocked as I am, I can tell). Plus, after two days of faire and three to four days of photo processing/uploading/etc, I was exhausted, both mentally and physically. And on two weeks, I didn't get any days off between because of "real life" and the whole "being a functioning adult" thing took time out of the photo processing time. I also didn't upload any faire photos to my Flickr, but I've finally started doing it and the progress thus far can be seen here. (I hope to finish up by this weekend). But I digress... let me try an update.

As most of you know, my knee recovery was a freakin' dream compared to the first one (which, for the record, was seven and a half years ago). Last time- I was in bed, on my back, with a catheter, a nerve block in my leg (with a button that gave me a dose straight into the surgical leg), and an IV. On the fourth day, I stood up and physical therapy began. My surgeon also said I'd benefit from in-house physical therapy and had me stay another ten days in the PT rehab wing (which was literally down the hall). I even had an IV dose of morphine one of those first four nights because I couldn't sleep through the pain. After my release from the hospital, I spent two weeks at my parents' fully handicapped-accessible house and I had outpatient physical therapy three times a week. And at five weeks, I had a manipulation under anesthesia (MUA- which is when they knock your ass out and bend your knee to break up adhesions, which are like scar tissue). THIS time, however...

I was on my feet within four hours of surgery. There was no catheter. No nerve block. I did have an IV, which they removed once I was on my feet, but they left the IV- uh, what is it? An adapter? They left the IV adapter in for whatever medial reasons they have for that (you know, in case there's an emergency and whatnot). On the fourth day, they sent me home. Oh, I didn't come home though, I still live in a house with one bathroom and that bathroom is upstairs. Since my parents are now frolicking on a farm with other parents their age, chasing rabbits and catching Frisbees in their mouths- wait, I may be mis-remembering what happens after people die... anyway, I stayed with my eldest child. We called it "The Dungeon" and this is the view.
That's horrifying! Along with a 47-inch TV, AppleTV, Netflix, a small kitchen, a private bathroom with a walk-in shower, and a plush set of furniture that was the right amount of plush with firmness so I could get up and sit down on my own. There are also two bedrooms, a game-room area (with a pool table that I did not use), and the area with that above view was all open, no clutter and no rugs- just flat flooring. It was fantastic. Also, this was my daytime nurse. He was very polite. I had seven and a half weeks to recover enough to make it to Bristol and if you're reading this, odds are that you know I made it (here's the link to my "19 Days of Faire" and it is all of my Bristol 365s together). I set a new goal to walk without my cane by closing weekend and I crushed that goal three weeks early. So, this total knee replacement was a complete opposite of the last one. I still have some discomfort and some swelling, but I'm already wearing jeans again (I couldn't wear jeans last time for MONTHS because they were too uncomfortable). I walk without a cane almost all of the time. (I still use one if I'm not sure how long/far I have to stand/walk). The problem with the pain now is that even though I KNOW that it isn't arthritis pain, my brain interprets the pain surrounding my knee as that kind of pain. The tissue surrounding my knee still aches and sometimes, it hurts severe enough to make me stop what I'm doing.

I keep forgetting that any pain I'm having from the surgery isn't "normal". "Normal" in the sense that everything I feel is exacerbated by my screwed up nerve endings that keep dialing things up to eleven. I feel like I've been complaining on Facebook more than usual about it, which in turn makes me feel bad because I don't like to endlessly whine about the pain.

