Wednesday, December 28, 2011

I have some sad news to report..

For those of you who aren't on my Facebook, my mother passed away on Christmas night.

She was an adult-onset diabetic. And she was a good one. Followed orders, changed her diet, was careful about everything. In 2009, when I had my knee replaced, she lost a couple of toes. I spent two weeks at their house after my surgery where both of us were whacked on the Oxycontin family of narcotics. She seemed to improve, then her foot started going bad again. They decided to put some stents in her leg. I missed the second day of a ren faire for that surgery because they did it on a Sunday because they didn't want to wait any longer. When she went under for that surgery, she was certain she was going to wake up without her leg. When she was back in her room after recovery, she came to, asked the nurse to move the blanket. She looked at her missing-toed foot and said, "Good. I can sleep now."

Since 2009, she was in and out of the hospital far more times than I can remember. When they were both officially retired (2003), my parents started traveling around the country in their RV for months at a time. They cut their 2010 RV trip short in March and that's when they took half of her foot. That's also when they decided to announce she was starting renal failure. Of course, I and every one of my kids would have donated a kidney if we could have- but Mom's blood type is a negative and we're all positive (I have my dad's blood type, obviously).

In August this year, my dad sold their giant RV. He said that maybe they'd get a smaller RV and still go around locally like they used to when they both worked, but he also knew that wouldn't happen. In fact, Summer of 2011 marked the 41st year they spent going camping. We started in the summer when I was just a baby- in a tent! They worked their way up from a tent to a pop-up camper, to larger pull-behind trailers to the massive rolling castle they had most recently.

In February this year, they put a dialysis catheter in and after hemming and hawing and four surgeries to correct issues with the cath, she started doing dialysis from home in October. She seemed to respond well and it looked like maybe Dad would get to buy that small RV. In November, she wasn't draining properly because scar tissue grew over the cath's opening. They thought they fixed the problem, but in late November, they realized there was probably other problems.

December 10th, Dad woke up at 4 AM and checked on Mom. She asked him to call for an ambulance because she didn't feel well. And if she wanted an ambulance, he knew this was a serious "didn't feel well". She seemed to improve and decline nearly daily. She suddenly started having spikes and drops in her blood sugar and nobody could figure out why. Last week, her glucose dropped to 38! For Mom, the normal range was 80 to 115. (they moved her to the CCU that night) They realized sometime that day (before the drop to 38) that the problem she was having was that she had some kind of internal leak and the fluid they use for the home version of dialysis was being leaked into her body and gathering around her lungs. They tapped her lung area, got a couple pints of fluid off it and decided to start hemodialysis. She did so well on that. She seemed like her old self, just tired. We exchanged our usual gallows humor when I was visiting her one day during one of those four-hour hemodialysis sessions.

They moved her from the Critical Care unit back to the Intermediate Care unit on Friday. She was still getting the hemodialysis and on Friday morning, she refused it. She said she didn't "feel right" and wanted to be left alone. The doctor talked her into doing it that afternoon. On Sunday (Christmas Day, for all of you keeping track), she was tired and would doze off. We were all there- my dad, me and the disabled guy and our three kids. I brought both my parents some pie- apple for Dad (he loves my apple pie) and a sliver of pumpkin for Mom. I had permission to bring her a piece that she'd eat- I think the nurses expected a standard size piece of pie, but Mom didn't eat a lot of pie.

Anyway, she ate her pie after she tried to eat her lunch. She managed about five forkfuls of mashed potatoes, so I wasn't sure she'd even be able to eat the pie. But she did. All of it. Dad later told me she had hospital food-pie after dinner.

We spent a couple hours there, talking and laughing and trying to be quiet since we were in a hospital and my parents raised me right and I raised my kids right and we're all courteous of other people- but I digress.

I went to bed a little late, around 11-ish or so. I was in bed with my legs elevated (I've been swelling a little more than usual lately) and I had just answered a message to a friend on Facebook and set my phone down. Moments later, my land line rang. I knew it was Dad. When I answered it, he asked: "Are you drive-able?" (he knows of my nightly Vicodin/muscle relaxer cocktails).

I replied, "I can be, what's going on?"

He said that the hospital called and we needed to get up there right away. I leapt out of bed, threw on my too-big yoga pants, giant blue shirt and slipped my sneakers on without socks. I grabbed my jacket and a hoodie on my way out the door. I broke many speeding laws getting to the hospital. I beat Dad by about five minutes. I waited for him, though, because I didn't want to face any sudden medical decisions (I was on Mom's medical decisions list with Dad) all by myself. Dad arrived. We went up together. They stopped us in the hall to tell us she hadn't been moved to the ICU yet, to go down to her regular room.

On our way down the hall, the floor's head nurse stopped us. She told us how Mom was talking to a nurse while they were doing her vitals. Then she stopped talking. And her heart rate went bad. They called a Code Blue and brought her back. Then they called Dad (and he called me- see above). Then she said that Mom went again and they were working on her right now.

Dad said: "You can stop. She had a 'no code' on her records."

And I lost my shit right there in the hallway. For those who don't know me, I'm the one who holds it all together. I have to be outwardly strong. When Jerry had his stroke, I handled everything and then I would cry by myself in the bathroom so no one would see or hear me. But I lost it right there in the hallway. I stifled my sobs with my hand (it was around 1130 PM and I was raised to be courteous) and someone handed me some tissues. They led us to the private waiting room down a long hallway. Dad told the nurse a few important things, I don't recall what really.

Well, I could continue with the minutiae of what happens when a family member dies in a hospital, but you can just assume that it was quick, precise and very professional. They gave us her glasses and the stuffed moose magnet that my youngest daughter brought back from college for Mom (Mom liked moose). She put the moose on the eraser board in Mom's room and I drew a girlfriend for the moose next to it.

Anyway, I've cried several times while writing this blog post. Her memorial service is tomorrow. Mom didn't want a funeral and she allowed for a "celebration of life". She was cremated and didn't want any kind of graveside service.

As for how this is related to fibromyalgia- well, it isn't really, but I figured this blog is where I've been recording how fibro makes me feel. And stress, emotional ups and downs, and lack of sleep will affect fibro. I'm feeling more tired than normal, but I don't hurt more than usual. Yet. I expect that if I do feel pain from this, it will hit after all the activity settles down.

I know this was long and of course its worrisome, but there is no need to worry over us too much. There have been just as much laughter as there have been tears. We're a practical people and we soldier on. And we're there for each other. Next week, Dad and I are going through Mom's stuff. He wants to donate her clothes and anything else usable to a local charity that gives clothes to people who need it (the name of the organization escapes me at the moment). Mom has an Alaskan gold nugget bracelet that I think I'd like, I'm going to ask him about it tomorrow.

316 of 365/2- I never wanted to do a photo of the day like this...

Wednesday, December 21, 2011

Strange Signs of Fibrofuckingmyalgia

My intent with this blog was to share the life I'm living with fibrofuckingmyalgia- hence the name of this blog- because I wanted people who are experiencing this to know they're not alone. Even though it does little to actually help, it does lift the spirits a bit to know that there are others who are going through the weirdness that you are. I'm not out to share tons of links or suggest treatments or anything else- I just want you to know that you're not alone. You're not alone and there are other people living with the same crap you are.

I received an email today from "Everyday Health". And it included a very interesting and helpful link. Six Strange Signs of Fibrofuckingmyalgia (I may have altered the title slightly)

Since I'm fond of talking about myself- as this blog so clearly proves- I'm going to break this down by the signs...

1. Allodynia. This is where it is painful to be touched by another. Some fibro sufferers are cool with it and even get massage. Lucky them. I don't get much physical affection around the house, so I don't rightly recall when this started for me. But you know, if your significant other is working at the computer or something and you walk up behind them and rub their shoulders? Yeah, don't do that to me. Especially not today. I'm only upright and dressed because I have shit to do and that shit don't get done if I'm curled up naked under my fuzzy fleece blanket. Sorry for that mental image. Hey, you knew what you were getting into by reading my blog.

2. Sensitivity to fragrance. I don't really have this one. I also have allergies that I take 10 mgs of Loratadine every day for, so fragrances have to be really intense for it to bother me. I do have the sensitivity to the light thing and I wear sunglasses when I go outside, even if it's cloudy. And here I always thought it was because I was partially vampire. I don't know how one becomes partially vampiric, but I assume the type of vampire that I am partly is a chocolate vampire.

3. Fibro fog. Oh, if you have fibrofuckingmyalgia, you're familiar with this one. Mine usually takes the form of suddenly forgetting how to spell a word. You see, I'm one of "those people" who dislikes misspellings. I feel the urge to take a red marker to the people on the Internet and after correcting their mistakes, writing a big red "F" at the top of their Facebook pages. Also part of this- I forget small things, usually multi-detailed things. I hate that.

