Monday, January 28, 2013

It's January! No, it's March! Wait, January! APRIL! Wait, WINTER! SPRING! GAH!

So far this month, I've had more sleepless nights than I have in, I think, ever. I can't even remember how many times it has been. Twice a week? Those are the "insomnia-lite" nights. My pain meds don't do their job and I end up unable to sleep. And I try. I go to bed and I lay there. I stare at the ceiling. The wall. The other wall. I lay on my side. My other side. My back. My stomach. I give myself two hours. If I can't fall asleep in two hours, odds are, I'm up for the night. I usually end up awake till 4 AM and I take another round of pain meds and exhaustion takes over.

Last night was one of those nights (again). And I knew why, too. Yesterday's weather- we had clear skies at dawn, quickly taken over by clouds. It snowed big, fluffy flakes. Before I could grab my camera for snowflake macros, it changed to freezing rain. Then regular rain. Then snow again. Then rain again. And this was all within a couple hours. Then we had rain and sleet off and on all day.

Along with Insomnia-Lite, I've also had days where my skin was so sore or so itchy, I didn't want to wear clothes. But I did, because this is Wisconsin and it usually gets cold here in January. So, I've spent a majority of my days dressed in my way-too-big jeans and a super-soft fleece hoodie. Or, too-big yoga pants and a super-soft fleece hoodie. Today was one of those days. The feel of broken-in jeans on my legs all but drove me insane and I didn't even have them all the way on yet!

Now, I know exactly why I've had so many screwed up sleep nights and "I wanna be a nudist" days. The weather. We've had days so cold that we didn't crack 0 on the Fahrenheit. Wind chills in the negative double digits. You know- typical Wisconsin winters. I grew up in Alaska, this is nothing for me. And then sometimes, the very next day, we'd get up to the mid-40s (that's around 7 Celsius). Every couple days, we'd ride this roller coaster in "expected high" for the day.

And the rain. I mean snow. I mean sleet. I mean sunlight... wait... I've lost track. We reached the mid-50s last week. All the snow we did have melted off. Then it got cold again and we had a couple inches of snowfall. (I did manage to get a bunch of photos of snowflakes. Here's a link to that album on Flickr). Then warm. Then cold. Then warm. Then cold. And then I ran my head into a wall repeatedly because a coma sounded a lot more comfortable than whatever the hell I was going through.

Today, I've slogged along with the all-over body aching. My muscles are stiff and sore and they feel like they're pulled tight. No extreme itching, luckily (and shockingly, because it is really humid right now). When I stand up from sitting for even a few minutes, my body is so stiff it takes me a few seconds to make sure I'm upright and balanced enough to attempt a step forward. It is one of those days that if I have to stand up, it ends up much easier to just stay standing than to sit down again. Every muscle in my body is sore. I feel like I was thrown from a horse. And for those of you who have never been thrown from a horse, I feel like I've been hit by a truck.

I got to the point today where I went upstairs, peeled off those horrid clothes (the too-big jeans and super-soft fleece hoodie) and crawled under my soft fleece blankets. A few episodes of "Law & Order CI" and "Snapped" later, I forced myself to get up again. I still hurt. My pain meds haven't put a dent in this pain, but I can feel their effects in other ways... Affects? Whatever, I can feel that I've taken them because I feel tired. But my body is still in pain.

And to show you what I'm in for in the next few days, here's a screen cap of the local 5-day forecast from Weather-dot-com. I added the Celsius conversions in red because one or two of you would appreciate it. I put it in link form because it is kinda big.

Just now, typing in the html for the link, it thundered. We're having a thunderstorm in January. That's not weird at all.

Friday, January 11, 2013

Very interesting... [strokes chin, looks thoughtfully at the monitor]

Okay, let's get this out of the way- itchy, pain, pain, pain, itchy, my clothes suck, itchy, pain, pain, pain, why does my body hate me?, pain, pain, pain...

