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.

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.

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.

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).

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.















A couple of Thursday's macro shots-







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

Opening Weekend at Bristol!

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

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

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

No.

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

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

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

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

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

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

Two years ago...

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

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

And then they asked "and at the worst?"

I replied: "Tears. I cry."

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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