Opening Weekend at Bristol!

Oh geez, here we are already at Friday. I thought this week would craaaawl past me like so much slimy snails with the speed and quickness of watching grass grow. But it didn't. It sped by so much that I kept saying to myself, "I gotta write that fibro blog soon..." and now... FRIDAY! The day before the second weekend!

Well, opening weekend found me alone at faire. Christine was busily and happily slaving away as the unpaid intern for the stage managers. She's totally legit too, dude, seriously. She's got a walkie-talkie with a headset. Now, being "alone" at faire is ridiculous. Even the quietest, shyest little demure flower isn't alone at faire. You're surrounded by friends. Friends you've known a while, friends you've just met, friends you haven't met yet. And it is awesome.

But I digress... this is my fibro blog and that's what I'm here to talk about. This week, I was in an exquisite amount of pain. But the shocker is that it was not from the fibrofuckingmyalgia. That's right. My weekend activities- which sent me up and down that blasted hill several times- did NOT cause a flareup of epic proportions which would have made me whiny and whingy and all-around annoying.

No.

This pain was from my feet. I already have tendinitis in my feet. I've suffered with it for just a smidge over twenty years. While I was pregnant with my second child (the boy, Jason), my arches started falling. And here we are, he's 20 1/2 years old and my arches are still falling. I have no idea why they're on the world's longest controlled fall and when they'll land, but they hurt like a motherfucker when they flare up. Honestly, they hurt all the time. Right now, sitting at this desk typing to you, they're sore because they're on the floor and have some weight on them.

So, along with the tendinitis, there's some bursitis, and plantar faciitis, and bone spurs (which is kind of what the plantar faciitis is, but I have bone spurs throughout my entire feet, not just the plantar kind). And, in cahoots with the fibro, I have neuropathy. Across the top of my right foot, I get this painful burning/numb feeling. And that "numb" thing is totally a misnomer. There is nothing "numb" with this pain. I used to refer to this feeling as "a red-hot railroad spike being hammered between the bones to the first and second toe". And all along, it was neuropathy. If you have carpal tunnel pain, you're familiar with how neuropathy feels and works. Now notch that bastard up to eleven and join me in a bitchfest of how these things suck so badly that they'd be in a terrible movie about "doing" a particular city with a girl named Debbie.

On Tuesday, I had to wedge my neuropathic foot (I just made that word up) into a boot and go back to the faire. Why? To deliver a Chihuahua puppy to a jouster. What? Jousters don't have Chihuahua puppies? Yes they do. I can name two right now. And one of them has two Chihuahuas. And then on Thursday, I had the opportunity to go see an act I usually only see at the faire. The Suitcase Shakespeare Company came to our local library to put on a free show for the kids and I went to photograph it for them (170 photos for a half hour show and a half hour demonstration and Q & A session).

My feet caused me to have a flareup on Sunday. I had a mild fibro or a severe foot thing flareup that caused me to walk away from the joust. Yeah. That's how bad it was... I actually put my camera away and walked away from the joust so I could sit down in the shade. I thought maybe I had dehydrated myself but I'd been drinking water and Gatorade in tandem all day. (and I had lunch). I sat in Shakespeare's Meadow and rested, taking photos of the Fantastikals as they did their awesome things around me. Forty-five minutes later, I was back in fighting shape and managed to stand at the entire final joust.

So, there you have it. I survived opening weekend and came away with around 1100 photos for my efforts. Linky-link-linkety-link-link-link to my faire photos. It took me four days to go through all the photos. I've only uploaded a select few, hence the "only" 153 photos in that link. (Most of them are on my Facebook though). In my mildly whiny lamentations about the pain on my Facebook status, I learned that one of my newer faire family does work in the field of whiny-chronic-pain-issues. (I find it hilarious and awesome that my faire friends- who dress up as either historical or fictional flamboyant and hilarious characters have jobs that are the opposite of their fun faire personas).

And, in adorably cute news, here's a photo of a jouster with his puppy.

Two years ago...

I was officially diagnosed with fibrofuckingmyalgia two years ago. Which means, I've been living with constant pain for at least seven years. Here is a link to the first blog I wrote about fibro. In that link, you'll find two other links. It'll be like a flashback inside a flashback! How exciting for you!