There, that's out of the way. A couple of days ago, I read two articles that were pretty interesting about fibromyalgia. I would have written about this sooner, but I had to read a book that was written by someone I know and based at the ren faire and it was so good that I didn't want to stop reading it just to bitch about fibrofuckingmyalgia again. ("Hail to the Queen" by Charles Braden on Amazon- for Kindle). But, here we are...

Firstly, I remembered something this morning, while I was dozing off to the sounds of... something, I don't remember what was on. "House", I think... but that's not the point. Back in the late 80s, early 90s, my mom and her siblings had some of their tissue biopsied. I may have written about this before, I don't remember now. The biopsy tissue was taken from their biceps. My mom, Aunt Linda, Aunt Joan (pronounced Jo-ann, don't ask, I don't even know), Uncle David, and I think two of my cousins who were around my age (at the time, early-20s). They all came back with the same "inconclusive results" that were labeled as "unknown muscle and nerve disorder".

We know for a fact that one of my cousins had fibro (she passed away a couple of years ago- she was 8 months younger than me). She was on that pain patch that you see the lawsuit ads for on TV now. My mom definitely had fibro, but she was on such a high dose of pain medication for her other problems that they didn't bother to treat it with anything (she was on Oxycontin, which is what I was on following my total knee replacement). I don't know if my uncle has it, but I think he does. But, my point is... fibro, it runs in our family. Of course, had I known then what I know now, maybe I would have been kinder to my body. Not so abusive. In my time cycling, I had a few minor accidents, some scrapes and a sprain or two. And two very major accidents. They were glorious.

In one, I flipped over my handlebars in an epic and Hollywood stuntman fashion, landed on the asphalt bike path and skidded on my face. My sunglasses kept me from shredding up my eye- ruined those damn things though. And my arm ended up pinned under my torso, so my knuckles and hand were just a mess. I was bleeding all over, including my leg. I don't know what happened, I didn't see any debris on the path. I got up and limped through the back gate to the Army base (Fort Richardson, great security you all had, I just walked right on) and went to the houses that were there till someone let me use their phone. (I was about six miles from home). The man who let me use his phone graciously drove me back to Anchorage with my bike. My mom- who I had tried to call at work- was gone from her office, left for the day. In the age before cell phones and I still managed to get home without panicking. Oh, her office was on the Army base. My dad also worked on the base, but I didn't yet have his work phone number memorized (he'd retired from the Army and then went to work for the Army in a different office, doing the same job as a civilian contractor).

The other one happened because I had a false sense of security brought on by the movie "Quicksilver" with Keven Bacon. I came around an RV that was parked in a parking lot (it was sideways and had a banner on it for a business) and I was being all cocky-Kevin-Bacon-bike-messenger-y. When I hit the parking lot on the other side of this RV, a van was coming at me. I hit my brakes as he skidded to a stop. I went down in a gravel-filled moment of glory and slid under the front of his van. It happened so fast that it looked like he hit me. Traffic stopped on Muldoon Road that day. (five lanes, the middle lane was for turning). I got up swearing about my stupidity- because, believe me, I knew it was stupid- and the guy driving the van was freaked out. I assured him he didn't hit me and that I was fine. I was bleeding down the side of my face, my arm in a few places and my leg- the pantsleg on my official Bartlett High School Rifle Team sweats was torn to shreds. A man in a camouflage uniform ran up and grabbed my face.

"I'M A MEDIC!" he practically shouted, "LET ME LOOK AT YOUR EYE!" (you see, the area I was in was just over an overpass that led to my high school and the side gate to Elmendorf Air Force Base, I was heading to the bike path that ran from that overpass all the way out to Eagle River, 13 miles away).

I kept telling him I was fine and I got to hear about five different versions from witnesses about how it looked when I went down. The driver was relieved he didn't hit me or kill me and was kind enough to give me a ride home. You can look at my senior photo and tell which side of my face was totally fucked up from that accident. The photographer (Northway Mall- whew, memories!) did a good job of touching it up, but you can still see it.

