Pahz Whines About Her Fibro

Well, that IS what this blog is for, isn't it? The name of this blog shouldn't be "Pahz Lives with Fibro", it should be: "Pahz Whines about Fibro and doesn't help anyone with any REAL information because she's not a medical professional and is definitely not a source of info on this issue" but that was too long for me to Photoshop into a banner image. (I really need to redo my banner, I've gotten so much better at Photoshop since I made that thing).

But here we are, going on 1 AM on Tuesday morning. (as opposed to "1 AM on Tuesday afternoon"). I went to bed a little after 10 PM. I had a decent enough day. Halfway through the day, it started snowing and of course, I went outside and took macro photos of snowflakes. I stood out there, hunched over the gas grill we never use, holding my camera up with my hands in my super-cozy fingerless gloves. I wasn't outside for very long, but the snow was the heavy, wet kind and after only a few minutes, my fingers were so cold and stiff I could barely move them. And they had reached that point of cold where touching my skin hurt, so I figured it was time to go inside. (I later found out that our high was 16° Fahrenheit, which would account for how I got so cold, so quickly). I spent the rest of the afternoon and evening trying not to get up and move around. After being seated for several minutes, any moving resulted in sharp pain in all my muscles.

When I went to bed, I said to the Disabled Guy (who doesn't give a damn about it) that: "At least today's weather explains why I haven't slept good for two nights" and he muttered an "uh-huh" as I walked up the stairs. I got settled into bed, my super-soft fleece blankets all situated and I was getting that all-over warm cozy feeling when things took an ugly turn. As my body settled into the bed, gravity increased its harsh grip and felt like it was trying to pull me through the bed to the floor. Every time I tried to relax my muscles (I start at my feet and work my way up- its a sleep inducing exercise I learned when I worked nights), they'd tense up harsher than they had been before I tried to relax. I changed my position, which caused me a grimace-and-whine-inducing bout of pain.

I ended up fairly comfortable on my back, propped up slightly by my pillows and with my arms at my sides. Every single joint in my body throbbed in agony with every heartbeat. My hands and arms felt swollen (they aren't visibly swollen though). My skin was starting to do that burning thing it does in a flareup (at least there was no itching!). My muscles felt like they were being pulled out of my body. My larger muscles, like the thigh muscles and the shoulder/upper-back muscles felt like they were being scraped off my skin with a flat, dull, burning blade.

After almost two hours, I got out of bed. And that brings us to now- closer to 1 AM than when I started this blog post and two more 5/325 Hydrocodone tablets (approximately seven hours after my normal nightly dose). My hands still feel swollen and stiff and my joints are still aching. But the burning pain is starting to subside. This strawberry Jolly Rancher hard candy tastes terrible. The music I'm listening to is awesome (MKIII by Steam Powered Giraffe) and I'm feeling kind of hungry. But I don't have anything in the house that I can eat without having to 1- get up to go get and 2- cook it.

And, I'm not the least bit tired. But at least I'm wearing this awesome hat, which is the one I'm wearing in my profile photo here. That's right, I wear my awesome accessories when I feel terrible because I like them and I will do every little thing I can do to make me feel better.

Now that I've passed the 1 AM mark because I was getting the links to the various things I linked to up there, the Hydrocodone has helped a little. This raspberry Jolly Rancher isn't much better than the strawberry one. The music is still awesome and so is my hat. (also- I just realized that my hands and fingers feel this way because of the Reynaud's that was triggered by the bitter cold Monday afternoon while taking photos).

I also remembered there's some frozen pizza in the kitchen. That's pretty much the least amount of work for something edible. Throw it into the oven and then sit down for 20 minutes.

Now if I could get to sleep, all of Tuesday's problems would be better.

And because I mentioned them, here are a few of the photos I took- snowflake macros. If you'd like to see more (or see these larger), just click a photo, it'll take you to my Flickr.









For size reference on how tiny the snowflakes were and look, my fur-trimmed fingerless gloves from The Sheepskin Shop at the Bristol Renaissance Faire. I had to switch to auto-focus to get this shot and the lens chose to focus on the fur trim on the gloves instead of my fingers.

Strange dream...

I know I've mentioned it before- the feeling of "cold settling into my muscles" and ending up so stiff and in pain. And it has to be a very cold day for that to happen. I mean, it isn't like I sit here at my desk and catch a chill that immediately invades all my muscles and then camps out in my bones.

Well, not every time, anyway. But it happens. The cold feels like it seeps in and by the time you realize it, you're as cold and stiff as Frosty the Snowman's... nose. Damn, guys, you have a dirty mind.

I've been going through quite a bit of stress lately (well, obviously, because- dammit, Dad!) and my flareups have been all over the place.

So, this dream...

In the dream, I was on some kind of photo walk. That's when a group of photographers of varying skill meet up and walk around taking photos. A lot of photo walks are done in cities (I think the nature hike ones are called something else, but you get my meaning...). So, I was on this photo walk (which is weird in the sense that I don't do photo walks because of the whole "walking" thing) with a group of people I'd never met before. Obviously I knew at least one of them in the dream, because I talked to one person mostly. Some guy who had been on this particular photo walk several times. During the course of our photo walk, we ended up on a cold and windy beach (it felt like Lake Michigan in Milwaukee to me) and after we all snapped photos for a few minutes, everyone put away their camera gear and started taking off their clothes.

