Monday, December 31, 2012

Well, that's a fly in the pancake batter, a bee in your girdle, a wasp in your farthingale.

That's a knot in your corset laces, a scratch on your CD, a crack in the windshield, a hole in your tire, a zit on your nose, a ghost in your attic, a rat in the elevator...

I have no idea how long I could keep going. I could just throw words together and someone, somewhere, would say: "Yup, I know what you mean..."

So, to recap the pig in the hay barn, the foot/ankle/calf thing- still here. I haven't checked the weather yet, but judging by my itchy and burning skin, I think there's a storm a-comin'... Last week, I had something happened that scared me like an earthworm at dawn. I woke up and my human knee hurt. Bad. It was the sharp, excruciating pain of arthritis. It was like the day my left knee decided to give up the good fight. Bone-on-bone and it ended with a total knee replacement. As helpful as the TKR was in the long run, I don't want to go through that ever again. EVER AGAIN!

For three days, three excruciatingly painful days, I worried about the possibility that my knee was surrendering to the dark side. On the third day, I realized that the pain in my foot/ankle/calf was gone. And at that moment, I realized that the knee pain was possibly fibro related. Heat didn't help. Ice didn't help. Not moving helped a little.

Damn right it was. I woke up on the fourth day and the knee pain was gone. The foot/ankle/calf thing was back. Needless to say, I was relieved. Then I had to move and fibrofuckingmyalgia reminded me how much it sucks.

I just checked Weather-dot-com. So far, there are no storms a-comin', not for the next five days. But, our temps are dropping like a potato in a corn silo (you like that one?). How about: our temps are dropping like a roof that's been raised after the cops arrive? No? I don't like that one either. Our temps are dropping like a hoarder in Sam's Club with a fistful of coupons.

I'm just going to go ahead and post this now, before I completely lose my mind... like a Batman villain in a mirror factory.

What?

Monday, December 24, 2012

Why do the good days have to lull me into a false sense of normalcy?

I had several good days in a row. I've been a little tired now and then, but I was able to keep going. There were a couple days here and there when I said: "Hey, you don't need me to go anywhere, do you?" and then I took a couple Vicodin to take the edge off the pain (I'm still having that weird ankle/calf/foot thing). But I'd wake up each morning and get out of bed with relative quickness... then today happened.

I slept through my first alarm. Then I slept through five minutes of my second alarm. When I finally sat up, I could barely move. My entire body hurts. Head to toes. Hit by a truck? Thrown from a horse? I feel like I was run over by a horse driving a big U-Haul truck full of bricks. Why is a horse driving a large U-Haul full of bricks? I have no idea, maybe his hobby is masonry and he needs the bricks for a project. At any rate, my entire body is in burning-skin, painfully tight muscle agony. Not even 6 AM yet and I'm already curled into a question mark. Every time this happens, it is always a surprise to me. I have no idea why I let myself get into that groove like that. It makes every flareup just that much harder to deal with.

I have to go to the store today, too. This isn't going to be a fun trip. (I have no choice on the store-going. The kids who are home both worked through the night last night. Jason works third shift now and Christine had to go back to her school yesterday for a job- she gets paid for it too- and didn't get home till 330 AM, if my dogs barking was indication). Anyway, since they were both working, they'll both be sleeping and the store closes early this evening because of it being Christmas Eve.

But about those good days... It wasn't a lot, maybe four straight. But I felt good those four days. I was able to do things and able to function and the pain didn't distract me from my tasks. And then I woke up today to this kick in the teeth. It is like my body said: "Oh, you're having a decent time? Feeling good? Let me remind you again of your life." And the fibrofuckingmyalgia round-house kicked me in the back of the face and left me on the floor.

I just tried to type up a paragraph about my mom and how much this Christmas season sucks (for those who don't know, my mom died last year on Christmas night- it was almost midnight). But I can't seem to articulate the whole thing into sentences that make any kind of sense. Let's just say I want this holiday to be over. It still sucks, I still miss her, I wish I could tell her everything that has happened in the past year- even just the past six months- and I can't. And please, don't placate me with how she's looking down on me and all that. It doesn't help and it just makes me want to punch a baby. And what if that baby is her reincarnated? That's no good for any of us.

So, I'm having a hellish flareup today. Partly from stress, partly from activity, partly from that irate horse driving a truckload of bricks and Weather-dot-com alleges we'll have snow this morning. I'll believe it when I see it. "Snowpocalypse 2012" dumped a few inches of alleged snow the other day, but when I went outside to take photos of snowflakes, all I got was closeups of clumps of ice. There were no proper snowflakes.

I'm going to go take my stay-alive pills and eat breakfast. Then I'm going to the store as early as I can so I can come home and take some Vicodin. Merry fucking Christmas.