Why did I just go off on a tangent about bike accidents? Because I put my body through hell back then. And the parts of my body that have arthritis in them- well, I can feel where they could be linked to my cycling days. Or my hiking days. Or my days of walking up and down 22 flights of stairs five nights a week.

Of course, I can sit here with the hindsight of a 43 year old adult and say: "Oh, if I had known then... I would have been kinder to my body!" But come on, we all know that when you're 13, 14, 15, 16, and on up, you don't think that far ahead. Even if I had known then about fibromyalgia, I would have said: "NUH-UH! NOT ME! I exercise! I take CARE of myself!" Meanwhile, I skip along the asphalt like a stone on a pond.

So, these articles I mentioned... (once in the title and again briefly before the glimpse into my childhood- well, my teens anyway. As a child I was a tree-climbing, hiking, tour guide at a campground we used to frequent; Montauk State Park, ahhh, the olden days!).

Dammit, I did it again... THE ARTICLES!!

From The Skin Tissue To The Brain It all signals pain!

When I shared this on Facebook, I said: "This was interesting. I've joked that my body hurts so much and my skin itches usually at the end of a flareup because my super-mutant-power of fast healing is actually causing me problems. Turns out, that may not be so far off the truth."

That article was the reason I was reminded about the "unnamed muscle and nerve" thing my family was told was the result of their biopsies.

And then there was THIS article-

Morning Stiffness in Fibromyalgia

My sarcastic take on Facebook: "
From the article: "Fibromyalgia is a rather “messy” multi-system condition." REALLY? I was going to write something out here about how I actually have pretty severe stiffness and pain just from remaining seated for a long period of time. But it got long... I'll have to do a blog post about it."

And that brings us to where we are now. My stiffness from fibro doesn't just happen in the morning. It happens if I sit still for too long. Like right now, I sat down to start this blog and in the middle of me describing that first bike wreck, my daughter called and I spoke with her for about twenty minutes (she doesn't live here anymore). And then I resumed writing this post. So, add twenty minutes to the usual amount of time it would have taken me to write this. I know that when I go to stand up, I'll barely be able to move from the stiffness in my body. When I'm sitting at my desk, as long as I'm not concentrating on a task like photo editing or blog writing, I tend to move a bit in my seat. I move my legs or swivel in my chair some... I don't sit absolutely still. Because I know I'll be stiff when I try to stand up. Even that little bit of movement doesn't always help.

When I watch a movie or TV show in the living room, and I sit on the comfy love seat or sofa, when I finally do decide to move- well, I can't. I'm so stiff that I barely have the strength to get up. And once I get up, I can't take a step immediately.

Sometimes, it is easier for me to remain standing than it is for me to sit down for a short time. I figured that out quick at the ren faire while taking photos. Especially at the joust, because I can remain standing, but lean on the fence railing for support if I need it.

Stiffness in the morning... I wish that was the limit to my issues.

And now, because you've been so patient and read all this gobbledygook, here's my senior yearbook photo. (by the way, "gobbledygook" is in the Google Chrome spell check). I have another photo with the prerequisite "hand on the chin", but apparently, I don't have it scanned and uploaded anywhere. The hand-on-the-chin shot it was easier to see the fact that a week prior, I had a date with a gravel and asphalt parking lot. Since this was taken the summer before my senior year, this would be June or July of 1986. Took me an hour with a curling iron to get those feathered locks.

The "evidence" would be on the right side of my face in this photo. Under the eye and along the jawline. I was a freakin' supermodel with my gravel and asphalt makeover.

Sunday, January 6, 2013


There's pain. Of course, I have fibrofuckingmyalgia, there's ALWAYS pain. But today, while the pain sucks, this itching is driving me insane. My legs and my shoulders are in a fairly steady race of "Let's see who can itch the most constant and the most intensity" and my feet and hands are having the race of "Let's see who can itch the most randomly and shocking way so it interferes with what she's doing now".