4. Paresthesia. I actually didn't know that this had a name. My fingers and hands constantly get all tingly/numb. And my right foot. The top of my right foot, near the big toe and the weird second toe all the way up to the ankle. It is a very off-putting sensation. Not exactly painful, but it damn sure isn't comfortable. As I type this, my middle, ring, and pinky fingers on my right hand are mostly numb. The index finger and the thumb are at that tingly-painful stage.

5. Lipomas. I have no idea if I have this problem. My entire body is a huge fatty tissue, so finding that needle in a pile of needles is kind of hard to do.

6. Excessive sweating. Psh. I'm also in the throes of peri-menopause, who can tell "excessive sweating" from a freakin' hot flash?

Today is a nine on the pain scale. My skin hurts, it itches, and my weird pinched nerve is pinched like it is stuck in a vise grip. You see, 21 years ago, the disabled guy was not disabled and he was deployed for the Persian Gulf War (that's the First Gulf War for all you kids who dozed off in history class and missed the twenty second discussion of the "three-day war" in 1991) and I pulled a muscle, resulting in a pinched nerve in my upper back. I did this by picking up my then-17 month old baby. She's twenty-two years old now. I don't pick her up anymore, unless she needs a ride somewhere and I'm driving. But back then, with this pinched nerve, I had to wear a sling for six weeks. Six weeks with one hand and a baby to take care of. Of course, the disabled guy lives with only the use of one arm and has for the last seventeen years. But this isn't about him, there is a blog for that. A lot like this one, but with way less swearing.

But now, I've got shit to do... but like any good chocolate vampire, I'll take a break as needed and self-medicate with Cadbury. Not that American crap, the real deal- Australian Cadbury.

Monday, December 19, 2011

There is no title I can come up with to convey my feelings...

I've been having a flareup for almost a week. I'll have a day where I feel somewhat decent, so I'll do things, like go to the store or go see my mom in the hospital. Then the next day, I can barely pull myself out of bed to put clothes on, much less do anything. Today is the second part. I'm exhausted, although I am sleeping. I ache. My skin is doing that fire-itch thing. It feels like the bones in my hands and feet are trying to escape through my skin. And I'm swollen.

The edema thing- we can't be sure that's fibro-related because it hasn't been a symptom that has been marked or whatever. I have no damn clue how they choose which symptoms go on the list, but I can say that I started having fibro symptoms in 2004 and it was at the end of 2004 I started to have issues with edema. Sometimes it isn't much of a problem- my legs get puffy and there's a dent where my boot was when I take them off. Then there are days like today, where my legs look like they belong on commercially recognizable mascot for a certain marshmallow company or that equally recognizable tire company mascot. Both are referred to as "Man" at the end of their titles. You know what I'm talking about, right? Yeah, you know you do.

So, for almost a week, it has been one day on, one day off of the crapfest. Today was so bad that I didn't even bother to put on "real" clothes. I'm wearing my too-big yoga pants that I usually wear in the mornings because I don't wear PJs to bed (also, when I work out, I wear these pants) and my giant blue shirt. That's how I describe it: "Hey, can you bring me my giant blue shirt?" and the person to which I'm speaking knows which shirt I'm talking about. I used to wear this shirt over a decade ago and it actually fit me back then. Now it is a giant shirt... the sole purpose of wearing it is for comfort.

I've been taking some daytime Vicodin on these bad days. Not for the pain so much, though. Because I can deal with pain. I've done it for years. No, I've been taking the Vike (as I've started referring to the Vicodin) to settle down these itch-sensors. It works. It doesn't eliminate the itching, but it does subdue the sensation enough for me to stop bitching out loud about it.

All I want to do is eat comfort food and curl in a ball. Except the comfort food usually has too much sodium and curling in a ball requires me to get up from this chair. And I'm not getting up from this chair.

Oh, is that Cadbury? Will you bring it to me? No? Jerk. Fine. The next time I get up, I'm taking that Cadbury and you can pry it from my paralyzed-with-pain claw-like hand. Remember, I'm hopped up on Vike... I have the grip of an angry elderly person.

Damn right you better back away slowly. Hey, while you're up, can you get me that Cadbury behind you?

Monday, December 5, 2011

The Whining today is laced with anger. And swearing. Lots of swearing...

My fibro has been kicking my ass hard lately. I did so well in the summer with losing weight that I had hoped to keep up that momentum. But its a lot easier to muster energy and work through the pain when there's something unusually rewarding going on. And no, I don't mean the jousters. Heck I only spoke to them for a few minutes at the end of the day. I mean the overall experience. Being "on" for the non-garbed patrons, talking with my friends, spending time with everybody. Even though I was in pain, I muscled through it and it was worth it. I had so much fun, took so many wonderful photos. And even though I know it will hurt again, I can't wait till next year.

But when the only thing I can expect at the end is more pain, I just can't get myself out that door to walk. I tried to by announcing my photos of the day would be taken out on my walks, but I couldn't do it. One day, I did fine. But the day after I was so sore that the pain brought tears to my eyes.

AND THAT'S ANOTHER THING... try explaining the pain after physical activity and have people say, "Oh, you gotta just work through it. Everyone feels sore after they work out." It isn't the same thing! I know the goddamn difference between workout pain and fibro fucking pain. Two completely different things! Workout pain feels GOOD. Fibro pain sucks the goddamn life out of you and you can barely sit up in bed, much less put on trainers and walk a fucking mile.

The utter exhaustion I feel every fucking day is different than feeling tired from working out. I don't lack motivation, this stupid fucking disease takes it from me. I goddamn guarantee you that I wake up every morning with an eager mental state. I'm a fucking morning person. And by "morning person", I mean whichever the time of day I wake up. But now I reach over and turn off my alarm and as soon as I sit up, the fucking pain starts to sap my energy. By the time I'm upright and in the bathroom- where my workout clothes are- I'm in so much fucking agony that I just want to go back to bed.

On top of all this, I feel sometimes that I've let people down. I'm sure nobody gives a damn about my stupid 365days photo project, but I did say I'd take photos from my walks. Even that couldn't help motivate me. I've thought about walking after I take my pain meds. That would be the one time I have no excuse for, aside from just not wanting to go walking that late in the evening.

As I sit here, at this computer desk, all my muscles feel tight. And no, stretching doesn't help. It makes them hurt more and it even makes them burn a little. And not that "push it to the max" workout burn. More like "fucking hell, I think I've pulled a muscle" burn.

I don't know what is causing this right now. Could be the weather changing, could be nothing. Could be this stupid fucking disease likes to make me its bitch and wrestle me to the floor and punch me in the arm till I bruise.

I'm just glad that I don't have the itching yet.

Sunday, November 20, 2011

In my whiny lamentations, I made up a new phrase...

I was going to come in here and whine like the pissy little bitch that I am about how it hurts to go for a walk. And it does. A lot. Okay, let me whine about that for a paragraph or two...

Like an idiot, I declared that all my 365days photos would be taken "a mile from my house" because, dammit, I want to keep losing weight. Not that I ever expect to be thin again, but I'd like to be described as something other than: "That fat chick with the black hair"... like maybe "that moderately weighted chick with the black hair". Turns out, I can't walk a mile away from my house yet. Nope. I'm doing a half-mile and then walking back, to make a full mile. And in other good news, I can't go two days in a row. So on Day two of the Great One Mile Away Day, I'd already broke two promises I made publicly (and by "publicly", I mean "On Facebook").

I hurt so much the day after I walk that I'm not even putting shoes on my feet. That's it, man. The ren faire has healing powers. Sure, I'd hurt at the end of the day and my feet were screaming a symphony like an out-of-key donkey with someone stepping on his testicles, but I always had fun and still managed to walk back up that damn hill from the tilt yard. Of course, the motivation of seeing my friends and watching the joust was a huge draw. But still... walking on concrete and asphalt is a fuck of a lot worse than the grass and dirt paths at the faire.

Now, onto the new phrase I came up with... I was instant messaging with Shawn and telling him about a trying day with the pain after walking and how I can't even be sure some of this is fibrofuckingmyalgia or not. And I said this:

Fibromyalgia is like a fuck-you cocktail of learn-as-you-go.

There it is... share it at will if you feel the urge. I'm going to go have Oreos for dinner or something because I'm too tired and sore to cook anything.

Monday, November 14, 2011

I need to make a jumpsuit out of that blanket...

I felt so awful yesterday that I put off writing this post till today. Yesterday, my skin hurt. Every muscle ached to the point of tears. It wasn't a flareup like the one I had when Shawn was here, but it was bad.

How bad WAS it?

It was so bad that I stripped naked and crawled between two furry, soft, fleece blankets.

That's not much of a punchline! You ripped us off!

Yeah, well, whattya want? I'm not a stand-up comedian! I'm just some freakin' housewife who has this stupid disease and nobody around to listen to my lamentations as I play the same six songs over and over and whimper through the pain.

Only part of that is true. I don't play the same six songs. More like twelve.