Wednesday, December 19, 2012

At least we'll get some cool photos out of this...


My latest flareup is brought to you by Massive Snowstorm That May or May Not be Snow When it Reaches Us. We've got the usual all-over body stiffness and the typical itchy-underneath-the-surface skin. And the utter exhaustion. Let's not forget the utter exhaustion.

But we also have areas of intense pain. My right ankle and calf, for instance. If I judge by my blog posts, it has been happening for almost a month now. I can't rotate my ankle in an effort to relieve pain, swelling, or stiffness because the act of moving it causes the muscles from mid-calf to my toes to contort in a Charlie-Horse-esque cramping that makes me cry out weakly and pathetically. And I'm plenty pathetic on my own, I don't need any help hitting that level. My elbows and wrists are also sore, but not as intense as that damned ankle. So when I try to get out of my chair, I make lovely facial expressions and I groan. When I have to walk, I do so as though I'm a zombie. There's groaning, an awkward shuffling, and I suddenly crave the tender delicacy of human brains. Strange, I don't recall reading that in the Fibrofuckingmyalgia Bylaws.

I FEEL PRETTY! SO PRETTY!

The only good thing coming from this possible storm is that I'll finally get to take some cool macro snowflake photos. I've done a few- we've had a few moments of spitting snow, but I need a real snowfall for it to be awesome.

Right now, at 605 AM, all I want to do is slide to the floor under my desk and take a nap. There's a couple problems with that... If I do slide to the floor, I'll have immense and comical difficulty getting back up. And, if I slide to the floor, I'll immediately get smothered by dogs. And if I slide to the floor, I'll get covered in dog hair- even before the smothering happens.

So instead of sliding to the floor and whimpering like an attention whore at an attention-deficit convention, I'm going to get up, make some oatmeal for breakfast and take my stay-alive pills.

And then... A NAP!

Also, here's a photo of tiny snowflakes from last week or so.


Snowflakes!

Tuesday, December 11, 2012

A Tumblr post-

I have a Tumblr. I'd like to say it's for my photography, and it kind of is, but I only got a Tumblr so I could follow a band that I like. They update their official Tumblr with more regularity than Facebook and their Facebook statuses get lost in the shuffle of all the other stuff on Facebook.

So, I got myself a Tumblr to keep up on their activities.

I try to keep it mostly photography related, though. I'll like/favorite/heart posts and such, but I rarely "reblog" a post. Till today. Now, don't worry. I had a pretty good day. I haven't had a terrible flareup for a little while now. Had a couple rough days, but nothing terrible.

I reblogged this photo and added a whole lotta text of my own to the bottom.

Tumblr Post

If you don't want to go to Tumblr, here's the photo I re-posted.


And, here's the text I added myself. 

Pain changes a lot.

Pain changed how I did everything.

How I dress.

How I sleep.

How I sit.

How I walk.

Pain made me change the way I go to the grocery store.

Pain took over my life.

Pain roundhouse kicked me in the face and left me on the ground.

And now I’m struggling to get back up. Every day is a struggle.

Is today going to be a good day? Is it going to be a bad day?

Is gravity going to feel harsher?

And not even important stuff- like: am I going to be able to sit at my desk to work?

No. Pain makes me ask myself, “Am I going to be able to get out of bed?”

Am I going to be able to stand in the shower?

Am I going to be able to put real clothes on today?

Am I going to be able to get through the day without chewing down extra Vicodin?

Am I going to make it through to 6 PM (when I take my nightly pain meds)?

Pain changes everything. Including me.

But I’m working my way back up.

Pain changes everything, but it isn’t going to keep me down for long. I refuse to let pain win.

Saturday, December 1, 2012

Now and then, I do a little research on my own disease

Not often, really, but enough to keep up on the latest trend in treatments and such. And in my Google searching, this blog post of my own popped up.  As I went on, a few more popped up, including this one about the rapid decline of a day from a flareup. 

The reason I decided to poke around was because for over a week, my right foot and ankle have been killing me. It feels like a severe sprain or even a fracture. It isn't the usual fibro pain. So, I need to refresh my memory a bit on whether or not that's a normal thing. You know, having one part of the body hurt but not other parts.

So, to bring you up to speed, my left hip from my waist to the hip joint, is in agonizing pain. I make beautiful contortion-ed faces when I go to get up from a chair. And my right ankle from mid-calf to the middle of the arch of my foot is screaming at me every time I move it. I can't even do simple stretches like I normally do to get rid of the stiffness-pain.

Thursday was somewhat rough in that I was halfway through the grocery store when my body wanted to curl itself into a question mark. Today- aside from the ankle thing- wasn't so bad, but it was bad enough I didn't go pick up photo prints I had done. I HAVE to go pick them up tomorrow. And while I'm out, I'm going to find somewhere to take some photos.