It makes me want to hug a cactus. And I can do it too, the Disabled Guy has a lot of cactus plants. I could go over there right now and hug a few of them. But I won't, because that would mean getting up and walking over there. Just now, as I was typing, the palm of my left hand and the big toe on my right foot jolted an electrical itch through themselves. (and my ankle still hurts and now my wrist- on the opposite side- hurts too, so if I had to walk with a cane, I'd be completely screwed).

So, we've deduced that I'm a superhero for my amazingly fast healing powers and that "what doesn't kill us makes us stronger" bullshit. I'm convinced that this itching with the electrical-jolt thing is me trying to turn into a robot. Because robots need electricity. I know this for a fact because these three robots and a human or two sing about "Electricity is in My Soul" and who would know better about robots than an actual robot, right?

So, I'm a superhero robot with rapid healing ability and electricity in my soul trying to escape through my skin. I'm a walking stun gun! YES! No, wait, that's terrible. Who would want to be that? What an awful Superhero Robot.

Friday, January 4, 2013

The new year, another flareup, and something pretty

Here I sit, at 3 AM on a Friday morning. Last night, I went to bed between 930 and 10, because I was tired. I had a long day of holding down this office chair with my ass. That's a lot of work, I tell you what. (In reality, I had to go to the hardware store for steel wool. Imagine my surprise when the Ace Hardware guy knew what I was going to do when I told him I was using it for photography).

On Wednesday, daytime, around 330-ish, my body decided it was unhappy being upright and fully functioning. I fought the feeling for a while and finally at 4 PM, I had to admit that it was time to go lay down. Some days, my muscles feel electrified, like they're trying to twitch. They feel all tensed up and I refer to it as being "twitchy" although I'm not actually twitching. On those days, I can go lay down for about a half hour and be okay. I set an alarm in case I fall asleep because I don't want to sleep too long and have it screw up my nighttime sleep patterns.

So, I get into bed, fully clothed, shoes and all (my feet were off the edge of the bed). I had the TV on- I'm pretty sure it was a marathon of "NCIS" because, well, it was daytime and it was the USA network. I set my alarm for 430 PM, giving me plenty of time to cook dinner before my friend's radio show came on. Somewhere in that half hour, I got a text message. Then another. Basically, I was awakened about every ten minutes. When my alarm went off at 430, I did something I don't usually do- I hit "snooze" instead of "dismiss". I hit snooze enough times to make me not get out of bed till about 510 PM.

It did help a bit. I wasn't quite so twitchy and I did cook dinner before Shake Hands with Danger Radio came on at 6 PM. And everything was fine, for the most part. I've remained in a state of mild muscle tension. But the out-and-out pain comes and goes. And the freakin' neuropathy in my foot. That shit has got to stop. I can't stand that feeling. I try to describe it but "Numb with pain" makes no sense to the normies out there. Across the top of my right foot, from around the bend of my ankle to the big toe and second toe... that narrow triangle of area is a tingly-not-quite-numb feeling combined with a burning, tense sort of pain. Touching it has no affect (effect? It's after 3 AM, I'm not even sure I'm using "they're", "their", and "there" correctly right now). If I'm wearing a shoe, I have to remove it. Sometimes, sticking my foot up on that bracer thingy on the back of my desk helps, but not much.

My ankle-foot-calf thing is almost gone now. My ankle still hurts when I flex my foot out like a ballerina. Yeah, I can do that. I've never taken a dance class, I'm actually dancing impaired. It isn't pretty. And you can't really make fun of me because the whole spectacle is so frightening and sad to watch. I'm just really, really bendy.