The worst part of this is that the Disabled Guy doesn't think I'm in as much pain as I am. When I got out of bed last night, after three hours of staring at the ceiling, then the wall, then the other wall, the TV, then my phone, then covering my head with my pillow, turning music on, turning it off, covering and uncovering my feet... I asked if he remembered my first knee replacement, 7 1/2 years ago. He doesn't. He said it was "too long ago". I reminded him that the first TKR caused a year-long fibro episode that was so severe that even my doctor couldn't deny it anymore. I was diagnosed with fibro a year and three months after my first total knee replacement.
So, while this recovery has been leaps and bounds above and beyond anything I ever expected, I still have issues. I've only had a few flareups of fibro pain since the surgery (which was four months and ten days ago), but I'd really like the pain in the squishy human bits around my robot knee to stop. I can walk mostly normal (there's only a slight hitch in my giddy-up, but if I try to walk faster, I outright limp). I can wear real clothes again, just like a real human. I've got a faire this weekend (Stronghold Olde English Faire- photos here) and one next weekend (A Gathering of Rogues & Ruffians- photos here), so I'm going to have some awesome friend-therapy. Honestly, the best part of having my total knee replacement recovery during the Bristol season was how many people I love and adore who made sure I was okay and asked me how I was doing. It was an amazing feeling, to know that people who weren't created with my genes actually cared. (also- my kids were so awesome while I was recovering. Kat and Tyler letting me stay with them, Christine going out of her way to come visit, and Jason- who still lives at home- helped out on a day to day basis).

And, because I shared links to the others- here's the Janesville Faire photos (in May) and the Teslacon photos (which I have in November!).

These are things that happened today...

I had a long day. It got to the point where I could no longer wait... the lawn had to be mowed. It was 18 inches high in some areas. The chis would disappear for several seconds and then emerge on the other side, slightly confused and a little scared. Jasper would bound through it like a tiny,
derpy gazelle. So, I did it. I decided to mow the lawn. And these are some things that happened today.

My hair is long enough now that it can go into an actual all-up full-on ponytail.

I used the 110 SPF sunscreen that I got for this year's faire season.

Surprisingly, the lawnmower actually fired up. After six months of sitting in the shed, it turned over on a single pull.

The grass was so thick that the lawnmower stalled. A lot. I lost count at around twenty times. I couldn't go too slow, it would choke to death. I couldn't go too fast, because it would choke while not cutting anything.

When it stalled the second or third time, I couldn't get it to start again. I was sweating profusely. The sunscreen that boasted itself as "sweat-proof" and "won't run into your eyes" was sweating off my face and burning my eyes right out of their sockets. I took off my sunglasses and actually walked from the middle of my backyard into my house with my eyes closed. I knew exactly where the steps were, where the loose boards in the deck were, and the door inside. That's when I decided to take a break.

I went back outside, wearing the O'Hare Towing baseball cap that I stole from the Disabled Guy (to help control the sweat pouring into my eyes, bring all the sunscreen with it).

I did a few more slow passes in the deep grass and out of the corner of my eye, I saw movement on the deck. But it wasn't anything like birds or a squirrel. It was the goddamn flock of dogs! Somehow, smartypants Gypsy got the door open and all the dogs came out onto the deck to see what I was doing. I got them back inside (there was very little shade out there on the deck, I don't like to do that to them).

I managed to mow the lawn, despite the intermittent stalling.

I discovered with the inside of a golf ball looks like. Oh, and I found almost a dozen golf balls in the tall grass. I only saw the inside of one of the golf balls.

I was actually able to turn off my photographer's brain after the first ten or fifteen minutes. Every time I saw something, I thought: "I should get my camera before I mow this..." But, dammit, the lawn needed mowing and art would have to wait.

After another stalling, I took another break and drank two 16.9 ounce bottles of water.

In less than ten minutes, three different people showed me that I was in their email (they posted screen caps on my Facebook). Earlier this week, I was informed via email that I won the "Action Photo of the Week" for ThinkGeek! I won a $100 gift code for their site and they used my Steampunk Wonder Woman T-shirt photo in their email newsletter.
(scroll to the bottom!). Having been outside most of the day, I hadn't checked my email associated with that newsletter and didn't know it was out yet.

My lower back was getting a bit achy after the first hour, but I was expecting that, really.