But if I wake up feeling the way I feel today, it'll be loose-jeans-giant-t-shirt day.

Oh, by the way, having oddly aching body parts is "normal". Nothing is really "normal" with fibrofuckingmyalgia. What I suffer through isn't necessarily what you suffer through, but of course, there are common themes. And different levels of stress... I'm tired of the stress that causes the pain. Why can't I just have the stress, deal with it, and move on? Why do I have to have a three day engagement with pain after I deal with stress?

I never really realized how much stress I was under till I had to start cutting it out of my life. And that's not easy to do. I'm stuck with one major source of stress in the Disabled Guy.

In my Google searching today, when my own blog posts would pop up, I re-read them. It has been months since I've had someone say something remotely supportive. The good news is, even with my older blog posts, when I read that someone said something encouraging or remotely caring, I remembered the incident and it made me smile.

So fuck the pain. Fuck the stress that causes the pain. Fuck it all. Because someone out there gets it.

Friday, November 30, 2012

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).


Grand Master lapel pin

Saturday, November 24, 2012

"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.

Thursday, November 8, 2012

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 love it when they make eye contact with my camera.

Wednesday, November 7, 2012

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.

Monday, October 22, 2012

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.

Sunday, October 21, 2012

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:

251 of 365+1 part 3: The masks we wear

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).

Seagulls at Rock River

Seagulls in flight

Flying seagull

From Armstrong-Eddy Park

Untitled

From Newark Bridge

Tuesday, October 9, 2012

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.

Wednesday, September 26, 2012

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

Tuesday, September 18, 2012

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!


The Captains!

Sunday, September 16, 2012

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.


213 of 365+1 part 3: My new corset!


Monday, September 10, 2012

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.

Friday, August 31, 2012

Rambling and some more rambling...

Way back in the olden days, I fancied myself a writer. I wrote- longhand, in spiral notebooks- stories, fiction and nonfiction. I have three or four completed novels that are just absolute shit. Just terrible. Seriously. In my defense, two of them were written while I was in high school. 9th and 10th grade, specifically. Not surprisingly, I failed not just 9th grade General Science, but also Biology I in the 10th grade. I would write those stories while I was supposed to be taking notes. I still remember my teacher (same teacher for both classes- Mrs. Johnson) saying to me: "I don't understand why you're not retaining any information, I see you taking notes all the time!"

Sorry about that, Mrs. Johnson. But my English, Creative Writing, and literature teachers loved me. I still remember being in Ms. Goll's class and telling the group at my table (we used to have to sit in groups to do class things) that every class I had with the Disabled Guy (who was called Jerry back then, because that's his name), I always scored a whole grade higher than he did, sometimes two grades higher than his. Without missing a beat, Ms. Goll said: "You will in this class too." (don't feel bad. He kicked ass in math class and wood shop and auto shop).

I made up my failed grades in the 11th grade. Let me tell you- being a junior in a freshman class was very odd. They didn't act like I was the stupidest person on the planet, they all just thought I was incredibly cool. And why wouldn't they? Especially with fashion sense like this...




Yes, I had a popped collar. It was 1986, what do you expect? But I digress...

Back to the purpose of today's blog post... I'm in day three of a flareup. I have no idea why other than it was sunny today and now its cloudy (yeah, thanks for that- I can't even go take photos of the moon- which, according to Facebook, is a big deal tonight). The first day of the flareup was a typical one, with the pain and tiredness. So much tiredness. I can live with the pain, but this bone-crushing, mind-melting exhaustion is really hard to deal with. I drink more caffeine to deal with it, and caffeine can exacerbate the pain issues.

The second day had the pain and the tiredness, but also the insanity-causing itching skin. Scratching doesn't help because the itch is coming from under the skin. Rubbing it, as if it were a tattoo or a sunburn, doesn't help because again, under the surface. Plus, my skin is usually really sore during this kind of thing. So even the mildest touch causes me to wince. Those are the days when I end up stripping down to nothing and laying under my two soft fleece blankets. One blanket isn't enough and it just makes me itch more. Two is just enough weight to soothe the problem.

Today, we're back to mostly the pain and some of the tiredness. And that's what I want to describe. The pain. (I am also having some itching, but it isn't as bad as yesterday). Also- all of this is on top of the fact that yesterday, I had to go to the VA hospital for an appointment and then the grocery store. And today is actual payday, so I had to run errands and stand in line at the post office. I did end up half-stripped under my fleece blankets in my room for about an hour. I didn't nap though, because I'd had two full-lead Mountain Dews that morning (as opposed to diet Mountain Dew, which is what I usually drink) and I was texting with a friend about everything from closing weekend at the faire to cute guys we know. (those two subjects aren't mutually exclusive as there are a lot of handsome people at the faire).