I also don't whimper. I fucking bitch out loud and angrily. Then I strip naked and curl in a ball under a blanket and wait for it to pass. I took two Vicodin yesterday afternoon. Then I took two at my regular time (about two hours or so later) and then, my muscle relaxers. By bedtime, I was ready to curl up into a ball and play with yarn.

By "play with yarn", I mean that literally, I was giggling at stuff that wasn't funny to other humans. After I took the two Vicodin in the afternoon, I went upstairs for my strip-down-blanket-cocoon. I ended up watching terrible shows on a channel that used to be CourtTV. It was called "Bait Car" and I giggled my way through three episodes before I felt well enough to get up again.

But wait! I hear you saying, You're NAKED!

True... very true. But, I put on a fleece hoodie and a pair of velvet sweat pants- inside-out. That's right, I was rocking inside-out sweats. I managed to survive the rest of the evening till bedtime when I then stripped down again and re-entered that fleece cocoon I'd built myself.

Pain, itching, aching skin... it was not a good day.

By comparison, today is much, much better. So, at least there's that.

Thursday, November 10, 2011

Emotions and a shard of glass-

Shawn left on Tuesday. The time he spends here speeds by so quickly that when the day for him to leave pops up, we're always surprised. That day was emotional enough- and as we all know, emotions are candy to Fibrofuckingmyalgia. "RAAAARRRRGGGH!" bellows Fibrofuckingmyalgia, "I LOVE EMOTIONS! LIKE REESE'S PIECES!! *chomp-chomp-chomp*"

Or, you know, something like that. Plus, I had to drive Shawn to the airport. Our last moments together are of me battling road-rage like a heroin addict scratching for a hit. I get twitchy and scream-y at other drivers. And when I battle the urge to swear at them, it gets worse. But I digress... It is always sad when Shawn leaves. So, the fibrofuckingmyalgia just gobbled that up like a heroin addict getting a hit.

YOU LIKE THAT!? DID YOU SEE WHAT I DID THERE!? Yeah, I'm fucking brilliant.

Let's move on, shall we?

So, Tuesday, emotionally exhausting.

Wednesday, physically exhausting. If you know me, you know my kids are all in college now. The youngest is a freshman. She's in a school about an hour and a half a way. Same town as her sister, different school. My oldest lives in an apartment, the youngest is in the dorms. Ceej- that's the youngest if you're taking notes- has Wednesdays off. Nothing at all to do. She's been battling with the Veterans Administration to get her education benefits.

Long-story-short: This is my third kid to go through the VA education benefits bullshit. We applied early- as soon as we found out which college she was going to, we applied. "Apply early!" is what the staff says, for those benefits. We did. We got the usual automated reply: "you qualify for benefits-blah-blah-blah-due to a high volume of applications, it may take ten weeks to complete your process..."

That was when she had four months till the start of her school year. FOUR MONTHS. The boy- that's my middle child, for you note-takers (don't worry, there won't be a test on this later- got his first check at the end of August, because he started school in mid-August. And the VA pays in arrears. End of September comes, Jase and Kat get their checks, but Ceej doesn't. She contacts her VA rep at her school.

Needless to say, she didn't get her first check till November 8th. Yeah. She started school on September 1st. Same day as her sister. And she didn't get her check till this week. Luckily, she has generous grandparents (they gave her cash), a part-time job, a sister who lives in town (took her shopping, lets her do laundry at her apartment), and a brother (who also slipped her some cash to keep her from starving after the cafeteria closed).

So, back to the long-story-that-was-supposed-to-be-short-but-wasn't-short-at-all: Wednesday I spent almost six full hours driving. I had to drive out to get Ceej, bring her home so she could do her banking (there isn't a branch in her town). She wanted to pay her grandparents (that's my parents- you should know that, just because they're awesome) back some of the help they gave her. She gave me gas money- which was nice. Then I had to drive her back to school.

That put me at nearly six hours driving. I was a little tired from that. No worries, as I didn't have anything to do on Thursday. Wednesday night, I went upstairs to change from my jeans into my giant yoga pants and huge T-shirt. In walking from my bedroom to the bathroom, I stepped on an unseen shard of glass. I have callouses on my heels and I didn't feel it till the shard was embedded deep into my foot.

Slight ouch. It was a tiny shard, like a splinter. I tried to get it out with a pair of tweezers (which is when I found out it was glass and not wood). A needle didn't work either. I tried again this morning after my shower (hoping the water would soften up the callous). No luck. If I can't get it out by tomorrow, I'll have to go to "urgent care" and let the medical professionals handle it.

But, I can't put weight on my heel. Its right where the bulk of my weight hits when I step. So, I'm walking on my tiptoes on that foot. My calf is killing me and my right hip (that's the "hot spot" I have) is screaming a symphony of pain. I feel like I'm going to have a flareup caused by a tiny fucking shard of glass. (we assume one of us tracked it upstairs on our shoes)

Don't worry too much, I had a tetanus shot sometime in late September. I knew you were asking yourself about that. Really, I did.

If I ever get this shard of glass out of my goddamn foot, maybe I'll be able to get back to walking. Walking for exercise, that is.

Hey, look at this-

That's me with all three of my kids and Shawn.

265 of 365/2- Me, my kids, and my Aussie

Wednesday, October 19, 2011

From "fine" to "so painful there were tears" in less than an hour

Hey, you know what? Shawn is visiting again. How awesome is that? And if you don't know what I'm talking about, then you apparently don't stalk me on Facebook enough. I mentioned him in my previous post where I bitched and moaned.

Today was a lazy day. We watched movies and didn't do much of anything. Around 330 PM, I was so tired and achy, that I decided to go lay down with my feet up (lay down? Lie down? Who cares? I was flat on my back, on my bed). I thought laying (lying?) under my fleece blanket with my feet elevated would help.

I dozed off for about fifteen minutes, which is fine... but I got up and I was barely able to move. No worries, I thought (I do that, I think and speak in Australianisms sometimes)- but yeah, "No worries," I thought, "It'll work itself out a bit when I get to moving."

Except that it didn't. It got worse. I went from "mildly achy" to "absolutely in agony" in less than an hour. I had tears... and of course, the Disabled Guy didn't notice. So, I pointed it out to him. Still didn't know why- he said, "What? Are you sweating?"

"Yes," I replied. "I'm sweating from my eyeballs."

The whole thing freaked Shawn out, just a bit, because he has never witnessed a flareup in person. And of course, it had to be such a tasty morsel to witness- me going from slightly whiny to fighting tears in such a short period of time. I took my Vicodin almost an hour early because I couldn't take it.

I said to Shawn- who was doing whatever he could to help me: "At least I'm just in pain and not itching."

Stupid me.

Less than an hour after that, I was itching too. Great. Way to go, Brainiac.

It is now after 9 PM here. I'm fully Viked and fully Cyclobenzaprine'd. And I fucking itch. And I have the goddamn munchies from my pain meds. They don't always give me the munchies, but it happens. My pain level was at maybe a three on that Ridiculous Pain Scale. By the time I'd gotten up from my impromptu nap and sat down on the sofa in the living room, it had shot up to eight. In that hour's time, I was in tears. It was the fastest onset of a flareup I've ever had (that I can remember, anyway).

So, I'm a little tired. A lot uncomfortable. And a bit irritated at it all. Kat came home for the night (she's got something to do in town tomorrow). She did her usual thing- demanding food, as one does upon entering their parents' house; she ate food, complained about our lack of snack foods, and talked about random stuff. No biggie, typical shit. And she asked me where the place was where she was going tomorrow. So I told her which streets to take to get there and she made her teen-ager-annoyed-face at me (she's 22 years old) because she wasn't following along with me. I said, "Fuck it, never mind..." and in the middle of me trying to get up, she got all defensive at me.

I tried to explain: "I'm in the middle of a fucking flareup. I feel like shit. I went from 'fine' to 'fucking shit' in less than an hour. I'm loaded up on pain meds that are barely working."

She replied, "So you have to take it out on me?"

I said, "I'm NOT taking it out on you. I'm irritated. I'm in pain. I'm fucking itching. It has nothing to do with YOU. It has nothing to do with ANYONE except me."

I have no idea if she cared or was even listening by then.

Shawn keeps asking me how I am though. And at least he means it.

Thursday, October 6, 2011

Let's hope that little blip on my birthday isn't an indication of the rest of my year

I'm sure it won't, but you know how you superstitious types get.

Let's get everything up to speed right now. Saturday and Sunday, Ceej and I went to the Stronghold Olde English Faire. We weren't sure we were going to go, but on the last day at Bristol, as we were saying our goodbyes and hugging our friends who don't mind being hugged by sweaty people in period clothing, they kept saying, "We'll see you at Stronghold!"

So we went.

And I'm so glad we did. It was fantastic to see our friends again and as it turns out, a lot more of the cast people knew who we were than I thought did. Everyone should know how much I love Jane the Phoole. Because I do. She always remembered me (even if she couldn't place my extremely common name- she used to try and moniker me up with something more elegant only to find that nope, Just Patty) although for many years we only saw each other at the Janesville Faire for two days a year).

