I should know better than to jinx myself

Lately, because our weather has been so completely insane, I've been waking up at a 7 or 8 on that pain scale. I take my morning thyroid pill (by itself, because a million years ago when they put me on it, they said take it in the morning on an empty stomach) and then I take my muscle relaxer (around 30 to 45 minutes later) and an hour after waking, I take the rest of my "stay-alive" pills (some blood pressure meds, allergy pill, asthma preventative, and vitamins). And I take a couple Vicodin.

Then I get really tired and have to go lay down. (not always, but more than I'd like, so I often times will fight that urge to go collapse on the bed I was just in about an hour and a half before).

Today was one of those days. I ended up back in the bed by 7 AM (I get up as close to 5 AM as I can). When I woke up from the weirdest-dreaming-nap I've had in a while, I was okay. I felt a bit stiff, but it was nothing a hot shower couldn't... well, "help" isn't the right word. Let's just say the hot shower didn't make things worse.

I went on with my day. I ended up vacuuming the living room. I had to clear the snow and ice off my truck because I had to run to the post office. We had rain and 50° Fahrenheit yesterday and then the temps dropped drastically and I woke up to several inches of snow and ice and 11° and wind chills in the negatives. So, I vacuumed and I said: "I don't feel too bad today." I did, I said it out loud (and that's where I jinxed myself).  Then cleared off my truck. I went to the post office. I came home.

And that's when today decided to roundhouse kick me in the back of the face. It started in my legs and feet. My feet are killing me today. And my legs got sore. Then my large muscles started to tighten up and it felt like they were pulling on the joints they were closest to (they still do).  Around 430, 5 PM, I went upstairs to lay under my fleece blankets and hopefully stop this flareup from becoming a bad one. An hour later, it was no better. And now I'm downstairs, having taken my usual nightly dose of Vicodin about a half hour ago. The muscle relaxers come any time (probably after I type this).

So, what did I do today?

I vacuumed the living room and I went to the post office. And that wore me down and kicked my teeth in. That is so not fair. I was having a good day too. And the worst part is that I still have to eat dinner. And that means I have to get up to cook something for dinner. I don't want to get up and cook something for dinner and I've taken three 5/325 Vicodin on an empty stomach, so I can't drive to get myself something. And I'm home alone.

Well, not entirely alone. But the dogs can't reach the pedals in my truck and I'm pretty sure that all the fast food places around here don't speak "Dog".

"Hullo? Yes, I would like a number 14 combo meal with extra Milkbones."

And I blather on endlessly yet again...

Over on the Facebook, this awesome and wonderful lady posted a link to this article on Squidoo about being chronically ill. The writer talks about being chronically ill and battling with the pain and leading a "normal" life. She even went to the Bristol Renaissance Faire and in that article is a photo of her with one of my faire family, Raymond. He's dressed as a gnome.

But, that article touches on a point- how do people with chronic pain or some other chronic illness do normal things? I'm lucky in the sense that my issue is merely physical pain. I can't speak for anyone who has a mental illness that screws with their life, I can only speak for the pain.

I get asked, mostly during the faire season, how is it that I can go all day at the faire with the walking, standing, heat, those clothes, the heat, the hills, the gravel, the heat, the dust, the sun, did I mention the heat?

The people who ask me usually don't live with, or know anyone who does, chronic pain. The ren faire is my one thing. I survive my day at the faire by taking a lot of Vicodin. I take it on a schedule so I'm never without Vicodin in my body. (except for that one day)

The faire also has a lot of places to sit down. And if you're nowhere near a bench for resting, there are stages and shows all over the place where you can sit in the audience. That's how I caught the Barber-surgeon presentation a few years back. I just needed to sit down and rest and the show was about to start.

So, we have extra pain meds and sitting. Lots of sitting. My pain, also, gets to a point that remaining standing is the only thing I can do, because staying upright is just easier than sitting down and trying to get back up again.

