I see what you did there, Fibro...

I've been doing that thing I do where I plan on updating the blog, but then I don't because I forget or I procrastinate till...  I forget.

I had a bit of a flare up on a perfectly wonderful, sunny, gorgeous day. It was 65° Fahrenheit and just lovely. But it was a weak-ass flareup. It was mostly fatigue with a bit of pain. The morning dose of Vicodin took the edge off the pain. The fatigue stuck around and got worse as the day wore on, like a normal bout of flareup fatigue.

And I didn't really know why, so I checked the weather forecast. Well, let me show you a photographic representation. I've been doing the 365 self-portrait project since 2010. I've recently started my sixth year. I'm in a group on Flickr that calls itself: "We're Here". We pick a theme for a day and then we "invade" a group with our photos of that theme. The theme for that day- Sunday, March 22nd, was "Lazy Photography" and the description was: "The great photographers venture out into the world, fearless and tireless. They search for opportunities, and even create opportunities. god bless 'em. But this group is for when you'd rather park yourself on the couch or on the porch and wait for an opportunity to come to you. and if it doesn't come...just take a picture of your foot." 

I'm a literal smartass, so that is exactly what I did- I took a photo of my foot on the swing on my back porch (which is a massive wooden deck, actually).



And, this photo is less than 24 hours later-



Is it any wonder I was having a flareup?!

Yesterday, I was having one of those low-grade flareup feelings. I felt like crap, but I could at least sit down and stand up when I needed to... And I had to go to the store. I managed to live through it, the fatigue kept trying to pull me down to the floor, but I managed to get home.

A few hours later, my son came home from whatever it is he does when he's not home and not at work. He had two of his friends with him and the girl he's dating- I'm not sure if we're calling her his girlfriend yet or not, but you know... Anyway- the kids- and by "kids", I mean "adults in their early 20s" wanted me to take some photos for them. My son rides a sport bike. You and I probably know them better as "crotch rockets", but they don't like it when you call them that. So, of course I said I'd do it and we left the house to do some photos on a newly constructed dead-end street in an industrial area (no traffic). The girl didn't want to be in any of the photos so she and I sort of hung out while the guys did their drive-bys so I could do panning shots and so on. During the course of our conversations, I told her this about my fibro- "I could either sit at home and feel like shit, or I can come out here, take some cool photos of you guys and still feel like shit. So, I'm here." (and I said that's how I survive the faire on flareup days. I can sit at home and feel bad or I can at least be somewhere fun with great people). I spent a couple hours on my feet, walking around this dead end street (it was a weird dead end, the long street gave way to a 90° turn and that part ended about a half mile up. But there were no buildings around it, just an open field on one side, a highway at the end, and a pheasant farm on the other side).

Then there's today. Today, at 4 AM, my body decided to wake me up. Wake me up out of a dead sleep. Because why the fuck not? I stayed in bed till 430, trying to trick myself into falling back to sleep, but it didn't work. Fibrofuckingmyalgia will not listen to reason. And when I tried to move, my body was quite sure that was a bad idea. It took me ten minutes to get out of bed and get downstairs. After I did my morning stuff (breakfast, reading news, catching up on Facebook, trash day, dogs out), I went back to bed to try and take a nap. It was a crappy, less-restful 90 minutes of semi-consciousness. And today is the first of the month, so I had bill-paying errands to do. I struggled for everything today. Showering, getting dressed, going outside, trying to get into the vehicle (mid-size pickup truck), standing at the bank, walking. Breathing. Blergh.

I took my usual morning dose of Vicodin. I did all those things and at 2 PM, I took two more Vicodin. And about 45 minutes later, I felt the edge slide off the pain. I was still in pain, but at least I didn't have to struggle to get up out of my chair. And here's why-

Tomorrow's got rain (a 90-goddamn-percent chance of rain), then we just drop all the warmth and go back to cold temps. For a freakin' day. The earlier weather (that I didn't screen cap) was predicting snow on Friday, so I suppose I should be glad that we're just getting rain tomorrow and cold on Friday.

So, the Generic Cymbalta isn't an all-out miracle, but damn, there are a lot more good days than bad now. I'm going to accept that. Because a little flareup that goes away after a couple of hours is doable. And today's shitty flareup? Well, it sucks, but it also has a clear reason (the weather) and I feel like there's an end to it. Compared to last Spring when I had a "flareup" that lasted for months- I'll take it. But I see what you did there, Fibrofuckingmyalgia... April 1st- haha, sucks to be you, human! BOOM. Flareup on April Fool's Day.

And because I know you're wondering, here are a few shots from yesterday with the guys.




This one is called "Girls on Instagram be like..."











This is yesterday's 365. I had Andrew (kid in red) hold the camera because he was the tallest. My son is in the black helmet behind me with the girl he's been seeing, and Reese is behind them. And I am woefully underdressed for this party.

And now we're going back...

Back to the muscle relaxers and hydrocodone cocktail.

I didn't call the doctor after my last blog post. I waited a week. Just in case... I wanted to give the new dose time. Well, I called yesterday. She called me back today. And for now, we're going back to the Flexeril (cyclobenzaprine) and Vicodin (hydrocodone) that I've been taking.

Now, if we recall, I was on Gabapentin for a while and it made me swell. Then we went back to the muscle relaxers and those worked till last Spring when they stopped working. Speaking of swelling... after the swelling from the Venlafaxine went away, I went down a jeans size. So, hopefully, these will work for me while we wait on the request for Cymbalta. (I just saw my friend roll his eyes again- and I'll see it in person when I see him next week)

I'm all for it, if it will get me through Teslacon. That's in a week and two days. And goddammit, I want to have fun. (who am I kidding? I'm going to have fun even if I'm in pain because TESLACON!).

I've had a couple more late nights since that last blog post (last night was one of them) and my pain has been off the charts on a few days. (more than a few, most. Most days I feel like hammered shit). Today, most of the pain is focused in my hands and wrists. And one shoulder, because fuck being able to use my arms. (I still have to finish up some costume stuff for Christine and Casey for Teslacon). In fact, typing is killing my right hand/wrist right now.

So, to wrap up this short update... here are some photos from my Instagram. Yeah, I have one of those too.

My sofa companion for season 2 of "House of Cards". #chihuahua #dog #pet

A photo posted by Patty (@pahz_on_instagram) on Oct 10, 2014 at 4:24pm PDT

Moved to the bigger sofa, got a bigger companion... well, this one and two more Chihuahuas as well. #dog #germanshepherd #GSD #pet

A photo posted by Patty (@pahz_on_instagram) on Oct 10, 2014 at 5:21pm PDT

Luna... this is what happens when your human is a photographer. A typical "stare while human eats" turns into a dramatic photo shoot. And then INSTAGRAMMED! #chihuahua #dog #pet #shadows

A photo posted by Patty (@pahz_on_instagram) on Oct 10, 2014 at 10:40am PDT

Busted. He caught me. #chihuahua #dog #pet

A photo posted by Patty (@pahz_on_instagram) on Oct 10, 2014 at 12:54pm PDT

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.