So, two years. I didn't even think about it on the actual anniversary (last week, actually), but ironically, a friend was asking me how I felt and they actually wanted to know how I really felt. So, I described my pain. I described how, on what I'd call a "good day", my 1 to 10 pain level is around a two or a three. Annoying, but I can function.

And then they asked "and at the worst?"

I replied: "Tears. I cry."

If I can sit up at my desk and be distracted by the Internet, then I'm okay. But if the pain is so bad or the exhaustion saps me so much that I feel the need to lay in bed, then there are tears. I try not to complain too much on my Facebook statuses because I don't want to become "that person". I don't want that kind of attention. I want people to think of me in a good way and not say, "Great, here she goes again..." unless it happens to be about photography or the ren faire. (then if you don't like it, there's a neat thing called "un-friending", get on that). I use the 'net to escape drama, not create it.

So, today was a semi-good day. I'm exhausted- but I spent the weekend at Bristol (pre-season!) and the heat got to me on Sunday. Today my skin isn't on fire, it just aches. My shoulders are sore and I feel better sitting down than standing up. So that's what I've been doing a lot- sitting down.

I've learned that humidity, not the heat, is what kicks my ass. In one of my first blogs about it, I described Fibrofuckingmyalgia as a stealthy Chuck Norris. It turns out that the Army of Ninja Norrises (Norrisi? Norrisey?) takes refuge in the humidity and the ever-changing weather. Our weather this year has roundhouse kicked me in the back of the face a lot. A LOT!

But, here are some good things that have happened in the last two years. "The Treatment" I am referring to is 10 milligrams of Cyclobenzaprine (Flexeril). I take two at night.

Because of the treatment, I now regularly get six to eight hours of sleep a night. Sometimes I even sleep straight through for five hours before I wake up to look at my clock. And when that happens, I smile. Because I've slept for a five hour block and still have another two to three before I have to get up.

Because of the treatment, I was able to go to Bristol three times in 2010 and, in 2011, I had a season pass. We went every single weekend. And that's happening again this year. And it will continue to happen every year.

Because of the treatment, I have more energy for more days now. I take photos for longer stretches of time.

Because of treatment, I take less Vicodin now. I rarely take it during the day and I take a less at night.

Because of the treatment, I have regained the feeling in my fingertips. I have carpal tunnel in both hands, worse in my right than my left. And for years, the fingers have been half-numb on both hands. Sometimes it was just literally numb- I could bang them on my desk and not feel a thing. Sometimes it was that tingly-trying-to-wake-up painful feeling. You know how I found out I'd regained the feeling in my fingers? I touched a hot dish in the microwave. Well, "touched" isn't an accurate word. I picked up a hot dish in the microwave and promptly dropped it on the floor. It was hot!

Because of treatment, I have more good days than bad. I have more stamina. I have more enthusiasm.

I still have bad days. I still have days where it hurts to put on clothes and days where sitting upright is just a terrible idea. But they don't happen as often or for as long as they used to.

I've lost weight. I've made amazing new friends. (and believe it or not, having amazing friends makes a lot of things easier. And I had amazing friends before, I've just expanded the circle and some of them are "real life" and not just online- which, of course, means "faire friends", so they're doubly awesome because most of them have real names and character names. A few of them even have more than one. I'm looking at you Phillie/Chastity/Tabitha).

Bristol opens this weekend. And Ceej, my daughter who turned 19 just last Friday, is an intern with the stage managers. And that means we have a participant parking pass. Bleh, I thought. Participants park really far away from the front gates. And if we park there, I'll have to trek uphill to get to the gates just to get in (because I have a season pass still- by the way, thanks to the Internet for that).

But you know what? I can walk up that hill. And I will. And not to save the money on parking, but because at the end of the day, when Ceej is done with her work, we'll be leaving through the participant's gate instead of the front gates. And with my new camera, I'll be doing more at the faire. I'll be taking photos of more people and at the end of the season, I'll be handing out more CDs than ever. I really can't wait. (here's a link to a bit of a teaser for this season:

My photography blog post about pre-season at Bristol).

So many good things will happen this year. And if I wasn't having so many good days, I wouldn't be able to enjoy them. So, Captains Frobisher and Hawkyns, Sirs Mauldron, Maxmillian, Edgeron and... I'm sorry, I don't know the fourth knight's name yet (I know his real name and we're FB friends, but he doesn't have a character fan page like the others)... Jane the Phoole, Thomasina, Chastity Trollop, the Barbarians and 300 Battle, Barely Balanced, the guys at Dark Cloud, Queen Elizabeth, the Fantastikals, 2 Merry Men... and so many more... you've been warned. You saw what I did to Flight of the Raptor pre-season...