So, what brings this blog post to us in the middle of the goddamn night? The itching. I went to bed tonight and about thirty minutes after I got all snuggly under the covers, with my swollen legs elevated, the millions of hairy-legged spiders started to break-dance under my skin. Combined with the tense muscles, I think I actually did start twitching. I tried to sleep for almost three hours. I finally got up. I stared at the wall, then the ceiling, then the other wall. I turned on the TV, I changed the channel a bit. Then I said, "Fuck this shit" and got out of bed.

I just ate some breakfast and took a couple more Vicodin. I'm tired now and the itching has gone down a bit.

But, let's talk about the something pretty I mentioned in the title. Tuesday, January 1st, I was having a bitch of a flareup. Gravity was harsher than usual. Pain everywhere. Aching joints. Tight muscles. If I tried to flex or stretch at all, I had a muscle spasm. So, I went upstairs, stripped down to naked and crawled under my soft fleece blankets. I watched the "NCIS" marathon and even dozed off for about ten minutes. I stayed in bed for almost three whole hours. And as long as I didn't move, I felt okay. But if I dared to move, even just my arms or a leg, pain would shock through that appendage and then cause the rest of my body to say: "Oh, is that all you got?! How about THIS!?" and it'd spasm something else.

I got up around 3, 330- I don't recall exactly. But it was later in the afternoon, close to sunset. I took the dogs outside and while I was waiting on them and struggling to stay upright and not turn into a human question mark on my deck, I noticed a couple icicles with sunlight glowing through them. After I got the beasts indoors, I picked up my camera. I tried a couple shots with my zoom lens. Terrible. I switched to my macro lens and got these- (and if you're on my Facebook, you've already gotten a look at these).

That's the setting sun behind the icicles.

Icicle in macro and the sunset

Another macro of a different icicle

I went inside and announced: "I can't pass this up. Fibrofuckingmyalgia be damned, I'm going down to the river and taking some photos."

The Disabled Guy said: "Whatever."

He was unconcerned as he was watching "NCIS" and repeats of a show he's seen several times is somewhat more important than his wife. Trust me on this.

So, I threw on some real shoes (I was wearing slippers, I put on my Docs) and headed down to the river. And then this happened....

Sunset down at Rock River

Sunset down at Rock River

Sunset down at Rock River

Wind-bent branches

Sunset through the branches

Don't feed the waterfowl!

Trees at sunset

ABC Supply with the sunset reflected in the windows

Sunset down at Rock River

There are a lot more shots. A lot more. So, despite the flareup and the pain (and the Raynaud's that flared up because of the cold), I call that day a win. Because I got out and I did something productive. I hurt like a sonovabitch for hours after and my Vicodin did very little to help me, but goddammit, I got out there and took photos.

And today? Well, yesterday... you know, THURSDAY... I was going to go take photos of a section of the river that was iced over, but the ice was so flat and smooth it reflected the shoreline and trees like a mirror. Except when I stepped outside with the dogs for the second time that morning, it was snowing. Tiny little dandruff flakes.

How tiny? THIS TINY!

For scale

And these few photos are just a portion of the shots I got from that tiny snowflake flurry.

The snowflake clung to the fuzz on my scarf

I love the background here


Deck rail post

On a red-painted plant stand

One of the two snowflakes

Clusters of snowflakes

So, no matter how bad fibro makes me feel, as long as I can get myself upright and out the door, I know I'm gonna be okay. I know I'm lucky, too. There are people who can't get themselves upright. They can't get up or get out or do anything they enjoy. And sure, I hurt from it, and I pay for it later, sometimes for days. But dammit, I'm lucky. I'm lucky I can escape with that Nikon D5100 in my hands. I'm lucky that I can do this and then share this with all of you. (yes, you! And you too! Yes, even you!)

It has taken my 30-ish minutes to type all this and to get the html for the photos and so on. Even though I had a rough few days this week and tonight has been a terrible sleep night, I know how lucky I am. And I'm grateful that I can lose myself in snowflakes for ten, twenty or even thirty minutes.

I hope you enjoyed my photos. Because I enjoyed taking them.