Death would hurt less...

I was going to put off writing this post till I had my Flickr photos up to date with the macros I've been doing since faire season is on its month-long hiatus (Closing Day at Bristol- Labor Day Monday. Next faire- Stronghold Olde English Faire, October 4th and 5th, then A Gathering of Rogues & Ruffians on the 11th and 12th. AND THEN Teslacon on November 7th, 8th, and 9th). I did a bunch of really cool shots of raindrops on maple leaves. The underside of the leaves cause an awesome beaded water effect, so I've been going understandably nuts with the macro lens.

However, with the final weekend photos and the wedding photos, I haven't been uploading macros to Flickr on a regular basis. I just checked and I have around 80 photos from September alone to upload. And honestly, I don't have the mental enthusiasm to upload 80 photos and caption and tag each one. Not today.

Not only am I stuck without fibro treatment- beyond the Vicodin and Cyclobenzaprine I've been taking for years- I also ran out of my hydrochlorothiazide (spelled that from memory!). I was out of refills and instead of calling in the automated thing, I just waited till my doctor appointment that same week and had them renew everything that needed renewing... except that I ran out before the refill came. So not only was I swollen as a reaction to the generic Effexor, I've been having the swelling associated with not having my much-needed water pills. (they should arrive tomorrow or the next day, according to the automated checkup I did today).

I feel like I'm being smothered in pain. My clothes fit weird because I'm swollen sort of all over, but not in a proportional way. I'm cramming swollen, flipper feet into shoes because it hurts more to go without shoes (and by "shoes" I mean super-comfy hiking boots). I've been wearing my largest, softest shirts and believe it or not, I only have a few days' worth.

Death would hurt less. I'm in hell. I started crying and I couldn't figure it out, till I realized I've been randomly crying from the pain. When I sit absolutely still, I have pain, but it feels more like a dull burning feeling in my muscles. Like I've overexerted my muscles and now my body has too much lactic acid in it. And sometimes my skin itches... sometimes it aches. And if I move, that dull burning ache turns into a searing, stabbing agony. Lifting a 20 ounce bottle of water hurts. Having a four-pound Chihuahua step on my leg in an effort to get over me to the cushion on the back of the sofa is like being stabbed with a dull, hot piece of metal. And that pain lingers. All that plus my wrists alternately or simultaneously feel like I've sprained them. I can't put any weight on my hands when I get out of this chair. You know, this office chair with arms on it so I can use them to get up easier than just sliding out of the chair and crumbling into a heap on the floor.

On top of that general feeling of "Living Hell", after I've sat still for a while and go to move, I sometimes have to actually move my legs with my hands so I can get up. My burning, aching muscles tend to stiffen up while I'm sitting still. Right now, in my office chair, my legs are going to scream like a heavy metal symphony when I decide to stand up. I'm also back to waking up every hour-ish at night. So, no sleep exacerbates the pain, the pain makes it so I can't sleep, so the lack of sleep exacerbates the pain, and then I can't fall into a deep enough sleep, and I spend my days in more pain because I'm not sleeping well, and when I do go to bed, I don't get restorative sleep, so I'm in more pain during the day.

JANE!! STOP THIS CRAZY THING!!

Who the hell is Jane in this story? My doctor's name isn't Jane. (actually, her first name is Jennifer and I think she's the same age as my oldest kid).

The Disabled Guy is sick and tired (ha!) of hearing me bitch about it. I can't help it, though. I get up and somehow I'm supposed to function like a normal person. I put my clothes on and an hour later they're so uncomfortable that I have to change into my giant yoga pants... or get naked under fleece blankets. But you can't go to the store or post office wearing only two fleece blankets. And driving while on this much pain medication is probably not good either.

Now, I've had a few people ask me why I don't use compression stockings for the swelling. Because obviously, in the last nine years, I haven't tried EVERYTHING. I have doctor prescribed, fitted to my size compression stockings. And all they do is push the swelling up to above my knee and leave deep red marks on the backs of my knees. Oh, and since I had the total knee replacement five years ago, that super-tight compression stocking seam that lays across the bottom of the scar feels SO DELIGHTFUL!