I'd been explaining to my unnamed friend how I was so cold that I could barely move. My muscles were frozen and I did the whole "cold settling" explanation. And when he started taking off his clothes, he said: "Since this is your first time, you don't have to participate in this part. Its just something we do- you know, bonding and all."

And like a sitcom, everyone was disrobing and laughing and joking, even poking fun at my obvious modesty. At this point, I said to myself- "Well, this is obviously a dream" because in my dreams, I'm thinner and look a little younger. And I had a fancier camera than I actually have.  In the other types of dreams- I'm as I am now, in my 40s, overweight... So, in this dream, I'm explaining to one of the others that this is so obviously a dream because of my physical appearance. And the group all go into the water. They exclaim and laugh about the chill. And I tell my unnamed friend again that I can't get into the water because of the cold thing. And they're all cool with it and tell me its okay to just wait for them...

And like a sitcom (again)- I see another group of people coming down the path and suddenly, I don't want to be left out and I quickly remove my clothes and shuffle to the water. And the water was really warm. I said: "Wow! The water is so much warmer than I expected!" and everyone chimed in with their agreement.

Then some man called out: "The water is really warm over here!"

Several people groaned and expressed disgust and another man called out: "Everyone stay away from Dave, he's pissed in the lake again!"

I remember thinking: "Aw, Dave, what the hell, man?" and I woke up.

I woke up in my bed, my muscles so sore that I could barely move. I felt like my muscles were that "to the bone cold" and "burning" in pain. I sat up slowly and said: "Dammit, Dave... you had to go and ruin our swim."

So, I've taken pain meds already this morning.

And I'd really like to know what I took photos of on that photo walk before everyone got naked and went swimming.

Oh... Good morning, Full-blown flareup...

I'd wondered where you'd gone...

Not really. I didn't miss you at all.

I knew where you were.

I knew that you'd be back and you'd be an inconvenience.

Ha.

Inconvenience. As if you were an idiot driver in my morning commute.

Ha.

As if I have a morning commute.

I suppose you could call that walk from my bedroom to the computer desk in the dining room a commute. I have to navigate it in the dark and watch for obstacles in the form of several Chihuahuas and one large German Shepherd.

I didn't miss you.

I knew that you were gone merely because of the stress I was under. I've been on the edge of tears and walking the line of anger versus frustration for weeks now. I knew that was what was keeping you away.

Ha.

As if you could be "kept away".

You didn't have to come back today. I have too much to do and I really wanted to do it without taking pain meds.

I have to bake some pies.

I have to meet up with the brother because for some insane reason, he's decided that he should be involved in things. And it isn't even like he's been involved in things. Like, ever. And I don't need to justify his actions with "oh, he feels guilty" because I don't goddamn care how he feels.

As I type this, the Vicodin has mixed with the muscle relaxers that I take on an empty stomach at 530 AM. The intense pain I woke up with has taken a few steps back from the "unbearable and tear-inducing" to "tolerable but I will cut you, bitch" levels.

Ha.

As if pain meds actually do anything beyond taking the edge off the pain.

Well, here we are... 619 AM as I type this sentence. You're bubbling just under the surface. I knew it was going to happen because last night when I finally went to bed, I had trouble falling to sleep. Not from pain- because, fuck you, pain- but from that itchy thing. The millions of hairy-legged spiders that have been dormant for a few weeks awoke with their own version of hairy-legged Spider Restless Leg Syndrome.

Ha...

I like how I act like I can control you.

Hot spots- my left wrist. My left foot.

I wonder if I can win an Oscar for that... he won an Oscar, right?

If you don't know what I'm talking about, then ouch.... you're younger than I thought.

After having to deal with the brother, I'm going to come home- wait, that's not true. I'm going to get my dad's mail at the post office, water the plants in his condo, then I'm going to come home. I'm going to bake pies and listen to "An Evening with Neil Gaiman and Amanda Palmer" (its over five hours long and I'm listening to part of it now) and I'm going to hang up the art prints I got at Teslacon.

And to get through it, I will take more Vicodin.

Ha.

Like Vicodin actually helps.

It won't kill the pain, but it makes it bearable.

If I see one of those "chronic widespread pain" commercials, I will cut a bitch.

Ha.

Like I could cut a human with these sore, weak-as-fuck hands.

I just had to Google a fibro commercial because I couldn't remember the drug. Lyrica. And the first line was: "I had chronic, widespread pain for months. It wouldn't go away. The doctor diagnosed me with fibromyalgia..."

Ha.

"Months".

Nice one, Lyrica. I really needed that laugh today.

Good morning, Full-blown Fibrofuckingmyalgia Flareup.

Go to Hell.

The longest 2 1/2 weeks of my life so far...

If you're on my Facebook, then you already know. My father passed away on November 4th. It was sudden. We certainly weren't expecting it. He called me that afternoon. He asked me how Teslacon went (it was fantastic, in case you were wondering), we talked about the kids and what they were up to, and he asked to borrow a nail gun. No rush on it, he was done traveling for the year and was going to winterize his RV. It was about a fifteen minute call, around 130 PM.