Well, at this year's Janesville Faire, I met a Captain Sir Martin Frobisher. He told tales of his travels and he was awesome and hilarious and grand fun. We saw him again, many times at Bristol. But in the time between Janesville and Bristol (about two months), he- that is, his non-character alter ego- sent me some messages about the photos I took of him at Janesville. So, when we saw him at Bristol, I knew he would remember me once I told him who I was. But I didn't even have to- he knew who I was. And that always makes me happy. And whenever we'd see each other in passing, he'd greet me with a cheerful "Good day, m'lady!" (he also, more than once, referred to me and the kid as "The Ladies [our-last-name]").

But back at the task at hand- Captain Frobisher and Jane are my two favorite Bristol characters. There are many, many more that I love (Robin Hood, for instance, and Little John. Those men make me laugh so hard that my sides ache for days). And I was happy to see Frobisher and many other of Bristol's cast at Stronghold. There was no joust at Stronghold, just a small, two-day faire. But Frobisher and a band of other men in finery (some were sea captains, some were part of the Queen's court/guard) played a game that we modern folk know as Jenga. Except this game was much larger and they played it with swords. Frobisher asked for my assistance three times- once it was not needed as the player before him toppled the tower, the second time, it was my honor to place the final block on the tower so they could start the game, and third, I dropped his sword when he asked me to hold it for one of his flourishes.

I've gotten off track a bit... But you know me, I do love to talk about the faire.

Two days of mostly walking and standing. Friday I had to drive three hours round trip to pick up Ceej from her college and Sunday evening, I had to do the same to return her. Since last week, I've been taking half the muscle relaxers that I normally do because I started to run low and I didn't want to run out before my next appointment (next week). On Sunday night and then on Tuesday night, I didn't take any muscle relaxers. I was driving and up too late to take them. Shawn arrived Tuesday, with just a two hour delay. That's an improvement on the 36 hour delay from his last visit.

We didn't go to see the girls on Wednesday. Jet lag got to Shawn and he opted to catch up on his sleep. But we're going to Milwaukee this weekend to do some museums and other such touristy things.

So, this hiccup I mentioned in the title.

Monday was my birthday. I have one plan for my birthday- to do as little as possible. And after two days of walking (and laughing so hard my sides are still sore, even on Thursday) and not taking enough pain medicine, I definitely didn't want to go anywhere or do anything. But the disabled guy wanted to go to Sam's Club. I hate that place. He always ends up buying stuff we don't need, which is bad enough. But he has to walk down every single aisle. No idea why. I even asked him why. My body was sore, I was tired, my feet were in agony, and I was swollen. I kept telling him I needed to sit down and that once we had the few things we needed, we should just go.

He either didn't care or he thought I was exaggerating. Or he just wasn't listening. By the time we were through the store (where I did a lot of standing at the ends of aisles), I was exhausted and frustrated. I just wanted to sit down and take off my shoes. But I wouldn't even be able to do that because my parents wanted to take us to dinner (part of my routine is to order pizza for dinner). We walked up to a checkout line- the disabled guy blathering on about how we didn't get "that much stuff" and then he waffled over which line to go through. I finally blurted that I didn't goddamn care and just wanted to leave. The guy in line ahead of us looked at me, a little shocked. I mean, how often do you see a fat chick at Sam's bitch out her husband? (don't answer that!). I looked at him and said, "Its my birthday and I'm here."

He said, "Oh. Happy Birthday."

I said, "Thanks." Then I looked away. All the frustration from that day just bubbled up and I felt like I was about to lose it. I asked the disabled guy: "Do you need me here for this? Can I go sit in the car?"

He told me to go and I put on my sunglasses and beat feet to the truck. I didn't make it all the way out there when the tears came. I got into the truck, turned the AC on full blast (it was hot) and turned up the music. I sat there crying for about five minutes. The guy who had been in line ahead of us was parked about two spaces down. He had enough sense not to come over and bother me, though for a moment it looked to me like he was going to stop and ask me if I was okay.

When the disabled guy walked out (finally), I'd settled down enough to be able to function. I didn't say a word to him- beyond "Don't break my frame"- and we drove in silence for about two minutes. Then he asked: "Why are you so mad?"

Mad? This isn't "mad" unless we're talking of the British usage of "mad" (which is "insane"). I started to explain, rather heatedly (that is to say, I went off on him, rather loudly), about what was wrong. I stopped halfway through. He wasn't really listening.

But, my son got me my required-by-law Dairy Queen ice cream cake. And Shawn arrived the next day. And aside from being exhausted, I'm okay. I got my muscle relaxer refill yesterday so I was able to take a full dose and crashed hard last night.

Tomorrow, we go to Milwaukee for a couple days. We're going to stop in and see the girls along the way back.

And, for fun, here is a video of Captain Frobisher playing Sword Point Tower at Stronghold. And then some photos.

All Stronghold 2011 photos are here... Well, most of them. I still have some from "A Knight to Remember" to go through.

The good captain had such flair!

This is Bristol's "Robin Hood". He wasn't portraying Robin at Stronghold, though.

This man makes me laugh so hard...

Jane the Phoole-

The second attempt was better (by me, that is to say, my timing in snapping the shot)

Tuesday, September 27, 2011

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.

Sunday, September 25, 2011

Thirty things...

Over on the website But You Don't Look Sick, I stumbled on a blog post and it turns out, I'm a week late. But I'm doing it anyway. After all, the article stated "prominent bloggers were asked..."  I'm in no way "prominent", but I liked the article and I'm going to do it now.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia. But that's not all. I also have some arthritis issues, tendinitis, bone spurs (both in my feet),  I've had my knee replaced, I have hypothyroidism, I'm in the throes of a hellish peri-menopause, and part of the fibro is Raynaud's Disease (or "syndrome" or "disorder").

2. I was diagnosed with it in the year: 2010. June 27th, to be exact.

3. But I had symptoms since: At least 2005. But the more I learn about the disease, the earlier I can recall symptoms. The first scary ones I recall were at the end of 2004. But if I look back, I can see other things that could be attributed to fibro.

4. The biggest adjustment I’ve had to make is: coming to terms with the fact that this is forever. I will have this disease for the rest of my life and I have to learn how to live with it.

5. Most people assume:  that I exaggerate my pain/other issues. I don't. But I spent more than five years playing them down because I didn't want to whine. When I got the official diagnosis, well, I stopped. Now I talk about it. To anyone who wants to listen (or read).

6. The hardest part about mornings are: getting upright. I used to just jump out of bed, hit the floor and out the door for a four-mile walk. Now I'm just glad I can get downstairs.

7. My favorite medical TV show is: I don't have one. I used to like "House", but not in a while.

8. A gadget I couldn’t live without is:  Can we call this computer a gadget? I get more support and concern from my friends who live on the Internet than I do from the people I live with.

9. The hardest part about nights are: Staying asleep. I can fall asleep, but I don't always stay that way.

10. Each day I take:  A lot of pain meds at bedtime. Just so I can get up the next morning. Some days are good and I don't think I need the Vicodin at night. But, the next morning, I'm like a lump of concrete. The Vicodin helps, but it doesn't kill the pain.

11. Regarding alternative treatments I: I graciously accept advice, but I will probably not try the alternative treatments. In the five years leading up to the diagnosis, I tried everything. And when I say "everything", I mean "everything in my realm of reality" because obviously, I can't afford some of the alternatives.

12. If I had to choose between an invisible illness or visible I would choose: I honestly do not know how to answer this one. I've lived my entire life with an invisible problem (hearing impairment- I was born deaf in one ear). I wouldn't know what to do if I had something visible.

13. Regarding working and career: I've been a stay-home mother and wife most of my adulthood. But I recently started to do photography again and that is a lovely distraction from the pain. If you can find something that you enjoy doing, then nothing will stop you from doing it. Just ask my friends who were bombarded with my photos from this summer.

14. People would be surprised to know:  That when I reach the point where I actually speak to you about the pain I'm in- it has reached a level that makes me want to cry. If I joke about the pain, that's because I don't want to start crying about it.

15. The hardest thing to accept about my new reality has been:  That its real. Its right here and there's nothing I can do about it but cope with it.

16. Something I never thought I could do with my illness that I did was: feel good again. When I started to have so many good days in a row that I forgot when I'd last taken daytime pain meds, I was shocked. So shocked I did cry. Tears of joy, which are way better than tears of pain and frustration.

17. The commercials about my illness:  Are asinine. They make it look easy to get diagnosed, to get treatment, and the ridiculous script: "I learned that there are nerves connected to our muscles..." Really? You just learned that? Wow, your basic science class didn't teach you a thing.

18. Something I really miss doing since I was diagnosed is:  Well, I stopped doing it about four years before I was diagnosed- walking and yoga. I used to walk four miles a day and do a lovely little yoga routine.

