Saturday, June 18, 2011

Rough night, then day, then night, and day again... and no awesome story to go with it all

Friday wasn't all that rough, really. I mean, I was tired from the night before, which was one of my "up till four AM" nights. It wasn't the pain so much as it was just my mind feeling so alert. No reason, either. I have no deadlines or anything. I've got nothing going on that would create that kind of stress. At least, I don't think I do.

Friday though, I had to go to Home Depot. I didn't want to, but the disabled guy is rebuilding the deck. And he was going to re-use the steps on the back part of the deck. He ended up breaking them (or they were so old they fell apart, I'm not sure). He told me, "If you want steps anytime soon, you're gonna have to go get them yourself."

I wanted those damn steps because I don't like letting the dogs out on the driveway. Its a clear shot to the street, dammit. They're (mostly) little and would get hurt or worse. Not to mention that Gypsy is a people-hater and there are people who walk down the sidewalk.

So, I dragged myself to Home Depot. Hot. Humid. Bleh. I got the two pieces of pre-cut wood that makes a step-frame and then picked up some flowers for myself. OH, speaking of flowers, the disabled guy threw away my dried roses and I am not happy about it. I have yet to get replacements, because roses that are fresh-cut from the bush don't dry the same way as flower-shop roses do. (I have a rosebush in my yard, I've tried it!).

Where was I? Oh yeah, Friday. Fucking Friday. At the end of the day, I was fairly tired, I mean, come on, I had four hours of sleep and had to spend two hours in the heat and humidity. Through the day, I was sore, but not much more than I am usually. I function basically at a middle level on that pain scale. If I'm not in tears, that's a normal day.

Last night, I went to bed at ten PM. Laying in bed, not moving... my muscles felt like they were on fire. The burning feeling I had felt as though my muscles were expanding against my skin. If I dared to move, it felt as if my muscles were going to escape through my skin. In a most angry way. I can't imagine anything bursting through the skin in any manner but angry...

After being very still for maybe ten minutes, I decided to move. Big mistake. The pain seared through my body as if I'd just been punched in the gut. I felt like gravity was pulling down extra hard. I felt as if I had to peel myself up in stages. First my hand, then my elbow, then my shoulder... And it hurt so bad that I cried. I fucking cried from the pain. How I even had pain was beyond me. I'd taken my pain meds on schedule (Vicodin at 6PM, muscle relaxers shortly after 7 PM). And yet, here I was, unable to move without cringing. I don't know when I finally fell asleep, but I know I was awake for at least an hour, maybe more.

When my alarm went off this morning, I could barely sit up. I dragged myself upright and sat on the edge of the bed for a few long moments. I did my usual morning stuff- Internet things, took my morning stay-alive pills, ate some cereal. I had a 90 minute hot flash during that time too, so not only was I itchy and in pain, I was clammy to the touch.

I dragged myself back to bed and the disabled guy was already up. I turned the AC down (you know, so it'd blow cold air for longer) and turned my fan on high. I sprawled across the bed at an angle and waited for sleep to come. It took a while but I had a broken, sporadic nap. The good thing was that the AC and fan killed the hot flash.

I sit here now, still exhausted, still having that burning muscle pain. When I do actually stand up, my muscles scream a symphony that sounds like all the instruments need to be tuned. My youngest child plays the violin, I know what out-of-tune sounds like. If you're not sure, just think of the "music" that "those damn kids these days" listen to and you'll get it.

My muscles feel like they're being compressed together. You know how a good stretch makes you feel better? Yeah, the opposite of that feeling.

I fucking cried over it and it pisses me off.

But, here, look at these photos... this is what I do when I feel like shit.

Ivy Geraniums

Ivy Geraniums




There you have it. That's what I do when I feel awful. Would you like to see what I do when I'm not feeling like I've been thrown by a horse onto the asphalt?

I love this one

Heavy morning dew

Wednesday, June 15, 2011

The rain brings pain mainly to my... well, I'm not a poet.