While mowing the front yard, passing drivers stared at me like I was some crazy person. As if a fat chick wearing a neon yellow baseball cap and tattered jeans and mowing a lawn was a weird thing.

I was finally at the end of the mowing. There was about a six foot by... oh, four-ish feet rectangle of grass in the very back part of the yard. And the goddamned lawnmower stalled again! AGAIN! And after four pulls on the start cord, I said: "Fuck this noise... I'm done! That's it!" I put the lawnmower away, locked up the shed, trudged inside, and drank two more bottles of water.

The baseball cap was almost entirely soaked with sweat. The very outer edge of the brim was still dry.

I got an awesome gift in the mail from an awesome lady named Tricia.

I sat here in my chair for almost an hour and a half without doing anything. Well, I drank more water and caught up on Facebook and so on.

I took the dogs out and fed them. Then I took a shower (finally) after 5 PM.

When I pulled my ponytail out, I found a stick in my hair. And some pine needles (there are pine trees in our yard).

When I got undressed for my shower, I found grass clippings, a few pine needles, and dandelion fuzz in my bra.

After my shower, I discovered some new tan lines on my shoulders. "Sweat-proof" my ass.

I ate my dinner, took that photo of me wearing that awesome bracelet, and as I sat down to start typing, one of my favorite movies came on cable. (it's called The Baytown Outlaws and it's stupid action with a mix of humor. I love it). And now, at the end of this typing and link-pasting, my muscles are only mildly achy. Like you'd expect for spending hours mowing the prairie in the backyard. My feet are sore too, because I wore my old, worn-out boots to mow.

But, you know what didn't happen today?

My knee didn't hurt. Not at all. Still doesn't.

That's what I call a good day.

I think I finally figured out this fake insomnia thing!

That's right, I'm typing this blog at approximately 4 AM on a Sunday morning because when I went to bed last night, I didn't go to sleep. Instead, I just existed in that bed, feeling the pain throb in the bottom of my foot in the area where I had two separate shots to take the pain away. I also felt my muscles vibrating with pain. And I had two pretty good days in a row (up till 1 AM, when I decided I had enough of just staring at the ceiling, the wall, the other wall, the ceiling again...). I was trying not to get too hopeful till there were some REAL results with this new medicine (the generic Cymbalta), so I wasn't going to say anything... but no... on Friday evening, I said out loud to the Disabled Guy: "You know, I felt pretty good today. And walking in the grocery store wasn't terrible."

Stupid, I know. I should have kept my flappin' face shut till I had some decent results to present.

Oh, by the way, we're on day 10 with no sunlight. Nothing but clouds. I know this because I took a photo of the sunshine and posted it on Facebook because a friend mentioned the "day-moon is on fire" in his status. I'm sure all clouds and no sunlight is probably making Pahz something-something.

Anyway, back to the title!

I think I might have this figured out! Okay, so you know how when you go to shut down your computer, but it doesn't shut down? Instead, that one screen comes up and says: "Do not unplug your computer" because its loading updates? THAT is what I'm obviously doing! Because I'll be wide awake, completely unable to "shut down" and absolutely useless to anything else. In this mode, I can't drive anywhere, I can't focus to read a book, and I can barely watch TV. And then, without warning- BAM! I'm so tired I can barely make it to my room to fall face-down on the bed. JUST LIKE A COMPUTER!

I knew that becoming a cyborg would be weird, but I didn't realize I'd have to do all these updates during my shut-down period. No wonder I keep rebooting in the middle of the day.

I can't let this disease win...

Firstly, let me say that the new drug still seems to be working well. I've had a few rough days now and then, but those days were also pretty bad weather days (high humidity, thunderstorms rolling through, and in one case, we were actually being rained on at faire). That said... let's go to the title.

