This blog post is brought to you by...

FAKE INSOMNIA! WHOOO-HOOOOOO!!

Fake because it isn't actual insomnia. Real insomnia is a serious pain in the ass and I do not have that problem. What I have is breakthrough pain or- as I say it on Facebook- "failed pain meds". These are the nights when my pain meds don't make me sleepy. The pain is too much for all the pain medication and muscle relaxers. And, because I follow my doctor's orders- I don't take extra. So, every once in a while, I end up staying up till the wee hours of the morning before exhaustion wins.

So, Fake Insomnia.

Let's move on, shall we? Good...

It seems there was an awesome article recently, informing all of us that "Fibromyalgia Solved: A Pathology, not in the Mind". It was a pretty good article. It tells us that this isn't a fake disease and that we're not totally mental. It even describes: "One result is a build-up of lactic acid in muscle and deeper tissue affecting the muscular system and causes pain that can seem to ‘travel’ from areas of the body one day to the next and cause fatigue, commonly reported from victims of fibromyalgia."

LACTIC ACID. How many times have I described my "normal everyday pain" as feeling like I worked out too hard? I even used those very words- LACTIC ACID! That's what your body releases to help you physically cope with stress- be it mental stress or physical stress. You would know it as that painful burning feeling you get when you push it TO THE MAX! Or CRANK IT UP! And the ever-popular NO PAIN, NO GAIN!! *roars like the Incredible Hulk* YEAH! LET'S DO THIS!!

No... no... wait. Let's not do that... that hurts. Whew... someone could have really gotten hurt up there in that paragraph. I hope you were lifting with your legs and not your back.

My fake insomnia tonight was caused by "bone crunching pain". I was curled up in bed, in my usual naked-under-fleece-blankets state (let's not forget the ever-sexy wrist braces I wear to bed. Because that is a hot look, I tell you what) and no matter how still I tried to stay, I couldn't reach a point of sleep. I felt as though my bones were being pressed together at the joints. In my shoulders/collar bones mostly.

I've been having a few-days-long flareup and have been meaning to write this blog post for those few days but I've also been busy. Teslacon is coming up next week and I've been using my spare energy to finish sewing the few things I need to sew. I'm not official at Teslacon, but since I know almost everyone there, I'm in my unofficial status of photographer. Meaning I will photograph the living daylights out of my friends and when they're not being fabulous, I'll photograph absolute strangers.

And yesterday- Wait... I mean Thursday. On Thursday, I decided to save my energy because my son asked me to take some photos for him. Well, of course I did. And for that half hour, I got to ignore my pain. And yes, you are right in that heavily-sighed assumption... I'm about to share the photos with you here.  But I kind of have to- they're pretty awesome photos. I'm quite proud of them. When I have to make up a print portfolio, some of these are definitely going in that book.

My 365days self-portrait for Thursday. Myself reflected in my son's helmet visor.










This one is my favorite from this quick shoot.



The clouds and sky look pretty cool in his visor.





He made this one his profile photo on Facebook.



I also stopped on the way home and took a few sunset shots from my usual spot in a parking lot of a school on the edge of town.











Next week, I will have three awesome days to forget about my pain. I'll be garbed up, wearing a camera, and taking photos of those wonderful people doing awesome stuff. And then I'll share it with all of the Internet.

Because that's what I do. And I refuse to let fibrofuckingmyalgia win this fight.

We're coming up on our fifth weekend of faire...

I've been meaning to update this blog for the last four weeks. But I've been so bloody busy! Why's that? Because I've been made "official". I'm now one of the faire photographers (there's a team of us). Basically, I'm doing everything I've always done- taking photos of practically everything, including the jousts- but now I get let into the loop on special events and now I can say: "I'm working here!" and mean it.

But, let's us get to the important fibro stuff... After opening weekend- which was an experiment in HELL for pain- I didn't have a huge flareup of pain. In fact, it wasn't even the pain that bothered me. It was the fatigue. The exhaustion just kicked me in the side of the head and wrestled me to the floor. I was so tired that I declared every day a nap day. The experiment in hell for pain was in my feet. I wore the wrong kind of socks, which caused me all sorts of discomfort. "Wrong kind of socks?" you ask. Yes. I wore some that were supposed to help with various foot issues. The problem is, they have a lot of Spandex in them.