19. It was really hard to have to give up: Doing things with my kids. We spent several summers doing things like going to museums and festivals and such. It was a lot of fun. I even got a bike and we'd go biking on the trails around town. The slow downhill progression started that winter of 2004/05. I haven't ridden my bike since.

20. A new hobby I have taken up since my diagnosis is: The hobby itself isn't new, but I've expanded it greatly. Photography and going to the renaissance faire. Now I do hundreds of photos a week and this summer I had a season pass to the Bristol Ren Faire. Both things are fantastic, they sometimes hurt like hell, but they're also worth it.

21. If I could have one day of feeling normal again I would: Need a time machine and I'd go to New York City with my youngest daughter. She went to NYC in March of 2011 with the high school orchestra. I would have loved to have gone along as a chaperon.

22. My illness has taught me: Who really cares about me.

23. Want to know a secret? One thing people say that gets under my skin is: Being dismissed as melodramatic or when someone says: "My [insert someone here] has that, she takes [insert random drug or alternative therapy here] and she's FINE!" Good for her. I'm sure she is fine. How often do you see her? Oh, once a year, huh? Well, how is she the rest of the year then?

24. But I love it when people: Understand or accept without judgement. There are still a lot of people who think fibro is a "fake" disease.

25. My favorite motto, scripture, quote that gets me through tough times is: I honestly don't think I have one.

26. When someone is diagnosed I’d like to tell them: Good! Now you can get some help!

27. Something that has surprised me about living with an illness is: Having taken care of the disabled guy, nothing has surprised me about my illness.

28. The nicest thing someone did for me when I wasn't  feeling well was: Little things. My kids were all teens/adult-aged when I got the proper diagnosis. And even though they acted like it was a big deal (what isn't to a teen?), they still helped me with things like putting away groceries or carrying heavy things, taking the dogs out (we have a lot of dogs and no fenced yard, so they don't go out without a human). My friends have done little things for me as well- even something as seemingly small as a compliment makes me feel better. I was moved to tears by friends this summer.

29. I’m involved with Invisible Illness Week because: Well, I wasn't really. Had I known about it then, I would have done this a week ago. But, it would have been for the same reason I started this blog. To let other people know that they're not alone. And even if it feels like you're alone right now, there are others out there, like you. And knowing that you've got someone, somewhere who understands how you feel- well, that helps. A lot.

30. The fact that you read this list makes me feel:  Grateful.

Saturday, September 17, 2011

One of the things I hate about this stupid disease

Things are going along swimmingly, I suppose. I'm lucky enough to have gotten that elusive diagnosis which means I'm getting treated for it, and right now, that treatment is working. I am having many good days in a row, which is nice. But the one thing I hate about this...

How fickle is this stupid disease? I mean, why can I be perfectly fine one day- so fine that I can literally stand for hours and even run the length of the Bristol tilt yard and only be a little bit out of breath. And the next day, I'm so sore that I can barely get out of bed?

Okay, so there is the whole point of "well, dumbass, you just said you ran the day before..." I suppose that's true. But what about days like today? I didn't do a damn thing yesterday aside from my usual wandering around inside my house and out onto the back deck with the dogs. And today, I'm so bloody exhausted I can barely stand up. And I ache. Every muscle is hot and angry. I feel as though yesterday was a day at the faire, except I'm not still smiling about having a good time like I did on those Mondays and Tuesdays following a faire day.

This is one of the things I hate about it. Feeling good for a few days and then having the next day slam into me like a folding chair thrown by an oiled-up,  overly-steroided-up guy in tights. And this whole thing seems to hit  on days when I have to get up and leave the house. You see, that's what this blog post really is- a procrastination device. If I stay here and write this blog, I don't have to go to the store. Except that I need to go to the store and I will have to anyway when I'm done with this. But, as long as I keep typing, I can stay seated in this chair with the ridiculous wheels on the bottom and rest my wrists on this little neoprene pad with seemingly 3D water droplets on it. And when the disabled guy comes down and says, "I thought you were going to the store" I can say, "I had to write this blog first." And then he'd ask: "It isn't a blog about me, is it?" and I would say, "No, this one is about fibrofuckingmyalgia" and the problem there is that now it is kind of about him, because I just mentioned him.

I'm fully dressed, by the way. I managed to get my jeans on, my shirt, my not-shiny-anymore red Docs. But still, I'm here. Typing and typing. Things ache and I'm hungry. You shouldn't go to the store while you're hungry, but I'm going to anyway. Plus, I keep stopping while typing to look over my shoulder at the TV. There's a marathon of "NCIS" on USA right now. I'm not a huge fan or anything, but you know, it isn't a bad show- as far as these silly shows go.

I don't think I can drag this out much longer. There's a double-edged sword when it comes to fibrofuckingmyalgia. When you're this physically and mentally tired, you need caffeine to get through it. But the caffeine- if you drink too much of it- can exacerbate the fibrofuckingmyalgia symptoms. Is that even a "double-edged sword"? Did I mix up my metaphors? Is that a metaphor? When did this become a grammar lesson? Is this a grammar lesson?

No, this is just a really bad excuse to keep from dragging my significant ass to the store. Although, that ass is less significant than it was before. Seven percent less significant.

Oh, look at that... this suddenly became a bragging blog. And because of that- look what I made yesterday in Photoshop with a photo I took- also yesterday.

Poster for a school library

Neat, huh? My photo, someone else's quote. I sent her the high-res version so she can get it printed however big she wants it for the school where she works as a librarian.

But yeah, I really hate this fickle stupid disease.

Wednesday, September 14, 2011

The end of the Bristol Renaissance Faire

I've been putting off writing this blog. Partly because I hurt so much last week that I didn't want to do it and partly because by writing this particular blog, it really does mark the end of the season for me.

Now, if you know me, I'm all about the comfort. I sit down as much as I can, I don't get up if I don't have to. It took me a few years to reach that point, but I evolved and it became normal. "I'll go if I can sit down" became my mantra. And the ren faire has plenty of places to sit down and rest. I quickly got the joust down and chose a seat from where I could take the best photos I thought I was capable of and for seven weeks, that's what I did. I sat in the same set of bleachers, in nearly the same seat every time.

Then, one of the jousters had to leave to go to another faire. And the Master of Arms was taking his spot- handing over his job to a lovely woman who went by the name Lady Gwendolyn. Also, Amadeo told me to start the fan page for his character, so I did. And then I somehow coerced Sir Gregory into it as well and I started his fan page (if you go to Texas Ren Fest, you'd know him as Otto Von Dusseldorf, the German knight). So, I got up from my seat. I would start on the opposite side of the tilt yard- in Gregory's section. I'd take a bunch of photos of him during his intro speech and then, literally, run to Mauldron's section (which was on the same side, just the opposite end). I'd stand there at the gates and take as many photos as I could. I had to get what I could for Mauldron's fan page! This was also the first time I'd seen him joust in two years. I was quite happy about that. And he seemed to be having a lot of fun as the bad guy. But, I discovered, standing by that gate, I could get amazing photos of them all. Oh, because I shared those two pages, here are the others- World According to Mauldron (the first page I ever started), Sir Maxmillian the Jousting Earl of Braden, and Sir Edgeron of Aquataine. I'm not an admin on those two pages, but I upload a lot of photos on them.

And I did get those amazing photos. I'm just going to link you all to the album on Flickr of the final weekend jousts, because I took hundreds of photos. Hundreds. So many awesome photos. And I told myself that the pain I was in and would be in for days- was worth it. And it was. And that pain was exquisite. It surpassed a level of pain that I can even describe. I said that to one of our friends at the faire and he hugged me.

Here's the album of the final weekend on my Flickr. I took over four hundred photos of JUST the jousts on closing weekend... enjoy that.

And I know you're asking yourselves- why the hell would I put myself through all that, knowing how much it was going to hurt. Because I love those guys. I love the faire and the people who I know from there. But this group of Hanlon-Lees Action Theater, they're special. Mauldron, Edgeron, and Gregory- they were in the very first joust I ever saw. It was that joust that made me fall in love with the joust. Their characters were awesome (even if Gregory was going by some other name and filling in for who I assume was Amadeo- because he left this year on the same weekend) and the action was great. I remember sitting in Gregory's section, watching the horses and the fighting and the action and the sounds of armor and the sounds of lances hitting shields and thinking how fucking grand the whole thing was. My photos of that first joust are horrible. It was five-and-a-half months after my knee replacement surgery and I was so completely wasted on Vicodin (I took two pills every four hours) that I couldn't remember anyone's name. But I knew I loved it.

It isn't just the jousters I love. I know their families too and their kids are awesome. The squires are cool, too. One of them acts like we annoy him, but we know he likes us. (he left with Amadeo- where it turns out he's jousting in Massachusetts).