Well... I took some photos. I wore my compression stockings for four hours the other day. And I took some photos... (with my phone, because I can't carry my camera and use both hands to drag myself up the stairs).

Here's my leg in one of the stockings (after about four hours). Yes, my leg is swollen above the stocking and my knee no longer has knee-like definition.

Oh, and guess what... my calf and foot still swelled up under that compression stocking. That line on my ankle is where the stocking cut into my swollen skin because I was standing/sitting with my foot at the normal angle that all humans (except ballerinas) stand.

Here's another shot- with more of my calf visible.

Nice, huh? And these were prescribed by a doctor. They measured my legs and everything.

Here's the other leg (the one that was photographed still in the stocking). Oh, and by the way, taking these stockings off was an experience in torture. As I rolled them down, it felt like I was scraping the skin off my bone with a dull Ulu knife.

One more shot... you can kinda see the line left at the top of my calf. Behind the knee, it was red and irritated.

And now you know why I don't wear skirts that show my legs. People say: "Oh, it doesn't matter! Nobody would notice!" I beg to differ, Sparky. Giant elephant legs attached to flipper feet with a huge scar down one knee... that's kind of obvious and difficult to ignore.

The first person who tells me that fibro isn't a real disease is going to get kicked in the crotch with a flipper foot. Think about it- the flipper foot is wider and bulkier than a normal foot. It will cover more ground (so to speak). Hippos are the deadliest animal... imagine a hippo with the ability to kill on land. Yeah... I might take a while to catch up to you, but I'm stubborn and you'll get tired.

I'm going to end this with the song that I've had stuck in my head all day.

Pahz Whines About Her Fibro

Well, that IS what this blog is for, isn't it? The name of this blog shouldn't be "Pahz Lives with Fibro", it should be: "Pahz Whines about Fibro and doesn't help anyone with any REAL information because she's not a medical professional and is definitely not a source of info on this issue" but that was too long for me to Photoshop into a banner image. (I really need to redo my banner, I've gotten so much better at Photoshop since I made that thing).

But here we are, going on 1 AM on Tuesday morning. (as opposed to "1 AM on Tuesday afternoon"). I went to bed a little after 10 PM. I had a decent enough day. Halfway through the day, it started snowing and of course, I went outside and took macro photos of snowflakes. I stood out there, hunched over the gas grill we never use, holding my camera up with my hands in my super-cozy fingerless gloves. I wasn't outside for very long, but the snow was the heavy, wet kind and after only a few minutes, my fingers were so cold and stiff I could barely move them. And they had reached that point of cold where touching my skin hurt, so I figured it was time to go inside. (I later found out that our high was 16° Fahrenheit, which would account for how I got so cold, so quickly). I spent the rest of the afternoon and evening trying not to get up and move around. After being seated for several minutes, any moving resulted in sharp pain in all my muscles.

When I went to bed, I said to the Disabled Guy (who doesn't give a damn about it) that: "At least today's weather explains why I haven't slept good for two nights" and he muttered an "uh-huh" as I walked up the stairs. I got settled into bed, my super-soft fleece blankets all situated and I was getting that all-over warm cozy feeling when things took an ugly turn. As my body settled into the bed, gravity increased its harsh grip and felt like it was trying to pull me through the bed to the floor. Every time I tried to relax my muscles (I start at my feet and work my way up- its a sleep inducing exercise I learned when I worked nights), they'd tense up harsher than they had been before I tried to relax. I changed my position, which caused me a grimace-and-whine-inducing bout of pain.

I ended up fairly comfortable on my back, propped up slightly by my pillows and with my arms at my sides. Every single joint in my body throbbed in agony with every heartbeat. My hands and arms felt swollen (they aren't visibly swollen though). My skin was starting to do that burning thing it does in a flareup (at least there was no itching!). My muscles felt like they were being pulled out of my body. My larger muscles, like the thigh muscles and the shoulder/upper-back muscles felt like they were being scraped off my skin with a flat, dull, burning blade.

After almost two hours, I got out of bed. And that brings us to now- closer to 1 AM than when I started this blog post and two more 5/325 Hydrocodone tablets (approximately seven hours after my normal nightly dose). My hands still feel swollen and stiff and my joints are still aching. But the burning pain is starting to subside. This strawberry Jolly Rancher hard candy tastes terrible. The music I'm listening to is awesome (MKIII by Steam Powered Giraffe) and I'm feeling kind of hungry. But I don't have anything in the house that I can eat without having to 1- get up to go get and 2- cook it.