These socks, actually. (mine are black and pink). And they're good socks. I'm wearing a pair right now with my Doc Martens hiking boots. But on a day that was 90+ degrees with high humidity, they were the worst thing ever to be stuck wearing for 14 hours.

And now that we're going on our fifth weekend of faire, I've learned a few things... one, wear good socks. As close to 100% cotton you can get. Two, even if I'm in pain from wearing leather shoes and walking all weekend, I still need to force myself to wear shoes at home on Monday. Even if I'm not going anywhere. Last year, I'd spend all of Monday and most of Tuesday wearing slippers and whining about how much my feet hurt. This time, I get up, drag myself around- whining as much as possible, of course- and I put on my hiking boots (I have shoes that I wear specifically for the ren faire, because they look almost period-correct... ALMOST). And I recover much faster.

I still whine as much as I can, of course, because goddammit, I have a chronic pain disease.

Now, that's not to say I haven't had a few bad days. I always have those. The days when even my clothing hurts my body. I hate that feeling- when I put on otherwise comfortable clothes only to have the fabric feel like hot sandpaper or that the pressure of the fabric against my skin feels like a painful bruise.

 In fact, I schlepped my ass around the faire all day on Sunday in the throes of a flareup. But, I took Vicodin every six hours and I split my three muscle relaxers a day evenly instead of taking one in the morning and two in the evening. That seems to help. (and my doctor said it was okay to do so). I also sit down as much as possible, because I wouldn't be me if I wasn't putting my butt down on a flat surface on a regular basis.

Now, to end this on a happy note, here are a few of my 365s from the faire.


Opening day was so hot that at around 130 PM, I had to loosen the laces on my bodice. And around 4 PM, I had to take it off entirely. I hate walking around without a bodice at faire, it feels wrong, but hey, when you reach that point, you gotta do what you gotta do.

This is "Don Eduardo de Valencia" (I call him Vince, because that's how I met him last year).



Here I am with Kyle ("the one with the eyes"), and Duchess. It was her birthday! And we're at the end of the day, near the gates.



It has taken me three years to get this shot. "Lady Gwendolyn" (Tricia) is sneaky and always seemed to disappear before I could get her in my 365. She makes horse tack. Age of Equus is what she calls her leather work.



This was taken last Sunday. I'm with the "Lord Mayor of Bristol" and one of the Bristol Buskin Frolic guys (I don't know his character name!) and together, they call themselves "The History Bluffs". We did an impromptu photo shoot after I shot the historical costume contest. And then I had them be in my 365 with me (Duchess- from the other photo- was my human tripod. She's another Bristol photographer). This would be the day that I muscled through a flareup all day.



Do you see a theme with those photos? I mean, aside from my silly hat (hey, I made that hat! Second hat I ever tried to make).

I'm smiling. A real and full smile. (even with Vince, where I'm so exhausted I wanted to fall down).

No matter how terrible I feel, I always smile at Bristol.

Platitudes are nothing like Platypus. Don't be fooled!

"What doesn't kill you..."

"[your version of "God"] doesn't give you more than you can handle..."

"You're such a strong person..."

I really like platypuses. Platypi. That's the best of the platypus- because you get pie too!

I bitch about the pain a lot in this blog. I mean, that's what I started it for- so others out there would know they aren't alone. After searching and searching for medical facts and finding TONS of blogs and not so many articles, I realized that most of those blogs were trying to hide themselves in work clothes. "I have fibro, I'm not a doctor, but I copy/pasted this from WEBMD and I hope it helps..." And there is a place for blogs like that, because I did actually find links to legit medical sites where I was able to gather my information.