Last Sunday, I was in a full-blown flareup. Every muscle ached, moving caused me great pain, and walking up and down the hill at Bristol was damn near impossible. Damn near. Every weekend this season, my left foot swells up along the bottom (the outside edge down to and including the heel). I've tried all manner of insoles (I have doctor-given orthodics and for some reason, they're causing bruises on the arches of my feet and I've had them for five years now). I've been doing one day with shoe inserts and the second day with only the soft double-foam inserts.

Now, I try to do things during flareups. Nothing serious- I'm not going to mow the lawn or participate in a power-lifting competition- but you know, just stuff. Mostly it's photography stuff- like taking macro shots of flowers and raindrops or even going to faire.  There is no way I will let this disease keep me from a faire day. I get asked by folks now and then why I do it. Why do I cause further pain to myself? (it's usually said in a "you're so strong" capacity, not in a "what the fuck is wrong with you, lady" way).

If I don't get up, if I don't go to faire, if I don't take my photos, or put on garb, or do any one of the things I do during a flareup, then the fibro wins. And I don't want the fibro to win. Fibro sucks sweaty donkey balls and I can't let something that sucks sweaty donkey balls have what little joy I find in life.

And honestly, take a look at these photos and tell me- why do I do what I do? Because I fucking love to do it. I love these people and I love what they do and I want to be a part of their world. And they care, because they're awesome people. Getting through a flareup, surrounded by people who actually care and who also make you forget how stupid this disease is for even a minute- well, goddammit, they're worth it. They make the pain I'm in at the end of the day worth it. I want to be with these people, I want to share their amazing talents with the world, and I want to be needed.

However...

There are plenty of photographers at the faire- official and unofficial. The faire doesn't need me to take these photos and hell, even if I didn't show up, the faire would go on and these moments would still happen. But if I sit here at home, whining and lamenting how much pain I'm in, instead of walking around the faire and capturing moments, well, that might as well be the end of me. I don't want to give up. I may end up in pain, I may cause myself extra pain, and my left foot might look like a flipper for three straight days... but goddammit, I am not letting this stupid disease take one more thing from me. It has taken enough! NOT ANY MORE! (that's a silly joke with my kids- "not any more").

And, with that I say good night and I'll see you at faire. Enjoy the tsunami of ren faire photos.

A Realization!

Let me get this out of the way first: Day 50 of this goddamn flareup. I've had varying days of pain degrees and today (Saturday, even though this is now Sunday) was pretty bad (because I'm calling early-morning Sunday "Saturday" because I'm still awake). And now, onto "The Realization"...

I've joked before that I'm a superhero. People have often said to me: "What doesn't kill you, makes you stronger!" and my smartass reply to that has always been: "Then where's my cape, because I'm a fuckin' superhero by now."

On top of that obvious super-human strength I most obviously have by now, I also have the Wolverine-like ability for quick healing. Not the whole "push a bullet from my skull" power, of course, but I heal so quickly that my scars don't have time to catch up and often turn out ugly and snakelike. I healed so quickly from my knee replacement that the ligaments in the front area of my knee became so tight from scar tissue that they had to put me under general anesthesia to bend my knee and break it down. (the doctor's exact words were: "Just snap, crackle, and pop, and we got you to [a] 90 [degree angle].")

But the other day, I had a realization. You see, I know some incredibly talented people through the renaissance faire. I know actors who are so beautiful, they should be models. They're also so talented in their acting ability that when they step out of those oh-so-familiar ren faire roles, they move me to tears. And I know jousters, who do an amazing show with full-impact, full-plate jousting... and they're my age! And, I know a trio of acrobats, known collectively as "Barely Balanced". And they uploaded a video of their rehearsal the other day... let's watch...




The Disabled Guy was walking by just before Cameron climbed up to his position and made me back it up so he could see it from the beginning. He stammered: "Is he- that girl- what's this called?"  I told him they were called Barely Balanced and they're the daredevil acrobat troupe that I know from faire. He continued to watch in awe as the video went on. I said: "You see that? You see what they're doing? Yeah, and then there's me- I have trouble getting up off the sofa if I sit too long. I'm like an upturned turtle. Meanwhile, Jimmy is holding everybody up with his feet, Margret is holding Cameron up with her thighs and they're juggling..."

