"Hmm, I need to blog about this..." ... "Interesting... I should share this on the fibro blog..."

Aaaand, then I forget. I get busy or distracted by something shiny. I intended on keeping track of things through this blog as a way of being able to look back on this or to help others realize they're not alone. That's a huge thing, by the way, not feeling like you're alone. I live in a house with people who do not give a damn how much I hurt from day to day or if my fingers are numb and tingly (they are today, by the way). And now and then, seeing that someone else has this very same problem... it feels good to know. It was a relief, that day, in the VA hospital when my doctor said, "You have all the classic signs..." I couldn't believe it. I kept waiting for a "but..." and she never said it. She just reiterated that I was, indeed, suffering from fibromyalgia.

Today sucks for two reasons. The spouse and the son came home on Wednesday night. And I haven't slept good since. When I sleep, I rarely move from my little bubble of space, even when I'm alone in the bed. It comes from almost thirteen years of sleeping next to a disabled person. (You're thinking to yourself that we're closing in on sixteen years of disability and how is it I've only spent thirteen sleeping next to him. I'll tell you: the first year, he slept on our hide-a-bed because he couldn't get out of our full-wave water bed. The second year, I worked nights and the one or two nights I was home, I ended up sleeping mostly in the La-Z-boy recliner. The third year was the year he decided to leave us. But he came back and here we are). With him in the bed, well, he's a bed hog. And a blanket fiend. He also pushes me in his sleep and snores- no joke- as loud as a lawnmower. His snoring has damaged my hearing (not hyperbole, but actual fact).

The second reason is all my fault. I haven't had the energy to put on shoes for two days in a row. I'm just bloody tired. I'm worn out and I have to keep doing stuff and mustering the energy to put on my shoes isn't a priority. Of course, every time I stand up, it just about kills me. My own damn fault.

Today, my body feels like its been pressed through one of those old-fashioned clothes-wringer thingies you see in movies. I feel like every muscle has been pulled tight, rolled flat, then left to slide back into place under its own tension. Except for the fact it hasn't slid back yet and still feels like its pulled tight. And I slept wrong on my right arm and you tack on that "I slept on it wrong" pain, then you have my day.

While the Disabled Guy was gone (for five long weeks), he texted me almost constantly. He said he'd try to be more caring or more attentive. I mean, after all, I have a real disease, diagnosed by a real doctor. I take medicine for it. Its kind of hard to deny that it exists, right? Well, for you maybe. For me, definitely. For him? Not so much.

It took him all of... well, less than a day to go back to his usual responses. Which are either: Ignore her while she speaks and maybe she'll shut up; or pretend to listen and then say in monotone, "Yeah" or "you'll be okay."

On a lighter note, today is Halloween. Blessed Samhain to you who know what that is.

Because of a book called Drop Dead Gorgeous by Wayne Simmons (set for re-release in early 2011, get a copy!), I decided to "zombie it up" for this year's Halloween. Then I ran the photos through my Photoshop lomography technique. And then I added a layer of red to the eyes and I came up with this:



That's all done with eyeshadow and store-bought fake blood. I used green and blue eyeshadow on my face, black around my eyes, and "black cherry" lipstick. All of my Halloween-themed photos can be seen here on my Flickr.

Thanks for reading.

I survived a week without Vicodin

Not by choice, mind you, not by choice. Each month, when I get to about two weeks left of pills, I call the automated number and request a refill. Usually the automated voice tells me to "allow ten to fourteen days for delivery"... and once in a while, it will say: "This prescription has expired, press one now to request a renewal" so I press one. About two years ago, there was a fiasco with the automated thing and I didn't get a refill of my Hydrochlorothiazadide. That's a water pill for my edema. When I finally got in to see a doctor- who was not my regular doctor- I got a thirty day supply (I usually get a ninety day supply) and when I got home, the regular refill was there.

Well, my Vicodin ran out. A week ago Wednesday, I asked- because I was there and the computer said it was "processing". That's good... because that means I should get it soon. Well, it turns out that I was lower on my supply than I thought and I took my very last Vicodin pill (which is one-third of what I usually take at night) last Thursday night. But, I'd been lowering my dose over the course of two weeks- just in case something like this happened.