Side note- closing weekend *SAD FACE*

AND we're back... Pain, the pain, oh, the pain.

Today, at this very moment- 815 PM Central US time, I'm sitting at my desk. I'm typing with both hands, because I was taught how to type in the 8th grade (I had awesome hair back then too. The feathering! So much feathering!) and I don't even look at my hands. So, my pain level- with just my hands moving and my body sitting upright (because I have good posture when I type)- is about a four. I'm also two hours into my Hydrocodone for the night (three 5/325 tablets) and an hour into my Cyclobenzaprine (two 10 mg tablets). My shoulders ache like I've been lifting heavy things. My back is okay, because I'm not moving. My feet are sore, but they're always sore. My hands- the wrists and fingers, actually, are sore and the skin is itchy. The pain in my hands and wrists is a dull, constant ache. Sometimes, I clench my hands together, thinking it will help ease the ache, but it never does. Three times today, I dropped things I was holding onto because the pain caused me to lose my grip.

When I move, the pain shoots up. In my arms, the biceps and shoulders, it just feels like I worked out too hard. You know that feeling. It almost feels good when you move and you feel that ache and think, "yeah, I lifted heavy things for an hour, I AM A GOD!" except that you didn't lift anything heavy and if you tried, you'd just drop it and people would look at you and who wants that, right?

My lower back aches when I move too. As do the muscles in my butt. And my hip muscles. That's where the pain will shoot up to a ten. It brings tears to my eyes. If you see me at the faire and I've been sitting for any length of time, I'll go to stand up and wince. That's the pain in my hip muscle (or muscles, as the case may be). If you see me limping, it could be the hip muscle or it could be the feet. (I have so much -itis in my feet, plantar fasci-, burs-, tendon-, and arthr-, and some extra bone-spur issues).

The skin on my arms and hands (the forearms, wrists, and hands) feels hot. It feels like its burning. Luckily, this seems to just be localized to my hands/arms. Yesterday, it was all over. My skin was on fire.

When I'm sitting still, everything hurts at a low-level ache. When I move, it hurts at a high level stabbing/throbbing pain. When someone touches me or hugs me like this, every part of my body that their body touches feels like I'm being jabbed with something sharp. And I hate that. I'm a hugger. I would hug everyone if I could. Well, I would if it didn't hurt like I was being stabbed with a sword every time.

Wait a minute... I like to hug people, I go to the faire where I end up hugging people, and some of them carry swords or daggers. Hmmmm... I wonder if they've been trying to tell me something with the stabbing- no, no, that's ridiculous. All weapons are peace-tied and if they're not, they get zip-tied by security. Surely if someone were actually stabbing me at the faire, I'd notice, right?

Where was I? The pain, that's right. What the hell else would I be bitching about on my fibro blog?

Heating pads don't work. Ice doesn't work. Hydrocodone and Cyclobenzaprine do very little, but they take the edge off. I don't have much choice there, the long-term medicine caused me to swell up like a blowfish and even with my awesome hair, that's not a good look for me. Or anyone.

So, it looks like I'll be facing closing weekend with a steady level of opiates and muscle relaxers in my blood. And, on top of the three days of faire, (and the around 1500 photos I'll end up taking), we have to move Christine to her dorm on Tuesday. She's a sophomore this year. Ha, I say "we" like I'm actually going to be doing the moving. I doubt I'll be doing much. Sometimes, guilt and embarrassment of looking lazy takes over and I end up doing too much. But then, when we moved her out of the dorms, I didn't spend three days prior to that at the faire.

I predict that next Wednesday will be a terrible day for pain. Luckily, I'll be buried in three days of photos.

So, I'll see you at the faire. You'll know its me because I'll be dressed in garb with a DSLR perma-attached to my face.

Thursday, August 30, 2012

A little bit of good in an otherwise typical flareup day

I had to go to the VA hospital for my yearly asthma/allergy clinic torture. It isn't really torture, but I have to wear a clamp on my nose and blow my lung tissue out as hard as possible into a something-ometer to check whatever it is we check for when someone has asthma. You can tell how I pay attention to these appointments. My asthma is apparently a "very mild form" of asthma. I've known that from the start.