June 15th. Wednesday. The dogs were freaking out, around four AM. Why? Thunderstorm. The dogs do not like the thunder. And who could blame them, really? They don't know what it is, they just know it's loud, they can feel it in their paws when it happens, it rattles the house and they have no clue who is doing it to them. So, I trudged downstairs and tried to sleep on the sofa.

I was covered in Chis (say it out loud) and had the German Shepherd half-laying on my legs and feet. Her other half was hogging space on the sofa. And if you know fibro, you know that the lack of sleep mixed with the weather changes and humidity... well, it makes for much pain. Add to that the tiny, pointy paws of four Chihuahuas- one that weighs fourteen pounds (he's a freak, don't judge him!) and a 75 pound German Shepherd using my lower half as a pillow... you can imagine that I hurt. I'd call today a 9 on that 1 to 10 pain scale. Six or seven, if I don't move.

And with the hurt- which is the all over flu-like muscle pain, with some focal areas (my shoulder and my hip, for instance)- my skin is all itchy. That burning, under-the-skin itch. And fatigue. The exhaustion. I felt so physically worn out, like I'd just worked all day in the hot sun. You know, when your body is spent, but your mind is still awake and going a hundred miles an hour. Yet, when 6 AM rolled around and I had to take the dogs out, I took my camera with me.

Then again at around 1030 AM, the camera, the dogs.

And then around 530 PM, I took the camera outside again. In the morning, I took about 25 shots. In the mid-morning, around a dozen. In the late afternoon, 29! Yeah, I took more than sixty photos on a day that I felt like absolute shit.

After each "photo session", I uploaded my photos, edited and resized them for the Facebook page, and put them into an existing album. But when I got through the 29 evening photos, I decided to put them all in one place, for easier sharing. Despite the pain, in spite of the pain- whichever you prefer- I went outside and stood there, happily snapping photos. It took the focus off the pain and even though I felt absolutely horrid, I still felt like I accomplished something. I did something good and now I share it with you.

The June 15th "In your FACE, PAIN!" Macros This damn disease may drag me down, cause me to move slower, but I'll be fucked if I'm going to let it stop me. I refuse to let it stop me. There is no "play through the pain", there's just "do"... and that's all I'm doing.

I refuse to let it win.

Sunday, June 12, 2011

My Youngest Child is now a High School Graduate

Last year, my son (the middle child) graduated from high school. It was cloudy and at the last minute, they decided to have the ceremony indoors. They crammed about 900 people into the small gym (that would be 900 spectators on top of the 400-ish graduates). No air-conditioning. No ventilation. It was so hot that I quite literally sweated the entire ninety minutes we were there. I also hadn't been diagnosed with fibro yet. That happened two weeks later.

I made my son part of my 365days self-portrait. Day 119 of 365.

119 of 365- Crushing your head!

While I was in labor with him, I watched "Kids in the Hall" till the nurse wrestled the remote from me and turned off the TV.

Here's the "rejected" self-portrait. I did this while we were standing outside.

119 of 365- rejected

Now, it never did rain last year. I know this because when we came outside, my windscreen was still clean. Had it rained, it would have been spotty. We suffered for nothing.

This year, it was cloudy. It rained the night before, in fact. But they said it was going to be held outside. And it was. And it was cloudy. There were moments of the sun attempting to break through the clouds, but it never did get sunny. PLUS, it was cool. Around 60° Fahrenheit. There was a slight breeze off the river (the kids' school is literally on the river's edge). So, everything was aiming toward being a good day for me. I mean, aside from having to sit in one position without luxury of moving around or straightening my legs.

A side note- with an ass as large as mine, one would think that I'd have some cushion for sitting on a metal bleacher. But no. Not true. My ass went between "numb" and "pain".

Back to graduation day.

I woke up at my usual 5 AM and came downstairs. I do what I do every day- grab my bottle of Synthroid (I've been taking varying doses of Syntrhoid since I was diagnosed with hypothyroidism at age 18) and get my one Diet Mountain Dew... except my bottle of pills was gone. It wasn't in its customary spot on the counter next to the CD shelves. The Disabled Guy had been bored on Friday because it was raining and he couldn't work on the deck. So he "cleaned" the kitchen. Well, I checked my plastic container full of pills. (I have other stay-alive pills I take an hour after my thyroid medicine). Not there. Not in the cabinet with his pills. Not in the cabinet with the first aid stuff and OTC medicines. Not on the floor. Not in a drawer. Not here. Not there.