And I've been doing okay. The Cyclobenzaprine has been helping me sleep- so that's good. I've been surviving during the day, too. I even did a day and a half at the Stronghold Olde English Faire (pics below). The whole "daytime without Vicodin" has been okay, till the last couple of days. But the nights first- er, more like the mornings. The roughest part of the day is when I wake up. Every muscle in my body feels as if it has tightened like a body-builder lifting dead weight. It takes me a good three minutes to actually get moving. I flex and relax my muscles as much as I can before I try to sit up. When I take Vicodin at night, it makes the mornings just ever-so-slightly easier.

Then, there's the last couple of days. The itchy skin came back. Well, it never really went anywhere, its always here, otherwise I'd look pretty freaky out at the Wal-Mart without my skin. The last two days or so, I've been itchy and unable to do anything. Even the Australian Panadol- which works so well on headaches and sprains- didn't do anything for my itching. On top of the itching, I also have the fatigue. Tired. So very tired. Every single day since a week ago Wednesday, I've had to go somewhere and do something. Granted, the two days at faire were of my own choice, but still. Even today- the day I thought I could just lie around and be a blob- I have an orchestra meeting. Plus I finally had to do the laundry- the ren faire laundry. No! I didn't take my clothes out and beat them on a rock and I didn't have Timothy Olyphant's abs around to use... but that's probably an overshare into the dark places of my psyche. What? You don't think Timothy Olyphant is hot? Well, you're probably a straight guy then. Not that there's anything wrong with being a straight male!

Wait, what was I talking about? I got distracted by Mr. Olyphant's abdominals. Oh, ren faire garb laundry. Its heavy and I have to hang it out to dry. Not because its so delicate or anything, but because its not cheap and I don't want to ruin it in my clothes dryer. Now its done and ready to go back into its Rubbermaid container till next May.

So, now I know I can live without Vicodin, but I also know that its a necessary evil in my life. I hope it gets here soon, because this hurting all the time is starting to get on my nerves. And the whole itchy skin thing, that's already on my nerves.

I promised you some ren faire photos- here they are. Stronghold Olde English Faire, in Oregon, IL.

I've been told I have a "good eye" when it comes to taking photos. I specialize (if you can call it that) in macro (close-up) and nature photography. So, while at faire, I got really close to things. And the living things I took macro shots of- don't worry, I asked for permission first. I've also discovered that my style of photography isn't for everyone. Not everyone gets the point of the macro and the abstract. But that's okay. It doesn't bother me. Enjoy the photos.

This won't seem like good news, but it is! Trust me!

Let me start off by saying, again, that there is good news. You'll just have to weed your way through the whinging to find it.

The last three days have been an ever-increasing torture. So much hurts. I wake up and I'm achy. I sit down and I'm achy. I get up from my seat and I'm achy. Each day has gotten a little worse. The second day, I had to drive to Madison for a follow-up with my fibro doctor (she's a rheumatologist). But my appointment was in the afternoon. And this past week and a half, I've been doing the housework by myself, taking care of the dogs by myself, and doing all the running around by myself. The spouse and the son took off to North Carolina where the in-laws are and with Ceej going to school and working, I'm pretty much left with it all. She also has a ton of homework to do, what with two advanced placement classes on her schedule. So the last thing I'm going to ask her to do is the dishes.

But I digress...

Just when I think I have this fibromyalgia thing worked out- what triggers it, how to feel better, what to do to stave off the pain... something changes and then this fibromyalgia beast wrestles me to the ground and kicks me with soft, clown-like shoes. I say that because I've actually been kicked by someone wearing sneakers and that bloody well hurts. This is more like being beaten with firm pillows to the point where you want to stab the person holding the pillow. Its more of a dragging-down-squishing-to-the-floor-can't-get-up-gravity-hurts kind of thing than it is a "beating".