But, there were very few "This is happening to me, it might be happening to you, and it sucks. It sucks so hard that you'd think it was getting paid for sucking. Goddamn hooker of a disease" blogs. And very, very few (or not any, actually) that used humor. I'm no comedian, but I like to cushion bullshit with humor. Because this disease is such bullshit. Stupid and annoying and fickle- like that twelve year old with ADHD who didn't get her midday meds and now she's hot-glued flower petals to the cat and keeps screaming: "ART! I MADE ART!" at the windows in the house. And then we have to say: "Caitlin, honey, the cat's name isn't 'Art', it's Mister Fluffykins McCutesyface."  Also, platypuses are awesome.

I bitch a lot about the pain and the aching and the itchy skin and the total exhaustion. A lot. But this is my blog, not yours, so stop trying to rearrange the furniture! I like the sofa where it is, goddammit. But I realized that I never bitched about something that goes along with the pain. Weakness.

I don't mean the weakness that makes you cry and then people pet you on the head and hope you don't wipe your nose on their sleeve while you cling to them and sob. But that's totally what you're doing. I mean physical weakness.

I've compared this aching thing to a post-workout pain, then recanted and said, "Nuh-uh, this shit is totes diff and whatevs." (I'm paraphrasing). But that next-day-I-tried-to-be-Arnold-because-a-girl-was-there pain? It feels somewhat good and you can still function. And while it hurts to lift that Diet Coke can to drink it (why you'd drink Diet Coke is totally your thing, I don't judge), you can still do it. You can lift that can, pick up a stack of dinner plates, pull open a door.

So, not only are the muscles burning in agony and feeling like they're being pulled off your bones, you're weak. You're a delicate flower and you can't lift up that Diet Coke can without spilling half of it. And that shit will eat through you clothes faster than the "Aliens" alien's acid blood will tear through your pretty face. Weakness. I can't lift anything much heavier than my camera (and when that gets to heavy for me to lift, I may as well be dead) when I'm in pain. And I don't mean the weakness from: "OW! THIS HURTS! I WILL SET THIS DOWN!" like you get from back pain. There's a special place in hell for back pain. Its really close to the knee pain hell. That's not weakness, that's common motherfucking sense. "It hurts, don't lift that day bed."

This is like muscle failure weakness. I grasp a door handle and my hand is too weak to keep my grip. I pick up that Diet Coke can to throw it as far from me as I can, but it slips through my fingers because I don't have the strength to grip it and now it's ruined my favorite Docs. Some days, my muscles feel so weak that I can't grasp the prescription bottle to dig out the pain meds I need. And it isn't just my hands. There are some days I can barely walk up the stairs. But I do, I pull myself along like a pathetic mountain climber whining about the lack of oxygen before passing out and being left for dead by the sherpa he hired.

"But wait, Lady Platypi," I can hear you say, "How do you know this is related to the fibro pain and not just, you know, you being a punk-ass bitch? I mean, do you even lift, bro?"

"Sit the hell down, Chauncy!" is what I say, because this will be on the test later and the final exam is like, 80% of your grade and I need you to focus, goddammit! Also, your name is Chauncy now. Get used to it.

No, this isn't just me being weaker in the sense that I'm no longer that spring chicken who shows off her gams to the fellas. I know this because on good days, I can pick up a small car and throw it at the owner. "You left your Hot Wheels here, smartass!" and they shout back, "Who are you!? Put my car down!"

On good days, I've pushed a full-size Chevrolet Silverado out of the mud. I've opened doors and thrown Diet Coke cans. I'm like the female Hulk, but without the steroid abuse and CGI effects.

So, while you're sitting there and shouting at your monitor: "I LOVE YOUR MOTHERFUCKING BLOG, BUT WHY AM I SO WEAK MY KITTEN KICKED MY ASS?!", now you know. With the pain comes a weakness. And because this is fibrofuckingmyalgia, it doesn't happen every time. No, that would make too much sense. The weakness comes and goes like the pain and numbness and exhaustion.

And because you stuck it out with me through this, here's something pretty that I did this week. You earned it, my Precious Platypus.

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!

Fibro. Its what this blog is about.

I sure turned into a whiny little bitch over on Facebook lately. "Owww, my fibro huuuuurts..." or "Wahh, I miss my mom..." and there was probably some indecipherable whining sounds. Okay, I exaggerate for fun, but seriously, the last few days I have been a great big Captain Bringdown. And that's a superhero you don't want to rescue you.

