The Doctor got to witness a full-blown flareup...

The only reason I was wearing pants was because I had to be out of the house. I mean, we all know the curative properties of not wearing pants, right? That's why we can get men in kilts in these modern times. (that's just my theory)

So, let me begin by saying there will be photos at the end. I'm still doing those Countdown to Bristol photos, but Wednesday, I went to a track day event at Blackhawk Farms Raceway in South Beloit. As you may know, my son rides a motorcycle (called a "crotch rocket" by the masses, apparently). He took part in a track day, hosted by Motovid.com at that raceway. That morning, a very severe thunderstorm rolled through. It rained so hard that they had to delay the start of the event. I was soaked completely through and it was a tad bit chilly. So, I was already in the early stages of what would become an intense flareup. After a couple hours, I decided to go home, because I couldn't take photos in the rain. About a half hour after I returned home, I got a text telling me it had stopped raining and it was a go. So, I went back. I was only there a couple hours before the heat got to me, but I did get a good set of photos.

And then, the next day, I had a fasting lab and a checkup at the VA hospital in Madison. That two-month long flareup I've been having? Not a flareup. Apparently, that can be a signal that the treatment has stopped working (I take 30 mgs of muscle relaxers a day, 10 in the AM and 20 in the PM). The doctors decided to try me out on whatever the generic version of Effexor is called (Venlafaxine, in case you dislike the Googles). My first question was: "Isn't that an antidepressant?" The doctor said it was and I said: "I'm not depressed." She then said that in the low dosage, it has no effect on depression, but it seems to help people with fibromyalgia and other nerve issues (like neuropathy, which I have in mild forms in my feet and hands, related to the fibro).

I looked it up online and skipping all the "POSSIBLE SIDE EFFECTS INCLUDE:" parts, I read up on the drug and what it does and how it helps pain people. The overwhelming reviews seem to like it. A lot of people gave it a 10 of 10, saying how it was the best thing ever. A few people said it didn't kill the pain, but it helped A LOT and gave it an 8 or 9 of 10. There were a very few it didn't help and even a handful of 5 of 10 ratings who had the review like: "It helped with my pain, but it made me very constipated..."

It helped with the pain but since I have to eat a bran muffin or take extra fiber, I'm going to give it a 5 of 10. Well, alright then.

I hope I have good results. Because it'd be nice to be normal again. Or a little closer to normal. I have friends now who have never seen me without pain. It'd be a new thing for them to see. I think they'd like the new me. Which is, incidentally, the old me. Which is, oddly enough, the younger me.

That's enough of the rip in the space-time continuum.

I still hurt today, but not like yesterday. I'm wearing pants today, not because I have to, but because I can. There are two weeks till the opening weekend of Bristol and I just hope the weather can settle down. We've had the most crazy weather the last few months. I can tell. I'm a human-sized barometer. Well, I'm a larger than human-sized barometer.

Now... THE PHOTOS. All taken with my Nikon D5100 and a zoom lens.
 The link to the whole album on Facebook.

Taken through my windshield and the chain link fence.



I got out of my truck for this shot.









This is Cody, Jason's friend.











Most of the panning shots (Jason's included) are straight out of the camera. The RAW files didn't need any adjustments. I resized them for Facebook and Flickr (slightly higher res for Flickr).



I think this is my favorite shot of the day. All I can think of when I see this is my high school photography teacher, Mrs. Richmond.

She had a policy in class that if you handed in an assignment late, she'd deduct points off your grade per day of lateness. I handed in my panning assignment two days late and I still got an A on it. There was a note on the back (where she wrote the letter grades) that said something like: "This was too perfect to give it anything but an A, but I didn't give you an A+." (I stood on the sidewalk on DeBarr Road, between Norman and Edward Streets and took photos of passing cars. There was an empty lot there, next to Debarr Building Supply back then).

27 years later and I still want to make her proud.










This is just some random guy. It was the last shot I took while waiting for the gate to open so I could leave.

"In case you forgot how much it can suck..."