At 505 AM, I marched (yeah, I was pissed) upstairs. I woke him up with a shake and demanded: "Where are my pills? White bottle. Next to the CD shelf. Where are they? I NEED those pills."

He half-mumbled they were there. "No they are not. They aren't there and they're not with my other pills."

"Are you sure?" he asked.

"Would I be up here if I hadn't checked every-goddamned-where?"

Everyone who knows me knows that I don't walk up those goddamn stairs unless I absolutely have to.

So he got up. I went back down to the kitchen and took everything out of my plastic box. He came in and said, "Aren't those it?" It was the box that my asthma "twisthaler" comes in. I have to keep it because it has my RX number- which I need for calling in refills every 21 days. See, he tried to throw it away and we had a heated "discussion" as to why I can't do what he does with his medicines (he gets 90 day supplies. My asthma stuff is a 30 day supply).

He eventually had to go get the trash from the bin outside. The entire time, I was ranting about how I get up at the same goddamn time every day for a reason and that I take my pills at the same goddamn time every single day for a reason. At 530 AM, he found my pills. In the trash.

Two hours later, my hands and wrists ached. I am merely assuming that the stress increase and "fun" of dealing with that is what caused the aching. And I figured I got off easy. Because I still had to get through the graduation ceremony.

This is a screen-cap of the map of the kids' school. The red X at the bottom (with the green X) is where we started. The red line is the route we walked to get to seats in the bleachers at the football field. (the purple squares are where the graduates and the stage were set up). The green line is the route back I took with Ceej to get back to the truck. Now add three times as many cars. That's why I had to park where I parked. Instead of parking there, people started parking along curbs and other "no parking" zones (because they make allowances for events like that). I figured "Fuck it" and parked in the first available spot, so I wouldn't have to worry about getting stuck trying to pull out from a curb.

The two green Xs in the middle are where we stood to wait on Ceej and then next to the building where I took some photos of her with some friends, respectively.


So yeah... I walked a looong way for the graduation. And I'm so sore today.

I keep trying to come up with a description of how shitty I feel on a day-to-day basis. I've used the "thrown from a horse" feeling, because I can relate to that and so can some others. A lot of people are fond of the "hit by a Mack truck" description, but I've never been hit by a truck, Mack or otherwise. Also popular is the: "You know that muscle-achy feeling you get when you're coming down with the flu? Yeah, that..." description. And that's pretty accurate.

On my good days, the days where I consider it "feeling good", I feel like I'm coming down with the flu. As long as I don't move or breathe too deeply or stand, or walk, I feel okay. But the second I move or breathe or stand... that's when everything hurts. The shower hurts to hit my skin. Clothing hurts against my skin. The wind hurts.

So, now we've clarified that I hurt. I went to the store today and that didn't help.

Enough with the whining... here are some photos.

The good shot, for Gramma and Grampa

Picture 1 in day 118's triptych

I did a triptych of three photos for my 365days submission for Ceej's graduation.

118 of 365/2- Me and the girls

And the one photo that I didn't use-

Poor Kat...

At the high school, this is how far away my older daughter and son were sitting from us (they drove separately and arrived almost late).

That arrow is how far away Jase and Kat were.

The arrows are pointing to my other two kids

Riveting, isn't it?

There she is!

Like we ever had any doubt!

So my muscles ache. I'm exhausted. I would like to be sitting here wearing nothing but a velvet sweatsuit three sizes too big and inside out, but instead, I'm wearing jeans, T-shirt, and my red Docs. Because I had to go to the store. Every move I make that requires more than my hands typing, I ache. Screamingly so. If I had anything else to do today, I'd probably drop to the floor and play dead to get out of it.

By the way, I still hate those drug ads. The one with the woman who tells us she learned that nerves attached to her muscles cause her pain.