And you're saying, "That's a nice, long-winded answer, Lady Smelly, but it didn't really answer our question." Firstly, I was Lady Smelly three or four times this year- I lost count.

Like I said, I love H-LAT and I approached the photography with the same thinking I did when my son was active in his martial arts. Everybody takes photos, but nobody ever shows them to other people. I mean, I took photos of all the kids I knew from my son's academy when they were in a tournament. I'd get copies made (this was way back in the olden days of film cameras) and give some to the academy and some to the parents of the kids. I have no idea how many photos were taken of my son during this time because nobody ever gave me any prints. After spending an entire season at the faire- and having my photo taken countless times (sometimes by people asking, sometimes on the sly)- I have yet to see a photo that wasn't taken by a photographer friend. And a few of those people have my email. I know this, because I gave it to them.

Turns out, that's pretty much the same thing for the people who work at the faire. Countless photos but they rarely get to see any. I already considered myself a friend of Mauldron and Maxmillian. It wasn't so far of a leap to befriend the others. And as Mauldron said once- eventually, everyone meets me. He said that to an old college friend (and his wife) of his who came to the faire. They sat in front of us in Maxx's section. Big shocker that I talked to them, huh?

For all my pain and all my work, do you know what I expected in return? Nothing. I know the guys appreciated what I was doing and they'd tell me so. And Maxx even picked on me out of character and that was his way of saying thanks. I gave him two CDs with all the photos I had taken of him up till the seventh week. And he teased me in front of people I didn't know. And said that I took amazing photos... I'm going to lose it and get all weepy if I keep going.

And if that wasn't enough...

Mauldron told me to be sure I was there on closing day- like I wouldn't be, right? He gave me a print of a medieval knight on horseback, being led by a squire. Its stunning. And they all signed it. And I cried. And if I keep typing about it, I'll cry again. There's a photo of it in that link.

I took a week off after that final, three-day weekend where I spent a majority of my time standing and walking. I stopped hurting sometime around Friday, but following a relatively decent weekend, the fatigue set in on Monday and I've been battling it all week. I'm still exhausted today. The weather's changing and that doesn't help. But, I intend on walking again, for exercise. I think I can handle a half hour to an hour every day. After all, I survived ten-plus hours every Saturday and Sunday for nine weekends in a row.

And while I'm sad that Bristol is over and I miss my friends (not just the jousters), I have one more faire to go to... Stronghold Olde English Faire, the first weekend in October. I wasn't sure if I was going to go or not, but on closing day as we were hugging our friends and leaving, everyone kept saying, "We'll see you at Stronghold"... so yeah, I'm going.

And I'll probably hurt a lot from that, but I won't care. Because I love faire and I love my friends. And I refuse to let this fibrofuckingmyalgia ruin it for me. And now, I leave you with this...

Me with Sir Maxx on August 27th. It was Steampunk Invasion weekend and I was dressed in a very lame Steampunk outfit. (the goggles and hat were given to me by awesome friends). During the parade, he did the same thing he did to me the previous week. My steampunk outfit was maroon and black- which are Mauldron's colors. I called out: "I love you, Sir Maxx" and he'd turn away- "No! Don't talk to me! You're wearing another man's colors!" (he loves me, I know he does).

195 of 365/2- Me and Maxx...

I have no idea what he's doing here, but this was August 28th.

196 of 365/2- Sir Maxmillian does humor me with these photos

Mauldron told me that when he saw the photos of me with Amadeo, "There's no way I'm going to be outdone by [Amadeo's real name]."

202 of 365/2- Sir Mauldron says he will not be outdone by Amadeo

This is Lord Darius. He's a jouster, but he was injured earlier this year and has been recovering and now squiring. He can't wait to joust again. He's also a cyborg sapien like me (well, not LIKE me, but he's got metal body parts like I do).

203 of 365/2- Lord Darius!

The last 365days photo taken at the faire. I titled this one: "How much do I love this man?"

204 of 365/2- How much do I love this man?

And, this... this is the very last photo I took on the very last day at Bristol Ren Faire, 2011.

The last photo on the last day

Thursday, August 25, 2011

Oh, my achin' body...

As good as I felt last week, imagine my surprise when I realized it was just temporary. Well, sort of...

Last Saturday, Ceej and I decided to stay after the faire for an event. It was a rally for a charitable organization called the RESCU Foundation. They help ren faire performers/merchants with medical expenses. We stayed after for this rally, which included entertainment, food, and an auction. (note to self- bring more money next time). We didn't really know what was going to happen there as this was our first time. And it was fun and really cool to see our faire friends in regular clothes and out of character (because some of them never break character!).

Saturday morning, shortly before the front gates opened, it started to rain. And by "rain" I mean "apocalyptic amounts of rain". It rained buckets for a good half hour or more. Ceej and I were soaked so badly it was as if we had jumped into a pool. I was literally soaked through three layers of garb down to my modern undergarments. (yeah, I can't get that into a character to not wear my undergarments). We eventually dried out (the heat and sun helped). My older daughter and her boyfriend came to faire that day as it was Kat's 22nd birthday.

So, we take all that rain, changing weather, the cold (I actually got chilled) and then the humid warmth. Add that to the fact we stayed after- which was surreal, to be at the faire in the dark- and we didn't get home till almost midnight. I had to wash our garb because mine was muddy at the bottom. As soon as it was out of the washer, I hung it up to dry and hit the bed.

I had about four hours of sleep. On Sunday, we had a two-hour class with Jane the Phoole on character development. It was fun and I learned some stuff. But, along with some talky-note-taking stuff, we had to do physical stuff. And it was a blast. We were in the Friends Garden and patrons were watching us. About halfway through the physical part, my hip started to ache. My right hip is a "hot spot". I don't know the actual meaning of "fibro hot spot" and my definition may be dead-on. Basically, when my hip starts to ache, that means I'm overdoing it and need to rest. It also means I'm going to hurt like a motherfucker the next day.

The class was fun and even the physical stuff- despite that ache- was hilarious and awesome. I got to giggling so much that I had to hit my asthma inhaler (the humidity and physical activity sort of made me wheezy). The class ended at 4 PM- I missed a joust! I survived, but I missed a joust!- and I had to dart up the hill to a stage for the Maxx and Mauldron Show. Oh, I've seen the show a dozen times (I think I've only missed it twice). But, I ran. Well, I ran like a woman in the renaissance, holding up my skirts. It was by no means a sprint, but I was moving a whole hell of a lot quicker than I usually do. I only missed five to ten minutes of the whole thing. (hey, I gotta support my friends. If you don't get the Maxx and Mauldron Show at your faire, but you get them as jousters, you should ask your faire about it).

Monday morning- that old feeling of being the Tinman after a rainstorm hit. I could barely move out of bed. All day was just awful. I felt awful. I hurt, my skin itched and my muscles burned. I'd have said, "oh, welcome back, my old nemesis..." except it isn't welcome here. I took it easy on Monday. I have a temporary online job and I spent most of the day catching up on the work that I missed on Saturday and Sunday (the powers that be are aware that I'm not online much on the weekends).

Here it is, Thursday morning as I type this. I still have some achy bits, but I'm feeling better. Not quite 630 AM and I'm not blindingly exhausted like I was all week. So it's a start. And it's a day early. Previously, I didn't feel quite right till Friday morning.

This weekend, I'll be at faire solo. Ceej left for college yesterday. She'll be back next weekend, but this weekend, with the freshman move-in, she has too much stuff to do. There's an itinerary.

On Saturday, during one of my rambling times with the jousters (they're so nice to me, putting up with my nonstop blathering, I appreciate that and I try not to go on for too long), I asked "Amadeo" if he'd like me to start a character fan page for him. (I'd asked him earlier in the season why he didn't have one and he said it was because he hadn't started one yet). He told me to go for it. We had a discussion about some of the details on Sunday. See, this was his last weekend before he had to go to another faire (his home faire, so he's actually going home). He claims- and I'll believe it when I see it- that he'll be online more there. Yeah, we'll see, Amadeo... we'll see.

Now that he's gone and there are two weeks left, I'll be spared my weekly blooding. A few weeks ago, Maxmillian accidentally got blood on my chemise. The following weekend, Amadeo did it on purpose. Then it became a game- a fun game where I got to hug handsome men in armor. So yeah, I'm not fighting it all that much. (although I'm sure all the laundering is killing my blouses).

I think I've finally caught up on what sleep I've lost. My hip stopped aching earlier in the week and now I'm just left with that residual tiredness. And that's not so bad, really. Mostly because to get that sore, I get to have two awesome days. I'll leave you with some photos... and Amadeo's final bloodings of me.

On Saturday- Kat was there, like I said. And she got to give Maxx his "favor" before the Joust to the Death. He asked her name (even though he knows it) and said, "is today your birthday?" She said it was (of course, he already knew it was) and told her meet him after the joust for the "best thirty seconds of her life". Also, one of the vendors we see at almost every joust gave her a metal rose. That was nice of him. (faire people are amazing and awesome, seriously).