"... here's a full-blown, all-out, no-holds-barred, knock-you-to-the-floor, kick-you-in-the-face, steal-all-the-candy, set-your-skin-on-fire, cause-muscle-spasms-all-over-the-place flareup of pain!" ~Fibrofuckingmyalgia

Sunday was an incredibly stressful day. After my last blog post where I was up all night, I ended up having a medical scare with the spouse. Here's the blog I wrote about that- "A Cautionary Tale of "What the fuck were you thinking!?"

Today's major pain increase started late on Sunday. Then Monday was almost pure hell. I've been having that all-over pain. That kind of pain that feels like you've worked out too hard and didn't cool down properly. And then you sit on the mat and cry, rocking back and forth, while wailing: "I should have listened to Coach Shaw! I SHOULD HAVE LISTENED TO COACH SHAW!" because he was always telling you to warm up and cool down properly.

All my muscles are tight and sore. They're so sore that moving and lifting things (even a thing as light as a bottle of water) makes them hurt more. When I picked up a bowl of cereal yesterday, I felt like I was lifting a heavy weight that I inexplicably filled with milk and strawberry Shredded Wheat. My skin feels like a giant bruise. A giant, hot bruise that hates clothes so much that it is making everywhere my clothing touches, burn like fire. Not just "owwww, flames all over my body" fire, but that burning and prickling kind of fire that feels like you were set on fire and thrown into a cactus garden.

I'm beginning to worry that this more-than-a-monthlong flareup is the New Normal and that what I'm having now is going to be the new normal to flareups. I hate New Normals. There isn't nothing new or normal about them. And yet, there they are, ruining your day, messing up your plans, making your clothes look out of style, and giving you a goofy haircut. Just like that aunt who went to six months of beauty college and dropped out.

I forgot what I was talking about.

So, I'm going to show you some photos. I've started making up photos to countdown to opening day at Bristol. Because everything will be alright when faire starts.

These are all links to the posts on Tumblr. And the photos are (obviously) from last year at Bristol. I decided to link to the posts because I also included the Facebook and website links for Bristol and whatever was in the photo.

Thee Bluebeard

GSM-Bristol

Sir Edgeron

GSM-Bristol "Education AND Explosions!"

Uplifting Experience

Hashtag Gossip

Don Vincenzo

Captain Frobisher

Queen Elizabeth

GSM-Bristol wants YOU!

Chastity Trollop

Sir Maxx's heavy metal high-five

Captain Hawkyns

Sir Mauldron

Huzzah, Sir Edgeron

Flight of the Raptor

Countdown to Open Wide the Gates!

*"I've got an axe! Let's open 

those gates!" ~Sir Mauldron

*not an actual quote

A Realization!

Let me get this out of the way first: Day 50 of this goddamn flareup. I've had varying days of pain degrees and today (Saturday, even though this is now Sunday) was pretty bad (because I'm calling early-morning Sunday "Saturday" because I'm still awake). And now, onto "The Realization"...

I've joked before that I'm a superhero. People have often said to me: "What doesn't kill you, makes you stronger!" and my smartass reply to that has always been: "Then where's my cape, because I'm a fuckin' superhero by now."

On top of that obvious super-human strength I most obviously have by now, I also have the Wolverine-like ability for quick healing. Not the whole "push a bullet from my skull" power, of course, but I heal so quickly that my scars don't have time to catch up and often turn out ugly and snakelike. I healed so quickly from my knee replacement that the ligaments in the front area of my knee became so tight from scar tissue that they had to put me under general anesthesia to bend my knee and break it down. (the doctor's exact words were: "Just snap, crackle, and pop, and we got you to [a] 90 [degree angle].")

But the other day, I had a realization. You see, I know some incredibly talented people through the renaissance faire. I know actors who are so beautiful, they should be models. They're also so talented in their acting ability that when they step out of those oh-so-familiar ren faire roles, they move me to tears. And I know jousters, who do an amazing show with full-impact, full-plate jousting... and they're my age! And, I know a trio of acrobats, known collectively as "Barely Balanced". And they uploaded a video of their rehearsal the other day... let's watch...




The Disabled Guy was walking by just before Cameron climbed up to his position and made me back it up so he could see it from the beginning. He stammered: "Is he- that girl- what's this called?"  I told him they were called Barely Balanced and they're the daredevil acrobat troupe that I know from faire. He continued to watch in awe as the video went on. I said: "You see that? You see what they're doing? Yeah, and then there's me- I have trouble getting up off the sofa if I sit too long. I'm like an upturned turtle. Meanwhile, Jimmy is holding everybody up with his feet, Margret is holding Cameron up with her thighs and they're juggling..."