"Well, mortal human, I have rescued you from the ravaging creature-beast," says Captain Bringdown, "But, from the injuries you sustained before I arrived, you will probably die in a few days."

I broke my own rule of only whining over here and not on Facebook. Luckily, my Twitter feed didn't get all whiny because I only ever use that to post links to my Etsy store.

Today's whiny blog is about the "side effects" I have to put up with. They're not actual side effects, but its a little of what I deal with when my fibro flares up on me. Sometimes, the fibro is so painful that it is all I can feel. Or everything hurts at the same level and everything in my body just hurts all the time. There are times when I can feel a flareup is on its way and I'll try to ease up on what I'm doing to cut it off at the pass. Nip it in the bud. Stop it in its tracks.

Or something.

So, I think I've stopped the flareup. Good, because that shit is annoying. But, I didn't really. Because sometimes, after a flareup- or even during one- I'll get another pain. I have arthritis. It runs in my family. Even if I grew up in a soft bouncy castle wrapped in soft fleece-lined bubble wrap, I'd still end up with arthritis. My Gramma Viola was riddled with it. Wheelchair bound in her late 40s. Her hands were misshapen by the arthritis in her hands. So, I'd hurt no matter what- somewhere (but not my knees. My knees are goddamn fantastic. Everyone should go cyborg. You know what they say- once you go 'borg, you don't go back. That's mostly because they throw away the human joint they've replaced with the cyborg joint- duh. Try and keep up!).

I started to feel terrible again yesterday. I did something I don't normally do. I got up from my desk and I sat down in the living room (where I was promptly smothered by Chihuahuas). And that seemed to help a little. I was able to chill out and relax a bit, so my muscles didn't hurt as much as they would have. That was also when I remembered that stress sucks and also causes flareups.

Today, I felt another bad day coming on- first thing in the morning. I took a single Vicodin at 6 AM- chased with a single muscle relaxer. And I went upstairs to lay down. I figured I'd watch a little TV, twitch from the impending pain, and then whine in a blog later. What I actually did was doze off for about 40 minutes and I woke up feeling better.

Till I moved.

I have tendinitis in my shoulder. Carpal tunnel in my wrists. Arthritis in my hands (not to the point of my Gramma Vi, though). And my tendinitis was starting to flareup. That traveled down the fibro-aching muscles in my arm and caused the carpal tunnel and arthritis to start screeching. My entire right arm is in varying degrees of pain. (don't worry, it isn't a heart attack. My dad is a heart patient and I am hyper-aware of the heart attack signs).

It feels like I described. That it travels down those fibro-aching muscles.

Now, I have no clue if that is actually what happens. My fibro causes my arthritis to hurt more or not. But it damn sure feels like it.

But, I do have good news...

I have two more ren faires this season. Next weekend, I have Stronghold- which I always have. (2010 and 2011 photos) The week after, I'm attending The Gathering of Rogues and Ruffians in New Glarus. So that's one more weekend of fun and photography. And we all know how much I love taking photos at the ren faire.

And because its what I do, here's a link to some cool macro shots I took of a bumble bee and dragonfly the other day. A Few Moments with a Bee and Dragonfly

Oh, my achin' body...

As good as I felt last week, imagine my surprise when I realized it was just temporary. Well, sort of...

Last Saturday, Ceej and I decided to stay after the faire for an event. It was a rally for a charitable organization called the RESCU Foundation. They help ren faire performers/merchants with medical expenses. We stayed after for this rally, which included entertainment, food, and an auction. (note to self- bring more money next time). We didn't really know what was going to happen there as this was our first time. And it was fun and really cool to see our faire friends in regular clothes and out of character (because some of them never break character!).

Saturday morning, shortly before the front gates opened, it started to rain. And by "rain" I mean "apocalyptic amounts of rain". It rained buckets for a good half hour or more. Ceej and I were soaked so badly it was as if we had jumped into a pool. I was literally soaked through three layers of garb down to my modern undergarments. (yeah, I can't get that into a character to not wear my undergarments). We eventually dried out (the heat and sun helped). My older daughter and her boyfriend came to faire that day as it was Kat's 22nd birthday.