At 1130 PM, I got the call from the ER in town. I had just gone to bed because I was editing my Teslacon photos. I had just literally hit the pillow with my head when the phone rang. Of course, they wouldn't tell me anything over the phone. I rushed to the hospital the same way I did when Dad called me about Mom. I ran a red light or two, ran a stop sign or few. [here's the blog post about my mom]

At the ER, they took me to the "Quiet Room". That's what the room is actually called. I knew something bad was happening. Because "Quiet Room", really? I was hoping they'd come in and tell me he had a heart attack, they found more blockages, he was sedated, they would do surgery soon... because he was fine. Moments after they left me in the Quiet Room, the ER nurse came in. Before she even completed the sentence, I burst into tears. I sobbed, I don't remember what she told me during those moments.

I asked if I could see him. Because it didn't feel real. It couldn't be real. It hadn't been two years yet, since Mom died. I wasn't ready for this. While leading me to the room, she was telling me things like how he would have tubes in him, the medications they pumped into him caused some bloating, and I said: "I was there when he had two bypass surgeries, I've seen him like that." Or something similar. My point was that I've seen him looking terrible and full of tubes.

He looked normal. His eyes were open. I paced a bit in that big room, as the two nurses (I don't know where the second one came from) gave me details. He was at a neighbor's house. The paramedics shocked him six times. The ER another five times. Since he wasn't in his own house, they didn't have his emergency paper that had the list of his medications and my contact information. They looked in his cell phone (an extremely old flip-phone) and didn't know who to call. I was first in the list. "A-Patty Daughter Home" and "B-Patty Daughter Cell" because he wanted my phone number at the top of the list. (he changed that in his phone when my mom became too sick). They called and left a message on my brother's cell phone. Then they called my cousin in Arizona- because they had the same uncommon last name as my dad.

My name? Smith.

The nurse remembered the name- because my mom was a home health aid, so she searched the internet for my mom's obituary. And found my name. And called my home phone from the local phone book.

So, pacing a little. It was probably three steps, turn, three steps. The nurse asked if I had any questions. I said: "No." I looked at my dad and said: "Dammit, Dad. I'm not ready for this." and I looked over at the nurse: "I wasn't done with him yet, you know? I still needed him."

They gave me his belongings. They took the Masonic ring off his hand and gave it to me. He had his and Mom's wedding rings melted down and made into that one ring. They led me back to the Quiet Room. I called my house and told the Disabled Guy he needed to come to the hospital. Then I called my Uncle David and Aunt Sandy. That's my mom's brother. I didn't know who else to call yet. After Aunt Sandy offered to come to the hospital, I called my kids. My daughters live out of town, both are in college. My son lives closer. He came to the hospital. Somewhere in the middle, I called my brother from my dad's phone. I actually called his wife's cell phone.

The conversation that I had was absolutely, stunningly ridiculous. I started to cry again while talking to them. I had to repeat myself over and over that it was Dad. And he died. I was at the ER and Dad died. And there I was, having the stupidest conversation in the world with the brother who cut himself off from the family for almost a decade. In the two years since Mom died, it wasn't much better. The whole time I was talking to first his wife, then my brother- all I could think was: "I'm having the Jackie conversation right now."




I wish I was exaggerating. Of course, I didn't end it the same way, but that's essentially how it went. (with sobbing in between, of course).

My aunt and uncle showed up shortly after the Disabled Guy arrived. My son showed up. The coroner showed up and we went through the paperwork part of a relative's death.  Then the brother and his wife. Aunt Sandy called my Aunt Janet (Dad's sister). The brother kept saying: "I just talked to him. I just talked to him on his birthday."

Really? His birthday. His birthday on September 5th. You just talked to him two months ago. Oh. Okay. Well, I had just talked to him about nine hours before the ER called me.

My daughter- the older one- lives about forty minutes to the north of us. The younger one lives in the dorm at her college in the same town with the ren faire (an hour and a half away from us). Kat and her boyfriend, Tyler, drove out to Christine's college and picked her up. In the almost-two-hours it took them to get there, Christine's friends were with her.

The one thing I did that night that I absolutely regret- I gave my brother that ring. My dad told me a year ago that he had it made and that it was with their wedding rings. Since it was a Mason ring, I was supposed to give it to the brother, because he was a Mason. Even though he hasn't been to a Mason meeting or event in about 15 years. Even though he cut himself from the family for almost ten years. Even though he was a terrible brother and an awful son and even less of a Mason. The next day, I wished that I hadn't given it to him. He doesn't deserve it.

The memorial service at the funeral home was a special piece of hell. But, they had forty-three Masons in attendance. The funeral home guy said that it was the most Masons they ever had before. He said usually there's ten to fifteen, sometimes twenty. I'm friends with a few of the Masons on Facebook because I've taken photos of the Masonic events (I've been to more Mason-related events in the past year than the brother has in the last fifteen years) and I was told they ran out of aprons. (the Masons wear aprons- if you weren't aware). The Mason funeral service is amazing. And it took ages to get through all those Masons who attended. After they did their thing, they lined up and filed out of the room, pausing to shake hands with the family.

Well, they shook hands with the brother, his wife, the stepson, then Christine, then me. When the Disabled Guy sat down, in an effort to stay out of the way, he sat in the third row back instead of the first. And my kids sat with him. Before the Masons started their service, Christine came up and sat with me. But it should have been just us up there. Me, the Disabled Guy, Kat, (with Tyler), Jason (with Courtney), and Christine. That's it.