And that's when I realized it.

I'm not a superhero.

No.

I'm a supervillain.

That's right, I don't wear a mask and cape of truth and justice. I'm at the other end of the spectrum. Just like Pulp Fiction and Die Hard were in "Unbreakable". He said: "They call me Mister Glass!" and spoiler alert, he wasn't actually glass.

But here I am, upturned like a turtle, struggling to get to an upright position so I can struggle and pull myself to my feet before I limp to the other room. And here we have someone like Margret, who juggles fire while having her body balanced and compressed between two men's dirty man-feets. She balances herself using only the muscles in her amazing abs, while Cameron juggles razor-sharp blades over her while he stands on her shins and Jimmy is supporting them both, with his giant Jimmy-feets.

And I've eaten a single banana for breakfast because the very act of pouring cereal in a bowl, adding milk, and then eating it with a spoon is too exhausting to even fathom. If I have to sit around my house, I prefer my desk chair because I can get out of it the easiest (because it has arms that I can use for support). And then we have Margret...

So, all that's left is choosing my supervillain name. Something that tells the world who I am and what my supervillain-y power is and why they should fear me.

"Muscle Spasm"... no, that's more of a sidekick's name.

"Charlie Horse"... jeez, not that either. That's a sidekick's pet's name.

"The Blub"... no way. That's the comedy relief character.

"Dead Weight"... that's a little better.

"Gravitational Pull"... there you go. That's the one.

Gravitational Pull- I create my own orbit. Call me "Grav" for short.

No, don't call me "for short", I'm already short enough.

GRAVITATIONAL PULL [Pull.... pull... pull...] (that's echoing, just go with it)- the very name strikes fear and uncertainty into the hearts of good, law-abiding, cereal-eating citizens all around the world.

FEAR ME!!

*slowly flails arms and legs like an upturned turtle*

FEEEEAAAARRR MEEEEEE!!!

Today's topic is brought to you by Fibro and the number 12...

Twelve days. On Monday, I felt a little bit better and decided I should make myself a real dinner. Spaghetti sauce is fairly easy and once I start the sauce at around 2 PM, I don't have to do anything but occasionally stir it till I'm ready to make pasta. As I was browning the meat I had taken out for it, it smelled funny. Not funny-ha-ha, though. So, I made sauce without the meat and that was dinner.

However, after loading the dishwasher and cooking pasta, I was wiped out again.

"You Had Plans? (laughable life with Fibro)"
~My life in novelization.

"Sleep? You don't need Sleep!"
~The sequel.

"You Feel Good- RELAPSE!"
~To round out the trilogy.

"You Wanted to Clean the Kitchen But Only Loaded the Dishwasher"
~A Novella.

"Wake Up! How to Set Multiple Alarms (and what to do if you sleep through them)" 
~a how-to book.

"Vacuum? Just Don't Look At the Floor!"
~A YouTube instructional video.

"This Medicine Helps? (True Stories of Chronic Dry Mouth)"
~Informative Pamphlet.

"Work? You Don't Have Enough Vicodin for THAT!"
~self-help article in a women's magazine.

"Sit Down to Watch a Movie? Now You have to Stand Up"
~the exercise video.

"My Aunt Has That and She Tried This..." 
~fantasy literature.

"If You Just Exercised More..."
~Part two in the fantasy series.

"I tried to walk into the kitchen and instead sat back down to cry."
~The text message.

"You Thought it was Over (till You Woke Up)"
~the hit single.

"Also- Have Some Peripheral Medical Issues Too!"
~the Novel written under a pseudonym.
(Working title: "Why are My Hands so Cold and Numb?")

"Ow, That Still Fucking Hurts"
~The reboot of the movie series.

The irony of this is that I was too fatigued to finish it in one sitting...