A lot of fibro sufferers will refer to their pain as "being hit by a Mack truck" or "run over" and such. That's a pretty good analogy. But, here's one that's from real life. I mean, because being hit by a Mack truck has a pretty low survival rate, doesn't it? And I thought of this while I was watching a video of the final joust at the Bristol Ren Faire. That all-over body pain... that "widespread pain in the muscles" that is so frequently explained in those drug ads- to me, it feels like being thrown from a horse. I've been thrown from a horse once in my life. I've also been kicked by a horse once in my life. Stepped on too many times to count (hmm, now that makes me wonder if my right foot is worse than my left foot for that very reason). But when I was thrown from that horse, it hurt my hip and my elbow, because that's how I landed. It also hurt my pride damn near instantaneously, but that's another story. I got up, dusted myself off and picked the leaves and grass out of my hair. And I got back on the horse (because you have to!). The next day, I awoke to every muscle in my body aching. My hip and my elbow were bruised and that all-over pain seemed to radiate from those two places. We were out camping and I couldn't take a hot shower to loosen my muscles. I had to basically go through my day with that pain. The next day, it was worse. It wasn't till about three days later that it started to get better. But that's what fibro feels like. It feels like being thrown from a horse and hitting the ground. Gravity is a harsh mistress (so sayeth Patrick Warburton as "The Tick").

Today, I went to lunch with my parents and got to see my photograph hanging inside Denny's (for the second time, I saw it last week for the first time). After lunch, Ceej and I went to the grocery store. Then to conferences (where I had to walk half the length of the school twice and do a lot of standing). And now, I have that all-over-horse-thrown feeling. I ache so badly that when I try to get out of my chair, I have to fight back tears. It truly hurts that much.

BUT!


There is good news! 


At my fibromyalgia follow-up, my doctor was quite pleased! I've lost five or six pounds since my last visit (three months ago). I'm also sleeping in longer blocks (I went from 90 minutes/two hours to sleeping four and five hours at a stretch). And from that, I've been having more good days than bad days (well, for the most part. This week was pretty rough, but till now, its been pretty good). She was pleased with my progress and we're going to keep this course for another three months (Unless I feel like its getting worse or not helping anymore, then I can call them and we'll try a different drug). Right now, I take 10 milligrams of Cyclobenzaprine. And now I can take a pill and a half on those rough days (guess what I took today). The doctor was very pleased to hear I went to faire three times this summer (after I explained to her what it was all about and how much walking I did- she was impressed that I lasted about six hours, even in the heat). She did tell me to avoid the heat, but I can't make Bristol change their schedule just for me. I also told her of my plan to get season tickets for next year, so I can go every weekend. I even showed her some of my ren faire photos on my phone (I can get on the Internet on my mobile phone and all those Bristol photos are also on my Facebook). She was quite impressed with what she could see in that 2x2.5 inch Motorola screen. The knights impressed her most (and she said that Maximilian was quite the handsome guy- from seeing this photo of him). I also told her that the girls and I are going to another faire this weekend (Stronghold Olde English Faire). She thinks getting out and going to the faire is a good thing for me.

So there you have it- doctor approved: Renaissance Faires! Huzzah!

She also gave me two book titles I should have a gander at- which I will do as soon as I finish my "Abraham Lincoln; Vampire Hunter" book.

Oh, I almost forgot. Since the disabled guy left and won't be back for my birthday, he told me I could get a new pair of boots for my birthday. That doesn't sound like much, but I wear Dr Martens boots. (or "Docs" as they are lovingly called). The funny thing is- I just got a brand new pair of Docs. Shiny red ones. I love 'em. (pictured below). But, while I was searching the Doc Martens website for shiny red boots, I found some that will be perfect for faire. They're not exactly "ren faire" shoes, but under a long dress, they'll look just fine. Heck, my last pair of "ren shoes" were Earth Shoes from Wal-Mart (they were actually ankle boots). Click this link to see the new boots.   But, being as good news as that is, today I got a birthday card from him (and one from Jase). He sent me a check for $50, on top of the boots. So now I have extra spending money for the faire this weekend. And that rocks.

See... I told you there was good news!

Here's my shiny new boots-

It is all my own fault, but it was worth it!

Sunday, I went to the Bristol Renaissance Faire with my daughters. In case I haven't mentioned it before, they are seventeen and twenty-one. I knew what I was in for because I'd been to faire two other times this summer. Both days were blistering hot with crazy-high humidity and no wind! I, quite literally, started sweating when I climbed out of my truck and didn't stop till I got back in and had the AC on, six hours later.