As they filed by, I couldn't hold it in anymore. I had tissues in my left hand and I just sobbed into my hand as they took my right hand and expressed their condolences. They grasped my hand, said a few words, and passed my hand off to the next person. I don't even know how I held my hand up- they were probably holding my hand up for me at that point. The Masons I knew paused to hug me.

I'm the executor of the estate. The amount of emotional turmoil I'm having mixed with the stress- it has been surprisingly mild on my fibro. I'm still in pain, but my body is coping with the stress which is helping me muscle through the pain. My hot spots have been absolute agony and the first two weeks, I didn't take any daytime pain meds because I wanted to be absolutely clear-headed.

There have been a few moments when I absolutely cannot go on and end up in tears. Mostly when all the complicated estate stuff comes up. Because I have so many questions and the person I would have called is Dad. He has a guy for everything. Well, now I have some of his guys. They're my guys now. 

Here's my 365 from the morning after the ER. Just like Mom's. 

These last two and a half weeks have been awful and doing my 365 feels more like a chore than anything enjoyable. This may be my last one- I'm going to finish this one (I have less than 90 days left) but I don't feel like I want to start year five. I guess we'll just have to wait and see.

Oh, one thing- my parents used to joke that they wouldn't die "during faire season" because they knew how busy both Christine and I were during faire season. Dad died the day after Teslacon- which was my last event for the year. (its a Steampunk convention, but most of the cast and tons of patrons were from my faire family). We did have a chuckle about that- perfect timing, Dad.

This blog post is brought to you by...

FAKE INSOMNIA! WHOOO-HOOOOOO!!

Fake because it isn't actual insomnia. Real insomnia is a serious pain in the ass and I do not have that problem. What I have is breakthrough pain or- as I say it on Facebook- "failed pain meds". These are the nights when my pain meds don't make me sleepy. The pain is too much for all the pain medication and muscle relaxers. And, because I follow my doctor's orders- I don't take extra. So, every once in a while, I end up staying up till the wee hours of the morning before exhaustion wins.

So, Fake Insomnia.

Let's move on, shall we? Good...

It seems there was an awesome article recently, informing all of us that "Fibromyalgia Solved: A Pathology, not in the Mind". It was a pretty good article. It tells us that this isn't a fake disease and that we're not totally mental. It even describes: "One result is a build-up of lactic acid in muscle and deeper tissue affecting the muscular system and causes pain that can seem to ‘travel’ from areas of the body one day to the next and cause fatigue, commonly reported from victims of fibromyalgia."

LACTIC ACID. How many times have I described my "normal everyday pain" as feeling like I worked out too hard? I even used those very words- LACTIC ACID! That's what your body releases to help you physically cope with stress- be it mental stress or physical stress. You would know it as that painful burning feeling you get when you push it TO THE MAX! Or CRANK IT UP! And the ever-popular NO PAIN, NO GAIN!! *roars like the Incredible Hulk* YEAH! LET'S DO THIS!!

No... no... wait. Let's not do that... that hurts. Whew... someone could have really gotten hurt up there in that paragraph. I hope you were lifting with your legs and not your back.

My fake insomnia tonight was caused by "bone crunching pain". I was curled up in bed, in my usual naked-under-fleece-blankets state (let's not forget the ever-sexy wrist braces I wear to bed. Because that is a hot look, I tell you what) and no matter how still I tried to stay, I couldn't reach a point of sleep. I felt as though my bones were being pressed together at the joints. In my shoulders/collar bones mostly.

I've been having a few-days-long flareup and have been meaning to write this blog post for those few days but I've also been busy. Teslacon is coming up next week and I've been using my spare energy to finish sewing the few things I need to sew. I'm not official at Teslacon, but since I know almost everyone there, I'm in my unofficial status of photographer. Meaning I will photograph the living daylights out of my friends and when they're not being fabulous, I'll photograph absolute strangers.

And yesterday- Wait... I mean Thursday. On Thursday, I decided to save my energy because my son asked me to take some photos for him. Well, of course I did. And for that half hour, I got to ignore my pain. And yes, you are right in that heavily-sighed assumption... I'm about to share the photos with you here.  But I kind of have to- they're pretty awesome photos. I'm quite proud of them. When I have to make up a print portfolio, some of these are definitely going in that book.

My 365days self-portrait for Thursday. Myself reflected in my son's helmet visor.










This one is my favorite from this quick shoot.



The clouds and sky look pretty cool in his visor.





He made this one his profile photo on Facebook.



I also stopped on the way home and took a few sunset shots from my usual spot in a parking lot of a school on the edge of town.











Next week, I will have three awesome days to forget about my pain. I'll be garbed up, wearing a camera, and taking photos of those wonderful people doing awesome stuff. And then I'll share it with all of the Internet.

Because that's what I do. And I refuse to let fibrofuckingmyalgia win this fight.

I can finally make a comparison to something...

You know how I've described the "hit by a truck" feeling as being more like "thrown from a horse" because I've never been hit by a truck, but I've been thrown from a horse. I've also fallen down the side of a mountain, been swept into an undertow, and wiped out while skiing (I went downhill skiing one time in my life and I was awful at it- yes, I know I grew up in Alaska, but there are other things to do there besides skiing. Besides, I mostly did cross-country skiing when I wasn't cycling). But that's not what this is about.