So, we take all that rain, changing weather, the cold (I actually got chilled) and then the humid warmth. Add that to the fact we stayed after- which was surreal, to be at the faire in the dark- and we didn't get home till almost midnight. I had to wash our garb because mine was muddy at the bottom. As soon as it was out of the washer, I hung it up to dry and hit the bed.

I had about four hours of sleep. On Sunday, we had a two-hour class with Jane the Phoole on character development. It was fun and I learned some stuff. But, along with some talky-note-taking stuff, we had to do physical stuff. And it was a blast. We were in the Friends Garden and patrons were watching us. About halfway through the physical part, my hip started to ache. My right hip is a "hot spot". I don't know the actual meaning of "fibro hot spot" and my definition may be dead-on. Basically, when my hip starts to ache, that means I'm overdoing it and need to rest. It also means I'm going to hurt like a motherfucker the next day.

The class was fun and even the physical stuff- despite that ache- was hilarious and awesome. I got to giggling so much that I had to hit my asthma inhaler (the humidity and physical activity sort of made me wheezy). The class ended at 4 PM- I missed a joust! I survived, but I missed a joust!- and I had to dart up the hill to a stage for the Maxx and Mauldron Show. Oh, I've seen the show a dozen times (I think I've only missed it twice). But, I ran. Well, I ran like a woman in the renaissance, holding up my skirts. It was by no means a sprint, but I was moving a whole hell of a lot quicker than I usually do. I only missed five to ten minutes of the whole thing. (hey, I gotta support my friends. If you don't get the Maxx and Mauldron Show at your faire, but you get them as jousters, you should ask your faire about it).

Monday morning- that old feeling of being the Tinman after a rainstorm hit. I could barely move out of bed. All day was just awful. I felt awful. I hurt, my skin itched and my muscles burned. I'd have said, "oh, welcome back, my old nemesis..." except it isn't welcome here. I took it easy on Monday. I have a temporary online job and I spent most of the day catching up on the work that I missed on Saturday and Sunday (the powers that be are aware that I'm not online much on the weekends).

Here it is, Thursday morning as I type this. I still have some achy bits, but I'm feeling better. Not quite 630 AM and I'm not blindingly exhausted like I was all week. So it's a start. And it's a day early. Previously, I didn't feel quite right till Friday morning.

This weekend, I'll be at faire solo. Ceej left for college yesterday. She'll be back next weekend, but this weekend, with the freshman move-in, she has too much stuff to do. There's an itinerary.

On Saturday, during one of my rambling times with the jousters (they're so nice to me, putting up with my nonstop blathering, I appreciate that and I try not to go on for too long), I asked "Amadeo" if he'd like me to start a character fan page for him. (I'd asked him earlier in the season why he didn't have one and he said it was because he hadn't started one yet). He told me to go for it. We had a discussion about some of the details on Sunday. See, this was his last weekend before he had to go to another faire (his home faire, so he's actually going home). He claims- and I'll believe it when I see it- that he'll be online more there. Yeah, we'll see, Amadeo... we'll see.

Now that he's gone and there are two weeks left, I'll be spared my weekly blooding. A few weeks ago, Maxmillian accidentally got blood on my chemise. The following weekend, Amadeo did it on purpose. Then it became a game- a fun game where I got to hug handsome men in armor. So yeah, I'm not fighting it all that much. (although I'm sure all the laundering is killing my blouses).

I think I've finally caught up on what sleep I've lost. My hip stopped aching earlier in the week and now I'm just left with that residual tiredness. And that's not so bad, really. Mostly because to get that sore, I get to have two awesome days. I'll leave you with some photos... and Amadeo's final bloodings of me.

On Saturday- Kat was there, like I said. And she got to give Maxx his "favor" before the Joust to the Death. He asked her name (even though he knows it) and said, "is today your birthday?" She said it was (of course, he already knew it was) and told her meet him after the joust for the "best thirty seconds of her life". Also, one of the vendors we see at almost every joust gave her a metal rose. That was nice of him. (faire people are amazing and awesome, seriously).