Sunday wasn't quite as hot, though. I was still sweaty, but not nearly as disgustingly as I was those first two times. We saw the joust, the acrobatic group Barely Balanced, had lunch (spinach calzones- which were fantastic!), I took loads of photos- not an exaggeration. I had over 180 photos to go through! And we got to see Maxx and Mauldron's A Knight at the Opera (comedy, singing, dancing- done by two men who also do the joust). I did feel better Sunday than I did on those other two days and it looked like we might stay later than those previous days. Not so much though. The first day, July 10th (opening day), it was around 130 or 2 PM when it finally got so bad I couldn't take it anymore. The second day, August 1st, it was around the same time, but also, my feet were in agony. I'm pretty sure my "ren shoes" have had it. This time, I didn't even start to feel tired till around 2 PM. The girls went back toward the entrance to see the Mud Show and I stayed closer to the jousting ring. We were going to take in the 3 PM jousting tournament. Around 230, I made my way down the hill and it was quite literally, standing room only. I saw "Maxx" and stood next to him to watch the Andalusian horse show (I can't remember the real name of that show). Full disclosure- I know "Maxx" (not his real name) and we stayed around after the first joust to take photos with him. In fact, he and Mauldron involved me in the show, even called me "Lady Smelly"- the whole bit was far too hilarious to explain.

When the dancing horse was through, almost no one got up from their seats. I walked around to the side where Maxx's fans are seated (you cheer for the knight for where you're seated) but there wasn't even one seat available. People were sitting in the grass and standing, but there was no way I could stand for that long. I can't get down on the ground either. Partly because of my knees and partly because even if I got down there, in the tightly-laced-up garb, I wouldn't have been able to get up.

I sat down a lot between 2 PM and the time we left. Four people thought I worked there this time. When I was there with Christine on August 1st, two people thought I was a performer. I didn't think my garb looked all that great- not by comparison to anyone else's! But it was nice and I did know enough about the faire to be able to answer their questions. One would think that the digital camera I had in plain view would have been the big tip-off that I wasn't a worker.

My feet were the big problem on Sunday. I wore my non-ren-faire Doc Martens boots for that reason, but by the end of our time, I could barely walk. Kat, the oldest, suggested next time we don't come AT opening, that way we could stay later. The problem there is that if we don't come as early as possible, we end up parking too far away and that works against me.

Monday, I woke up with every muscle in my body protesting every movement I made. I shuffled from my room to the bathroom and then down the stairs. I was utterly exhausted and everything screamed in agony. My skin didn't itch, but I think it was because the pain overwhelmed the itching. All day long, every time I sat down for longer than a few minutes (which I tried to do often!), getting up was an experiment in pain. Today, I woke up the same- in pain. But, today, my skin is itchy too. Oh, and my feet- yesterday was worse, but anytime I move my feet, whether I'm standing or not, I get a shooting muscle spasm in my arches. I'm pretty sure the foot thing isn't fibromyalgia, but it isn't helping! I'm also slightly swollen today. I can feel it in my hands and I can see it in my feet.

Its my own fault, but it was definitely worth it. And I'll show you why- Photos!

The first photo of the day-

Left to right- Me, Kat, Christine (aka- Ceej).



My daughters- Kathrine (21) and Christine (17)



Barely Balanced is an acrobatic/comedy trio who are just hilarious. They walk around on stilts between shows and delight us all.

They're Casey, Cameron and Jimmy- but if you have trouble remembering names, they're also: "Small! Medium! And LARGE!" (respectively).

This is Cameron. We saw him almost as soon as we'd arrived. I called to him- the girls went to Bristol without me two weeks ago and I mentioned on Facebook how they were there with half my gear (belt, pouches, hair doo-dads). I said that they damn well better get a photo of themselves with someone like Barely Balanced or Jane the Phoole. Cameron said he'd be glad to pose for a photo with them, so I texted them that very statement. But they didn't do it! When we saw Cameron, I told him who we were and he said, "Oh, are these them? Why didn't you stop last time!?"