I was looking something up related to fibro (pain in the hands, feet, and other "hot spots") and got stuck in an article loop of clicking "related content" on different sites and found this one (on WebMD). Which made me laugh for some reason.

From the article:

"With fibromyalgia, you may feel: 
♦ Fatigue on arising in the morning 
♦ Fatigue after mild activity such as grocery shopping or cooking dinner 
♦ Too fatigued to start a project such as folding clothes or ironing 
♦ Too fatigued to exercise 
♦ More fatigued after exercise 
♦ Too fatigued for sex 
♦ Too fatigued to function adequately at work" 


So, what WebMD is telling us- most fibro sufferers are TOO FATIGUED TO LIVE. Of course, if we believe the old Coca~Cola ads, extra caffeine is all we need to "relieve fatigue". But, caffeine can exacerbate our fibro symptoms... so we're too fatigued to do anything, but if we drink more caffeine, we're likely to increase our pain levels, causing us to be unable to do those wonderful projects...

Also- I don't classify "folding clothes or ironing" as a "project". A "project" implies that it might be fun or that it involves work and therefore a paycheck. Unless you're a maid or work in the dry cleaning industry, folding and ironing clothes isn't a project. I'd call it a "task" or "something I'm not doing". Yeah, I don't fold laundry. It sort of piles up in the clean basket till I wear it again. And "ironing"- I call that "fifteen minutes in the dryer".

But this list... I was fatigued after reading it. I think I reached the point where "fatigue" almost has no meaning anymore. I'm not "tired". I long for tired. "Tired" means you've had a good, solid day of work and that you're worn out and will sleep well because of it. "Fatigue" means no matter how much sleep you get, you have no energy to do anything. Exhausted, but awake. Awake, wildly awake with a forgetful brain that won't stop racing with thoughts about everything from: "Did I turn on the dishwasher after I managed to load it?" to "I like that Cumberbatch fella too..."

In my clicking, I also found this article about wrist pain. And the part that got me was this: "You may feel aching, burning, numbness, or tingling in your palm, wrist, thumb, or fingers. The thumb muscle can become weak, making it difficult to grasp things. Pain may extend up to your elbow." The thumb muscle can become weak, making it difficult to grasp things.

Or, you know, like in my case- I can pick something up and seconds later, send it skittering across the table or counter-top because I've lost my grip on it. And that doesn't really hurt, not in the sense of the usual pain, anyway. Yesterday, I spent all day picking things up, dropping them, picking them up again, and then accidentally flinging them when my hand decided to lose its grip on them. Yesterday, my wrists were sore like I'd sprained them, but I hadn't. And this morning, I woke up and my wrists were fine. Well, not fine, but they weren't hurting in the middle of the tiny bones like yesterday.

As for the title of this blog post- I WAS too fatigued to finish this post when I started it this morning. And here I am, twelve hours later, finishing it up... why twelve hours?

Because I completely blanked on the fact that I'd started it. I forgot it was here and in need of finishing. So, while I'm absolutely fatigued and can't seem to keep a grasp on anything- I also forget when things need to be fini

Each flare-up is like a new adventure!

An adventure!? 

That sounds fun!! 

Can I come along?! 

Wow, you always have the most fun EVER! An adventure! Whew! I wish I was you, crazy lady. 

Today's flareup is a continuation of something that's been going on for about three days now. This is an all-over-muscle-stiffness flareup. I feel as though my muscles are being pulled tight to the point of burning. I can't turn my head to the side very well, which comes in super-handy while driving. Everything hurts. My clothes hurt my skin. My cross-body purse strap hurt my shoulder, my cleavage and my back. . Walking hurt. Pushing the cart (trolley) at the grocery store hurt. Sunglasses on my goddamn face hurt.