For those who haven't been taking notes for my life history test that will be at the end of class today- I ended up with asthma in my early 30s after having a lung infection for over five months. I have three kids and I thought I was just re-catching the same cold that was being passed around. Turned out that what I had was a bronchial infection that damaged my bronchial tubes (or, you know, whatever doctors call them). My asthma isn't aggravated by smoke or perfume, but heat and humidity just kick the shit out of me. I take Symbicort right now. Before that it was whatever the VA gave me and before that, it was Advair (which I fucking loved and they just TOOK it from me!). Also- I was skinny back then. Way skinny. Like normal skinny, actually. I wore a size 12 in jeans back then. I also got diagnosed with the genetic high blood pressure back then too. So you can just stop typing right now if you were about to tell me my asthma would go away if I lost weight. No, it wouldn't. I'd just be skinnier and wheezing.

But I digress.

At the VA hospital (I lost another eight pounds, so whoo-hoo!), they asked me what my pain level was. Without hesitation, I said, "Right now, sitting here- about a three."

The nurse asked, "What about walking around?"

I replied, "About a six. But I'm okay. I took the stairs today." (three floors, why wait for an elevator when I have this cyborg knee?).

She said, somewhat skeptical, "Your pain is at a six and you took the stairs?"

I told her I had fibro. And if I let it win, I never would have been able to get out of bed, much less do everything else I'd done up to that point. It isn't "playing through the pain". This isn't a pain you can play through. You wince, you groan, you cry if you have to, but you still go forward. Because if I let this goddamn pain drag me down to its level, I'd never leave the house. I'd barely be able to leave the bed.

She sighed and said, "My sister has that. But she's not nearly as cheerful as you are."

My asthma is just fine, by the way. Totally routine appointment. And I took the stairs down (which is a lot easier than going up the stairs, because I can reach both railings and I go down the stairs at the VA).

Today's flareup has taken the form of the itchy skin and pain (duh, of course). I feel like the best thing to do for my itchy skin is to fall into a patch of cactus plants and roll around. Seriously, every goddamn thing itches. My arms, legs, torso. Its like I have the measles or chickenpox or the "thousands of hairy-legged spiders" trying to get out. There's nothing on my skin, there's nothing under my skin. But this is driving me nuts. It happens no matter what I'm doing, so it isn't like the pain. When I stop moving, the pain eases. But the itching... the itching is fucking killing me. Along with the uniform all-over itch, I get random painful bursts of itching. So not only am I itchy, I'm twitchy too. I'm like a drug addict without their fix. And sweaty- but that's because I told the fibro to fuck off and went outside to take photos. (and, yes, I have taken all my pain meds for the evening. Thanks for asking, that was polite of you).

The pain... well, that shit has got to stop. When I'm sitting still and not twitching for my next fix or whatever the hell this is, the pain isn't so bad. Two, maybe three on that ridiculous pain scale. But, if I sit still (or stand still, whatever) for any length of time- even just a few minutes- my muscles tighten up so hard and fast that I can barely move. I wince. I groan. I contort my face into some very Jim Carrey-esque faces. It fucking hurts. I feel like a giant, itchy bruise. Oh, and that's another thing, my skin itches and it aches. I'm a twitchy, itchy, achy, sweaty mess today.

I've also, in the last month or so, discovered another fibro hot spot. My other hip. My right hip is my "usual" fibro warning system. But now my left hip has gotten in on the action.

So, here we have an entire page of bitching and moaning... what's this "little bit of good"?

My cyborg knee. I love this damn thing. And while taking the stairs today, while standing with all my weight on that leg as I leaned and contorted my body around an awkward situation, I laughed about it. No pain in my knees. And I wanna go hug my orthopedic surgeon.

Except to do that, I'd have to go back to his office and when I saw him in February, after I slipped on the ice on my deck, I told him that I never wanted to see him again. Let's hope I can keep it that way.

Now pardon me, I'm going to go roll around on some gravel or something. This goddamn itching is driving me mad.

Oh, and then there's this... I told the fibro to fuck off and took some photos today. I got about seventeen shots total (the sun was setting fast and I was running out of light behind my house, where 90% of my flowers are planted).

 Here are a few of them.


Red rose

Water beaded on a rose leaf

Pink and white rose petals at sunset

More pine needles and sunset

Pine needles

Wednesday, August 22, 2012

I had a total meltdown in public.

I'm not even sure I can frame this with humor... but let's just keep going and see what happens, okay?

Firstly, I had a great weekend at Bristol. Even a bad day at faire is still better than a good day Not at Faire. Saturday was a typical day in that I showed up, I walked a lot, I took photos, I talked with awesome people- you know, same old stuff for a day at faire. Saturday night was the RESCU Rally. The RESCU Foundation is an organization that helps ren faire vendors/performers with medical bills and having been someone without health insurance for a few short years (the longest "short years" ever), I know how scary the prospect of going to the doctor for any reason can be...