Wednesday, June 8, 2011

Don't Cry for MEEEEEE!

One of the first reactions I get when I say: "I was diagnosed with fibromyalgia last year" is "Oh my gawd! I'm so sorry!"

And I try not to fill my Facebook status updates with my random whiny rants about how much it sucks. But once in a while- like today- I'll bitch about it. Because it keeps me up at night and I have nothing else to do. Oh, sure, I could work and put new listings up in my etsy shop, but pssh, it's the middle of the goddamn night! And inevitably, someone shows sympathy- and that's fine, and in the course of the comment-conversation, it turns to medicines. I just want to say a few things here...

You don't have to feel bad for me because I was diagnosed with this very real and debilitating disease. You don't have to make the sad face and say how sorry you are. Because, you see, now that they know what it is, they can do something about it. And they're trying. Everyone's fibrofuckingmyalgia is different. Some people get that widespread pain those TV ads talk about. Some get localized pain (also referred to as "hot spots"). Some people just get the pain, but not the crushing fatigue. You get the picture. And that's where the drugs come into the discussion.

When you're talking to someone who has had a problem for a long time, odds are, they've tried it. Whatever it is you're about to suggest, they've already tried it. And it either worked for them or it didn't. Or it worked for a little while, but then the side effects interfered with something important like, oxygen... or blinking. And I don't expect people to keep notes on my life or keep track of the minutia that is my treatment, but everyone pretty much knows that all my medical dealings (aside from the total knee replacement) are handled by the veteran hospital. And the VA has a protocol for treatment. And we have to follow it or I won't get treatment. So, we're taking those steps ('we' being myself and my rheumatologist). She can't skip anything- like say, jump right into the name-brand medicine you see on TV (and how fucking annoying are those ads, really!?). To skip over a treatment option, something has to be wrong. Something big, like having your legs, feet and ankles swell up like the side of Rocky's face after Apollo Creed decided to make meatloaf.

It is common knowledge about where I go for treatment. I've told the story so many times in the last year. When it comes down to getting that drug they talk about in those annoying TV ads ("I learned that connected to our muscles are nerves!" Really? You learned that? Guess what, I learned that the sky is blue! HOLY SHIT! RIGHT?!), I won't get the name brand. I'll get the generic. That's how the VA hospital does things.

Now, back to my original point- don't feel bad for me, really. It's a good thing that I was diagnosed with this disease. Because knowing what it is makes it a little easier to deal with. It doesn't make this fickle bastard easier all the time, but knowing there's a name to it helps. I'm typing this at 330ish in the morning because when I went to bed last night, my feet and legs started to itch. And I mean itch. That under-the-skin itch. That four-million-hairy-legged-spiders-trying-to-escape-from-my-pores itch. The internal itching that makes me want to douse my body in lemon juice and then roll around on broken glass itch. After an hour of twitching and staring at various things in the dark of my room, I got out of bed. I've been sitting at the computer, acting like a general fuckwit on Facebook (hey, it was all in good fun on a group page where being a fuckwit is a plus), resizing photos and watermarking them for listing on etsy later, and playing Windows7's idea of solitaire (the flipping sounds of the cards just tickles me).

And I was bitching in a status update. And that status update conversation is what spawned this blog.

So, if you've kept reading this far, thanks. And remember- when someone tells you they've tried everything- chances are, they have. No, you don't have to say it- they did, really.

Also, for shits and giggles, here are some photos I took today. I went outside in the 98° heat three times today and took about 60 photos total. These are just a few- for those who don't know, all these flowers are in my yard.

Tiny bloom with dew...

I like this one

I love this one

Daisy center!

Again with the sunset

While I was going through and picking photos at random, I had two thoughts- "these are what the disabled guy says are not art."

And, "I'm quite proud of myself for getting outside three times today to take these photos."

Then it hit me.

The extra physical exertion in the extreme heat (there was a heat advisory out today) is probably what triggered tonight's lack of sleep and excess of itching.

Sunday, June 5, 2011

My right foot... and some kind of angry ranting that has nothing to do with my foot.