Picking up a 16.9 ounce water bottle hurt. Walking up the stairs- which I have to do if I want to go to the loo, yes, I said "loo", deal with it- took so much energy I had to rest at the top before I continued the three whole steps to the bathroom. (THERE! HAPPY NOW, AMERICAN DEVIL!)

I sat on the sofa for less than a half hour and when I tried to get up, it took three tries to beat gravity. Three tries. I should be glad I got up on that third try. After the third attempt, the judges automatically disqualify you from the event.

Wow. That doesn't sound much like an adventure. That sounds pretty miserable. I- I don't think I want to come along. 

I didn't think you would. That's okay. I wouldn't wish this on my worst enemy. And that says a lot, because being a superhero the way I am, I have a few extremely sinister enemies. Archenemies, would be the right word. Supervillains. Don't worry about me, though. I'll be fine as long as they don't have an meteorites from Planet Fibromyalgiaaan. Our speaking language is a lot like English, except we shout it angrily and usually high-pitched. Shrieking. That's how we speak. We shriek. Its just an odd coincidence that your language of "English" sounds the same as ours from the planetary system: "Chronicosius Illnesseans".

What? You did know I wasn't human, right? I mean, no human could put up with this bullshit. Of course I'm a super-powered alien from a different planetary system.

I leave you with a photo.  I was doing my 365 and Gypsy came outside with me. And she decided to be adorable and I decided to take a photo. Enjoy.

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. 

My son asked me something that made me almost cry...

Jason asked: "How do you prevent fibromyalgia?" This discussion was brought on by the three-plus days I've been in a flareup. I was going to come over and whine on the blog last night, but, Kinky Boots was on cable (and on one of the high-def channels). Sure, I own the DVD, but I enjoy the serendipitous capture of a favorite movie on cable. (I even said on my Facebook status that instead of blog-whining, I was going to watch Kinky Boots and eat ice cream).

So, Jason and I discussed some of my physical issues. I have arthritis and tendinitis as well. We talked about how he's in better shape than I was at his age (I was actually pregnant with him when I was his age- I should probably mention that he's twenty-one years old). We talked about how staying active is probably the best way to stave off any "old-person-ailment". They don't know if fibro is genetic or what, but if people in your family have it, that may increase your chances of coming down with it. But then, that's the case with every disease and disorder, isn't it?

I have tendinitis in my feet and in both shoulders. The foot thing, well, there's not much that can be done. Bad feet run in my family (my dad's side). Interestingly enough, my foot problems started when I was pregnant with Jason. The shoulder problem- he's probably going to avoid that just because he's in such good shape. He has done martial arts since he was eight years old till he was around nineteen. That's when his work and school schedule kept him from being able to attend the classes. That's also when he got a membership to the Y and started working out there. (you see, the Y is open from 6 AM to 9 PM and the academy where he trained in martial arts only had classes in the afternoon).

So, we had a pretty good discussion on different things related to my pain issues. One of the big things is that he won't have to go through three pregnancies like I did. Pregnancy can seriously screw with your body. Not just weight gain and stretch marks. Plus, I have a thyroid disorder that probably isn't helping things.

And, just for fun... here are some random photos of my kids. (there's more blog after the photos)











So, now that we have that out of the way, let's whine a bit, shall we? I don't recall how this one started, but I think it came on slowly over the course of a day. I muscled my way through it though, because you do what you gotta do when you can't take the pain meds. The next morning was one of those harsh gravity days. I felt as though I was being pulled down from the center of gravity in my body. Everything ached, all over. It was that horse-thrown feeling. Blaze just up and threw me, dragged me for a while, then kicked me square in the middle of my body and left me sobbing in a cold and muddy ditch. He ran back to the stables, fed himself, locked everything up and acted casual when the law came a-lookin' for him.

That description may or may not be partly or completely fictionalized. The tip-off should be that I don't own a horse, named Blaze or otherwise.