And, I'm not the least bit tired. But at least I'm wearing this awesome hat, which is the one I'm wearing in my profile photo here. That's right, I wear my awesome accessories when I feel terrible because I like them and I will do every little thing I can do to make me feel better.

Now that I've passed the 1 AM mark because I was getting the links to the various things I linked to up there, the Hydrocodone has helped a little. This raspberry Jolly Rancher isn't much better than the strawberry one. The music is still awesome and so is my hat. (also- I just realized that my hands and fingers feel this way because of the Reynaud's that was triggered by the bitter cold Monday afternoon while taking photos).

I also remembered there's some frozen pizza in the kitchen. That's pretty much the least amount of work for something edible. Throw it into the oven and then sit down for 20 minutes.

Now if I could get to sleep, all of Tuesday's problems would be better.

And because I mentioned them, here are a few of the photos I took- snowflake macros. If you'd like to see more (or see these larger), just click a photo, it'll take you to my Flickr.









For size reference on how tiny the snowflakes were and look, my fur-trimmed fingerless gloves from The Sheepskin Shop at the Bristol Renaissance Faire. I had to switch to auto-focus to get this shot and the lens chose to focus on the fur trim on the gloves instead of my fingers.

I never know how to answer this question...

"How are you?"

You would think that would be easy to answer. But, I have to go through a quick list in my head before I bark out my reply.

Does this person know me?

Does this person know me well enough to know I have fibro?

Does this person even  care that I have fibro?

If this person knows I have fibro, are they asking me how I am politely or are they concerned about my fibro?

The other day, I had to go with the Disabled Guy to Home Depot because he was picking out paint. I didn't want to go, but I also didn't want seventeen phone calls in a row of him asking me various paint colors that all had ridiculous names and didn't look anything like their names would indicate. And we were a few miles from home when I realized I didn't take any Vicodin before we left the house.

Does he care? Not really. (he doesn't even ask me how I'm doing or feeling).

So, let's talk about my pain...

I am in pain every single day. Every day. No matter what. And I would rank that everyday pain at around a three or a four. I can tolerate it. I don't always need to take something in the daytime (other than my one single muscle relaxer in the morning- which is prescribed for me in that dose- one 10mg tablet in the AM, two 10mg tablets at night).

Now, this isn't going to be as easy as "the pain is [this number] on the pain scale" because even a good day can turn bad even if my pain levels don't increase. I might swell up. My skin might start to itch. I might have a hot-spot flareup. The fatigue might set in and drag me to the floor.

When I refer to "having a flareup", I actually mean that my pain is so bad that I must take something in the daytime. Pain. Extreme pain. Pain so bad that air brushing by my skin hurts. If something touches me, it sends electrical jolts of pain in a shock wave from the part of my body that got touched.

When I refer to "my skin itching", I actually mean that I feel like my tendons and muscles are trying to escape through my pores. The itching is under the skin, as if my muscles are on fire under the surface. Scratching doesn't help- it actually hurts. Sometimes rubbing the skin with the flat of my hand helps, but who can do that ALL OVER THEIR BODY? Not me.

Some days, the only solution is nudity and two fleece blankets. I'm not telling you anything you haven't read before. But I just wanted to discuss my pain... Mostly because I've had more flareups this year than I have since they started treating me for fibro.

I suppose the good news is, that despite having pain issues at the faire, I haven't had a meltdown like I did last year.  We've got two weekends left in this season. It has gone by way too fast again. Except for Fridays, which crawl by at a snail's pace.

But, to answer the question: "How are you?"... well, that depends on a few things. But let me tell you this- no matter what I answer (which is almost always: "Fine"), I am in pain. I am in enough pain that normal people would cringe. I am always in pain. Always. If I'm standing up, sitting down, or if you somehow end up in my bedroom and I'm in bed under two fleece blankets and my clothes are not on my body... I am in pain.