And that's when I realized it.

I'm not a superhero.

No.

I'm a supervillain.

That's right, I don't wear a mask and cape of truth and justice. I'm at the other end of the spectrum. Just like Pulp Fiction and Die Hard were in "Unbreakable". He said: "They call me Mister Glass!" and spoiler alert, he wasn't actually glass.

But here I am, upturned like a turtle, struggling to get to an upright position so I can struggle and pull myself to my feet before I limp to the other room. And here we have someone like Margret, who juggles fire while having her body balanced and compressed between two men's dirty man-feets. She balances herself using only the muscles in her amazing abs, while Cameron juggles razor-sharp blades over her while he stands on her shins and Jimmy is supporting them both, with his giant Jimmy-feets.

And I've eaten a single banana for breakfast because the very act of pouring cereal in a bowl, adding milk, and then eating it with a spoon is too exhausting to even fathom. If I have to sit around my house, I prefer my desk chair because I can get out of it the easiest (because it has arms that I can use for support). And then we have Margret...

So, all that's left is choosing my supervillain name. Something that tells the world who I am and what my supervillain-y power is and why they should fear me.

"Muscle Spasm"... no, that's more of a sidekick's name.

"Charlie Horse"... jeez, not that either. That's a sidekick's pet's name.

"The Blub"... no way. That's the comedy relief character.

"Dead Weight"... that's a little better.

"Gravitational Pull"... there you go. That's the one.

Gravitational Pull- I create my own orbit. Call me "Grav" for short.

No, don't call me "for short", I'm already short enough.

GRAVITATIONAL PULL [Pull.... pull... pull...] (that's echoing, just go with it)- the very name strikes fear and uncertainty into the hearts of good, law-abiding, cereal-eating citizens all around the world.

FEAR ME!!

*slowly flails arms and legs like an upturned turtle*

FEEEEAAAARRR MEEEEEE!!!

"What does having fibro feel like?"

I've been asked that question a lot and I've answered it here on this blog a few times. Without looking up each individual post, I've likened the pained feeling to:

1. The early stages of a cold or the flu. The all-over aching and tiredness. That exhausting pain in your muscles that is so tender that the water from taking a shower hurts your skin.

2. Being hit by a truck/thrown from a horse. Same thing- all-over muscle pain, but with varying "hot spots" of more intense pain.

3. Being beaten with a pool noodle. All-over muscle pain and fatigue.

4. Lactic acid overload. That feeling you get when you lift weights and you feel like your muscles can't take any more, they're burning with the exertion.

And all of these things are accompanied with that mind-numbing fatigue that makes you forget things like: "Did I take my pain pills yet?" and "Why did I come into this room?", plus little things like phone numbers and your children's names.

The easiest way to explain it is as follows:

You know that pain you get the morning after you work out after having been lazy for a while. Your entire body hurts. Every muscle is tight and even the slightest physical movement causes the muscles in that area you moved to scream out a symphony of agony. Burning, intense pain that lingers for a few days. Plus, you're so tired because you decided to have a sauna and swim a few laps before leaving that gym. Now you're not only in pain, you're so tired that you keep reading the same line over and over again. Now you're not only in pain, you're so tired that you keep reading the same line over and over again. Now you're not only in pain, you're so tired that you keep... haaaa! I'm such an asshole...

So, have you got that idea in your head? Now, apply that to every single day. That's how I feel every single day. To mix it up, though, every so often my body increases the intensity of the pain- you know, just in case I forgot how good I had it with that all-over pain and fatigue. Sometimes, that intensity crank-up happens all over my body and other times, it happens in a localized area. Favorite hot spots in my case are my hip muscle- so it feels like I have a burning railroad spike being ground into my hip; the shoulder/upper back with the same type of grinding and burning railroad spike; and the hands/wrists/forearms. Those pains can come and go randomly. Some days, I feel as though my wrists have been sprained, only to have them feel fine hours later.

There you have it... how it feels to live with fibro.

