Wednesday, April 24, 2013

Each flare-up is like a new adventure!

An adventure!? 

That sounds fun!! 

Can I come along?! 

Wow, you always have the most fun EVER! An adventure! Whew! I wish I was you, crazy lady. 

Today's flareup is a continuation of something that's been going on for about three days now. This is an all-over-muscle-stiffness flareup. I feel as though my muscles are being pulled tight to the point of burning. I can't turn my head to the side very well, which comes in super-handy while driving. Everything hurts. My clothes hurt my skin. My cross-body purse strap hurt my shoulder, my cleavage and my back. . Walking hurt. Pushing the cart (trolley) at the grocery store hurt. Sunglasses on my goddamn face hurt.

Picking up a 16.9 ounce water bottle hurt. Walking up the stairs- which I have to do if I want to go to the loo, yes, I said "loo", deal with it- took so much energy I had to rest at the top before I continued the three whole steps to the bathroom. (THERE! HAPPY NOW, AMERICAN DEVIL!)

I sat on the sofa for less than a half hour and when I tried to get up, it took three tries to beat gravity. Three tries. I should be glad I got up on that third try. After the third attempt, the judges automatically disqualify you from the event.

Wow. That doesn't sound much like an adventure. That sounds pretty miserable. I- I don't think I want to come along. 

I didn't think you would. That's okay. I wouldn't wish this on my worst enemy. And that says a lot, because being a superhero the way I am, I have a few extremely sinister enemies. Archenemies, would be the right word. Supervillains. Don't worry about me, though. I'll be fine as long as they don't have an meteorites from Planet Fibromyalgiaaan. Our speaking language is a lot like English, except we shout it angrily and usually high-pitched. Shrieking. That's how we speak. We shriek. Its just an odd coincidence that your language of "English" sounds the same as ours from the planetary system: "Chronicosius Illnesseans".

What? You did know I wasn't human, right? I mean, no human could put up with this bullshit. Of course I'm a super-powered alien from a different planetary system.

I leave you with a photo.  I was doing my 365 and Gypsy came outside with me. And she decided to be adorable and I decided to take a photo. Enjoy.

Gypsy in the sunset

Thursday, April 18, 2013

Platitudes are nothing like Platypus. Don't be fooled!

"What doesn't kill you..."

"[your version of "God"] doesn't give you more than you can handle..."

"You're such a strong person..."

I really like platypuses. Platypi. That's the best of the platypus- because you get pie too!

I bitch about the pain a lot in this blog. I mean, that's what I started it for- so others out there would know they aren't alone. After searching and searching for medical facts and finding TONS of blogs and not so many articles, I realized that most of those blogs were trying to hide themselves in work clothes. "I have fibro, I'm not a doctor, but I copy/pasted this from WEBMD and I hope it helps..." And there is a place for blogs like that, because I did actually find links to legit medical sites where I was able to gather my information.

But, there were very few "This is happening to me, it might be happening to you, and it sucks. It sucks so hard that you'd think it was getting paid for sucking. Goddamn hooker of a disease" blogs. And very, very few (or not any, actually) that used humor. I'm no comedian, but I like to cushion bullshit with humor. Because this disease is such bullshit. Stupid and annoying and fickle- like that twelve year old with ADHD who didn't get her midday meds and now she's hot-glued flower petals to the cat and keeps screaming: "ART! I MADE ART!" at the windows in the house. And then we have to say: "Caitlin, honey, the cat's name isn't 'Art', it's Mister Fluffykins McCutesyface."  Also, platypuses are awesome.

I bitch a lot about the pain and the aching and the itchy skin and the total exhaustion. A lot. But this is my blog, not yours, so stop trying to rearrange the furniture! I like the sofa where it is, goddammit. But I realized that I never bitched about something that goes along with the pain. Weakness.

I don't mean the weakness that makes you cry and then people pet you on the head and hope you don't wipe your nose on their sleeve while you cling to them and sob. But that's totally what you're doing. I mean physical weakness.

I've compared this aching thing to a post-workout pain, then recanted and said, "Nuh-uh, this shit is totes diff and whatevs." (I'm paraphrasing). But that next-day-I-tried-to-be-Arnold-because-a-girl-was-there pain? It feels somewhat good and you can still function. And while it hurts to lift that Diet Coke can to drink it (why you'd drink Diet Coke is totally your thing, I don't judge), you can still do it. You can lift that can, pick up a stack of dinner plates, pull open a door.

