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-

It shouldn't have been unexpected, but it was...

"Plans? You-chuckle-you had plans?!" [insert maniacal laughter]

That's what Fibrofuckingmyalgia said to me today. I started out the day with such high hopes. I did. We finally got past our bitterly cold weather. A couple weeks ago, I unplugged the space heaters that we have in the kitchen to keep our pipes from freezing. And I decided that it was time to go ahead and put those heaters away for the year and put all the crap back in the cabinets so I could have full access to the rest of my kitchen. (we take most of the stuff out of the cabinets when we use space heaters, lest we become a statistic).

I had to go to the store today. I had to. The youngest kid will be home this week for Spring Break and I didn't have any food that she would need for, you know, living. She's been super-stressed out, so I told her I'd get comfort food ingredients. (she even quoted me on Facebook with that fact). So, I had to go to the store.

And the store was crowded. And it ended up taking me a lot longer than I expected. So, after zig-zagging the most giant of all giant grocery stores, I got home, got my stuff inside, put away the stuff that could be put away... and then my body said: "You're done. Sit down. SIT DOWN NOW OR I WILL DRAG YOU TO THE FLOOR LIKE A WEAK MUNCHKIN!"

So, I sat down. I spent the next couple hours trying not to fall asleep sitting upright. I didn't want to take a nap because I don't want to screw up my sleep cycle (again). After sitting for a while, I had trouble getting up. And by "trouble", I mean that I rocked back and forth and flailed like an upturned turtle till I had enough momentum to thrust my body into a more solid position for putting my feet on the floor.

On top of this mind-numbing exhausted feeling, I now have pain. All through my arms and legs. And by "legs" I mean "the entire area from my waist down and a little bit of my waist-up, but not all of it".

The weather changed again- it had gotten warm. So warm that not even a jacket was needed yesterday. Today? Its about 20° cooler and windy. Every time I take the dogs out, I can feel the cold seeping into my muscles.

All this time, while fighting the pain, my brain keeps fighting with the exhaustion. My attention span is almost to Goldfish Levels and I can't focus even on "The Princess Bride" which came on cable while I was upturned-turtling. (they're at the wedding scene- "Mawwage. Mawwage is what bwings us togevah today"- and I don't even care. Dread Pirate Roberts is here for my soul and he can have it. Maybe he can do something with it).

On top of all that, it looks like its going to be a gorgeous sunset evening. And I really want to go get some photos of that. But I also don't really want to stand outside and let the cold make my fingers so stiff I can't move them. But it looks like its going to be really pretty out there.

What I need right now is for clouds to move in and block out the sun- that way I won't have to go take photos of it. I also need a chef to come cook me dinner- that way I don't have to go cook dinner for myself. I also need a maid- that way I don't have to reassemble the lower cabinet areas of my kitchen by myself. And I need a dog walker- that way I don't have to take the dogs out.

I guess I should go ahead and charge my camera battery. And find something for dinner. And take the dogs out.

The cabinets can wait till tomorrow.

Or the next day.

EDIT- the clouds rolled in and I decided not to drive out for sunset photos. 

I never know how to answer this question...

"How are you?"

You would think that would be easy to answer. But, I have to go through a quick list in my head before I bark out my reply.

Does this person know me?

Does this person know me well enough to know I have fibro?

Does this person even  care that I have fibro?

If this person knows I have fibro, are they asking me how I am politely or are they concerned about my fibro?

The other day, I had to go with the Disabled Guy to Home Depot because he was picking out paint. I didn't want to go, but I also didn't want seventeen phone calls in a row of him asking me various paint colors that all had ridiculous names and didn't look anything like their names would indicate. And we were a few miles from home when I realized I didn't take any Vicodin before we left the house.

Does he care? Not really. (he doesn't even ask me how I'm doing or feeling).

So, let's talk about my pain...

