Terrible, awful day.

It started out like any other rough day. I took pain meds at 6 AM. I took some photos, hoping to forget some of the pain. I took some more pain meds around 3 PM.

Didn't help.

Fibro won.

Pain won.

Tears won.

Fibro sucks.

Pain sucks.

Crying sucks.

Vicodin didn't work all day.

Muscle relaxers have done very little this evening.

I'm tired, but I don't think I can sleep.

My muscles hurt. They hurt so bad that I feel like they're being stretched and wound up tight.

My skin itches. My skin feels like its on fire from the inside out but its cool to the touch.

My clothes hurt me wherever they're touching me.

Sounds are bothering me.

I feel extra-sensitive to everything. The TV is annoying me. The dogs wanting me to pet them are bothering me. My hair is even annoying me.

I want to claw my skin off, peel my muscles away from my bones.

Pain won today and I can't even muster humor to deal with it.

Fuck pain. Tomorrow is another day.

My Self-portrait was a mini-novel or at least a blog post

You all know I do a 365days self-portrait thing over on Flickr. I'm about a hundred days till the end of my third year of taking a photo of myself, every day. Haven't missed a day yet. Anyway...

I was feeling semi-creative today, somewhat inspired by the "Costumes" theme in the weekly Fro Knows Photo weekend assignments. Obviously I'm not going to submit this photo, because it's terrible! I should have taken more time with it or something, I don't know. In fact, as I type this, I already know of a way I could have done it better. Lotta good that does me NOW, but let's move on.

This is a copy/paste of what I wrote in the "description" part of the photo.


I've been living with chronic pain for almost ten years. At least, I think its been almost ten years. I can't remember what it was like to not be in pain somehow. For three years, it was mostly knee pain- well, it was knee pain that hurt the most and muted the other pain.

But, I wake up every day and I lay in bed for a moment. I start at my feet and I flex my muscles- little by little. Feet, calves, thighs, hips... all the way up. It hurts every damn morning, but it hurts in varying degrees. Sometimes, it barely registers, so I get out of bed rather quickly. Some days it hurts so bad that it takes me ten minutes to go from laying in bed to standing on my feet. If you don't think that's a long time, just sit there, time yourself, for ten minutes. Some days the pain is so bad that I have to hold onto things to walk out of my room. The bed, the wall, the dresser, the door frame.

So, every day, with this chronic pain, I have to decide what my day will be like. Will I let the pain win? Will I take pain meds in the daytime to get through it? Will I be sad and desolate (the face in my hand- you can't really see it, but I was trying to be sad) or will I plaster on a smile and have a good day, no matter how much I hurt?

I usually opt for the smile. Some of my 365 photos were "faked" on really bad days. I have a fake smile or my smile is convincing, but you can see it in my eyes. I can fool you- most of you are strangers and don't actually know me. But there are a few out there who can tell. Even with the smile, they know I feel awful.

I try not to let it get me down, but some days are hard. Today was one of those days. I set my alarm for an hour early so I could try and photograph the meteor shower. But, I had a hard time falling asleep and then I had a hard time staying asleep. I ended up sleeping through that alarm and waking up twenty minutes later than I normally would. It was a five minute climb out of bed day.

I took some pain meds and a muscle relaxer when I got downstairs. I was in a crappy mood, too. Just bleh. Everything annoyed me- and I mean everything. The way my clothes felt on my skin, the way my dogs were excited to see me, the comments on Facebook, everything. I took a very short and not-at-all-good nap and felt slightly better. But things still irritated me. The disabled guy was acting mildly jerkish and I snapped at him (granted, he was being a jerk, but he didn't need me snapping at him).

So, I plastered on my smile, put on my boots and took my camera out. I took a bunch of photos along the river and ended up taking a bit of a hike at one point (I ended up sweaty and got mud on my boots). And I got some decent photos.

Most days, I choose that smile. And if I'm in such a bad way that nothing else works, I do a little photographic therapy. I still feel terrible. My resting pain level is about a seven on that one to ten scale. When I go to stand up, my legs are so sore and stiff that I can't start walking right away. And my hip, I can't even describe THAT pain. Its definitely a ten.