So, not only are the muscles burning in agony and feeling like they're being pulled off your bones, you're weak. You're a delicate flower and you can't lift up that Diet Coke can without spilling half of it. And that shit will eat through you clothes faster than the "Aliens" alien's acid blood will tear through your pretty face. Weakness. I can't lift anything much heavier than my camera (and when that gets to heavy for me to lift, I may as well be dead) when I'm in pain. And I don't mean the weakness from: "OW! THIS HURTS! I WILL SET THIS DOWN!" like you get from back pain. There's a special place in hell for back pain. Its really close to the knee pain hell. That's not weakness, that's common motherfucking sense. "It hurts, don't lift that day bed."

This is like muscle failure weakness. I grasp a door handle and my hand is too weak to keep my grip. I pick up that Diet Coke can to throw it as far from me as I can, but it slips through my fingers because I don't have the strength to grip it and now it's ruined my favorite Docs. Some days, my muscles feel so weak that I can't grasp the prescription bottle to dig out the pain meds I need. And it isn't just my hands. There are some days I can barely walk up the stairs. But I do, I pull myself along like a pathetic mountain climber whining about the lack of oxygen before passing out and being left for dead by the sherpa he hired.

"But wait, Lady Platypi," I can hear you say, "How do you know this is related to the fibro pain and not just, you know, you being a punk-ass bitch? I mean, do you even lift, bro?"

"Sit the hell down, Chauncy!" is what I say, because this will be on the test later and the final exam is like, 80% of your grade and I need you to focus, goddammit! Also, your name is Chauncy now. Get used to it.

No, this isn't just me being weaker in the sense that I'm no longer that spring chicken who shows off her gams to the fellas. I know this because on good days, I can pick up a small car and throw it at the owner. "You left your Hot Wheels here, smartass!" and they shout back, "Who are you!? Put my car down!"

On good days, I've pushed a full-size Chevrolet Silverado out of the mud. I've opened doors and thrown Diet Coke cans. I'm like the female Hulk, but without the steroid abuse and CGI effects.

So, while you're sitting there and shouting at your monitor: "I LOVE YOUR MOTHERFUCKING BLOG, BUT WHY AM I SO WEAK MY KITTEN KICKED MY ASS?!", now you know. With the pain comes a weakness. And because this is fibrofuckingmyalgia, it doesn't happen every time. No, that would make too much sense. The weakness comes and goes like the pain and numbness and exhaustion.

And because you stuck it out with me through this, here's something pretty that I did this week. You earned it, my Precious Platypus.

Sunrise with the daisies

Raindrops on my petals

Sunrise with the daisies

My favorite shot today.

Sunrise with the daisies

Sunrise with the daisies

Saturday, April 13, 2013

Mutant powers aren't all they're cracked up to be...

I've said it a few times- my superhero power is fast healing. That accounts for my ugly scars and the fact my knee healed so quickly after my knee replacement that the doctor had to knock me out and bend my knee for me. He described it as: "Snap, crackle, and pop" as the adhesions (sort of like scar tissue) were broken up as he forced my knee to bend to 90° (up till that point, it had been going to around 70° with help, 50-ish in its normal state).

I've had a hellish week. Maybe longer, I don't even know anymore. I trudge on because what else can I do? On the days I don't have to leave the house, I take my Vicodin on a six-hour cycle. The days I have to leave the house, I don't.

You all know the drill... aching muscles, focused pain in different parts. On top of all that, my skin is aching. The shower hurts. The water hitting me feels like hot needles jamming into my skin. I can't tolerate the tiny dogs stepping on me. It feels like someone is jamming a rod into my muscle when teeny-tiny, four-pounds-on-a-good-day Beefy steps onto my lap. I've been swelling for over a week now, too. My legs, ankles, and feet. I don't know if I'm swelling anywhere else because when my skin hurts like this, I wear my huge clothes. Mostly the 4x and 5x "I shoot RAW" T-shirts. 3X is loose, but not loose enough. And don't even come at me with a 2X. That barely fits over the boobshelf on a good day. I sleep naked (sorry for that mental image), but between  the "get out of bed" and "take a shower, get dressed" stages of my day, I have to wear something. Since I used to exercise in the mornings, I'd put on sweats and a loose T-shirt. I still do. Except now its yoga pants and a huge T-shirt. (mostly, black yoga pants and my blue 5x "I shoot RAW" T-shirt). Today, after my shower, I put on a different pair of black yoga pants and my maroon 5x "I shoot RAW" T-shirt along with my black, fleece-lined hoodie. I was going to change before I sat down to write this, but jeez, why bother? I'd be switching a pair of yoga pants for an older pair of yoga pants and a huge T-shirt for a slightly more-worn huge T-shirt.

