One day can make a lot of difference...

My body is taking its sweet-ass time adjusting to taking muscle relaxers in the morning. Most days, around 7 AM, I crawl up the stairs and back into bed. Sometimes I nap. Sometimes I lay there in a sprawled-out, odd-shaped lump and stare at whichever marathon the USA network has on that day. Then, after about an hour, I can muster the energy to take a shower.

Monday night, I got up to drag myself up the stairs for bed. And I realized something. That agonizing pain in my hip- the pain that felt like my muscle was being pressed into a cheese shredder slowly, as if by the Turtle in the "Bugs Bunny" cartoon- was gone. GONE. I felt... GOOD. Tuesday- all day- there was no pain in my hip. And I realized that it had taken a little over two weeks for the daytime muscle relaxers but IT WORKED!

ALL HAIL OUR NEW OVERLORD! CYCLOBENZAPRINE, I LOVE YOU SO MUCH!

Then, Wednesday happened.

I woke up Wednesday, I took my drugs. I went on with my day. And in the evening, I had to drive to my dad's house so we could go to a town about an hour away. He asked me to go along and take photos. If you're on my Facebook or Flickr, you already know- but he's a Mason. His lodge was bestowing a 60-year certificate on an 85 year old man. I'll spare the long (but interesting) story for now. We didn't get back into town till 9 PM. And I had to drive, so I didn't take my muscle relaxers with me. And when I got all the way home, it was too late in the evening for me to take them. I had my Vicodin, but no muscle relaxers.... which meant I was awake till 3 AM.

And because I didn't fall asleep till 3 AM, I didn't get a Thursday morning dose. When I started to crawl out of bed, the pain was back in my hip. And that was just the most painful part of my body. The rest of it was achy with the thrown-from-the-horse ache.

And Thursday was our big grocery shopping day. I was merely tired when we left the house. By the time we were about 1/3 of the way through our grocery shopping trip, my body started to let me know it wasn't happy. It let me know by roundhouse kicking me in the back of the face the way Dalton roundhouse kicked the thugs in the back of the face in his stylishly loose trousers and impeccably feathered hair. (if you get the reference, you know why I love you). My walking pace slowed significantly. By the time we were done, I was practically crawling. When we got home, I didn't even help unload the groceries. I just sat down and tried not to curl up into that whiny question mark.

Thursday night, I took my normal dose. Friday morning (RIGHT NOW! Seriously, as I type this sentence, it is 608 AM), I took my normal morning dose. And now I'm just waiting for it to kick in. I'm in a lot of pain today. A lot. My hip is a burning, shredding pain. My skin is itchy and on fire.

One day without muscle relaxers and I feel like I did two weeks ago. Bleh. Stupid pain. Stupid itchy skin.

OH! Speaking of the itchy skin... I HAVE A THEORY! I do! Now, just bear with me...

I scar ugly. So does my dad. Our surgical scars look scary. Regular scars never seem to fade. When I had my total knee replacement, my body said, "Oh, you're going to cut me open? Well, I'm gonna heal so fast that you won't be able to bend your knee..." And less than six weeks after my surgery, I needed a manipulation under anesthesia. That's where they basically knock you out and bend your knee for you, to break up adhesions. (simply put- your body creates scar tissue so quickly, it causes you to not be able to bend).

So, I heal quickly. Which is good (except when you have a total knee replacement). I'm apparently Wolverine! You didn't know, did you? Yeah, the movie they made about me changed some things to make it a little more entertaining. Trust me, you'd rather see Hugh Jackman shirtless than me. Although, they did nail my hairstyle perfectly.

My theory on this itchy skin thing... usually the day after a flareup, I feel this itchy thing- and it is under my skin. And it feels like when you have a small injury and it gets itchy as it heals. Last week, I stepped on a piece of glass that was apparently on the floor for eight months (You know what I mean, right? You break a glass, you sweep, you vacuum, you mop- several times for months... and then one day, you step on a tiny piece of glass anyway). It wasn't very big, but I had a heck of a time getting it out of my foot. A day or two later, that part of my foot itched so bad that I wanted to use a porcupine on my foot to get rid of the itch.

Maybe my skin itching this way after a flareup is my "overactive nerves" trying to heal. I didn't say it was a great theory, but then fibrofuckingmyalgia is a stupid disease. That's right, I said it. STUPID DISEASE!

Oh, and here's a photo of what I did on Wednesday night. The story is in the description of the photo. (if you click the photo, it'll take you to Flickr).