The rally is an after-hours event and I wasn't allowed to take photos. We had to change into regular clothes (meaning not our garb, so we brought jeans and such with us to change into). And the rally was fantastic. I donated two photos for their auction. The jouster in the photo even signed it, and this one. They had a silent auction (I didn't see my photos out there, so someone said that it meant they were probably doing them in the live auction) and there was entertainment and food. But the best part for me was talking to my faire family out of character. They have to be "on" all the time out on the streets of Bristol, so to see them in normal clothes and relaxed (or even drunk, in a couple cases) was pretty damn cool. And we talked about everything from the day at faire to ridiculous stuff. We left around 10:30 (after the silent auction ended, because Ceej bid on something and wanted to wait and see if she got it- she didn't- and then we had to drive the hour and a half home).

So, Sunday dawned after a mere four hours of sleep and more than fourteen hours on my feet the day before- you can imagine how my body was rejecting activity. I took the hottest shower I could tolerate to loosen some of my sore muscles. My feet were a lost cause. I knew they were going to be killing me all day. My plan of getting up to a show I hadn't seen yet wasn't going to happen. I finally got to have a real conversation with the woman who plays the queen, as herself and not the queen. She's as delightful as she is lovely.  As the day wore on, I was having a good time despite all this pain. I'd taken my pain meds around 1130 AM, I was doing fine. I shot video of the Towers game, took my usual oodles of photos and was even privy to an event (which is in video form, but both Facebook and YouTube were being uploading jerks yesterday).

There's a joust at 3 PM- the Royal Joust. I was asked two weeks ago to get photos of the nobility who sit in the dais. At the end of that joust (spoiler alert or whatever), there's a fight and they react to said fight. So, I stood in front of the dais (safely, because- duh- I shoot every joust, I know where I'm allowed to stand) and snapped photos of both the joust and the people. It was great. Then I shot on over to the Nobles Glade for the first part of the event- Captain Hawkyns being accused of piracy and arrested. (in between, I caught most of a presentation about Elizabethan clothing, which was interesting and informative- I suggest you go: "Courtly Fashion" at 330 PM).

After the incident with Hawkyns, he found himself with some free time- some very brief free time. But he accompanied me over to the tilt yard to watch the 300 Battle (which is good fun to spectate and I assume its fun for the kids involved). Along the way, we were stopped to have our photo taken and talked to a woman who was there for the first time (she sews, so it looks like she may be joining in on the fun). Then came the Joust to the Death... Which went well, as usual. Then I had to scoot back over to the Glade for the trial of Hawkyns. No problem... I kept a watch on the time. Leading up to the joust and after, I kept telling myself: "Just a few more minutes" because I needed to get some water so I could take my pain meds. I normally take my Vicodin at 6 PM when I'm home. But at faire, I take it any time after 5 PM because I'm usually busy after 530... but no. "Just a few more minutes" kept turning into longer and longer till it was well over an hour after I should have taken it.

I went to the Glade, I sat in the back to wait for the trial part to start. I took my Vicodin and then found a place to stash my basket where it'd be safe. (I don't like to set it down and walk away, especially when I have an extra lens inside). One of the cast was standing near me and he said: "Looks like you have your own little area all staked out." I don't remember what I said, probably something clever like "yeah" and he asked me: "Are you okay?"

When the tears sprang to my eyes, my first thought was: "Holy shit, what do I look like that he noticed something was wrong?"

I, of course, told him that I was fine. Wiped the tears and tried to calm down. Luckily for me, he had to go do whatever it was he does during that show, so I was able to crank it back down to 5 and not totally lose it.  Video shot, everything's fine... I put my camera back into my basket and start back up the hill for the Friends Garden where I planned on ice water, sitting down, and unlacing my bodice (which isn't all that tight to begin with as this was the bodice I had made-to-order). I started to make my way past the Guild of St. Michael- which was in the middle of a demonstration. I had to pause while they blew up a cabbage with a pistol and then started to walk again. From my right (the tilt yard), the woman who runs the whole faire was walking in my direction (she was going to the front gates, the same direction I was going). She saw me and asked if I was okay.

And I burst into tears. Right there at the faire, in the middle of the street. I kept saying I was fine. I was fine and I just needed to get up to the garden. She offered to walk with me and I said I was fine. It was my own stupid fault for not taking my pain meds on time, it was my own fault for not staying ahead of the pain, it was my own goddamn fault. And there I was, crying at the ren faire, for reasons brought on by myself. That's what was so bad about it. I knew I was going to have an issue and I knew when I should have taken my pain meds. And I didn't. It was my own fault and the tears were more out of frustration at myself than the pain.

The worst part of that whole display was the ego-crushing embarrassment I felt. Maybe if she'd been a stranger or at least not someone I knew very well. (not that I know her very well, but we know her enough that she got Ceej her intern gig). I felt the same way with that cast member. I've known him for a few years now- in the sense that we recognize each other. I don't think he knew my name till Facebook, but whatever.