My hands are aching, not like arthritis (thank fuck, because that shit hurts more than the fibro-ache), but when they get to the point of being so sore that I have to rub them, it feels like I'm rubbing the skin from my bones. The pain in the muscles and tendons in my hands and fingers feels like it goes right through the bones. I assume because my finger bones are closer to the surface than say... my ass, I mean my hip. Not my ass... that cushions my hips, but there's a lot of ass between the skin and the bone. Or something.

We had rain and cold all week. I assume that's what caused this flareup. Whatever it was, it can just fucking stop now. Seriously. I'm done with you. I need to go to Home Depot, goddammit and I can't do that if you're going to attack me like an angry, yet lazy The Blob. That's his real name, right? The Blob. I mean, just "Blob" is a little familiar and I'm not going to call him "Mister Blob" because fuck him, he's a blob.

Now this is going to take a random jump, because I had to stop typing for a few minutes.

I really want to sit on the sofa and watch a movie (I don't know what, we have tons, even a few I haven't watched yet), but I know what it will feel like when I try to get up after two hours of sitting there. It will hurt. It will hurt so much that I can't find adequate words to describe how much it would hurt. And right now, after hurting so much for so long, I don't want any extra hurt.

I mentioned taking the Vicodin on a six hour cycle- I should mention also that it doesn't take the pain away. It takes the edge off the pain. It makes me hurt a little less so I don't end up crying. Although, at this point, I just might put in a really sappy movie and just let myself cry at that so I can feel better after. Although, I'm not sure I'd feel better, because I'd have that pesky "sitting on the sofa, can't get up" pain.

Here is my normal pain. Normal, manageable, totally go without Vicodin all day.

This is the "I just got up from the sofa" pain. The kind of pain that makes me exclaim swear words. The kind that brings me to tears.

Does that help? Do you get what I'm saying? Are you picking up what I'm putting down? Are you smelling what that rhino is cooking?

No, wait... that's not quite right. I don't think you can really grasp the whole thing here. So, I made this in Photoshop.

Ah, there we go... that's more like it.

All I've done so far was bitch about the pain. I haven't even whined about the exhaustion. Well, I really can't. I've had some days when I'm so tired I can barely sit up and I've had other days when I'm fine. The one constant in all these days is the pain. The Disabled Guy called me today about something trivial (the title of a movie) and I tried to explain to him that I wasn't thinking clearly because of all the pain and Vicodin. He didn't care. He just wanted to know what the name of a movie was. Spoiler alert- "Planet Terror" from the "Grindhouse" double feature.

I have to go now. I made a strawberry cheesecake because I had too many strawberries and had to do something with them before they went bad. What? That's a perfectly reasonable thing to do an hour after you take Vicodin. Also, this happened today. 

Saturday, April 6, 2013

My son asked me something that made me almost cry...

Jason asked: "How do you prevent fibromyalgia?" This discussion was brought on by the three-plus days I've been in a flareup. I was going to come over and whine on the blog last night, but, Kinky Boots was on cable (and on one of the high-def channels). Sure, I own the DVD, but I enjoy the serendipitous capture of a favorite movie on cable. (I even said on my Facebook status that instead of blog-whining, I was going to watch Kinky Boots and eat ice cream).

So, Jason and I discussed some of my physical issues. I have arthritis and tendinitis as well. We talked about how he's in better shape than I was at his age (I was actually pregnant with him when I was his age- I should probably mention that he's twenty-one years old). We talked about how staying active is probably the best way to stave off any "old-person-ailment". They don't know if fibro is genetic or what, but if people in your family have it, that may increase your chances of coming down with it. But then, that's the case with every disease and disorder, isn't it?

I have tendinitis in my feet and in both shoulders. The foot thing, well, there's not much that can be done. Bad feet run in my family (my dad's side). Interestingly enough, my foot problems started when I was pregnant with Jason. The shoulder problem- he's probably going to avoid that just because he's in such good shape. He has done martial arts since he was eight years old till he was around nineteen. That's when his work and school schedule kept him from being able to attend the classes. That's also when he got a membership to the Y and started working out there. (you see, the Y is open from 6 AM to 9 PM and the academy where he trained in martial arts only had classes in the afternoon).

So, we had a pretty good discussion on different things related to my pain issues. One of the big things is that he won't have to go through three pregnancies like I did. Pregnancy can seriously screw with your body. Not just weight gain and stretch marks. Plus, I have a thyroid disorder that probably isn't helping things.

And, just for fun... here are some random photos of my kids. (there's more blog after the photos)

The kids

This... yeah.

Jason doesn't like girl germs

"Pose nice!"