"Take it easy on days with flareups", "Don't overdo on days you feel good"...

But if you exercise, you'll feel better!

What?

Really?

We're supposed to take it easy on flareup days. Like we have a goddamn choice, right? And we're not supposed to do too much on days we feel good, lest we end up paying for it the next day (or later that day or ten minutes from now, not now, but now. NOW!). And we're constantly told if we take part in a regular exercise routine, we'll feel better.

So... which is it?

I already don't do much on those days I'm having a flareup. And that's not a choice. I sometimes cannot sit upright from the pain. Sometimes, I'll start out the day fine and end up curling into a question mark that whines a lot. I don't have a choice in "taking it easy". When I'm in full-blown flareup mode, I can't do much of anything. Sure, there are days when I'm having a flareup that I push myself through. There are some things that can't wait- cooking dinner, going to the store, whatever else it is that one does when one's adult-aged kids no longer live at home and the spouse is disabled.

And then we have the good days. The days where I want to run down the street shouting: "I FEEL ALIVE! ALIIIIIIIIVE!!! ALIVE!" and leap over fallen trees and small children. But I'm told not to. I'm told to take it easy and not overdo things. I get the logic. If I feel good and I try to cram as much activity into my day as possible, it can come back on me and cause me days of agony. I've lived through that (ren faire season, anyone?) in real time.

Most of us can feel a flareup coming on. And we know that we need to chill when that happens. I know when I feel an impending flareup, I try to take it easy. (for some reason, I keep thinking about the Eagles, weird). I don't want to do anything to hasten the arrival of said flareup. Because maybe I can keep it from becoming a full flareup. Just maybe...

And the doctors... "You will feel better if you exercise on a regular basis..."

How am I supposed to do that? I'm taking it easy on days I don't feel good. I'm taking it easy on days when I feel good, so I don't trigger a flareup. And I'm taking it easy on those borderline days that might lead to a flareup. When the hell am I supposed to exercise? When am I supposed to go to the grocery store? What about dinner? I don't know about you, but we can't afford to order takeout on those days when I don't feel like cooking. Contrary to popular belief, the Disabled Guy can cook, but he can't cook a lot. He hates to cook- you would to if you only had the use of one hand and brain damage that makes multitasking nearly impossible.

Basically, I should be floating in a salt water solution inside a sensory deprivation tank till those times when I need to get up and do stuff. But even that won't work. I have tinnitus. If I were to float in a sensory deprivation tank, the loud, incessant buzzing in my only hearing ear would drive me mad in an hour.

And just how am I supposed to take photos if I just sit here, taking it easy? Those photos don't take themselves, you know. I actually have to get off my ass and hold up that camera.

I suppose I should get to work on that whole levitation thing.

And, just like that... All better...

I posted a blog yesterday about how I'm "lucky" in that I don't suffer from real depression. I even said at the end of it how I'd wake up and feel a lot better. That was sort of true and sort of not true. I had a fasting lab today and was unable to eat food or drink anything aside from water till almost 2 PM today. (then I ate a banana, a Special K strawberry cereal bar, and guzzled a 12 ounce can of Mountain Dew).

And I really AM lucky, because I don't have depression problems. That's not to say I don't have bad days, as yesterday's blog post clearly states. I miss my mom every day even though when she was alive, we'd go days, even a couple weeks, without even talking (especially when they were traveling, because they were busy). But even though I miss her, I'm not sad all the time. I only get sad when I think about it. And if I keep talking about her now, I'll get teary and choked up about it, so let's stop. But, I woke up today and my mood is fine. Not depressed at all, not like yesterday.

I had a followup appointment (I think all of my appointments are followups nowadays) today. My labs are all fine. My cholesterol, for once in my life, was a little elevated. We're going to hold off on the medication part though, to see if it improves on its own because I just recently started to exercise on a regular basis again. I really like this doctor, because she doesn't just look at my new test results, she'll bring up my records for years and compare them to how I was when I was still thin, pre-knee injury, pre-fibro, pre-everything. And even after the sedentary lifestyle was forced upon me, my blood stuff stayed pretty good.

The important part was the fibro pain and everything I had trouble with this summer. We're both fairly certain my issues with all those terrible flareups were all related to the weather. And she made me remember something- last year, at the faire, I took photos of every joust, but I did so from a seat in the stands. I sat for every joust (in almost the same spot every time- Sir Maxx's section, of course). This year, I only sat if I was in the dais with Jane the Phoole (which happened only a few times) and most of those times, I got up anyway and took photos, leaving my guests to enjoy Jane's conversation and the joust action.