But, I'm in a good mood. I got out and took photos and people like them. I read some articles on Cracked that made me laugh. And as I type this, I'm an hour away from taking my next dose of pain meds.

Choose your mask well. And do a better job at Photoshop than I did. :)


My pain meds aren't living up to their name or their titles (I've referred to them on Facebook as "Sir Vicodin" and "Lord Cyclobenzaprine"). I still feel awful and moving around is just terrible. And my damn hip, I sure wish I knew what was causing that to hurt so much. I'm just relieved to know it isn't arthritis and I won't end up needing a hip replacement. Here's the photo from today- Day 251 of my third 365days project:



Anyway, I did get a whole bunch of good photos today. And, here are a few... if you're on my Facebook, then you're seeing these shots again. Sorry. I drove around to various parks so I could safely park my truck and get out to walk around. When I was almost home, I drove by a dry creek bed that I've always been meaning to stop at and photograph. So, I turned around, parked in a business parking lot (they were closed, it was Sunday) and proceeded to hike over to the creek bed- which was muddy, not dry- and take several photos. I ended up with mud on my boots (as they are intended to get on them) and sweaty from the walking and climbing over and around the creek bed. I really miss hiking. Now, if you click on any of these photos, it'll take you to my Flickr and you can look at any of the photos from today (or, well, ever... since that's where my photos are).

Well, here's a kink in the garden hose.

I really have no idea what the hell that title means.

October 6th and 7th found me out at the Stronghold Olde English Faire. It wasn't just "cooler weather", it was downright COLD! And oh, boy, was it wonderful! Sure, I was wearing my ineffective cloak and not-period fingerless gloves (I had to keep my fingers free for photo-taking), but the fact that I wasn't dying of heat exhaustion or having a flareup from the humidity was enough for me to love the day.

Till I sat down for any extended period of time and then tried to move. Turns out, this fibro-beast doesn't like the cold weather any more than it likes the hot weather. This whole year has been a disturbing visit into chronic pain hell from whence I have no escape! (did you hear thunder and did my words echo? No? That's it, I'm firing the sound crew, they do nothing!). Luckily, on Saturday, I had the help of an armored escort. He helped me to my feet when I needed help standing up. Would you like to see a photo of him? Of course you would. I took this photo last year (2011) at Bristol. This was actually the day we met.



If not for his hand at times, I wouldn't have been able to stand up. The cold didn't just "settle in my bones", as I heard my elders say numerous times. The cold soaked into my muscles and my bones and set up tents, staged a protest, burned some effigies of what a pain-free existence used to be. The cold marched on the streets and stormed the castle. The cold intercepted the game-winning touchdown and ran it back down the field while my team floundered like so many... uh, flounders on the field.

You get the picture.

I had trouble falling asleep, because the cold made everything tighten up and the muscle relaxers did nothing to help. Sunday at Stronghold, I had my daughter with me and I took pain meds upon arrival at the faire. It helped a little. It was also not as cold as the day before.

So, what I take away from this past ten months...

The weather changing can trigger a flareup.

Humidity can trigger a flareup.

Heat can trigger a flareup.

Cold can trigger a flareup.

Physical activity can trigger a flareup.

A butterfly flapping its wings in New Cumbria can cause a flareup. (I don't even know if that's a real place. Maybe Cumbria isn't all that new, who am I to judge?).

So, basically, I need to live in a pressurized, climate-controlled environment and never move. Never get up and walk around. Never go outside. Never do anything. Never see anyone. Never, never, never, never.

Fuck that noise.

I spent three goddamn years trapped inside my house, inside this stupid body, at the will of a doctor who just wouldn't give me that much-needed consultation letter. I am not locking myself in the house and missing out again. I have no idea what can be done for this- I have a followup appointment on Thursday- but this ridiculous disease is not taking my life from me. I let it take enough from me.

So, I'll muster through. March on. Carry on and keep bitching.

I have another faire this weekend, one I've never been to and I can't wait. By the way, here's a link to the photos from Stronghold Olde English Faire in Oregon, Illinois.

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

Last night, a realization...