Then he used them as furniture.


Jimmy- who is actually friends with one of Kat's best friends. He knew her in college. He even talked to Kat about waiting to go to college instead of going right out of high school (which is what she did- she just started going to college last week).



And with the lovely Casey. She's not only amazing in the acrobat group, she does stand-up. And she's hilarious.



If my 18 year old son had been with us, this photo would have been perfect because Casey could have done something to him, like hung onto him like Cameron is to Kat or even had him pick her up. But he thinks we're nerds and won't go with us.



This is Jane the Phoole. I've met her several times at the small Janesville Faire. She's also hilarious and she's part of the cast at Bristol. Its an honor knowing her and here she explained to the girls how to be famous (by looking into that small hole and saying: "Monkeys!")



Sir Maximilian and his loyal steed- Kilvarough.



He's a bit more awesome than the Old Spice guy, because not only is he on a horse, he has sword.



A knight and ladies-



Me and Maximilian. He's sweaty because he just completed a joust. I'm sweaty because I'm conscious and upright. I do a 365days self-portrait project on Flickr. And he agreed to be in my photo of the day (Day 204).



And, the girls again... Christine and Kathrine



If you want to see ALL the photos, here is the link- "Bristol Renaissance Faire"

Alas, it was too good to last...

Monday morning brought the usual wake up, lay still for a moment, flex various muscles to see how much they hurt before attempting to rise from the coffin- I mean, bed. And of course, the muscle pain is always there first thing in the morning. One would think that resting all night would bring some relief, but all it does is increase the ache. I manage to make it downstairs, despite the muscle pain, which didn't go away after a few minutes of moving around and the foot pain, which I can only blame myself for- I didn't wear shoes two days in a row. What could I do? It was in the 90s for heat (30s for you Celsius followers) and pulling on a pair of leather Doc Martens is not on the top of my heat index coping techniques.

As I sit here typing at nearly 530 AM, my skin is itchy as hell. My muscles feel like they're being compressed and are trying to escape through the itchy skin.

I need to get all this out of my body before next Sunday. My 17 year old daughter and I are going to the ren faire again. I can only hope that its cooler than it was the last two times I went. I lasted till about 2 or 3 PM both times. That's a good long day, but its also a long time to sweat non-stop (I'm not exaggerating, I literally started sweating the moment I got out of my air-conditioned truck till I got back into the air-conditioned truck.

Hopefully by Sunday, I'll have a stretch of good days to build up my spoons.

What the hell am I talking about?

Only this- "The Spoon Theory" by Christine Miserandino 

If you touch my spoons, I'll break your fingers! Which is a lie, because if I broke your fingers, it'd cost me a spoon and I need all my spoons.

What's this? A whole week of feeling good?

I really don't want to get excited about this. But I've gone since the last blog post (a week ago) without taking daytime pain meds. And I've done a lot in my days. Since last week, the Disabled Guy etsy shop sold two birdhouses and two of my photographs. (in case you don't follow my every move, we're selling stuff to try and raise money to send our daughter to New York City with the high school orchestra). So I've been to the post office five times in the last week (five because I had to go once to get boxes for the birdhouses). I've been to the store- grocery, Wal-Mart and to Fashion Bug to buy jeans with the 17 year old (school starts on Wednesday). All without having to take pain meds in the daytime.

So, I'm pretty sure the Cyclobenzaprine is doing something good for me. It is helping with the sleep issue. The longer blocks of sleep are a good thing.

I have had a few days where I was achy in the daytime, itchy too. Like right now, my wrists ache and my skin is slightly itchy. My muscles are a bit sore, but compared to how I felt just a month ago, this is a huge improvement. I'll take "slightly achy" over "agonizing pain" any day. Of course, my deepest, not-so-darkest fantasy is PAIN-FREE, because I don't remember what that feels like.

Despite the good things about the Cyclobenzaprine, I still get that tired-ish hangover feeling in the mornings. Again, though, if that's one of the things I have to live with to feel human in the daytime, its not that bad of a trade-off. Oh, and the dry mouth. I already take a water pill (Hydrochlorothiazadide) for the edema I've had since late 2004 and I went through a period of time with the dry mouth from that. But now, from the muscle relaxer, I've got pretty bad cotton mouth. I can sit with a mouthful of water and it still feels dry.