And now here's some photos I took of my daughter and her boyfriend today. They were going to a wedding and wanted some nice photos, all dressed up, that weren't iPhone photos.


Kathy and Tyler (shot in their backyard)



Tyler didn't think this shot was going to turn out. But I like it.









Notice- she did not back away, she just braced herself for it.



Tyler wanted a "full body" shot of them in their nice clothes.

A new banner image...

Well, I figured since I talk about photography a lot on this blog and I've all but deleted my Pahz Photography blog... it was time for a new banner. Which is the same banner, with the text added.

I guess if we're going to be realistic, my title banner should say:

"Pahz Lives with Fibro and talks about photography, the renaissance faire, her feet, the dogs, mentions the cats now and then, even talks about the Disabled Guy and their kids, people she knows at the faire, that band she likes and does it all with various amounts of swearing and borderline and uneven humor." 

But that might be a bit much for banner text.

Pahz Lives with Fibro and talks about photography

I have a photography blog that I had to make private... I don't update it much... anyway, let's talk about this ongoing flareup and then I'll talk about photography. Because even though I've had this stupid flareup, I've been doing things, because I have to. Well, not "have to", more like "I want to do this so much that I will crawl across broken glass to do it!" and having a flareup is painful. Maybe not "crawl across glass" painful, but it isn't a roll in the daisies either (I sure hope that isn't a euphemism for anything provocative, because the last thing I need to be is provocative). Also, I feel like I should add: "& talks about Photography" to that banner.

Let's move forward...

The pain is one thing, you know... I can deal with the pain. I can stay off my feet or even starfish myself across my bed. I can take some pain medication that doesn't really kill the pain, but makes me not give a damn about it. But the exhaustion really kicks me in the teeth. It took me three days to do my Janesville Ren Faire photos because of the exhaustion. I took less than 300 photos on both days and I should have been through them by Tuesday.

So, the exhaustion just kicks me in the back of the face, like an angry Chuck Norris with nothing better to do than pick on a short, fat housewife. Now, if we combine the exhaustion with the pain, well... that just cranks the suckitude up to eleven.

During this flareup- this flareup that has lasted for approximately 41 days now- late in the evening, I start to feel a little better and I think to myself: "Hey, maybe this goddamn flareup is finally easing up..." But then when I wake up in the morning, I'm rudely and painfully reminded that no, no... this flareup is definitely not easing up. And if I'm feeling really good about it before I fall to sleep, I sometimes get awakened in the night by the pain clenching my muscles in its grip and giggling maniacally because I dared to shift myself around in bed. The mornings have been so bad lately that I can't find the energy or strength to pour a bowl of cereal. (Special K cereal bars are helpful).

So, I trudge on, because what else can I do? I'm on that bubble of "do I bother to call the doctor and get an appointment?" because that could take a few weeks, or do I just keep soldiering on because this is just a flareup and it HAS to end...

Now, in between all these random blogs of me bitching and whining my way along, I've had a few great weekends that totally made up for the terrible and painful weeks. I had the Bristol Pirates on the Tall Ship Windy on May 10th. It was an awesome day, filled with way too many stairs on the CTA, but I made it. I managed to keep up with everyone and not die from it. Not dying is always a plus. Because if I died while on the way to the ship, I would have missed out on taking those cool photos. A week after that, I had the Janesville Renaissance Faire- an event I haven't missed since it started nine years ago. And that includes 2009, when I had my knee replacement just a scant two months before.

Those two events were awesome. I had tons of fun, despite the pain. All the walking and standing really kicked my ass all over the place, but I still had fun. I also chewed down Vicodin like my life depended on it. I also sat down as much as I could (otherwise, there would have been way more photos at the Janesville Faire). But, nothing prepared me for the awesome day I had last Sunday. Sunday, May 25th, I drove down to Chicago (my daughter, Christine, and her boyfriend Casey, came along) and- like the Mother's Day shoot, I met up with my friends at one's apartment. From there (after the ladies completed their hair and makeup), we made our way to the Museum of Science and Industry. Once there, we met up with other photographers and a few more models (four photographers and six models) and we took over the old-time Main Street and had a little 1940s Film Noir-style photo shoot. It was so much fun, but dear sweet baby Jebus, I was in agony.