I am in pain every single day. Every day. No matter what. And I would rank that everyday pain at around a three or a four. I can tolerate it. I don't always need to take something in the daytime (other than my one single muscle relaxer in the morning- which is prescribed for me in that dose- one 10mg tablet in the AM, two 10mg tablets at night).

Now, this isn't going to be as easy as "the pain is [this number] on the pain scale" because even a good day can turn bad even if my pain levels don't increase. I might swell up. My skin might start to itch. I might have a hot-spot flareup. The fatigue might set in and drag me to the floor.

When I refer to "having a flareup", I actually mean that my pain is so bad that I must take something in the daytime. Pain. Extreme pain. Pain so bad that air brushing by my skin hurts. If something touches me, it sends electrical jolts of pain in a shock wave from the part of my body that got touched.

When I refer to "my skin itching", I actually mean that I feel like my tendons and muscles are trying to escape through my pores. The itching is under the skin, as if my muscles are on fire under the surface. Scratching doesn't help- it actually hurts. Sometimes rubbing the skin with the flat of my hand helps, but who can do that ALL OVER THEIR BODY? Not me.

Some days, the only solution is nudity and two fleece blankets. I'm not telling you anything you haven't read before. But I just wanted to discuss my pain... Mostly because I've had more flareups this year than I have since they started treating me for fibro.

I suppose the good news is, that despite having pain issues at the faire, I haven't had a meltdown like I did last year.  We've got two weekends left in this season. It has gone by way too fast again. Except for Fridays, which crawl by at a snail's pace.

But, to answer the question: "How are you?"... well, that depends on a few things. But let me tell you this- no matter what I answer (which is almost always: "Fine"), I am in pain. I am in enough pain that normal people would cringe. I am always in pain. Always. If I'm standing up, sitting down, or if you somehow end up in my bedroom and I'm in bed under two fleece blankets and my clothes are not on my body... I am in pain.

Despite that pain, I still take awesome photos. Because I can. Because that's what I do. Because I love to take photos. And I love my subjects (people and animals)... Because when I take photos, I feel like I'm contributing to something. Because when I take photos, I can forget how much my body hurts for those few minutes. But mostly, I just love doing it.

I can hear Mother Nature laughing maniacally right now...

We've had the most screwed up weather this year. We went pretty much from Winter to Summer with only a blip of Spring in between. I had our heat on one day, only to have to flip it to the AC the next. Not an exaggeration. And the rain. So much rain. Right now, my Weather-dot-com page has seven, yes, seven flood warnings. We're safe, so don't worry about that. We live uphill from the river and if it gets so high it reaches us, we'd already be on the ark.

Shockingly, in the past week or two, the near-constant rain and thunderstorms haven't caused me to be in agony. In fact, I haven't "felt" a storm coming in all that time. Normally, a weather front will bring a flareup with it, causing me to whine and awkwardly twitch and outwardly bitch about it. Don't get me wrong, I still have the muscle pain and stiffness. After sitting still for longer than a few minutes, I'm so stiff I can barely move. And I have those hot spots (right now, left hip, left ankle, left foot). And if I try to lift anything, I have that sharp, lactic-acid-like pain in whatever muscle I'm exerting.

That sounds terrible. But it isn't, really. I can function like that and usually I can function like that without the benefit of daytime pain meds. One thing that the ever-changing weather has done for me is keep me utterly exhausted. The fatigue that comes along with fibrofuckingmyalgia is almost zombie-fying. Add to the top of the mind-numbing exhaustion the dogs who are terrified of thunderstorms. The last three nights, Gypsy the German Shepherd who will eat your face has been so freaked out, she pulls the gate down and comes upstairs. She braves the cats to get to my bedroom. Yes, its true. Gypsy will eat a person's face if she perceives them as an intruder and that very same dog is terrified of the cats. Keep your giggling to a minimum, she's sensitive about it.