And yes, you're seeing that right, Kat doesn't wear garb to faire. She has garb, but doesn't wear it because she only comes to faire once or twice a year.

Amadeo rubbed his sweaty, dirty face all over my cheek. And I thought my reaction was funny, so I used this as my 365days submission. (Have I mentioned his girlfriend yet? Because she's pretty awesome too- although she doesn't take part in these shenanigans).

And this is me with Ceej after the faire, in the Friends Garden, before the RESCU Rally. I was into my Vicodin and muscle relaxers by then (on an empty stomach because we didn't eat till we were at the rally).

And this is Sunday. He decided to hug me from all sides to get as much blood as he could on me. It was nice. If you're into that sort of thing. By the time he got through his fans, his blood had started to dry and my blouse kept sticking to him.

One good thing has happened from his leaving- well, aside from the fact that he gets to go home for the first time in months- Sir Mauldron will be jousting in his place. And the Mistress of Arms who is replacing him will be stunning. I can't wait for that. My loyalties are torn, though. I want to cheer for Mauldron, but Maxx's section is where the best photos happen. (this just means I'll have to get up and move around, so finally my jousting photos will look different).

This weekend is "Steampunk Invasion" and some online friends have gifted me with some Steampunk accessories so I can dress for it. That'll be fun.

Tuesday, August 16, 2011

Well, here it is, Tuesday. And I'm not dead on my feet

This summer, if you all remember, has been spent dressing up in an Irish overdress and a skirt (which varies- the color of my skirt, the overdress is always the same though). And I spend about ten hours each weekend day on my feet, walking around, running up and down the same hill several times a day and talking with an atrocious accent that's supposed to be English.

And as I started out, it would seem that Mondays were okay and Tuesdays the effects of the weekend would hit me like the proverbial Chuck Norris roundhouse kick to the back of my face. Tuesdays hurt. A lot. And would linger through Friday. Exhaustion and pain, but I found that the weekends at the Bristol Ren Faire were worth it.

Well, here we are. Tuesday. And I feel fine. And by "fine", I mean, I feel good. Don't worry, I'm not going to break into song. Nobody needs that torture. I'll leave the breaking-into-song stuff up to Maxx and Mauldron because they're so much better at it than I am.

But I do- feel good, that is. I didn't wear shoes yesterday- because following the two days at faire, the arches of my feet are usually sore. The whole not-wearing-shoes day usually leads to feeling gawd-awful the next day, but not today.

My "usual" days- I could function at a 5 to 7 on that ridiculous pain scale. I could just barely function. I'd drag myself to the store or I'd cook dinner, but it hurt. A lot. On the really bad days, I'd fight the stinging tears in an effort not to let it get the best of me. More often than not, I'd end up in the bathroom (the one place I can have a moment of solitude) and just cry for a few minutes. I'd spend most every night letting the pain meds pull me into sleep while tears would fall. I never told anyone that before. I don't think I've even mentioned it here. But yeah, the pain was so bad that I would cry. Going to the grocery store would take me three times longer than it should and when I would get back to my truck, I'd sit there for several long minutes and battle those tears till I could get home.

But today... today I'd label my pain a 1... maybe a 2. Sure, my feet were sore, but they're always sore (its called tendinitis- which is weird, because "tendon" is "tendOn" not "tendIn", but hey, I didn't invent the word). Where was I? Oh, that's right. I didn't hurt today. Well, I did, but for people like me, a one or a two on that stupid pain scale, that's fucking paradise.

And here's the funny part... I didn't notice how good I felt till later in the afternoon. I didn't notice it. Are you joining me in this journey? I didn't notice how good I felt because I've felt good for several days in a row.

I'm weepy right now, but for different reasons. I'd forgotten this is how I'm supposed to feel. I'm supposed to be happy and feel good and be able to stand up without cringing and I'm supposed to be able to cook dinner and pick up a laundry basket and stand up for long stretches and take photos and walk around for hours and talk to people and laugh and hug friends and carry things and walk uphill and even half-jog uphill when I have to make it to a stage for a show and I'm supposed to write long, half-delirious run-on sentences that jump around in topic!

I'm supposed to feel this way because this... this is how a normal person feels. I'm supposed to notice that my clothes are looser. I'm supposed to forget to take my pain medicine because I'm not in pain.

My status updates even just a short six months ago were things like: "Two hours till Vicodin time". For the next three weekends, its "x-many days till Bristol". Because Bristol makes me feel better. It hasn't just been good to me physically- because I know that's what it is, the walking around and getting that exercise- Bristol has been good to me mentally. I spend two days talking to people, some are friends and some are strangers. I'm doing what I do best and I am enjoying every minute of it.

This weekend was great because not only was I at Bristol, I got to meet some fantastic people (most notably, Sam and Aiyanna) and I was recognized for my efforts by people on Facebook (it has to do with fan pages and groups and my photos) except they were there in person, recognizing me by name. That was a good feeling. (as you know, I don't get feedback around the house).

Sunday's weather was absolutely beautiful and I didn't die of heat exhaustion at the faire. It was breezy and cool. And crowded! Odorferious Thunderbottom says that at last count there were "eight million six hundred thirty-seven thousand nine hundred fifty-six and one third people" at Bristol on Sunday. It sure seemed like it. The jousts were standing room only (or, sitting on the grass only, actually) and I had to get there early to get a seat. We took Ceej's friend with us because he'd never been to a faire before and I was on my own for most of the day.

I did my usual routine- jousts, Maxx and Maul, Friends Garden, Dark Cloud... walking around. And I learned something. When you lose weight, your skirts get longer. I usually have to hold up my skirts as I'm walking uphill and on Sunday, with everyone and their scout troop at the faire (it was scouts weekend), I had to pretty much hold my skirts up most of the time. People were stepping on it as well as me. That is, I was stepping on my own skirt, not being stepped on. And on two occasions, I jogged up the hill from the tilt yard. I used both hands to lift my skirts, and just darted uphill. Like it was nothing.

I haven't used my emergency inhaler since the third weekend of faire (so, three weeks ago) and I haven't taken any daytime Vicodin since the start of faire (so, six weeks ago).

So, with this fantastic update, I leave you with these photos.

William, Ceej and me- outside the gates of Bristol before they opened. Photo by "Duchess with Camera" (her screen name).

Me with Amadeo after he hugged me to get his blood on me. Its a game now. "Let's get blood on Patty"... but hey, if it means I get to hug this guy, then I'm all for it.

Me with Greg (who uses "Sir Gregory" as his jouster name). I wanted my 365days photo with him on Saturday, but he disappeared before I got it, so I asked Amadeo to be in my photo... then Greg came back. So I did a diptych of both photos.

And, Sunday. It isn't a great weekend at faire if it doesn't end with getting photobombed by "Sir Maxmillian".

182 of 365/2- Sir Amadeo loves me.

I have over six hundred photos in my Bristol Ren Faire 2011 album on Flickr. But, I have at least twice that many that I haven't uploaded. I average 400 photos a weekend. One weekend I had 650. Another I had 300 total. This weekend is Pride Weekend at faire and the next one is the Steampunk Invasion. For that one, some deliciously wonderful friends are making sure I'm decked out for it. (I'm lookin' at you- Bo, Amy, and Ellen!). Steampunk Invasion combined with Sir Mauldron jousting again will result in a high volume of photos.

Friday, August 12, 2011

I have no title for this...

We're on the downhill side of the ren faire now. This weekend is the sixth and that leaves us with only three to go. I'll be sad. I'll miss my friends (old and new). Sure, there's Facebook, but that won't replace moments like this-

161 of 365/2- Sir Maxmillian, the Jousting Earl of Braden!

Or this...

168 of 365/2- Guess what? Yeah, today at the faire was even better!

Or even this-

175 of 365/2- Sir Amadeo, the Red Count of Manchua!

Or the countless conversations and the other people and the people who think we work there... I found out through Jane the Phoole that I could very well become a volunteer street cast member. Apparently, you have to have good people skills and the ability to talk to anyone.

Gee... me? Talk to anyone? Ha!

I'm down twenty pounds, by the way. My next follow-up with the fibro doc will be a good one. I expect to lose at least another ten pounds before faire is done. And hopefully, I'll be able to start walking for exercise instead of just all day Saturday and Sunday at the faire.

I'm still having random days that feel awful. Sore or itchy, but a random day here or there is a lot better than every-single-day for weeks at a time. Knowing I can get up on Saturday and Sunday and enjoy myself all day long improves my mood. And the good time I have at faire on Saturday and Sunday carries me through my week.

This Sunday, we're taking a friend of Ceej's who has never been to faire. Next Saturday is Kat's 22nd birthday and she'll be meeting us at the faire with her boyfriend. (for those not in the know, that's my oldest kid). She won't be in garb, though, but she'll still have fun.

So, there's my update. The doctor was right. I DO feel better overall. I did some yoga moves last night and I didn't collapse on myself. So there's that too.