I don't think that second injection from the podiatrist is working for me. My plantar fasciitis seems to be flaring again, so on Sunday, I wore my Dr Martens with a slight heel, to take the pressure of that part of my foot. And at first, it was working. But almost as soon as we hit the cobblestone street of the Main Street display, all the pain I had was in my feet. The cobblestone made it hard to walk (I don't know how the ladies did it with their heeled shoes!) and I really wished I'd worn my regular boots. My heel would have been sore, but that would have been all that was sore (I think, anyway). We were all on our feet pretty much the entire time (we were there for HOURS). But dammit, I had fun and I learned a few things (photographically-speaking). My muscles were screaming every time I moved, but I still walked along as best I could. I stood still, holding my arm up in the air while I was being a light stand. I walked around, took photos and even caused one of the women to crack up while she was trying to pose all serious-like.

My feet seemed to be the source of Hell's gaping maw of fiery pain and my body aching like I'd just used all my muscles to hold a train over my head, but I wouldn't change my day. I had fun, despite the pain. I got to spend all day with amazing and beautiful people and three awesome photographers. And with all we did all day, only one person stopped to ask us what we were doing. When we said we were doing a 1940s Film Noir style photo shoot, they asked what for and I replied: "For fun, of course!" She didn't seem to believe us, but we also mentioned that we're all friends and some of us are photographers and some of us are beautiful people... so things like this happen.

So, Sunday, we left the house at 7 AM and returned around 830 PM. (I drove home in my sock feet because I HAD to get those boots off my feet) And in between were the most painful and exhausting hours I've experienced since my first week of physical therapy after my total knee replacement. But those hours were also incredibly fun and my photos turned out amazing.

So, fuck you, Fibro. Fuck. You. You caused immense pain, but I didn't stop. You caused me to disappear to the ladies room twice to control the tears you were forcing, but I still went back out there and took photos. So have a big middle finger and a hearty FUCK YOU, FIBRO. You suck, but you can't stop me from living my life. I spent four years of my life indoors and not doing anything because of my pain. I'm not going to do that again. Ever.

And now, because you knew it was coming- here are the photos from Sunday.
~The Link to the Whole Album~

And here's a selection of photos. And yes, you recognize the models from the pirate photo shoot and various other ren faires I've photographed and they are the same people who actually ask me how I'm doing and mean it. (some of the captions are mine, some are made up by Tabitha).

"Something didn't add up... this case smelled bad, like the docks at low tide, but he knew he couldn't turn back now..."



"That dame had gams that went all the way up, the way gams do and I knew I was a goner..."



"She pulled out her compact to pause the conversation and I knew I hit a nerve..." 



"She was right at home in the night. Her fear was a ruse. An act that I fell for, hard..."



You can tell that they're as smart as they are handsome by the way they use their glasses.



"She was waiting... and I had no idea I was the next one in her trap..."



"I knew that I could be straightforward with this dame. But she moved sideways and threw me off my tracks... I was hers and she knew it."



"I thought she looked like a postcard and in that moment, I knew I wanted her to stay just so I could look at her..."



"Those lips would be the death of me and I was ready for my funeral..."



"Martin J. Frobisher P.I. and his plucky assistant, his gal Friday, Antsy Drew..."

(do they look familiar? They should! You've seen them before!)



"I knew she was bored and like a cat with a fly, she was going to play with her prey. I was willing to be that prey..."



"She held onto her hat as the train picked up speed and I knew I would follow her no matter how far she went..."



"He was hooked, caught up in her web. Poor man was a goner and didn't even know it yet..."



Karen, casually glamorous-

And it goes on and on and on and on and on and on...

Yup, you guessed it, I'm still having this flareup. I counted the days and I'm at the end of day 34. Every single day is an effort to get out of bed, followed most days with a nap after breakfast. And I had several days in a row where the very act of pouring cereal into a bowl, getting milk, and then eating it with a spoon was too tiresome to complete. (this is why I keep some Special K cereal bars around).

In between all of these stupid pain-filled days, I've had obligations to fulfill. Payday errands, grocery store trips, doctor appointments, Mother's Day boat trip and the Janesville Renaissance Faire. And those days meant I didn't get a nap. But I soldiered on. I trudged through the pain and had fun (at times) and did my job (which was part of the fun).