Despite that pain, I still take awesome photos. Because I can. Because that's what I do. Because I love to take photos. And I love my subjects (people and animals)... Because when I take photos, I feel like I'm contributing to something. Because when I take photos, I can forget how much my body hurts for those few minutes. But mostly, I just love doing it.

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

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

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

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

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

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

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

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

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

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




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



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

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



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

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

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

Sparkles and glitter! Rainbows and sunshine! Kitties and fluffy bunnies!

There, now that the title has lured you into a false sense of glittery excitement, welcome to another whiny-ass blog from me!

I try to stay positive. I try to stay upbeat. I usually use humor to defuse tense situations or to deal with pain or stress. Because if I don't, I'll end up as an angry, depressed puddle of goo that nobody wants to be around. And if nobody wants to be around me, how will I have anyone to talk to? I'm like a shark- it needs to swim so it can breathe. I need to communicate with people so I can live!

In reality, sharks don't need to swim to live... but I still need people!

And look at that, I've gone off on a slight tangent and went off topic. Sort of.

Okay, here's the dealio. That's right, I said "dealio", dealio with it. The deal....io is that I have gone through another flareup related to the weather. I've been keeping an eye on the Weather Channel's website for barometric pressure changes and predictions of rain and/or temp changes.

Sidenote- I always equated watching the Weather Channel with being an old person. We joked with my parents that the first sign of aging was multiple bird feeders in the yard and Weather-Channel-watching. But it doesn't count in my case because I'm not watching the Weather Channel... I'm checking the website so I'm still cool and hip and with-it.

The kids still say that, right? "Cool"? "Hip"? "With-it"? Good, because I'd hate to be seen as some crazy old lady with too many pets and a tendency toward hoarding.

So when this flareup hit, I knew why. It doesn't change the sheer suckitude of this flareup- or "flaredown" as I once called it in a post. But it was nice to know why instead of sitting in a slumped blob in my chair and whining about the whole thing.

And this is typical- I'm in pain. I'm in more pain when I move than when I stay still. My left hip is in screaming agony and as long as I stay still, it doesn't do much more than mildly ache. Taking a deep breath in has started to ache, but not in that "Holy shit, I have bronchitis" way, more like in that "Ow, my muscles ache, why did I lift that Volvo off that baby yesterday? It wasn't even my baby. What the hell was a baby doing under a Volvo anyway?" way.

On top of the usual "widespread pain" (bloody hell, I hate those TV ads), I've got my itchy skin. That deliciously irritating itchy skin. The thousands of hairy-legged spiders all trying to burrow out of my skin through my pores. This whole "widespread pain" mixed with the itchy skin also creates that burning effect. I feel like my skin is on fire. And, to top off the fluffy frosting of fiery pain, my muscles are so sore that it feels like they're trying to escape through my skin. Actually, its more like my bones are trying to escape. Its hard to describe- I feel twitchy from it. I simultaneously feel sore and achy, like my muscles are trying to curl up into a ball and it feels like my muscles are being stretched to the point of tearing, where that "bones trying to escape" feeling comes from.

Last week, I was having a conversation with one of my faire family about various things and of course, the whiny-ass topic of my flareup came up. His reply was so nonchalant and normal... he simply said: "Pressure's changing..." and went right back into what we were originally talking about. Like this stupid disease was all normal and no big deal. I didn't ask him for help or advice or anything, he just said it so casually. Why can't every person in my life do that? Turns out the Disabled Guy thinks I'm exaggerating again. I don't know how to explain the varying degrees of pain and my varying degrees of tolerance for it. (please, don't bother suggesting things. He had a stroke almost 18 years ago, he doesn't retain information or express emotions the way normal people do). But I liked how that happened. My friend doesn't doubt my pain levels or how I deal with my pain. He just acknowledged it and moved on. It was refreshing.

I'm stuck with this stupid disease for the rest of my life. It won't kill me, but it makes me miserable and sometimes, its hard to stay positive. I ended up back in bed today, laying naked under those fleece blankets and I had a few instances where tears broke through. It would be nice to get a little sympathy from the people who live in this house. A sincere "I'm sorry you're hurting" now and then. I'm not asking for much, am I? What I usually get- if I get anything at all- is a terse: "What do you want me to do about it?"  I don't expect anyone to do anything about it. Just don't treat me like I'm making it up. That's not so much, is it?