...and I did it all before 9 AM

So, what's a lady to do when she wakes up in what is becoming a two-day long flareup of her chronic pain disease?

Does she "soldier on" and grit her teeth through the pain?
(Which is what she usually does)

Does she give in and take her dreaded "daytime pain meds" which she hates to do?
(She really hates to give in to this)

Does she crawl back to bed, slowly, dejected that today is going to be another crappy day?
(She really hates to do this)

Does she let the tears flow that are burning in her eyes?
(Oh, don't even... this is worse than daytime pain meds AND crawling back to bed)

Does she give up when her suspicions of high humidity are confirmed by the fog and obvious recent rainfall?
(This giving up sucks and results in retreating indoors to the central air-con)

No. This chick picks up her camera and stands outside for a half an hour taking different shots of raindrops on flowers, playing with the light of the ever-changing sun behind the trees and through the hazy clouds and fog.

Vicodin- two 325/5mgs.
Lenses- two; 40mm macro, 55-200 zoom.
Memory card- 8 GB
Photos taken- 37
Photos usable- 35
Photos used- 23 (there were some repetitive ones that I chose not to keep)

It still hurts. My skin is still on fire. My arms ache from holding up the camera. My hands are stiff and my right wrist is grinding every time I move that hand. My back aches from leaning and bending. The muscles between my joints burn as though they're being stretched too far. The flareup is causing my tendinitis to rear its ugly head. And if the Vicodin is going to do anything, it hasn't yet.

But, this is what I did. This is what I did as my body screamed at me to stop. As my brain kept telling me to stop. As the sun teased me from behind the trees and clouds. As the once-dead air kicked up some wind to make macro shooting problematic. What made me stop? The fact I was sweating into my eyes and it made it hard to see. (What? Its June! Heat, humidity. Bleh).





























In the 45 minutes or so that it took me to edit these (I shoot RAW now, so there's a conversion to JPEG that has to happen, then I resize them for uploading on Facebook), my muscles kept burning and now they've tightened up. When I go to stand up, it will hurt. A lot. Right now, the skin on my arms, hands, upper back is itchy, that "millions of hairy-legged spiders" kind of itchy. And the muscles/tendons in my hands and arms feel like they're trying to escape through my skin. In my hands, it feels like the tendons are trying to peel off from the bones.

And in true military brat form... I did all this before 9 AM.

Vocabulary...

We've established that the actual name of fibromyalgia is "fibrofuckingmyalgia". That's important. Because that's what I call it in real life. At least, that's what I call it when I'm not too tired or too whacked on my pain meds to just say "fibro".

And we all know about "flareup" or "flare-up" or "flare up"; depending on your particular spell-check. In mine, all three are right, because I don't put up with any of that squiggly red line crap my browser tries to put on me. I spell things right, dammit, and if I make up a word, I damn sure add it to my dictionary.

But I digress...

Yesterday, then again today, I was out doing stuff. Yesterday, grocery store; today, ruining some fabric with a needle and thread. And I suddenly became tired. Not just tired, but mind-stopping, bone-crumpling exhausted. I almost folded in half at the grocery store. Yeah, it was awkward. (no, in reality, I literally slowed my gait by half).

As I was driving home- which is so much easier than walking to the car park to get in my vehicle- I realized I was probably having a flareup. Which made me laugh, because I was definitely not "up".

So, I've now decided that when I have a "flareup" that has exhaustion as its main problem- it will be called...

A Flare Down.

Yeah, two days in a row, I started off my day just fine and then, had a flare-down. Flaredown. That's right- I just added "Flaredown" to my spell-check.

The Discovery...

As I type this, it is Sunday evening. I'm two hours past Vicodin time, almost an hour past muscle relaxers (which have all been taken, thank you very much). Starting on Thursday, I've not had one day where I wasn't doing something. For hours. Thursday was the big grocery shopping day. Friday was the usual payday errands and a bit of drama that isn't worth discussing, but it was emotionally stressful (the kind of stress I hate the most). Saturday, I was on my feet most of the afternoon, taking photos at a graduation party. And Sunday, we delivered the benches the Disabled Guy made to the renaissance faire. (faire doesn't start for another month)

I ended up having to lift and carry the heavy benches before we could leave. Anticipating the pain and exhaustion I would be in from the three previous days, and knowing I wasn't going to drive, I took Vicodin. Three tablets at 325/5mgs.