About a week ago- wait... let me explain first. I've been meaning to write this blog for about a week or so. I don't really remember when I had this realization, but I do remember that it was first thing in the morning. I've been busy the last couple weeks (had a product shoot, then had some dealings with a PR firm about using my photo for something- I don't think they did, I never heard back- and I've had major excitement involving an upcoming renaissance faire- which involved some rapidly-changing emotions) and some of my days sort of ran together. And then things got away from me a bit and of course, some days, I just wanted to lay down and not move a lot.

So, about a week ago... I woke up to the sound of my alarm (which, as you know from my last blog post, is set to a Steam Powered Giraffe song) and turned it off. I promptly fell back to sleep only to have the second alarm go off right on schedule. So, I sat up. Slowly. And I sat there for a few minutes, waiting for my body to choose either "on my feet" or "lay back down". I rubbed my (sore) hand over my face- which felt puffy to me, till I touched it (then it felt normal). I slipped my feet into my old-man slippers (because I can't walk barefoot anymore) and stood up slowly. I made my way into the bathroom where my giant yoga pants and huge "I shoot RAW" T-shirt were waiting and I looked in the mirror. I looked exhausted. I just woke up, how the hell was I exhausted already!?

I was moving slow. I felt awful. I didn't have a headache, but my entire body ached and moving too quickly made me feel woozy. And I was about halfway down the stairs when I realized what this must feel like. This must be what a hangover feels like. I say "must be" because I've never really had a hangover. I wasn't much into drinking- sure, I've been drunk (I've never been fall-down drunk, though), but I've never had a hangover. The last time I was actually drunk would have been Mother's Day weekend in 1997 when my parents took all three of my kids on their camping trip (they went camping every weekend, Dad still does). Hey, I got married young, had kids, drinking seemed like a waste of time and money back then. Anyway, I'd go to bed after drinking and I'd wake up fine. Tired, but never with a real hangover.

Now, I know what you're thinking- "Patty," you say, because that's my name, "You take a lot of pain medication at night, right?"

I do, but I don't feel hungover from that... I've been taking Vicodin for about seven years. I've been taking muscle relaxers for around three years (and I've taken this current dose for about a year). I have days when I wake up and I feel fine. And then I have days like this one we're discussing right now.

Hit by a truck.

Thrown by a horse.

Fallen from a mountain.

Wiped out while skiing.

Having a massive hangover from binge drinking.

The biggest difference from a real hangover to this stupid disease would be the fact that greasy bacon and fried eggs sound great- if someone else cooks them, because dammit, I hurt. I'm not going to stand up there and cook you breakfast too!

But you can relate to that feeling, right? That all-over body pain and feeling of absolute exhaustion... and the feeling of everything around you moving in fast-forward while you move in slow-motion. Why do you guys do that to yourselves? Why would anyone WANT to feel this way on purpose? Sheesh, you guys are crazy.

Today was one of those hangover-feeling mornings. My alarm went off (its a different Steam Powered Giraffe cover song now) and I turned it off. But I sat up. Slowly. Everything in slow motion while the rest of the world moved at normal speed. When I took the dogs out, I found out why I felt like I'd gone to a frat party and won at beer pong. It was foggy, which means it was humid. And humidity is my mortal enemy. My nemesis. Super-villain to my superhero. Magneto to Wolverine. (what? I'm totally Wolverine! I heal so quickly that scar tissue forms in such a way that the doctor had to knock me unconscious and then manually break apart the scar tissue!).

Where was I? Oh, yeah, feeling like crap in the morning. Well, today is the only day I had time to dye my hair. I've been dying my hair for almost two decades. I started going grey at 17 and it annoys me that I'm so grey now. Anyway, Monday and Tuesday were days that I had to run errands and go grocery shopping and all that. (I even went to the fabric store because I have less than a month to somehow sew a skirt for Teslacon). And tomorrow I don't plan on doing anything... except for going to Dairy Queen and buying my own birthday cake, because, dammit, I'm not baking my own birthday cake.

Anyway, I only had today to dye my roots. So I chewed down some Vicodin and dyed my hair. Then I decided to try for a 1920s-style look for my 365days photo. I took around two dozen photos to get nine that I liked. And from that nine, I only shared four on Flickr. I let my Facebook friends choose the one to use for my 365. It wasn't the effect I was going for, but I'm pretty satisfied with the photos in general.

But, I woke up feeling terrible. The Vicodin did very little to help today. I spent most of today feeling like a giant, itchy bruise. All over. My feet feel like there are railroad spikes hammered into them. My skin is itchy- luckily only randomly and not constantly. My hands are burning in pain. All of my large muscles ache and probably some of the small muscles too. I'm having a pretty typical flareup here. And I'm trying to take it easy because I have a ren faire to go to this weekend. (sidenote- my dad stopped by and gave me my birthday present because he's going out of town very early tomorrow morning. He gave me cash- which I wasn't expecting since he paid to have my computer fixed- and said: "Take that to the ren faire and buy something for yourself."). And I was all flare-y and got a little teary over the whole thing.