And yes, you're seeing that right, Kat doesn't wear garb to faire. She has garb, but doesn't wear it because she only comes to faire once or twice a year.



Amadeo rubbed his sweaty, dirty face all over my cheek. And I thought my reaction was funny, so I used this as my 365days submission. (Have I mentioned his girlfriend yet? Because she's pretty awesome too- although she doesn't take part in these shenanigans).



And this is me with Ceej after the faire, in the Friends Garden, before the RESCU Rally. I was into my Vicodin and muscle relaxers by then (on an empty stomach because we didn't eat till we were at the rally).



And this is Sunday. He decided to hug me from all sides to get as much blood as he could on me. It was nice. If you're into that sort of thing. By the time he got through his fans, his blood had started to dry and my blouse kept sticking to him.



One good thing has happened from his leaving- well, aside from the fact that he gets to go home for the first time in months- Sir Mauldron will be jousting in his place. And the Mistress of Arms who is replacing him will be stunning. I can't wait for that. My loyalties are torn, though. I want to cheer for Mauldron, but Maxx's section is where the best photos happen. (this just means I'll have to get up and move around, so finally my jousting photos will look different).

This weekend is "Steampunk Invasion" and some online friends have gifted me with some Steampunk accessories so I can dress for it. That'll be fun.

Followup appointment update

Gee, I feel bad. I haven't updated this in a couple weeks. I usually try to be more on top of things. I'd like to say that I haven't updated it because I feel good, but that's not entirely true. So far, the muscle relaxers are doing their job and I'm sleeping at night. But I'm not entirely pain free.

Yesterday, I had my three-month followup appointment. Long-story-short, we're going to stay the course on the muscle relaxers and my doctor would like me to exercise more. She actually said that exercise and moving around is the best way to feel better and "I'm so glad you see this, because too many people don't."

It isn't that I see it that way, I just want to exercise because I can't lose weight unless I exercise. That I know. I don't ever expect to be a size 12 again and I don't ever expect to walk four miles a day, but I'd like to be closer to both of those numbers.

The good news for exercise is that this weekend is opening weekend at the Bristol Renaissance Faire in Kenosha, WI. And I've got a season pass. So, every Saturday and Sunday between now and Labor Day (that's September 5th to my non-celebrating friends), I'll be walking my fat ass around the faire.

Speaking of my fat ass, why do people take offense if someone calls themselves fat? I mean, especially if its true? I'm not thin. I know how much I weigh. I know what I look like. I'm not deluding myself in that I'm not overweight. I know how big I am. I'm wearing a size 24 in jeans. Sure, they're loose, but that would still put me at size 22. That's huge, people. I'm fat and I know it. Don't feel bad for me, it isn't your fault I'm fat. Of course, it isn't squarely my fault either, but that's not the point. The point is that I'm fat. I'm not chubby. I'm not "pleasantly plump". I'm fat. Let's move on.

Yesterday at the VA hospital in Madison, Wisconsin, I had to park in a car park on the opposite side of the hospital. They had a door right there to enter the hospital, but little else to guide a person back to the part of the hospital that looked familiar. I followed the signs for the UW hospital because I knew I'd eventually reach something that looked familiar. I did, after I trekked from one end of the VA hospital to the other- I ended up in radiology, which is the set of elevators I needed. Then I had to walk all the way back to the central elevators- which, I learned yesterday, were where I could have gone to go up the one floor as opposed to walking all the way down to where I did. But that's a moot point now. After I went to that office I have to go to before every visit, I had to go all the way back down to the elevators I'd just left to go up to the sixth floor Rheumatology clinic.

Surprisingly, I wasn't curled up on the floor in the waiting room when they called me back to the exam room. I actually felt pretty good. That gives me hope for this weekend at Faire.

And making it back to the car park wasn't even an issue. No, the issue came after I left the hospital. Turns out the street I take to get the hell out of Madison- actually, the street I take to get me to the street that I take to get the hell out of Madison was completely torn up with construction. I was zig-zagging through construction equipment and blockades like an Olympic skier during finals.