Five-ish hours later, I took two more.

And six to seven hours later, I took two. (that would have been my usual nightly dose of three, but I figured I'd had enough Vicodin attacking my liver and/or kidneys.

What I learned is that I need that much Vicodin to remain mostly pain-free. I wasn't pain-free, but I was a lot less pained than I normally am.

I'm not thrilled with this information. And I'm not happy that I had to discover it. Much like discovering penicillin instead of a PB&J sandwich- no, wait, that was actually a pretty good discovery...

Have you seen "The Crying Game"? Because there was some discovery there that wasn't all that pleasant. I mean, you know, depending on your perspective, it was unpleasant. But up to that point, things were just dandy. I was dandy today, but I took too much Vicodin. Things are sore now, muscles are aching and tightening up and I know tomorrow is going to suck dirty socks. But, it was still a good day.

Despite the "too much" with the Vike, lots of good things happened today. LOTS of good things. I am not at liberty to discuss them, so I'm going to leave you with this-

"Where is everyone? I'm at faire, this is the Globe Stage, the sun is out, I hear laughter, I see all the people... but there's no Maxx and Mauldron Show... When will I ever get to meet Mauldron?"

I survived two days at a ren faire only to have my ass kicked by the weather

The Janesville Renaissance Faire was fantastic. It was good fun and seeing all our friends (well, our local friends) again was great. On Saturday, I had to work from Noon till 6 PM- which works out, because we go back on Sunday and I spend all the money I made back at the faire. The people who read this are also on my Facebook page and already know the news.

On Saturday morning, I threw my gear at the booth where I do readings and went in search of friends. I found them easily, since we're friends with a lot of cast members at Bristol. And I love the fact that we can have a conversation and they never break character. While I was talking to a couple of them (who happen to be husband and wife- in real life, not in character), my daughters and one daughter's boyfriend showed up. They were recording me... long story short (and the videos are on Facebook), they gave me my Mother's Day present (a week late, but that's awesome). They wanted to do it in public and the faire was great because we were among friends.

What was my present?

If you don't already know- brace yourself... my kids pooled their money and got me a Nikon D5100 DSLR camera. Not just the camera and the usual swag- but also a zoom lens and a macro lens. So I've gone a little crazy with the photo-taking this week. I have the most awesome kids in the world.

And, if you want to see it- here are most of the photos from
~the Janesville Ren Faire~. Almost all the photos taken on Sunday were taken with the Nikon. And, here's a link to a set where I put all my Nikon photos, except the ren faire ones.

~Random Nikon D5100 photos~

Now, moving on...

I ended up with bruises on the arches of my feet, from all the standing and walking I did on Sunday. Monday, I was fine, just a wee bit tired. Tuesday, the exhaustion hit me. But, still not much pain. It seemed that I survived the first renaissance faire of the season mostly unscathed by fibro pain. Huzzah.

I've had a general all-over aching for over a week though. I'd mark it as a level five, sometimes an eight, but mostly very tolerable. And late Wednesday afternoon, it got worse. And Thursday was dreadful. I thought that the ren faire took its sweet-ass time getting to me, but it turned out that the weather was changing. We went from mostly sunny, relatively dry weather to impending storms.

That dreadful aching escalated into a full-blown flareup. And while I have learned I can deal with the pain, the total exhaustion is another matter. This fibro thing, when it wants to, can beat me down and kick my ass like Dalton cleaning up a small-town dive bar. But only if Dalton were a whiny jerk who beats people half to death with a wet swimming pool noodle. One would think that if a beating is so pathetic as to be compared to a swimming pool noodle that it isn't that bad. Did you see where I referenced Dalton? Its a savage beating. Its like I blew up the barn he lived in and then challenged him to a fight to the death in front of a lake where we both have to had to end up shirtless and sweaty...

Wait a minute, I seem to have lost my train of thought. It had something to do with shirtless and sweaty men, right? Strange... this is my fibro blog.