Drunk people get weepy over stuff too. I feel like fibrofuckingmyalgia is trying to make up for all those years when I was a responsible adult and didn't drink every weekend.

Stupid disease. Stupid pain. Stupid emotions.

And now, to leave this on a lighter note- here is Monday's 365 self-portrait and a collection of similar ones from the previous 365days self-portraits. They're just in random order- no rhyme or reason, just as I found them on my Flickr (meaning I searched for the tag and took them as they came). I love these kinds of photos and someday, I'll do an entire week straight of this style. If you hover your cursor over the photo, you can see the title of the photo.

I hope they make you smile as much as they make me smile. And for the record, when the Disabled Guy saw Monday's 365, he said: "You're just not right in the head, are you?"

No, I am not. But that's what makes me awesome.

Day 229 of year four-



Day 359 of year three-



Day 187 of year one-



Day 253 of year three-



Day 343 of year two-



Day 122 of year three-



Day 154 of year one-



Day 275 of year three-



Day 166 of year one-



Day 363 of year two-

What happens when you get ALL THE SPOONS!

"Spoons? What the hell are you talking about, crazy lady?" says you, in a really snotty tone. I mean, really, we're one sentence in and you're already sighing and rolling your eyes. Aw, c'mon... there's going to be photos related to this down below. And maybe some illustrations!

You'll love the illustrations! I'm so talented.

Not at illustrating, just in general.

First, let me link you over to The Spoon Theory by Christine Miserandino. Go on, go over there and read it. I'll wait here...

Hey, while they're over there reading the article, I'll just talk about the gist of it- you see, the "spoon theory" uses regular old spoons to demonstrate how people with chronic illnesses get through their days. You start out the day with X-number of spoons. Each task takes a spoon from you. Some days, you have a HUNDRED SPOONS and you never run out! Some days, you have no spoons and those days suck ever-so-hard (and not in the good way, know what I'm sayin'?). Some days, you have four spoons and the very act of getting out of bed takes a spoon. Walking down the stairs takes a spoon. Getting your breakfast takes a spoon. And you're down to one spoon and you haven't even gotten dressed yet. And guess what? Those hundred spoons you had the other day? Yeah, you don't get to keep those. They don't carry over like those rollover minutes on your outdated mobile phone plan.

What's all this got to do with me? Well, I'll tell you...

Welcome back, guys. Did you enjoy that article? I hope so. It made me cry the first time I read it. But then, yesterday, I cried during "Independence Day", so don't listen to me about things that make me cry. (it was the Russell Case scene when he says: "Do me a favor... tell my kids I love 'em..." and BAM! TEARS!).

For the record, crying takes a spoon.

But back to today! TODAY!

I was going to illustrate today's stuff in a series of photos. But, I ran out of spoons before I got to the photo part. I had to go to the store and that took all the spoons I thought I had.

So, let's get started.

Today, I woke up having a pain flareup. I struggled to sit up on the edge of my bed. It took two tries to turn off my alarm. I use my mobile phone as my alarm clock. And the alarm that wakes me up first is a song by Steam Powered Giraffe. Hey, I like to wake up to a smile and SPG makes me smile. Especially that song.

This is a recreation of the event. I wake up early, before the sun is up. And when I got the idea for this blog, it was well into the daytime and I didn't feel like recreating it with a photo. Hence this lovely illustration. We have a reasonable facsimile of my room. A window with a dream catcher, me sitting on the edge with my red mobile phone. A lump in the bed representing the Disabled Guy.




I was rested, which is shocking, but I was in agony. All-over aching pain. I felt like I'd been thrown down a flight of stairs and stepped on. So, when I finally made it down the stairs- getting up and walking to the bathroom- one spoon and Putting on a T-shirt and yoga pants- one spoon (I sleep naked. Yeah, I'm naked in that illustration. How about that, Internet?)... Where was I?

Oh, yes... when I finally got downstairs- which took about ten minutes- I did my morning usual: took my thyroid pill, and 20 minutes later, took my morning muscle relaxer. But today, I had a Vicodin chaser with that. About 45 minutes later, I got up to go take the rest of my stay-alive medicine (some asthma stuff, a couple water pills, a blood pressure pill, and some vitamins the doctor told me to take) and to get my breakfast (I had Raisin Bran). I felt good. I felt really good! The muscle relaxer and Vicodin cocktail on an empty stomach worked!

YES!

I HAVE ALL THE SPOONS!

Normally, on a flareup day, I end up going back to bed after breakfast. Sometimes I sleep, sometimes I don't. Okay, most of the time, I sleep. But today? No way, man. I didn't need to sleep! Instead of stripping down and crawling back under my two fleece blankets, I stayed up. I took a shower.

I HAD ALL THE SPOONS!

*photographic evidence of ALL THE SPOONS*



"Wait a minute," you say, "Is that a whisk?"

Yes, that's a whisk.

"I think I see a ladle." you tell me.

You do.

"And a spork. Is that a spork?"

Yes, it is. You see, when it comes to having ALL THE SPOONS, we don't discriminate. WE HAVE ALL THE SPOONS! AND A WHISK! AND A LADLE AND BY GOD, WE HAVE A SPORK!