So, because of the new camera, I was on my feet probably 80% more than I was last year. And that would explain the pain that I had for those days following faire. I told her what I started doing with the pain meds, mostly on faire days. I'd take two or three of my Vicodin pills and one muscle relaxer and that would help me get through a day of walking up and down the Cardiac (the hill one must walk up when leaving the Nobles Glade). I told her I always felt a little guilty about the pain meds during the day, because I normally follow my prescription orders to the letter. I don't like to do things outside of my doctor's orders, because if I'm out there doing what I'm not supposed to, how the hell can they help me get better?

Well, she changed my prescription on my muscle relaxers. Now I take two at 7 PM ("before bed" is what the label says), and I can take one in the daytime "as needed". I'm not supposed to take more than three in a 24 hour time. So, now I'll have the relief without the guilt. And who needs all this extra guilt anyway?

She also gave me a thumbs-up for the newly-started workout. I don't want to go into too much detail about it, just in case I end up quitting from the pain. Let's just say things are going along okay now. I miss the intensity of the four-mile-a-day thing I used to do, but thanks to the fibro, I may not ever get back to that level of activity. But, I can at least be a little more comfortable. And then The Cardiac won't kick my ass every time I have to leave the tilt yard.

And only because I've been blathering on about it, I leave you with a joust photo. Because I can.

Taso Stavrakis (Google his name, really). He played the Earl of Essex and he's riding Blaze. And he's looking right at me.

I'm "lucky"... if you can call anything "lucky"

I'm lucky in that I don't have depression with my fibro. Turns out that depression and fibro go together like... well, like two things that go together well.

But I'm lucky. I don't have a problem with depression in the actual sense. I'll have a time when I don't feel all that great. Maybe even just have a bad day, but I almost always wake up the next morning feeling fine. And if you know me like I pretend you do, then you know I can also get through almost anything with the use of humor.

Those days, though. They suck. I can't imagine how people live like this on a daily basis. I wake up every morning with the outlook that it'll be a good day and usually it is good. You know how I go a couple weeks without posting a blog or whatever? That's because nothing is happening. At least, nothing worth noting. My pain has been fluctuating but not wildly like it was these last few months. I did have a moment of clarity and I can't remember if I mentioned it or not and frankly I'm too tired and in a crappy mood and don't feel like looking it up to see if I did  mention it or not.

Someone asked me on Facebook, during one of those bad pain days, how it is that I can go all day at the renaissance faire. All day walking/standing/talking/being around people. It isn't a secret. I'm chewing down pain meds like I'm Doctor House and I'm in the thirty-seventh minute of an episode (you know, shortly before he gets his epiphany that leads to saving the patient). On a typical ren faire day, I'll take three Vicodin and one muscle relaxer between ten AM and noon. Then at 530 or 6 PM, I take two or three more Vicodin. I keep a fairly steady level of pain meds in my blood at the ren faire. Or at least I try to anyway.

Well, today's pain isn't all that special. Just the usual kind of pain. I was sitting in the living room for a while today (catching up on DVR shows from last week) and every time a dog stepped on me, it was like a fiery railroad spike had been jammed into my muscle. That's one thing about small dogs I'm not thrilled with- how pointy their goddamn feet are.

No, today's problem is mental. I feel absolutely useless. I contribute nothing to this household. I don't make any money. My "photography business" isn't a business so much as it's just me taking photos. And that isn't really so much of an issue, because while I'm not making money, things are still happening in that area and it could lead to making money. You gotta work to get there, it doesn't just fall into your lap.

But it doesn't help this feeling. I don't feel like I'm important to anyone's life. I feel like I've had a mirror held up to me and I see myself as I always see myself... and now other people see it too. I feel like I've been faking everything and now someone has discovered my secret and I'm terrified others see it now too. "Oh, she's not an adult, we can't take her seriously." ... "You're not an artist, we can't take you seriously." ... "You have nothing to offer us, you don't matter."

Deep down, I know that when I wake up in the morning, I'll be fine. Deep down, I know I'm fine. But this feeling right now, it sucks. I almost prefer the physical pain over this crap.  I can't wait till I fall asleep tonight. Right now, I don't even care about the doctor appointment tomorrow. Normally, I'd be complaining my way through the fasting lab. But right now, I just want today to be over so I can get on to tomorrow. Tomorrow, where I know I'll feel better.

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.