Oh, right... pain. Always with the pain. Yesterday (that would be Friday, May 25th for those of you who aren't reading this in a reasonable time frame) was particularly rough. Along with the all-over pain, which had increased in intensity, and the exhaustion, which was so delightfully nagging, my attitude took a plummet. I hate it when that happens. I don't like feeling down. Of course, I don't stay down for long. But the fact I fell into that funk is bad enough.

Saturday morning (today, that is), I woke to a wonderful thunderstorm that is actually still going on as I type this. So the pain I'm in is from the weather. I've got shooting pains down my arms, in the muscles and it feels like I'm developing tendinitis in my other shoulder. And my skin feels like its on fire- not just itchy with the thousands of tiny, hairy-legged spiders, but also hot.

What I want to know is, if I feel like I'm about to burst into flames, why don't I have any superpowers? What doesn't kill us makes us stronger, right? I get told that a lot. So, with everything that hasn't killed me yet, I should be a goddamn superhero. Where's my skintight body suit? What's my emblem going to be? Where's my cape?

No, wait... scratch the cape. No capes. They never work out.

And I leave you with this... a photo taken of me on Sunday, at the Faire, by my lovely and talented friend- The Duchess. I'm cheesing it up with my cheesiest smile. My camera is in the basket on my arm. And the wind made my hat SO POOFY.

When You Fall asleep to "Futurama", weirdness ensues... [flareup whining inside]

Today is Sunday, May 6th. That's in case you live in the future or if you're reading this on some other day than the day I posted it.

I woke up today feeling a little sore, kinda stiff, but no biggie, I wake up every goddamn morning like that now. The Disabled Guy got home on Friday evening, so that's been a barrel of laughs. Saturday, we had to go to Ceej's dorm and move 90% of her crap home. She's got two finals and then she's staying at her sister's for a bit. We took her car out to her so she'll just drive herself home.

I've been under some stress lately that I won't bore you with, but as you know, stress can exacerbate the pain. I had to run to the store and shortly after I got home, I started to hurt. Slowly, the pain became more intense. My skin felt like it was on fire. My clothing hurt my skin and even having one of the dogs brush by my leg caused me to wince. As the pain increased, I seemed to lose my ability to stand up straight. I started to curl into a question mark. Let me tell you, that's not a good look for anyone- except question marks. And maybe The Riddler.

Since NASCAR was on, I decided to go upstairs and get under my soft fleece blankets. As mentioned before, the fleece blankets I have are super-soft. One blanket feels good, the second blanket's weight just feels nice against the softness. Oh, also, I'm naked. Sorry for that mental image.

I wasn't tired, really, so I had "Futurama" on Comedy Central. As Stephen Colbert said: "Comedy Central, where you're never more than 30 minutes from an episode of 'Futurama'." (or something similar, frankly I'm not going to look it up).

As if by psychic cue, three of my friends started texting me. It was like they knew I felt terrible and only their special brand of crazy was going to make me feel better. (one wasn't actually texting me- but I get text alerts when I get a Facebook message). It was nice. To you guys, thanks.

After the marathon texting and a couple episodes of "Futurama", I started to doze off. I was in pain. Excruciating pain. I couldn't shift my body around without wincing. So, I was sprawled out, taking up most of the bed, not moving. This was a huge pain- I had tears more than once today. This is how bad it was- I didn't take Vicodin before I went upstairs and I should have. But, I hurt so much I didn't want to go back downstairs to get some Vicodin.

I can hear you saying: "But, the Disabled Guy is home, why didn't you have him bring it upstairs with a bottle of water?"

Weren't you listening? NASCAR was on.

As I dozed off, I was half in and out of semi-animated dreams that involved characters from "Futurama". I wish I could remember the details because it was very surreal. I also had a weird dream about someone I've never met in person. I don't even know what it was about, but I think we may have been declaring a thumb war.

Somewhere in there, I had to change the channel because "Futurama" ended and Jeff Dunham's canceled show came on. I'm sorry, if you like him, that's cool and all, but he stopped being funny to me sometime around the year he started using the Achmed-the-Dead-Terrorist character. I switched it to one of the X-Men sequels on FX. Then my dreams were a weird mix of Leela and Wolverine discussing my mutant abilities.

That's what it is... I'm a mutant. This fibrofuckingmyalgia is part of my mutant abilities. I can withstand pain that would drop a normal person in their tracks.

Lamest mutant ability ever.