The most important thing that helps me cope with the pain at the faire is my friends. The people I know there are the most amazing and supportive people. There are the ones who continually check up on me (and there are others like me, they also check up on them). There are the ones who are amazing and funny and help me forget how much the pain sucks. And they never cease to surprise me with their understanding. More than once- and I admit, the reason it surprises me is that they were men (an explanation after this paragraph)- someone said, in reply to something I had said: "Yeah, but you have [fibro/that pain thing/chronic pain]..." and they weren't being sarcastic or judgmental. They were genuinely aware of this stupid disease and the amount of discomfort it causes people. The awesome lady who posted that link that set off this blog post said to me that I was the most cheerful person she knew with this stupid disease (that's my word- stupid- not hers). And that's part of the thing... I can't let the pain win. I can't let the pain make me miss a day with all those people. If I wake up on a faire day, my motivation to get out of bed and put on those (surprisingly comfortable) clothes is that I get to see those people. And while most of them are playing characters, they still mean it when they ask me how I feel. Plus, they're hysterical and they say laughter is the best medicine. And if laughter is the best medicine, then the ren faire is the best pharmacy.

Now about that "surprised by the men"... I've been married for over twenty-six years. Eight years into the marriage, he became disabled from a stroke. You've all heard the story. He was twenty-eight and had a massive stroke that left him paralyzed on his right side and with speech and communication disorders. Part of those "communication disorders" is that he has trouble expressing emotions properly. He reacts poorly to serious situations. The best example I can give is when I slipped on the ice on our back deck and tore up my knee (in March of 2006). After I iced my knee for 45 minutes, I used crutches and went to the scheduled parent/teacher conferences. I dropped the kids back at the house about an hour later and told them to tell him that I was going to the ER for my knee. When I got home hours later, he had cleaned the entire bathroom. Why? Because he thought it would be easier for me on crutches. THAT was his concern for me. But of course, he didn't say that and he did absolutely nothing else to help me. He couldn't express himself, so he did what he thought was right.

He also doesn't believe that I'm in as much pain as I am. He thinks I exaggerate it. I've mentioned this before and I've even mentioned how I thought he was "getting it". He's not. He doesn't get it. He doesn't understand how I can go one day almost fine to not being able to move the next day. He has no grasp on it and has no desire to learn anything about fibrofuckingmyalgia. He doesn't care about the peripheral disorders that are associated with it (Reynaud's, which is merely annoying and not terribly painful; neuropathy in my foot, which alternates between tingly numbness and outright agony). When I try to have a conversation with him, to get him to understand what I go through, he tunes me out. Or worse, tells me: "I know you're in pain, you TELL me ALL THE TIME."

So, when those male friends actually spoke with understanding, it surprised me. Because I forget that the rest of the world isn't like the person in the other room watching "Person of Interest" right now. For the record, it surprises me when women speak that way, too, but not to the degree that the men do.

Let's end this on a good note. Because this was not at all fun or funny. Here are two things that happened to me this week... two awesome things.

The Superstrobe Sunday Lighting Workshop  where, on Superbowl Sunday, I drove to Chicago and got to spend hours with some of those wonderful people (and a few new ones) that I mentioned up there.

And, the Maxx Empire Naked Mask Project. My right hand and fingers were in agony when I got done with the little details, but it was worth it.

And as of right now, we're 96 days till the Janesville Faire and 148 days till Open Wide The Gates!

Bring it on. I'm totally ready for it! Wait... We're only three months from the Janesville Faire? Dammit, I still have so much sewing to do! I better get to work on that!

There are some questions about this stupid disease that I'd like to answer

I was reading an article that was linked on Facebook by one of the many fibro pages I follow. They were all cool with some of the info, but then realized the website and article were sponsored by a large brand name medication aimed at fibro sufferers. That sort of takes away from a few things. But, the first part of the article asked a few questions and I want to answer them for you. Because I like you and I think you like me and because you're reading this, so you're expecting me to write something worthwhile or at least, you know, related to fibrofuckingmyalgia.