Now, my usual "days following faire" are spent in this chair, editing my photos (I shoot RAW, in case you forgot or don't care), and not physically moving all that much. The pain is typical of two-straight-days-of-physical-activity, but this time around, the fatigue spin-kicked me in the back of the face. Sure, the pain sucked- the arches of my feet had bruises (still do) and my back and hips were just screaming in an off-key, drunken way. It took me three days to edit the photos that should have taken me two. (I shoot more at Bristol because of the jousts). I slogged through the pain at the faire like I always do- slightly whiny and sitting down as much as possible (but I did stand a lot too, because sometimes you have to). But sitting here at my desk, I was so mind-numbingly exhausted that I would sometimes doze off with my hand on the mouse (thank the photo gods for the "undo" option in Photoshop, AMIRITE!?). And I've felt hot. Like I'm slightly overheated for no reason. I have central AC. I never have to feel hot inside my house.

The weird thing happened today. We had- I'm sorry, this "we" is actually me and my youngest daughter (she'll be 21 in a month)- we had to go over to my dad's house and then to the grocery store. But, I also shampooed the living room carpet. And as we were walking out of the grocery store, I felt my Vicodin wear off. I could feel the pain come back to me in a wave from my feet all the way up. After that initial wave sucked the breath out of my chest, the burning pain settled into my hip and lower back. My hands and wrists have been extra annoying these last few days, too. (I needed to throw that in before I forgot).

Now, back to the weekend- which was wonderful, because I got to lace up in a steel-boned bodice and flounce around outdoors with other people wearing equally silly clothes and doing their own flouncing. Also, I was able to get myself a Mother's Day gift from my friend, Joshua. He makes jewelry and I got myself a necklace made of cognac amber and bloodstone with a gold and blue tiger's eye. It's more awesome in person (you can see the details in the stones, that's why). Anyway... the weekend...

The same thing that happened at the Mother's Day pirate ship shoot happened at the Janesville Faire. If someone asked me how I was, they meant it. They knew I was still in the middle of this stupid flareup and they weren't just being polite when they asked if I was doing okay.

OH- someone who shall remain nameless said: "Well, they're actors. They were probably just acting like they were concerned." And you know what I say to that? (I mean, aside from: "No, you shut up, Nameless person") I say so what? If they were acting like they cared, they were doing a damn good job of it and it made me feel a little better. BECAUSE THAT'S ALL IT TAKES SOMETIMES. Sometimes just knowing that someone believes you and gives a flying rat's ass about your well-being is enough. (for the record, I don't think they were "just acting", because they're good people, dammit).

But let me repeat that one bit- Sometimes all it takes to help someone feel better, even with physical pain, is knowing that someone cares about them. That someone believes them. Especially when you have an "invisible illness".  (In case you couldn't tell from the above two paragraphs, I live with a naysayer).

Now, just because I was AT the faire and I take photos, I'm sharing a few of my favorites. I don't care if I shared the link to the whole album up there. I'm sharing them anyway. And also, a video- of the sea captains on the water, where they belong.

Post by Patty Smith.

And now, some photos...

Anne-Drew made herself a beard of sponges. 



These are a progression...



Frobisher and Hawkyns kept talking and cracking me up. Thee Bluebeard finally gave in and laughed out loud too.



Then he composed himself and became stern...



And then THIS happened (this is my cover photo on Facebook now).



Anne-Drew and Captain Grace O'Malley



To the Point, the fight cast. 



A real life fairy and her daughter. 



A Day in the life... 



Bristol Buskin Frolic (two of many, actually)



This was To the Point on Sunday. Josh (on the left) couldn't be there on Saturday, so I told them to pose like they were fed up with him and for him to look smug.



Captain Sir John Hawkyns



Thee Bluebeard is shocked!



Captain Frobisher isn't listening to you.



Yes, you are seeing this correctly. That's the Disabled Guy at the Janesville Renaissance Faire with my sea captains. No, he didn't attend the faire. He came out to fix the treasure chest he'd made for them. And he agreed to pose for a couple photos. I had them all pose with their arms crossed and scowling, like he was.