Now, to end on a high note- because I like to end with something good.

I got myself an early birthday present. The surprising thing isn't what I got, but the fact that it took a mere three days to get to me after I ordered it. I got myself a "Courtier's corset" from Damsel in this Dress. (it isn't really a "courtier's corset" in as such they wouldn't wear one like that). I love it and it looks great. I can't wait to wear it to the ren faire. (which is in about three weeks from the time I'm typing this). And since you asked (what? You didn't think I could hear you?), here's a photo of me wearing my new corset.

What fresh hell IS this- Oh yeah, its fibro...

I got used to having those really good days. I'd forgotten how good I could feel and shame on me to forget that this disease is a fickle little bitch. I'd like to use another word, but I'm not British and the British use it so much better than I do. I know, I know- a few days ago (a week? I don't even know) I did a post complaining about how fickle this disease is, but I started to feel better and then I forgot again.

We all know a few of the triggers- stress, lack of sleep, physical exertion. I don't think I've been stressed and I know I haven't been physically exerting myself. I also know the weather has been changing like a PMSing fifteen year old (oh, don't get offended. You know damn well a fifteen year old with PMS is a fucking terror). I haven't slept well for a day or so because the dogs kept waking me up. They don't like it when I make duct-tape-muzzles. (OH PLEASE! You know that was a joke too. I'd never duct tape my dogs. That's what zip-ties are for. THAT'S ANOTHER JOKE, I'M ALL-CAPS-ING SO YOU KNOW I'M SERIOUS!).

Lack of sleep has given me the all-over pain. I feel like I've been thrown from my imaginary horse. I'm going to name my imaginary horse... Ol' Number Four. I drew a comic strip in the seventh grade with a talking horse named Ol' Number Four. He was a smart ass and wouldn't stay in his own little panel square. He was also a blue Appaloosa. And by "blue", I mean, actually blue, not the horse-color blue. I used a blue colored pencil. I also drew him in the style of my five year old self. Back then, my horses looked like long-necked dogs in need of orthodontia. 

I've gotten off track, but Ol' Number Four was a racehorse and even though he never stayed in his own panel squares, he won a few races. His jockey's name was Mark Book. Yeah, I was eleven when I started the seventh grade, what do you want? Shakespeare?

Back to the fibrofuckingmyalgia (the actual name for this disease). My all-over aching was killing me yesterday. And I've got this pain in my right thigh muscle that feels like Ol' Number Four kicked me after he threw me off his back. Ungrateful blue spotted horse. And then we have the weather changing. The weather flared up my arthritis- my right hand was in a painful claw, with the hot, sand-grinding pain radiating from my knuckles down my fingers and down to my wrist. Nothing would make that go away.

With that change in weather, we got humidity. And that triggered those thousands of microscopic spiders with the unshaven legs. For those who are just tuning in, I get this under-the-skin itching that feels like thousands of tiny spiders with hairy legs trying to crawl their way out through my pores. And because its under the skin, scratching doesn't help. In fact, it usually hurts because when my skin itches that way, I'm usually also sore and scratching at my skin just makes the muscles ache more.

Two things are happening this week... no wait, there are maybe four things happening. They're not stressful, so just back that truck up- "Oh, Patty, you just said you weren't under stress, but you've got stuff happening..."  Slap that one in reverse.

This weekend, I have the last ren faire of our season. Its a small, two-day faire in Illinois. Ceej is coming home from college to go with me. Monday is my birthday- 42, thank you very much. I'm the answer to life, the universe and everything (NERD!). And on Tuesday, my dear friend, Shawn, will be arriving from Australia. AND the next day, we're going to where Ceej and Kat live to see them, because they live in the same town and go to different colleges. I don't even know how much this will affect me. Effect me? Whichever. But I know that while Shawn is here, he'll want to go to Milwaukee because they have rockin' awesome museums there. Last time he was here (a year and a half ago), I was still four months away from my proper fibro diagnosis and this blog was about my knee scar, Fronkensteen.

I'm pretty sure I'm done bitching for now. My right hand is screaming a symphony and is surprisingly in key with the itching in my arms and legs (its localized there). But, I'm going to leave you with this...