Jason, Kat, Christine

So, now that we have that out of the way, let's whine a bit, shall we? I don't recall how this one started, but I think it came on slowly over the course of a day. I muscled my way through it though, because you do what you gotta do when you can't take the pain meds. The next morning was one of those harsh gravity days. I felt as though I was being pulled down from the center of gravity in my body. Everything ached, all over. It was that horse-thrown feeling. Blaze just up and threw me, dragged me for a while, then kicked me square in the middle of my body and left me sobbing in a cold and muddy ditch. He ran back to the stables, fed himself, locked everything up and acted casual when the law came a-lookin' for him.

That description may or may not be partly or completely fictionalized. The tip-off should be that I don't own a horse, named Blaze or otherwise.

I learned during this flareup that the sofa is not a comfortable place for me. Oh, it is plenty comfy while I'm sprawled out there, covered in Chis (go back and read that out loud). But when I start to get up, that's when reality slaps me in the face and then points and laughs at me while I flail helplessly like an upturned turtle. Everything hurts worse when I try to move after starfishing on the sofa.

The other day, I was doing my 365 self-portrait. And the pain was bad enough that I was taking Vicodin on a six hour cycle (I did every day but Thursday, because I had to drive to Rockford for a photo gig). On Wednesday, I decided I'd go for the "playful fun" look in my 365 and tried to nail it... and at one point, the pain was so bad and trying to hold a pose was so difficult that I paused to take a breath. And when I did, my arm hit the remote button for my camera and since it was still focused, it fired a photo. I decided "fuck it, I'm using it" and I used it for my 365. So, this is what I look like in pain.

49 of 365 Part 4: Accidental shot, keeping it...
On top of the usual pain I've been slogging my way through, I'm swelling. Not everywhere, mostly just my legs and today my hands feel a bit puffed up. They look normal, so that swollen feeling may just be the pain and stiffness.

I take 90 milligrams of Hydrochlorothiazide a day. If I don't, I turn into that gross chick in the Willy Wonka movie who chews gum (she's gross from the fact she chewed gum for over a month, not because she ballooned up). And for the most part, I don't swell a lot. Just a little, most days. And some days, a lot. How much? Well, this evening, I took some crappy cell phone photos of my leg. Why just one leg? Because the way I was sitting on my bed, I could only get one leg up there and lean to get the best light possible. If I had both legs on the bed, I'd have leaned right off the bed and then I would have had a totally different story to tell you.

I pressed my finger against my ankle to show you the swelling.

When I wear my shoes (which are actually boots, Dr Martens brand hiking boots), the swelling is pressed out of my feet and ankles. It stops at the bottom of my calf where the boot starts. Which looks hilarious when I take off my boots. The comedian Maria Bamford has a bit where she's talking about what's trendy. She says she expects that soon, the trend will be to be "MORBIDLY OBESE with tiny little Tweety Bird ankles!" and that's what it looks like when I swell while wearing my boots.

Here's a view from the other side. That dent under my ankle is from my slippers.

Overall, the swelling doesn't usually hurt. Sometimes, it makes my ankle hurt like I sprained it, but only when I stand on it. And some days, the swelling will be shockingly huge (I wouldn't even call this "shocking", just "a lot") and on those shocking days, my skin aches from the feeling of being stretched. Today, though, the swelling isn't making my skin hurt. What will happen is that when I go to bed and elevate my feet, the swelling will start to recede and with that, my skin will itch. Like a Riverdancer with restless leg syndrome.

My hands have been aching for days now. So any plans that I had to reclaim the heavyweight boxing title are out. There's no way I could win a fight right now. Maybe a street fight, because at this point, I could paint myself green and pass myself off as the Incredible Hulk. Well, more like Credible Hulk and I'd overpower my foes with the amazing strength of logic and back that up with sources.

So, here we are, listening to- or reading about- me complaining about this disease. I wouldn't wish this on anyone. Not even my worst enemy. Well, maybe my worst enemy, because then I know I'd have a fair chance at winning a fight. In the midst of all this pain and hurt, a few good things have happened this week. I discovered that some awesome people- people who I find to be amazing and wonderful and I feel grateful they spend any time with me- actually like me and my work. You know how we're our own worst critics, well, I have some real live humans that I actually know in real life who take that Worst Critic out back and kick the shit out of her and then bury her in a shallow hole and cover it with leaves so no one will find it till after the first big rainstorm of the season. I almost cried in a conversation- but I held it together. I was totally cool and not at all geeking out all over the place.

And the other good thing? One of my photos- with my photo credit- might be in two local newspapers. So, yay for that.

Yay for awesome friends and yay for local newspapers. And yay for favorite movies and yay for ice cream. Yay for Amanda Palmer music and for Steam Powered Giraffe and yay for Mandy Patinkin.