So, imagine my disappointment when, during my morning routine of blowdrying my hair and getting dressed, my spoons were being rapidly depleted. I don't know what happened. A task that was supposed to take one spoon was taking two. And I might have dropped one. All I know is that the spoons were gone by the time I had to drag myself to the store.

All the spoons...



And I no longer held them in my hand. No, they were gone. Sure, they look like they're on that table, but they're not. What happened to the spork? I have no idea. Even when I came inside, the spork was gone.

Instead of having ALL THE SPOONS, I was now being crushed by the spoons.

*artist rendering*



By the time I was done dragging myself around, I decided to do the photos. And halfway through the two photos, I said: "To hell with this standing and moving thing, I'm going to draw some stuff in Paint."

And that brings us to now.

Today's spoons were an illusion. They were held up to me and I was toyed with and still managed to get to the store and I made chicken casserole for dinner. Because comfort food, goddammit.

When you think you have ALL THE SPOONS, make sure you do. And if your spoons are rudely taken from you as mine were today- don't mentally obligate yourself into doing tasks that take energy. Stick figures in Paint are just as good- IF NOT BETTER- than photographs.

Also, I made today's chicken casserole with fresh chicken. It really wasn't any extra work than using canned chicken. I suggest you give it a shot if you haven't already.

The worst part of losing today's spoons? I didn't have the energy to bake the cheesecake I was going to bake.

Dammit. DAMN YOU, SPOONS!

Because they made it into a photo, it's more fun that way!

I saw this photo floating around Facebook this week. I made a mental note (ha-ha-ha-haaaaaa!) to go back to it so I could share it and whine a little bit. But, like all things I mentally note and not actually note, I forgot about it. So, I did a quick Google search and found it again. I had to make it bigger, though, because it was tiny. And in resizing it, I had to fancy it up a little.

YOU'RE WELCOME.  ♦♦♦♦click here to view in a larger size♦♦♦♦



Wow. That's huge. Well, at least you can see it. I made it almost twice the size it was, dragged and dropped it onto a plain black background and added the blue glow before flattening the layers. Not that big a deal, but at least it isn't the poorly cropped thing that it was before.

So, let's talk about this pain, shall we? Of course we shall, that's what my blog is about, isn't it? Yes, I appear to be talking to myself again.

1. Knife-like pain: Yup. I get that mostly in my feet and sometimes in my hip. And it isn't localized in that one spot. It jolts and shoots through that area of the body as though I'm being stabbed- not unlike a knife! See? You know where they got that name then.

2. Hyperalgesia: That's the increased response to painful stimuli. If something hurts you, it hurts me worse. Stub your toe and let out a string of profanities and even get a bit of tears stinging your eyes- and for me, it hurts so bad that I can barely breathe enough to stay alive, much less shout out a string of profanities. Earlier today, I stumbled a bit and ended up scraping my elbow against the corner area of a door frame. And in a normal person's body, that shit hurts. On me, it felt like I'd peeled off a layer of important skin on a lemon zester. There's no mark on my body aside from a slight bit of redness. I'm not missing any layers of skin. But damned if it didn't feel that way.

3. Allodynia: Painful response to an normally innocuous stimuli. And I hate that description. "Innocuous stimuli" makes it sound like something is gently annoying you and then you react to it by shouting swear words and threatening legal action. "Hey, I took the last cookie." "I WILL MURDER YOU AND YOUR FAMILY WHERE YOU SLEEP!!" That's not the proper response. Really.

What it actually is, however, is much worse. Let's say you were in a Facebook poke war with someone and they took it to the real world. OH IT IS ON, JOSEPH! *ahem* Sorry about that. I just know a guy- you see, this guy I know at faire took our poke war to the real world. And he cheated a lot by sneaking up on my deaf side. And don't give me that line that he didn't know I was deaf. I mean, its absolutely true that he didn't know, but still!

Anyway, here is a photo of myself that I took today (wearing my new Damsel in this Dress bodice). I added a little bit to demonstrate how a NORMAL person would feel a typical poke from another human.




See? That's not so bad. You got poked, deal with it. It didn't even hurt, but you felt it.

Now, here's the same photo, with a little bit added to it, to demonstrate how I feel a normal poke from someone's finger. I added some tears as well, because fuckin' ouch, man.




So, this isn't an exact representation, but you get the drift, I'm sure. And I don't feel like this EVERY single day. But I do have days like this. Today is a day like this. I have an all-over ache in my muscles and even the slightest pressure- say from a four pound, black and white cow-print dog with tiny feet- causes a radiating pain wherever she put those tiny paws on me.

[she's a beast!]


4. Parethesia: That's the pins and needles feeling when your foot falls asleep. I don't know why they use the word "numbness" because that implies you can't feel anything. But you know you can- you know the feeling I'm talking about. Pain, tingling agony, and you stand up and try to put weight on it and you almost crumple from the lack of feeling, yet painful agony.

Now, imagine that, randomly happening, for no reason, even when you're using the body part. If I stand up too long or stand in one position too long, my feet do this. My hands do it too- like if I'm holding something (like a camera or a large fancy basket with a camera in it). If anyone has seen me taking photos at the joust, you'd have witnessed me shifting my weight a lot or even holding onto the rail for stability. What you can't see under my long skirts is that I'm standing on one foot and shaking out the other foot.