There's a website called Fiverr where people will do a service or give you something or whatever for five bucks. Over on Regretsy-dot-com, a guy named Sam Cornwell was discovered on Fiverr. This was where I first found him: "My Fascination with Fiverr Continues"... it continues, because previously, April discovered Dancing Dror. We broke him. Not on purpose, but with all his orders, he injured himself somehow.

But, it was after I saw this post on Regretsy, that I decided to order myself a Sam Cornwell video for my birthday. I ordered the five-dollar version, which is a handheld camera and not quite so polished-looking. But, what I got instead was fucking art. (I did give him a "tip" for the extra work he did- which you should do even if you get the five-dollar version). I gave him our names (me and the Disabled Guy), told him of my nerd behavior, the disabled guy's NASCAR obsession and that this was for my birthday. The core topic I wanted him to address was the Disabled Guy's insistence that photography is not art. Guess what? Sam Cornwell is a photographer.

Language is not safe for work. But enjoy.

No News is Good News? Not always...

I always figured that if I didn't post for several days in a row, it was because I felt great or that I was so busy that I couldn't be bothered by the pain. Not so much. I've been meaning to come in and post a bit, tell everyone how this day feels or that day. But each time I tried to start, I'd either get distracted into another task or I simply didn't care. I just couldn't muster the energy to type it all up and bitch about it.

Well, I'm here now to tell you that Springtime and Humidity have teamed up to create a tag-team of hell. The ever-changing weather of the Spring isn't bad enough, we had mid-80s one day only to drop to the mid-40s the next. We had a heat index one day and a wind chill the next. And the next goddamn person who says: "If'n you hate the weather in [state name], just wait five minutes! HAR HAR HAR HAR!!" is going to get roundhouse kicked in the back of the face. By me. By me, standing on a chair. By me, standing on a chair, holding onto the wall for support. By me, standing on a chair, holding onto the wall for support, and two hours after I've taken my pain meds. THEN you'll be in trouble. Whoo-boy.

So yeah, we've got the ever-changing weather patterns. Rain, sun, hot, cold... the barometric pressure is up, then down, rising, then falling. And let's barf up some humidity on top of it. Any level of humidity- I can feel it. Why am I talking in reverse? I don't know. I blame the weather though. Or... maybe Yoda had fibromyalgia and that's just how it makes us talk. Who the hell knows? I mean, fibro is different for everyone, yet same enough to have a list of common symptoms.

Yeah, here's your common symptom: PAIN.

Two weeks from today is the Janesville Renaissance Faire. I was hoping to have had a significant weight loss before then. To feel better before then. Granted, I do feel better than I did last year, but only marginally and only on good days. I wanted to be able to run and play with the rest of the kids. You see, I dress up and walk the walk. I have trouble talking the talk, but I still have fun. Don't judge me, you've not seen the boobshelf in a lace-up bodice.

With all this weather fluctuation, I'm worried that I won't feel good enough to enjoy Bristol Renaissance Faire. And I desperately want to. I want to walk the walk and talk the talk and entertain myself and other people and have fun and spread joy and watch the joust (ooh, baby, the joust) and see the acrobats and STAY ALL DAY so I can see every show and... what's that? I sound like I'm whining? Well, dammit, I AM! This goddamn disease has taken enough from me. It is part of the reason I have a cyborg knee. This disease took too many years from me. For three years, I didn't even go to Bristol because I knew I wouldn't last. It was too hot, or too humid or too... whatever. And I went ONE time in 2009. In 2010, I went three... four? And it was fantastic. And I want to make the whole summer fantastic.

The disabled guy has his NASCAR. That's at least two days a week (more if he watches the practices and qualifying). Haven't I suffered enough NASCAR exposure to earn this? Two days a week with like-minded people who all appreciate each other's laced-up boobshelves and uh... other parts?

You're thinking to yourself right now: "Damn straight! You have earned that right! And, I didn't know NASCAR exposure was a disease!"

Well, it is. And it hurts slightly less than fibromyalgia.

Slightly.

**No offense to any NASCAR fans out there. I'm not a NASCAR-ist. I'm married to one of you!