I finally added the word "fibromyalgia" to my Google Chrome spell check because it kept coming up as a misspelled word. Then I had to add it with the "F" capitalized because that was still misspelled. I should also add "fibrofuckingmyalgia" because that's the proper way to say it. And if you don't agree, then you have never felt the full brunt of it yourself.

Onto my right foot.

A few weeks ago, I got myself a pair of shoes that are similar to the name brand... they help you "shape up" your body merely by wearing them and walking around. I figured they'd be good to build up my thigh muscles. My quadriceps are shot. My right leg is from the knee injury (the eighth or ninth in 20 years that set off this whole debacle). It never really healed properly and I spent three years unable to use it to go up and down stairs. My left one is shot because of the delay in recovering from my knee replacement that was caused by the fibrofuckingmyalgia. Basically, my thighs are weak. Which sucks because I used to have great legs. (I also used to ride a bike everywhere, back before it was all hip and cool to do it).

So, I got myself these shoes, thinking it was a great way to start building my thigh muscles. And it would have been. One day, while wearing them, I was at my parents' house. I typically stay for about an hour or two, no biggie, just visiting. The top of my right foot started to hurt. A lot. A burning, stabbing pain. I thought it was the position I was sitting in, because I was in an armchair. I normally sit in my computer chair or on our sofa. The armchair was a little higher than I'm used to. I went from their house to the grocery store. And the pain got worse and worse. When I hit the pavement outside the store, I took my shoes off. I walked back to my truck in my sock feet.

Then it kept happening, but I wasn't putting it together with the shoes. They felt fine in all other aspects. I don't know how long it took, but the skin on my foot went numb. If I run my fingers across it, I couldn't feel it. But if I pressed down, I could feel the pressure under my skin. So whatever it was, it was nerve-related and surface only. I did some Google-searching and discovered "neuropathy" and it has a connection to the fibrofuckingmyalgia. Great, I thought. Just another thing to add to the list of fucked-up things that happen with this ridiculous disease.

Last week, our weather decided it was time to throw Summer temperatures at us full blast. I went two days straight without going outside (except to take the dogs out) and I didn't put on any shoes. The pain in my foot went away. The numbness stayed, but it wasn't painful at all. And on the third day, I wore my boots. It was when I put those shoes on again that I realized that was the problem.

I have no idea why those shoes hurt that way or cause that type of numbness. My daughter can wear them and she's fine. The numbness is slowing disappearing. In that needle-y, tingling, painful, wake-up kind of way. Plus, it itches. In that numb-on-top kind of way. So now I'm back to doing deep knee bending to try and strengthen my quads and hamstrings. I look ridiculous doing them, but when do I not look ridiculous these days?

As for the fibrofuckingmyalgia, it's still doing what it does best- making me fucking miserable. The weather changes are kicking me around, like usual. The heat and humidity is doing what it can to push me to the floor and beat me with a giant wet spaghetti noodle. I end up sore, sweaty and reeking of wet noodles.

I'm still taking the muscle relaxers at night (along with the Vicodin). Every day, my muscles feel achy and tight and they downright hurt when I try to stretch. As the day goes on, my muscles feel tighter and tighter. Then about an hour after I take my muscle relaxers, they go soft for a bit. I can feel the muscle relaxers start to wear off. It's very disconcerting. And every time I see that TV ad where that chick says, "I learned we have nerves connected to our muscles..." I want to punch a baby. Really? Nerves? Wow! I took 9th grade science class too!

I have one month to get this sleep thing worked out. In one month, Bristol Ren Faire opens and I can't have nights like this on a Friday or Saturday. I have to go to faire. I refuse to miss out because my body has decided that had to have this stupid disease. Also, it pisses me off that I'm almost embarrassed to tell people about it. Like they're not going to believe me. Fibromyalgia- real disease. And if you don't think that it is a real disease, I hope you get it. Yeah, you read that right, I'm wishing someone who thinks people are faking it would get this themselves. Then we'll talk about faking things, barometric pressure, and pain medicine.