I learned during this flareup that the sofa is not a comfortable place for me. Oh, it is plenty comfy while I'm sprawled out there, covered in Chis (go back and read that out loud). But when I start to get up, that's when reality slaps me in the face and then points and laughs at me while I flail helplessly like an upturned turtle. Everything hurts worse when I try to move after starfishing on the sofa.

The other day, I was doing my 365 self-portrait. And the pain was bad enough that I was taking Vicodin on a six hour cycle (I did every day but Thursday, because I had to drive to Rockford for a photo gig). On Wednesday, I decided I'd go for the "playful fun" look in my 365 and tried to nail it... and at one point, the pain was so bad and trying to hold a pose was so difficult that I paused to take a breath. And when I did, my arm hit the remote button for my camera and since it was still focused, it fired a photo. I decided "fuck it, I'm using it" and I used it for my 365. So, this is what I look like in pain.


On top of the usual pain I've been slogging my way through, I'm swelling. Not everywhere, mostly just my legs and today my hands feel a bit puffed up. They look normal, so that swollen feeling may just be the pain and stiffness.

I take 90 milligrams of Hydrochlorothiazide a day. If I don't, I turn into that gross chick in the Willy Wonka movie who chews gum (she's gross from the fact she chewed gum for over a month, not because she ballooned up). And for the most part, I don't swell a lot. Just a little, most days. And some days, a lot. How much? Well, this evening, I took some crappy cell phone photos of my leg. Why just one leg? Because the way I was sitting on my bed, I could only get one leg up there and lean to get the best light possible. If I had both legs on the bed, I'd have leaned right off the bed and then I would have had a totally different story to tell you.

I pressed my finger against my ankle to show you the swelling.



When I wear my shoes (which are actually boots, Dr Martens brand hiking boots), the swelling is pressed out of my feet and ankles. It stops at the bottom of my calf where the boot starts. Which looks hilarious when I take off my boots. The comedian Maria Bamford has a bit where she's talking about what's trendy. She says she expects that soon, the trend will be to be "MORBIDLY OBESE with tiny little Tweety Bird ankles!" and that's what it looks like when I swell while wearing my boots.

Here's a view from the other side. That dent under my ankle is from my slippers.




Overall, the swelling doesn't usually hurt. Sometimes, it makes my ankle hurt like I sprained it, but only when I stand on it. And some days, the swelling will be shockingly huge (I wouldn't even call this "shocking", just "a lot") and on those shocking days, my skin aches from the feeling of being stretched. Today, though, the swelling isn't making my skin hurt. What will happen is that when I go to bed and elevate my feet, the swelling will start to recede and with that, my skin will itch. Like a Riverdancer with restless leg syndrome.

My hands have been aching for days now. So any plans that I had to reclaim the heavyweight boxing title are out. There's no way I could win a fight right now. Maybe a street fight, because at this point, I could paint myself green and pass myself off as the Incredible Hulk. Well, more like Credible Hulk and I'd overpower my foes with the amazing strength of logic and back that up with sources.

So, here we are, listening to- or reading about- me complaining about this disease. I wouldn't wish this on anyone. Not even my worst enemy. Well, maybe my worst enemy, because then I know I'd have a fair chance at winning a fight. In the midst of all this pain and hurt, a few good things have happened this week. I discovered that some awesome people- people who I find to be amazing and wonderful and I feel grateful they spend any time with me- actually like me and my work. You know how we're our own worst critics, well, I have some real live humans that I actually know in real life who take that Worst Critic out back and kick the shit out of her and then bury her in a shallow hole and cover it with leaves so no one will find it till after the first big rainstorm of the season. I almost cried in a conversation- but I held it together. I was totally cool and not at all geeking out all over the place.

And the other good thing? One of my photos- with my photo credit- might be in two local newspapers. So, yay for that.

Yay for awesome friends and yay for local newspapers. And yay for favorite movies and yay for ice cream. Yay for Amanda Palmer music and for Steam Powered Giraffe and yay for Mandy Patinkin.

Yay!