I've had a rough couple of weeks with the weather being moodier than a 14 year old girl. Hey, I'm a parent of two formerly-14-year-old-girls and was once one myself, I know they're moody! Each day, the pain gets worse instead of better. The Vicodin doesn't touch it when it gets that bad. The muscle relaxers barely put me to sleep (and actually failed completely twice).

I wondered if I should bother calling the doctor about it- even if I did, I wouldn't get an appointment for six to eight weeks anyway- or should I just ride it out because of the weather changes. I really hate to complain (except for here on this blog, that I started specifically to bitch about fibro), so I don't want to be all whiny to the doctor now, only to have everything settle down in the six to eight weeks between the call and my appointment.

But the realization...

I first hurt my right knee when I was 18 years old. I have a photo, seriously. The Disabled Guy- back when he was just Jerry- was in basic training. We'd been married almost a year by this time. My mom thought it'd be funny to send him a photo of me, all glassy-eyed from the pain meds. I don't even remember what they gave me, I think it was Codeine. But my mom took this photo (and I literally just scanned it for you).



Yup, that's me in October of 1987. I have a coat over my legs because I wanted to cover my legs and my mom wouldn't give me a blanket. (something about "show him a little leg!" and I recall it being hilarious). By the time he was done with basic training, I was pretty well recovered, I wore a skirt to his basic/AIT graduation in Oklahoma (I was in Alaska when I hurt my knee- during a snowball fight. I blew it out like a football player, while running).

And eventually, I'd go on to injure it in a minor way till the late '90s. I ended up slipping on the ice at work (I was a security guard) on the weekend between Christmas and New Year's, 1998. I had arthroscopic surgery to fix it up and everything was fine.

Till March 3, 2006.

That's the day I slipped on the ice on my back deck and ripped apart my knee much like I had in 1987. It was 7 AM. I had an appointment at 8 AM at the middle school for parent/teacher conferences. I iced my knee for 45 minutes, took the two middle-school kids to their conferences. The teachers, upon hearing of my injury, came down to the first floor to talk to me instead of making me go upstairs. Then I drove the kids home, told them to tell the Disabled Guy I was going to the ER and I'd be home eventually.

Cue the three year saga that led to my left knee being replaced in March 2009. I have a photo of that too. I actually have a lot of photos of that, but I'm going to show you this one... me, drugged off my ass on Oxycontin and Oxycodone. I had only just come to from the anesthesia when I told my oldest daughter (she was 19 years old. I was thirty-nine) to take this photo. You get it all... (the thing on my head was because I was having hot flashes- yay perimenopause!).




So, if you're still with me, let me tell you what I realized last night.

I was dragging myself up the stairs at 10 PM because I was exhausted. Pain is tiring. And I said to the Disabled Guy: "Everything fucking hurts. Everything. Except my knees. My knees are fabulous." and I told him (again) what my knee surgeon had said- that if everything went as planned, the pain would go away in my other knee. And he was right. My oft-injured right knee rarely hurts anymore. And of course, the cyborg knee doesn't hurt at all.

So, I'm dragging myself up the stairs and I pause to tell him that tidbit and it hit me... I spent all those years dealing with arthritis pain and foot pain and it kept me from doing certain things and it made me gain weight and all that... and now that my knees are fine, I'm still dealing with pain. Its like there's no way to let me live and be pain-free. It has been so long since I went without pain that I honestly do not remember what it is like. After years of dealing with the knee pain and the fallout from all that, I should be running around like a maniac. I should be yoga-ing all over the floor and dashing in and out of stores and running errands.

But I'm not.

Instead, I spend days wishing I could cast some spell to take away the pain. I spend days in pain that would dissolve most people to tears. I'm at the mercy of humidity and barometric pressure. I watch my diet, because I don't know if I have trigger foods or not. And stress. I spent over ten years dealing with stress on a near-daily basis with grace and stubbornness. And now- I still deal with it, but it kicks my ass when its over. That stress hormone is an ugly bitch and nobody should take her to the prom. Her name is Cortisol. You probably saw her name on the bathroom wall with the words: "Ugly bitch" scrawled underneath.

Today was cool and breezy, but I was still in pain. I took a muscle relaxer in the morning just to see if it would help. It didn't, but I got a mild buzz out of it, so I suppose that's a plus?