It was embarrassing that I let it go that far.

I made it to the garden without any further ego-bruising and sat down, unlaced, drank ice water. And I talked. (and talked and talked) because I knew if I kept talking, I was okay. If there's one thing I do well, its not shutting the fuck up. I sent Ceej a text message, telling her that if her boss told her I was having issues that I was fine and I would explain later. And I talked. And talked. When I had to leave the garden (to go wait on Ceej), two of the henches hugged me (which made me get teary again).  Then when I re-told the whole thing to Ceej, I started crying again, but that time was out of sheer humiliation.

I'm still feeling the aftereffects of the whole thing too. My skin is still on fire, my muscles are sore and when I sit still for a long time and then move- I feel like I did before I was being treated with muscle relaxers. And so very tired. I hope I'll snap back by Saturday. When those gates open, I'll definitely feel better. Take in a game of Towers... boom- better.

It doesn't happen often, but when it does, its loud, messy, and cringe-worthy to watch. I suppose I will take comfort in that my first public meltdown was at the faire and I was among friends. That's a lot better than having the same kind of meltdown at the post office where nobody would have cared enough to ask if I was okay and would have stepped around me in line, which would have made me wait longer, increasing the pain and making more tears.

So yeah... good thing it happened at Faire.

Oh, and all that pain I was in? I still managed to get photos like these at the Joust to the Death.


Sir Maxx and the fire sword

The Earl of Essex's horse is eager to run

Edgeron faces Maxmillian

Thursday, August 16, 2012

A side-effect to giving up Martyrdom and then there's today

So, I stepped off my high horse and decided that I'd take those pain meds in the daytime, to hell with it. But there's a problem...

I feel decent and functional and I tend to do more. I stand more, I pace more, I take more photos. Which is all well and good that day at faire. But the next day? Yikes. The last couple weeks when I've taken those pain meds at faire, the Monday after, I can barely move. And I mean that literally. When I go to sit up in bed when my alarm goes off, I almost can't. And standing? That pain scale should go to 15 instead of 10. I cried when I stood up and shuffled out of my room. Cried.

I'm going to keep doing it though. My photography at faire is still improving. And with the whole "I feel better, let's move around more" thing, I've been getting a better range of photos. Last year, it was mostly about the joust and not much else. But this year, I've been asked by actors and performers to take photos of their shows/demonstrations. (I will fully admit that my favorite part is when they stay in character and ask me if I'm "the Patty Smith who takes photos" or even when I get recognized as exactly that).

I'm going to skip over the crappy Monday and Tuesday I had this week. What happened isn't important and it was just straight up ignorance about what is wrong with me and I just don't feel like rehashing it all over again.

Then we have today...

I woke up tired. I mean, dead-dog-tired. I sat here, going through the photo notifications on Facebook and could barely keep my eyes open. I couldn't figure out why. When I took the dogs out at 530 AM, the sky was clear, I could see the light from the impending sunrise. Some of my faire family were posting about thunderstorms, but most of them are almost two hours away from me.

Then the rain started. Then the thunder. Yup, we have thunderstorms predicted for almost all day today. That  explains my exhaustion. My tiredness, my sore muscles, my aching and itching skin. I'm sat here in my soft "I shoot RAW" T-shirt and giant yoga pants and fuzzy slippers. I'd rather be curled up naked in my bed under the fleece blankets, but I have stuff to do and the "naked blanket curling" isn't going to get it done.

I'm refraining from daytime pain meds, though. Not out of martyrdom, but out of practicality. I don't want my body to get used to getting a steady flow of pain meds because then I have to have my dose increased as I get used to it and I think I already take too much of it as it is.

Here I sit, in soft, giant clothes, I even put my hair up because my hair was annoying me. And I hate putting my hair up.

I'm not going to bore you with a lot of photos from this weekend. That's why I have a blog for my photography. Besides, of the people reading this, most of you have already hidden my photos in your news feeds on Facebook. But, I will share something here...

Among the many joust photos I took this weekend, I also got a lot of the nobles dancing, a lot of Fantastikal shots, and the Queen's visit to the Friends of Faire garden. And of those photos, this one is my favorite.

This is the Earl of Leicester- Robert Dudley and Queen Elizabeth (as portrayed by T. Stacy Hicks and Jennifer Higgins, respectively).


A private moment, publicly

Friday, August 3, 2012

Martyrdom and reality...

I despise taking my pain meds in the daytime. I hate it. I refer to it as "daytime pain meds" as though I take something else for the pain during the day as opposed to what I take at night. I take three 5/325 mg Hydrocodone/Acetaminophen tablets at night. An hour-ish later, I take two 10 mg Cyclobenzaprine tablets. When I do the "daytime pain meds" thing, I take two of the Hydrocodone tablets. I can drive on three. Two won't kill the pain. They just take the edge off and make it tolerable. (The three tablets don't kill the pain either, so whatever, right?).