So, for the last three nights, I've been awakened at various times by a terrified German Shepherd strong-arming (strong-pawing?) a well-set, metal-barred gate to get upstairs. The Chis are afraid of thunder too, but they're also more afraid of the cats than Gypsy. You would be too if the cats were bigger than you. Let's turn you loose in the savanna and see how thrilled you are when a tiger decides you look delicious. Yeah, now you feel bad for laughing at them, don't you? (don't... I laugh at them too).

While it seems I've gotten a respite in the flareup side of things, Mother Nature has given me the zombie exhaustion. And... the itching skin. And this itching isn't just that "millions of hairy-legged tiny spiders trying to breakdance out of my body through my skin" feeling. No, this millions of hairy-legged, breakdancing spiders are also on fire. My skin feels hot to me, but when I actually touch it with my hand, it feels normal.

Since the dogs woke me up at 3 AM today, I'm going back to bed for a nap. (and it isn't even 6 AM here yet!).

One thing that Mother Nature's menopausal mood swings have brought is macro raindrop photos. Enjoy. I know I enjoyed the momentary distraction from the fibro to shoot them. (there are more, if you click the photo, it'll take you to my Flickr where most of my photos are).

The Exhaustion. It's so tiring.

This is gonna be a short blog post. Stop cheering, I can hear you all the way over here. If you keep it up, I can keep typing. You know me...

Let me dive right into it. Mostly because I'm so bloody tired. The Exhaustion... how bad is that feeling of tired? "Tired" is a nice way of putting it. Along with the fatigue is a little pain, but the pain is negligible by comparison. 

This was my morning- I got up after turning off four alarms. (I use my mobile phone as my alarm clock and I have four alarms set in a 35 minute window). I got up, staggered to the bathroom to put on my ha-ha-workout-clothes. I managed to get downstairs without falling down and I took the first of my stay-alive pills. 

I normally wait at least a half hour between my thyroid pill and my other stay-alive pills because I was told once a million years ago that I should take it on an empty stomach. But today, I got up after ten minutes and took the rest of my stay-alive pills (three of them are vitamins, the others are for my blood pressure, allergies/asthma, and acid reflux). Then I opened the cabinet to get my breakfast. Cheerios. Because gross stuff is good for you (not a fan of Cheerios). 

But the very act of pouring a bowl of cereal, getting the milk for it, walking back to my desk and then actually eating the cereal seemed too daunting a task. I usually keep some Special K cereal bars on hand for such days, but I was out. 

I had Frosted Cherry Pop Tarts for breakfast. I had Pop tarts for breakfast because cereal was too hard. I ate almost all of the two tarts and gave about a third of the second one to my dog- Gypsy. I took the dogs out- I think they love the fatigue days because I tend to stand on the deck without constantly telling them to hurry up. If I don't remind them what they're out there to do, they'd just run in circles eating grass and playing till they fall over. After I got them back inside, I went back to bed for a nap. 

I was up for less than 45 minutes before I succumbed to the fatigue. The exhaustion is worse than the pain sometimes. I mean, the pain sucks, don't get me wrong (today's pain, in case you were wondering, is about a five or six), but I can deal with the pain. I can't always stay in bed and nap. Also, I can take pain meds if I have to, but increasing my caffeine intake helps not at all for the crushing exhaustion. 

Consider yourself lucky if you don't have this disease. You know how you get tired at the office or in front of a class or digging that ditch (I don't know what you do for a living)? You yawn and stretch, let out a little groan, maybe stand up and walk around your office... or ditch. You feel a little better and you feel like you can go on. I can't do that. When I stretch, it hurts. Yawning sucks in general because it doesn't help (and I keep doing it now because I keep typing the word "yawn"). And if I get up when I'm this worn down, I'm going to shuffle-walk my ass to bed. 

Well, look at that... this wasn't as short as I expected. I told you to stop cheering about that, but you didn't listen, did you? Yeah, go think about what you've done.