So, I did what anyone would do in that situation. I took photos. What? You wouldn't do that? Weird...



















And I get past all that construction... I turn right onto Park. I get a couple blocks down...

TRAFFIC!

Don't Cry for MEEEEEE!

One of the first reactions I get when I say: "I was diagnosed with fibromyalgia last year" is "Oh my gawd! I'm so sorry!"

And I try not to fill my Facebook status updates with my random whiny rants about how much it sucks. But once in a while- like today- I'll bitch about it. Because it keeps me up at night and I have nothing else to do. Oh, sure, I could work and put new listings up in my etsy shop, but pssh, it's the middle of the goddamn night! And inevitably, someone shows sympathy- and that's fine, and in the course of the comment-conversation, it turns to medicines. I just want to say a few things here...

You don't have to feel bad for me because I was diagnosed with this very real and debilitating disease. You don't have to make the sad face and say how sorry you are. Because, you see, now that they know what it is, they can do something about it. And they're trying. Everyone's fibrofuckingmyalgia is different. Some people get that widespread pain those TV ads talk about. Some get localized pain (also referred to as "hot spots"). Some people just get the pain, but not the crushing fatigue. You get the picture. And that's where the drugs come into the discussion.

When you're talking to someone who has had a problem for a long time, odds are, they've tried it. Whatever it is you're about to suggest, they've already tried it. And it either worked for them or it didn't. Or it worked for a little while, but then the side effects interfered with something important like, oxygen... or blinking. And I don't expect people to keep notes on my life or keep track of the minutia that is my treatment, but everyone pretty much knows that all my medical dealings (aside from the total knee replacement) are handled by the veteran hospital. And the VA has a protocol for treatment. And we have to follow it or I won't get treatment. So, we're taking those steps ('we' being myself and my rheumatologist). She can't skip anything- like say, jump right into the name-brand medicine you see on TV (and how fucking annoying are those ads, really!?). To skip over a treatment option, something has to be wrong. Something big, like having your legs, feet and ankles swell up like the side of Rocky's face after Apollo Creed decided to make meatloaf.

It is common knowledge about where I go for treatment. I've told the story so many times in the last year. When it comes down to getting that drug they talk about in those annoying TV ads ("I learned that connected to our muscles are nerves!" Really? You learned that? Guess what, I learned that the sky is blue! HOLY SHIT! RIGHT?!), I won't get the name brand. I'll get the generic. That's how the VA hospital does things.

Now, back to my original point- don't feel bad for me, really. It's a good thing that I was diagnosed with this disease. Because knowing what it is makes it a little easier to deal with. It doesn't make this fickle bastard easier all the time, but knowing there's a name to it helps. I'm typing this at 330ish in the morning because when I went to bed last night, my feet and legs started to itch. And I mean itch. That under-the-skin itch. That four-million-hairy-legged-spiders-trying-to-escape-from-my-pores itch. The internal itching that makes me want to douse my body in lemon juice and then roll around on broken glass itch. After an hour of twitching and staring at various things in the dark of my room, I got out of bed. I've been sitting at the computer, acting like a general fuckwit on Facebook (hey, it was all in good fun on a group page where being a fuckwit is a plus), resizing photos and watermarking them for listing on etsy later, and playing Windows7's idea of solitaire (the flipping sounds of the cards just tickles me).

And I was bitching in a status update. And that status update conversation is what spawned this blog.

So, if you've kept reading this far, thanks. And remember- when someone tells you they've tried everything- chances are, they have. No, you don't have to say it- they did, really.

Also, for shits and giggles, here are some photos I took today. I went outside in the 98° heat three times today and took about 60 photos total. These are just a few- for those who don't know, all these flowers are in my yard.

















While I was going through and picking photos at random, I had two thoughts- "these are what the disabled guy says are not art."

And, "I'm quite proud of myself for getting outside three times today to take these photos."

Then it hit me.

The extra physical exertion in the extreme heat (there was a heat advisory out today) is probably what triggered tonight's lack of sleep and excess of itching.