Anyway, let me get to my point. A couple weeks ago at the faire, I was having a miserable day with the pain. Everything hurt. I don't know if I was having a flareup or if my feet were just so sore that they were making everything hurt. I was bloody miserable. I decided to take it easy that day. Arrive everywhere I had to be earlier than I needed to be and not to try and shoot extra shows. I reached the tilt yard an hour before the joust. I had my tankard full of Gatorade and I sat in the shade and just rested. A short while later, two men came up and I'd met them at the Janesville Faire. Nice guys. In talking to them, I explained why I was down there so early and not taking in any of the other shows or demonstrations that were around the tilt yard.

It was the pain, you see... the amount of pain I was in just sitting there was bad enough to complain about. Most times, as long as I'm not standing, my pain is tolerable. But here I was, bitching and griping about this goddamn pain. To two people I barely knew. And I hate doing that. I don't even like to do it on Facebook. I try to keep my whining to a minimum on my status updates. I'd rather be known as funny, insightful, silly or even "that annoying chick who talks of nothing but the ren faire and photography".

In the middle of talking to those guys, I stopped and said, "I don't know why I'm complaining so much, I have pain meds in my pouch, I should just shut the fuck up and take them." And I did. I took two of the Hydrocodone and one Cyclobenzaprine (muscle relaxer). And by the time the joust started, I felt good. The two different pain meds did their job. They took the edge off the pain and they made my muscles stop aching all over. I could function again.

A few hours later, when the pain meds wore off and the pain was creeping back into my muscles, I had one of those "a-ha" moments and I don't mean the band. *crickets chirp* You know, the band A-Ha? Take On Me... no? What are you, twelve? Geez, people!

Where was I? Oh, my palm-to-the-forehead moment. My entire recovery from the total knee replacement, we were told: "Stay ahead of the pain, stay ahead of the pain, take your pain meds." And those were some damn good pain meds. I was on the Oxy-cocktail. Oxycontin and Oxycodone. I don't remember now which was which, but one was a twelve-hour time-release and the other was a four-to-six-hours bridge drug. Sorta like backup.

I decided that if I which to continue to function at faire and not only have a good time (because that's what faire is all about), but to also take fabulous photos of my friends doing what they do best- I had to stay ahead of the pain. I've thrown aside my stupid "I hate taking daytime pain meds" mantra and stepped down from my martyr pedestal. At the first inkling of pain, I take two Hydrocodone and one Cyclobenzaprine. Usually around noon, which is seven hours after I wake up and still seven-ish hours before my normal dose of "nightly pain meds".

I really have no idea why I didn't just accept it sooner. If I'm in pain then I need the pain meds. That's the whole purpose of having those pain meds- to help curb the pain. I'm not addicted to my pain meds, I take them for a specific pain reason and they are prescribed to me by the same doctor. Granted, my body would go through withdrawals like an addict's if I ran out, but mentally, I'd be able to cope better because I am not addicted in the actual sense. There's an article somewhere that explains the difference between being addicted and being medically dependent, but you know how to work Google if you're interested in reading it.

I still flinch at the thought of having to take daytime pain meds. But at least now I realize I need them and that there isn't a goddamn thing wrong with me taking them. I have several types of chronic pain. Fibrofuckingmyalgia is wide-spread. The various foot problems are localized in my feet. My knees are fantastic though. Now I just need to look into getting some Cyborg feet installed and I'll be running all over the ren faire.

By the way, I've taken so many photos in the last four weekends. I have almost a thousand photos in my Bristol set on Flickr. And that's not even ALL of the photos I've taken. I try to get my photos edited on Monday and Tuesday. I do them in order, so I can keep them straight by day and show and whatnot. This week, though, was a payday week and I had to leave the house for two days, interrupting my photo editing. I didn't get through all my faire photos till Thursday around mid-afternoon. So what did I do? I went outside with my macro lens and popped off about 35 shots of flowers in my garden.

Why is that important? Because I've been having a flareup for the last three days. During a flareup. In macro. And I don't use a tripod. And all that pain I was in at faire? I still managed to get some damn good photos.


In the Nobles Glade before the dancing

Oberon, King of the Fairies

Air Dirk!

It was "intense and handsome man" day in the Friends Garden

Untitled

Sir Anders of Denmark


A couple of Thursday's macro shots-

I love this shot.

The purple bloom

White and pink geraniums

So, in your face, Fibrofuckingmyalgia!! It makes me wonder what the hell I could do if I wasn't in pain.