I'm going to end this now, on a high note. The Stronghold Olde English Faire is in a couple weeks. I'll get to see my local ren faire family there. There isn't any jousting at Stronghold, the venue isn't big enough (its just a small, two-day faire), but there will be Sword Point Towers.

Towers and seeing all the local faire folks? That's enough for me!

Sparkles and glitter! Rainbows and sunshine! Kitties and fluffy bunnies!

There, now that the title has lured you into a false sense of glittery excitement, welcome to another whiny-ass blog from me!

I try to stay positive. I try to stay upbeat. I usually use humor to defuse tense situations or to deal with pain or stress. Because if I don't, I'll end up as an angry, depressed puddle of goo that nobody wants to be around. And if nobody wants to be around me, how will I have anyone to talk to? I'm like a shark- it needs to swim so it can breathe. I need to communicate with people so I can live!

In reality, sharks don't need to swim to live... but I still need people!

And look at that, I've gone off on a slight tangent and went off topic. Sort of.

Okay, here's the dealio. That's right, I said "dealio", dealio with it. The deal....io is that I have gone through another flareup related to the weather. I've been keeping an eye on the Weather Channel's website for barometric pressure changes and predictions of rain and/or temp changes.

Sidenote- I always equated watching the Weather Channel with being an old person. We joked with my parents that the first sign of aging was multiple bird feeders in the yard and Weather-Channel-watching. But it doesn't count in my case because I'm not watching the Weather Channel... I'm checking the website so I'm still cool and hip and with-it.

The kids still say that, right? "Cool"? "Hip"? "With-it"? Good, because I'd hate to be seen as some crazy old lady with too many pets and a tendency toward hoarding.

So when this flareup hit, I knew why. It doesn't change the sheer suckitude of this flareup- or "flaredown" as I once called it in a post. But it was nice to know why instead of sitting in a slumped blob in my chair and whining about the whole thing.

And this is typical- I'm in pain. I'm in more pain when I move than when I stay still. My left hip is in screaming agony and as long as I stay still, it doesn't do much more than mildly ache. Taking a deep breath in has started to ache, but not in that "Holy shit, I have bronchitis" way, more like in that "Ow, my muscles ache, why did I lift that Volvo off that baby yesterday? It wasn't even my baby. What the hell was a baby doing under a Volvo anyway?" way.

On top of the usual "widespread pain" (bloody hell, I hate those TV ads), I've got my itchy skin. That deliciously irritating itchy skin. The thousands of hairy-legged spiders all trying to burrow out of my skin through my pores. This whole "widespread pain" mixed with the itchy skin also creates that burning effect. I feel like my skin is on fire. And, to top off the fluffy frosting of fiery pain, my muscles are so sore that it feels like they're trying to escape through my skin. Actually, its more like my bones are trying to escape. Its hard to describe- I feel twitchy from it. I simultaneously feel sore and achy, like my muscles are trying to curl up into a ball and it feels like my muscles are being stretched to the point of tearing, where that "bones trying to escape" feeling comes from.

Last week, I was having a conversation with one of my faire family about various things and of course, the whiny-ass topic of my flareup came up. His reply was so nonchalant and normal... he simply said: "Pressure's changing..." and went right back into what we were originally talking about. Like this stupid disease was all normal and no big deal. I didn't ask him for help or advice or anything, he just said it so casually. Why can't every person in my life do that? Turns out the Disabled Guy thinks I'm exaggerating again. I don't know how to explain the varying degrees of pain and my varying degrees of tolerance for it. (please, don't bother suggesting things. He had a stroke almost 18 years ago, he doesn't retain information or express emotions the way normal people do). But I liked how that happened. My friend doesn't doubt my pain levels or how I deal with my pain. He just acknowledged it and moved on. It was refreshing.

I'm stuck with this stupid disease for the rest of my life. It won't kill me, but it makes me miserable and sometimes, its hard to stay positive. I ended up back in bed today, laying naked under those fleece blankets and I had a few instances where tears broke through. It would be nice to get a little sympathy from the people who live in this house. A sincere "I'm sorry you're hurting" now and then. I'm not asking for much, am I? What I usually get- if I get anything at all- is a terse: "What do you want me to do about it?"  I don't expect anyone to do anything about it. Just don't treat me like I'm making it up. That's not so much, is it?