5. Randomly Roving Pain: Well, they were sure thinkin' fancy when they named that pain, weren't they? But yes, I get this too. I refer to it as "hot spot" pain or "My hot spots are flaring". Sometimes I feel in my hip muscle, sometimes in my foot. It seems to happen to me in the larger muscles than in a smaller muscle. Like the hip or thigh and the shoulder muscle. I also sometimes get what feels like a sprain in my wrist and that can last for an hour or it can last for days. And during that time, there's no swelling, there's no bruising, but I have no strength in my wrists and hands just like I've had an actual sprain.

6. Sparkler Burns: Have you ever been burned by a sparkler? Me either, so I don't know why they called this pain that term. I bet it hurts a lot, no matter what chronic pain disease you have or don't have. But this is the painful tingly sensation that when it gets scratched or touched, it can trigger that pesky allodynia pain. In me, that would be the itching/burning skin thing that I refer to as a million hairy-legged spiders all trying to break-dance out through my pores. I hate that shit.

7. Rattled Nerves: This one is an all-over sort of thing, related to anxiety. I am very, very fortunate not to suffer from depression or anxiety, so I don't usually have this problem. I do have times when I'm all-over-body-aching and I feel as though I'm coming down with the flu, but it doesn't cause me any mental distress like the description implies. I have bouts where I'm short-tempered for seemingly no reason and instead of merely answering a question, I bark out an angry, profanity-laced reply that required no hostility on my part. (If I've done that to you, I apologize).

So, there you have it... the seven kinds of pain with some infographics added for fun. This goes sort of with the post I did a couple weeks ago where I state that I am "always in some kind of pain". And that little infographic at the top doesn't even touch on the fatigue that kicks us in the face and wrestles us to the ground. That shit is totally bogus. *feathered hair flip* Totally, dudes.

 Right now, as I type this, I've had my nightly Vicodin (three 5/325 mg tablets) and muscle relaxers (two 10 mg tablets of Cyclobenzaprine). And my hands have that Parenthesia thing going on, my right shoulder is having a bit of a flareup from that "roving" pain, and both arms and hands are doing the millions of spiders thing. The good news is that all those pain meds I've taken make me not care. And in a couple hours, I'll be blissfully asleep.

At least, I hope to be. I have to drive down to Rockford tomorrow and shoot some product photos again.

Let's talk about Closing Weekend, okay?

Here we are, just over a week after our three-day closing weekend at Bristol. I've still got callouses on the arches of my feet (yes, on the arches!). And I'm still struggling with random bouts of fatigue. (and that fatigue may or may not be related to closing weekend, I mean, it has been over a week now).

But let's talk about closing weekend... Why? Because that's what I put in the title, we have to do it now. People are expecting it.

Saturday morning, I awoke to some mild all-over ache-y-ness. Sort of a pre-flu feeling. You know it well- the muscles are sore and tender to the touch. You feel hot, but when you actually touch your skin, you feel cool. No problem. I just moved a little slower than normal on Saturday. I got home and was exhausted from the day- expected, but I was so exhausted that I fell asleep without issue. If only I could have stayed asleep.

Sunday morning, my body screamed me awake with muscle pain and my right hip grinding in such an un-sexy way. I struggled to stay awake for the hour and fifteen minute drive to Bristol from my house. I dragged myself through Sunday, taking my Vicodin on a schedule. I remember moving slow, walking slow, not rushing around.

Monday morning greeted me with a full-blown flareup. I could barely move. I forced myself to my feet. I winced my way through my shower. My joints felt like they were on fire (even the cyborg joint). At the last minute, I opted to wear my thick-soled hiking boots (my favorite pair of Dr Martens). At first, my body was all: "Yo, bitch, watchoo doin? You expect me to drag all this extra weight on my feet?" But after a few minutes of walking on the Bristol dust and gravel ground, my body was all: "Well, my dearest, you are such a clever little thing..." because my body changes its vernacular when it shouts at me.

I moved slow through most of Monday. I chose my photo vantage points for the joust based on how far I had to walk to get over to the area. (and in one case, someone else stood where I was going to stand before I was able to get up and walk over). By the time the closing time came, I was running on auto-pilot. I barely hugged anyone, I barely said my farewells. So, basically, I owe everyone a hug. (you hear that, everyone? You have to come back now!).

I went through the entire closing weekend in varying degrees of flareup pain. And this past week- which one would think would be a week of recovery- hasn't been much better. The weather has been playing with my body like a cat with a housefly. It pulled my wings off and now its just batting me around on the floor. And this floor really needs to be vacuumed. This week's hot-spot is my lower back and right hip. So every step is a delicious reminder of how much this stupid disease sucks.

As I sit here, in my central-air-conditioned house (and the weather outside is in the 90s for heat), all my muscles are stiff and sore. I took Vicodin to go to the grocery store today, so my lower back isn't quite so bad right now. Just don't ask me to turn my head with any kind of speed. Much like closing day, I'm moving in slow-motion today. And unlike closing day, I'm not having any fun doing it.

And, if you'd like to see my faire photos- I have a lot of them uploaded here on Flickr. And that's about 1/3 the amount I shared on Facebook. And as of this typing, I still have one day's worth to upload on Flickr. (I'll be getting to that on Wednesday- which is tomorrow, and it won't be till the afternoon because I have a product shoot in the morning).

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.