Thursday, July 28, 2011

The Renaissance Faire is good for you. Seriously.

Okay, maybe the ren faire is just good for me. Whatever. You're here now, read on.

So, the past three weekends, we've gone to the Bristol Renaissance Faire. I love that place. Even when we're not doing anything, we're having fun. Sometimes the kid and I (and "the kid" is the 18 year old daughter) will put on our fake and horrible accents and carry on a conversation to the delight of passers-by (who actually think our voices are done well, go figure).

So far, every single two-day weekend (with the exception of last weekend, when we only went on Sunday because Ceej had a college thing on Saturday), I've taken my Vicodin with me (and Panadol) and I have not needed it. Not once. Sure, I hurt, but when I do, I find a place to sit down. At the faire, that isn't hard to do. Plenty of benches throughout the faire, shows to watch, (the joust to watch), so I can sit down nearly anywhere for an indefinite amount of time. I haven't needed any extra Vicodin at night or even extra muscle relaxers. (I'm still taking Cyclobenzaprine at night).

Oh, sure, on Monday I'm tired. Tuesday is usually the day it catches up to me and roundhouse kicks me Chuck Norris Style, but for the most part, I haven't felt any worse or better than usual. Well, "better" is sort of... I can't find the right word. Better isn't the right word, but I do feel less crappy. Today is Thursday and I had an awful day on Wednesday. A day full of stress and bullshit and by the end of the day, my muscles were wound so tight I felt like I was a slingshot that was loaded and ready to fire. Or, maybe I felt like Chuck Norris, wound up to kill someone with a roundhouse kick to the face, only to realize the person is a baby and Chuck Norris would never roundhouse kick a baby in the face.

But every Saturday and Sunday, I get up, I get dressed- in garb, no less- and I spend all day at the faire. We get there usually 20 to 30 minutes before opening (depending on traffic) because once there, I have to pull my laces tighter and put on some accessories and such. And I don't hurt much standing at the gate. I have a pair of Doc Martens that I go last October because they look like faire shoes.

They're called Shoreditch Ninjas and I had to get them in black because that's all the website had them in. A few months later, they got them in "cherry red" which is Doc Marten-speak for "dark distressed red". Which would have been AWESOME.

New Docs! A birthday gift to myself!

So, all this time, you're thinking, "How is the faire good for you, Patty?" and some of you are saying, "Wait, your name is Patty? How lame!" I know, it is lame. It'd be even lamer if you knew my last name.

Well, today, I had to go pick up some photo prints and stop into the store for a couple things (I'm making hamburgers for dinner and we forgot to get buns). I walked through the store without getting tired. Or winded. Or achy. Or sore. Or any one of those annoying things fibro does to me. So, my time at the faire, being upright, mobile, and sweating (the heat, I swear, that's the worst part) is good for me. Maybe next week, I'll start trying that upright, mobile, sweaty thing during the week. Maybe Tuesdays and Thursdays. That'll be four days a week total.

And now, since you've gotten this far, here are some links to my favorite part of the faire.

The Joust! For all the photos you see, I have at least that many that I didn't upload and share.

The Maxx and Mauldron Show- a Knight at the Opera These guys are great. And they joust, so yeah. There's that too.

And, The Fantastikals at the Bristol Renaissance Faire... they're amazing. That's a job I couldn't do because they don't talk. And if I had to do that job, I'd either die or get fired. Because if you know me, you know I talk. A lot. In fact, I'm usually hoarse for two days following faire. DON'T JUDGE ME!

ALL the faire photos- so if you're really bored...

So there you have it. The Faire is good for me. Probably for you too. If you don't know if there's a faire near where you live, just Google "[your state] ren faires" and you'll find them. Trust me. I'm hoping to keep up this momentum after faire season.

Tuesday, July 26, 2011

Don't Judge People- a very long story to a short and simple point-

Today is Blog for Access Day. And since I live with- and spent many years as- a disabled person, I figured I'm a pretty good person to talk about it.

When Jerry- my husband, the disabled guy- became disabled, it was sudden and it was shocking. He literally fell down when he had the stroke. He was unloading the back of his truck (he was a long-haul trucker) with another guy and he was carrying a box. He staggered, dropped the box and the guy he was with- who I am forever thankful was there- asked if he was okay, then caught him as he fell. From that "fall", all he ended up with was a scraped knee. He could have broken a bone, his hip or his arm. Even cracked his head on the metal floor. Or, he could have had that stroke while he was asleep in the sleeper part of the truck cab. But he didn't. He was with that huge, muscle-bound guy wearing a weight belt.

Our early days were spent dealing with many complicated things. Medical things, physical therapy. Big words, long explanations and lots of questions. The smallest thing that concerned me was the easiest thing to get- a handicapped parking permit. With that blue placard on my review mirror, I could park almost anywhere. If the handicapped spaces were full at the physical therapy clinic, I could park in the no-parking zone, unload him, walk him inside, and go park the vehicle. But, I could leave it there, in that no-parking zone, without worry. Nobody would ticket someone who was dropping of a handicapped person.

As he was only twenty-eight years old, his placard was marked as "temporary". In six months' time, we could get it renewed and it would be more permanent (I think a year at the time). But, when that six months was over, he threw it away. "I don't need it." he said. He can walk. He can walk for miles if he has to and he has. He refuses to accept handicapped parking because, even though he's disabled, he says he doesn't need it. And he really doesn't.

In my mid-to-late-thirties, I became disabled. It happened slowly. What we didn't know at the time was that I was showing signs for what would eventually be diagnosed as Fibromyalgia. Honestly, I thought fibro was a made-up disease. Just one of those things they label a person with to shut them up. About a year after I started my slow decline, I injured my knee- again. The first time I injured my right knee, I was eighteen years old (I was eighteen all of a few weeks' time). I was running in a snowball fight (we lived in Alaska) and I blew out my knee like a football quarterback. So, this final knee injury- it was my eighth or ninth in twenty years.

I ended up on crutches, of course. Then a cane. And after a year or so my left knee started to hurt and I ended up having to use two canes. I had to use two canes for over a year. I looked like some kind of demented cyborg with two matched canes. One of my son's martial arts masters thought I was brilliant. I actually thought he was being facetious when he exclaimed his surprise at my two canes. But he went on to say how much coordination it takes to walk as quickly as I did, using two canes for support as I obviously was doing. I have to admit, when he said it would be the perfect "disguise" for a martial artist, I was kind of proud. Nobody would suspect the gimpy housewife.

Did I get a handicapped placard?

I did not.

My problem caused me great pain. Walking hurt and walking a lot hurt a lot. I had to plan my days by how much walking I was going to do and how much Vicodin I'd need to get through it, versus the amount of time I had to drive. My doctor kept telling me I didn't need a placard. Except that I did need one. My left knee, from its twenty or so years of compensating for the right knee had gone to bone-on-bone. That doctor strung me along for almost three years- even telling me there was nothing wrong with me that "losing weight and a little exercise" couldn't help. Except that everything started to go bad before I put on the weight. He was a jackass.

Jerry wouldn't request one for himself so I could use it either. I tried to get him to see how it wouldn't matter for him, but it would help me in a huge way. But, he didn't want one and he wasn't going to get one.

The high school where my kids attended over the course of eight whole years (three kids) was handicapped compliant with ramps and such, but to a person walking with two canes, ramps are not easy to maneuver. And during the course of that eight years, they changed the point of entry for parent/teacher conferences- sometimes multiple times a year. And with me being in that "plan my outing to match the amount of walking/pain" stage of my life, I would try to park near where the entry was or at least, midway between entry and exit. I would end up walking too far just to get into the building. And the staff would treat me like I was insane when I asked why they changed the entry point. "OH, we've always been at this door." No, you haven't. And I know you haven't. And despite all that pain, I never missed a single parent/teacher conference. Not even when I got out of the hospital on a Tuesday at noon and conferences were on Thursday at 4:00 PM. That was the ONE time I didn't use the proper entry point. Because I was in a wheelchair and unassisted (that was following my manipulation under anesthesia five weeks after my knee replacement surgery).

I did get a temporary, 90-day placard. That was when I had my knee replaced.

What I did get a lot, during those three years that I was getting sicker and sicker and in more and more pain was people telling me I was too young to be disabled. I was too young to be in this much pain. (I was thirty-nine when I had the knee replacement and I was forty when I was diagnosed with fibro). I was even told I was making it up or just outright lying.

Turns out, I wasn't. I knew I wasn't. My friends knew I wasn't. I'd say my family knew, but I got the whole, "We KNOW you don't feel good, you TELL us all the time" bit one too many times from them.

So, when you see someone who looks young and not visibly disabled with a placard or even just using a cane, you might want to rethink your attitude. There is no such thing as "too young for a stroke". There is no such thing as "too young" for a disability.

And we are not "lucky" when we get all those great parking spaces.