Now, to end on a high note- because I like to end with something good.

I got myself an early birthday present. The surprising thing isn't what I got, but the fact that it took a mere three days to get to me after I ordered it. I got myself a "Courtier's corset" from Damsel in this Dress. (it isn't really a "courtier's corset" in as such they wouldn't wear one like that). I love it and it looks great. I can't wait to wear it to the ren faire. (which is in about three weeks from the time I'm typing this). And since you asked (what? You didn't think I could hear you?), here's a photo of me wearing my new corset.

I'm not sure what I should call this one...

She sighs, seemingly content. The fabric feels wonderful. So soft against her skin. It almost feels like relief. She closes her eyes to draw herself into the warm softness. "This must be what a cloud feels like," she thinks to herself. 

Of course she's thinking to herself. She's thinking. There aren't any psychics in the room with her.

"Why can't all my clothes feel this good?" she wonders. 

Because, clothes suck.

Her warm feeling of paradise doesn't last. Soon the fiery anger of pain seeps back in. Why? What is she doing? What has she done to deserve THIS? 

Because this is fibrofuckingmyalgia, bitch. And this shit is for real.

You see, I do get some relief when I go upstairs and get naked under my soft, fleece blankets. But it doesn't last. It never lasts because I can't stay completely and utterly still for very long. The pain doesn't go away when I'm warm and cozy under those blankets. In fact, it seems to be gathering strength. And the second I move a body part, there it is, stabbing me. When I lay still and go to move, the pain is a searing, white-hot tearing feeling. (that's "tearing" as in, "tearing a sheet of paper", not "tearing" as in "tears on my cheeks"). I feel like my muscles are being pulled tight. So tight that it almost feels like they're being ripped from my bones.

The longer I lay there, the harsher it becomes. And when I finally do decide to actually move my body (as opposed to just moving an appendage), it feels like gravity has increased ten-fold. I can barely raise myself up on my arms. Granted, it gets a little easier once I get moving, but the larger muscles continue to burn and hurt.

So, we've established that right now, I'm a whiny ball of pain that hurts more when I move. But I also have a sharp, burning pins and needles feeling on my skin. Where my clothes are is the worst. And I can't just sit around naked. I know you're saying: "You're at home, you can do what you want." That's true to an extent. But I don't live alone and nobody needs to see that. "That" being me sitting naked at the computer while I type intently. Fun fact- my computer desk is in the dining room because that's the largest room in the house. (this used to be a farmhouse, its been remodeled, but it still has farmhouse-ness to it). So, I'm in plain view of every-damn-one who is in my house, near my house, walking up to my house, or anyone who is thinking about coming over to my house.

So, no naked computer-sitting.

I hope that with Autumn coming that my body will settle down. As it turns out, going to the ren faire didn't exacerbate my pain issue as much as I thought. Nope. I'm here, right now, having not been to the faire in over a week (oh geez, that hurts to type) and I still feel just as shitty as I would had I walked around for 11 1/2 hours at the faire. So at least there's that. (for the record, I didn't go to faire because its over for the year. C'mon, you know me better than that! Like I'd miss faire over a fibro flareup. Hell no. I'd go to the faire drugged up and enjoy it!).

Oddly enough, I haven't taken any photos since closing day (September 3rd). It took me nearly all week to get through the last of my ren faire photos. I took a few photos of silos and barns on Tuesday, because my dad asked me to make a silo and barn calendar. But I didn't get to those photos till after I got done with the faire photos on Friday night.

But I digress.

I know I'll be fine. I know that this pain will eventually pass. So far, I haven't taken any pain meds in the daytime (not since last Tuesday). So, that's a start. I know that my Nikon is sitting there, waiting for me. (I've kept up my 365days of self-portraits, because I haven't missed a day in three years, but that hardly counts as "photography"). The good news is that its getting darker sooner (yay!) and I'll be able to go out and do some fabulous sunset photos in a few weeks.

I'm going to wrap this up without a clever ending because the skin on my hands is starting to itch again. That and I have ice cream and I want to stuff my face. Let's all scream for ice cream.

Funnily enough, you all know that I actually did just scream for ice cream.