How did your fibromyalgia begin? Suddenly or slowly?  Mine started slow. I thought I was just getting older. My teen years were spent marathon cycling around Anchorage, Alaska and whatever was within a 15 mile radius of the aforementioned city. When I left Alaska for the Always Brown Kansas (brown in the winter because it rarely snowed and brown in the summer because it was so freakin' hot), I stopped cycling. There were no bike paths in the area and I didn't feel safe riding on the side of the road. I'd also injured my knee (the first big injury) shortly before leaving Alaska, so I was still recovering.

So, as things started to break down, I thought: "I'm just getting older. Arthritis runs in my family. Oh, I suddenly feel the urge to knit and put bird feeders in my yard. YOU KIDS GET OFF MY LAWN!"

The aches and pains that came on were slow and not intense. I've had foot problems since I was pregnant with my second child (that child will be 21 years old in three days). While pregnant with him, my feet were uncomfortably hot. I rarely wore shoes. I also preferred to stand in the kitchen on the tile. I was a walking, talking, breathing, whining cliché. I was barefoot, pregnant, and in the kitchen. When I did actually wear shoes, I wore the cheap canvas things from K-Mart. (you see, kids, back in the olden days, K-Mart was like Walmart, but not quite as good. Not as bad as Big Lots, but close). So, I developed heel spurs and various -itis related issues (bursitis, tendinitis, arthritis).

In around 2003, 2004, those mild aches and pains started to become noticeable. I was pretty good friends with a divorced dad at the middle school and he would invite our family to do things with his- like a canoe trip, museums, that sort of thing. Day trips that were loads of fun for all of us. When we'd get home from these outings, I was always tired. I was always sore. But, I walked four miles a day and did 30 minutes of yoga every day. I shouldn't have felt sore from walking around the Milwaukee Art Museum.

I used to write a column for a now-long-gone website and one of my articles was a review about the terrible IMAX movie we saw at the Milwaukee Public Museum. While it was one of the funniest things I remember writing, I'm just going to share the end of it. After I said what I had to say about the movie (which was so boring that I dozed off), I said that I had to wrap things up because I was sitting at my desk with my foot in a bucket of ice because it was so sore. That was when the pain started to become noticeable and it started to interfere in my life.

I eventually had to cut my walking down from four miles to three. Then to two. I cut out the yoga. I was too sore, too tired, too worn out. When my walk dwindled down to barely a half mile, I just stopped altogether. After gaining some weight, my doctor ran some tests to make sure I didn't have anything else and then decided my thyroid numbers were "borderline enough" to adjust the dose of my thyroid pill. That helped a bit. I was ready to get out and walk again, having regained some energy. Then, March 3, 2006 (about a year after the museum visit and six or eight months of not walking), I stepped out onto my back deck and slipped on the ice, tearing my knee up (again).

That was the beginning of the three year saga that led to a total knee replacement and that knee replacement triggered a yearlong fibro flareup that was undeniably real. I had my TKR in March of 2009 and in late June 2010, I was officially diagnosed with fibro.

How long did it take to get an accurate diagnosis of fibromyalgia?  If you're still reading, then you know that serious issues started in 2004, very serious and undeniable issues in 2009. I'd say I had about four years of diagnosis problems. Looking back, I can see signs of fibro before 2004, but obviously I didn't know it was fibro back then.

What fibro treatments are working for you? I take Vicodin for pain (three 5/325 tablets at night, sometimes I take one or two in the daytime, but I don't like to and only do it if I HAVE to). And I take 30 mgs of Cyclobenzaprine a day. One 10 mg tablet in the morning and two 10mg tablets at night.

But, this past year's weather has been pure hell. The ever-changing weather (and I mean seriously changing: we had mid-50s one day and the next, we were in the single digits) has been kicking my ass six ways a day. For the most part, that mix of drugs has been working.

So, if you've read this far, I'm sorry this wasn't funnier- or at least, more entertaining. I'd dance for your amusement, but I have to go finish something I've been working on in the kitchen. It isn't a secret, but I'm not sharing photos till it is completely done and if I keep dancing for you, I'll never get it done. And you'll go blind because I'm such a terrible dancer, you'd gouge out your own eyes with a broken corkscrew to make it stop.

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.

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.

AARGH! The itching! SO MUCH ITCHING!

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.

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.





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....




















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!



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















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.