I got some mouth spray called Biotene for dry mouth and its rather disgusting. Its 'gentle mint" flavored but its more like "we rubbed some Juicy Fruit on the bottom of a wet shoe and then made a spray out of it". Not good at all. Tastes awful and doesn't do much for the dry mouth. It has been suggested more than once that I try sour candy. So I got some "Icebreakers" brand sour things. They worked okay and even though I dislike sour candies, they weren't so bad. Except they're sugar-free. They have an ingredient called "Sorbitol". I don't know how to say this delicately, so I'll just do the best I can. "Sorbitol" helps people who are having a difficult time with... umm... let's just say it helps you "go" and leave it at that. So, if I use a lot of these Icebreakers Sours, let's just say I don't get to spend that much time sitting at the computer.

So, I will find an alternative because I have stuff to do that requires me to leave the house. And the fact that I've felt damn good in the last week and I can leave the house, well, that's all the better.

A pretty good day. Then I went to bed. Then I woke up

Friday wasn't bad. Two of our puppies went home on Friday. I did a half-assed job cleaning up the living room a little for the impending strangers- then apologized and explained that my kids don't do housework because they all have jobs and I'm in pain. Sometimes, I feel like saying, "We're lucky I'm upright, wearing clothes and coherent enough to piece these words together in a sentence."

But, Friday was overall okay. I took some Vicodin about a half hour before the first couple arrived to pick up their puppy. Then there was a brief comedy of errors in the attempt to get the inside baking element out of the oven. (it died about three days ago, and we had to wait till we got paid for a puppy to buy a new one). I got the replacement element and the spouse installed it and now our 16 year old oven works again. So, I went to the store.

I zipped through the store like the Me of old. Which is strange, because the Old Me is actually the Younger Me. I liked the Younger Me. She was happy and healthy and quick. A little chirpy and if I met her on the street, I might find her annoying, but I miss her.

More times than I care to remember from yesterday, I was completely drenched in sweat. It was humid and hot (around 90 Fahrenheit) and any move I made outside caused me to sweat like a long-distance runner. At the grocery store, by the time I got into my truck, I was dripping as though I had run a marathon with a Gatorade drip in my arm. But, aside from the intense sweating (which I'm sure was a combination of my extra activity and the warm temps and high humidity).

Lately, the humidity makes me feel worse, but I attribute the daytime Vicodin to the fact that it didn't seem to bother me. I was quite pleased yesterday. Felt good. Walked good. Seemed to have energy that I hadn't had in a while. I even considered writing about it last night, but around 830 PM, I was sooo tired. So very tired. I was in bed by 930, asleep by 10.

I think I slept through the night. I don't recall waking up in the night like I used to, so that's a good thing. When my alarm went off, it felt as if I'd just fallen asleep- which could mean one of two things: I slept so good it felt as though it sped by, or- I woke up just as tired as I was when I fell asleep. It was a light combination of the two. As soon as I tried to sit up, every single muscle in my body rejected the mere thought of moving. Every muscle ached. Every tendon is tender (oh, that's an unintentional pun, I swear). My muscles feel hot. The skin on my hands feels like its burning and itching. So, a good day followed by a sore and achy morning.

Yesterday, I had a pain in my wrist. I've had this pain before. It comes and goes. As long as I don't put weight on my wrist, it doesn't really hurt, but the second I put my hand down or try to grip something, the pain shoots through. Now, its only in my wrist. It doesn't jolt down the fingers or up to my elbow. It affects my grip strength and I view it as a mere inconvenience. But it got me to thinking about how this fibromyalgia thing is testy. Pain comes and goes. So does the energy. Some days I feel like I could conquer the world. And some days, I feel like the world has kicked me in the Lady-nads and left me on the floor to let the minor planets finish me off. (I just had the thought of the planets circling my pained body, curled on the floor, while they dance around me, snapping their fingers like West Side Story... "Once you're a planet, you're a planet for life!" *snap, snap*

What do you want? Its 510 AM!

Oh, and two more puppies go home today.