Sunday, December 21, 2014

I think I finally figured out this fake insomnia thing!

That's right, I'm typing this blog at approximately 4 AM on a Sunday morning because when I went to bed last night, I didn't go to sleep. Instead, I just existed in that bed, feeling the pain throb in the bottom of my foot in the area where I had two separate shots to take the pain away. I also felt my muscles vibrating with pain. And I had two pretty good days in a row (up till 1 AM, when I decided I had enough of just staring at the ceiling, the wall, the other wall, the ceiling again...). I was trying not to get too hopeful till there were some REAL results with this new medicine (the generic Cymbalta), so I wasn't going to say anything... but no... on Friday evening, I said out loud to the Disabled Guy: "You know, I felt pretty good today. And walking in the grocery store wasn't terrible."

Stupid, I know. I should have kept my flappin' face shut till I had some decent results to present.

Oh, by the way, we're on day 10 with no sunlight. Nothing but clouds. I know this because I took a photo of the sunshine and posted it on Facebook because a friend mentioned the "day-moon is on fire" in his status. I'm sure all clouds and no sunlight is probably making Pahz something-something.

Anyway, back to the title!

I think I might have this figured out! Okay, so you know how when you go to shut down your computer, but it doesn't shut down? Instead, that one screen comes up and says: "Do not unplug your computer" because its loading updates? THAT is what I'm obviously doing! Because I'll be wide awake, completely unable to "shut down" and absolutely useless to anything else. In this mode, I can't drive anywhere, I can't focus to read a book, and I can barely watch TV. And then, without warning- BAM! I'm so tired I can barely make it to my room to fall face-down on the bed. JUST LIKE A COMPUTER!

I knew that becoming a cyborg would be weird, but I didn't realize I'd have to do all these updates during my shut-down period. No wonder I keep rebooting in the middle of the day.

Wednesday, December 17, 2014

Dreaming about Sunshine...

We've had so many cloudy days that I've had dreams about sunshine. They're totally normal dreams, like I'll wake up (in the dream) and see sunlight shining through my bedroom window. In the dream, I sit up in bed and look out into my backyard through the blinds and see lush green grass and trees, with golden morning sunlight streaming through. Only to wake up and see nothing but clouds (or, darkness, depending on the time).

And, of course, with the clouds, we've had rain. So much humidity that even when it wasn't raining, the ground stayed wet. Fog nearly every night. I don't have to tell you how much pain I've been in- you can assume
"a fuck-ton" of pain. And, with that pain, I've had the drag-me-to-the-floor exhaustion. Most nights, when I get in bed, it almost feels like my muscles are vibrating with pain.

AAAANNND... I'm on day seven of the generic of Cymbalta. The "mild" side effects I've had have been slight dizziness and a little nausea. Nothing I can't deal with, but having that on top of everything else has been a wonderful little trip through a suburb of Hell. I suspect actual Hell has lower humidity. "Actual Hell"... Hell Proper, really. Back to the generic of Cymbalta- it does seem to be helping me sleep better. I'm still taking one muscle relaxer at night (with my Vicodin, still) and one in the morning. The pharmacist told me to stop taking those as I needed and that the side effects would last about a week or two.

I'm just waiting for the "makes the pain go away" part. That's all I want.

The other day, I was reading an article or something about fibro (because, why not?) and it gave an excellent description of how fibro feels. I've likened it to being hit by a truck, thrown from a horse, post-workout pain, lactic acid overload, and so on. The article- and I can't find the damn link now- said it somewhat like this: "When someone is poked in the arm, they feel pressure. Their brain receives the signal that pressure has been applied to the area. A person with fibro feels pain." So, where a normal person feels acknowledgement of touching, a fibro sufferer feels like they're being stabbed with an ice pick.

The "ice pick" analogy is my own. Just don't poke me in the goddamn arm, okay? Or stab me with an ice pick. A hug is way nicer than both of those things.

As for the "talks about photography" part of this thing- about a week and a half ago, I got to do something cool...

~Thee Bluebeard Visits Santa~ (and Santa is a familiar face from Bristol).

And later that week, I caught a couple photos of a cardinal. Normally, cardinals in my yard fly away and sit just out of zoom lens range for me. But I was in Racine and this cardinal apparently hadn't gotten the memo from the others to avoid me.


Cardinal... I decided to move closer...

Closer still...

And because the holidays are being crammed down your throat, here are a few photos I've taken in the last couple years. Happy Whatever Holiday You Celebrate!


Christmas in my back yard

Christmas in my back yard

New Year's Eve Snowfall

Snow, snow, everywhere snow

Christmas Stocking

Tiny tree


Friday, December 5, 2014

Well, Hello there! Been a while, hasn't it?

Hi there. Sorry I haven't updated for a while. I wish I could say it was because nothing but goodness and rainbows were all around, but hey, I was just being lazy and procrastinating the hell out of updating.

First of all, Teslacon 2014. It was, of course, amazing. I managed to snag a room in the big hotel (that's where the convention takes place) and that made things immensely easier. Christine and her boyfriend came along and at the last minute, a friend ended up crashing with us, so I was able to save money on the room (that's a thing with the Disabled Guy- he hates spending money unless it is being spent on things for his model trains). My Steampunk Wonder Woman outfit was a huge hit. Everyone loved it. I got so many compliments on that outfit that I just want to wear it all the time. Since everyone who reads this blog is either on my Facebook or Tumblr, you've all seen the Steampunk Wonder Woman outfit.
~Here's the link if you haven't~

I learned something at Teslacon. I can only stand on my feet for an hour before I really need to sit down. And I would need to sit down for a while, not a few minutes. By Saturday evening, my feet felt like they were being sliced open with a vegetable peeler and then stuffed back into leather shoes. That was the worst part for me- the pain. And the pain was mostly foot-related and not so noticeably fibro-related.

Oh, speaking of fibro-related... I arrived to the hotel on Thursday, because Teslacon officially starts on Friday morning. And the friend who ended up crashing in our room with us was there on Thursday as was another friend who only needed a bed for one night (she was staying at a hotel across the street but her husband wouldn't get to Teslacon till Friday afternoon. Heck, Christine and her boyfriend didn't arrive till Friday afternoon either). Anyway, we're all in the room. I'm laying in bed listening to my friends sleeping. Nice, quiet, soothing breathing sounds, like people do when they sleep. AND MY GODDAMN BODY DECIDES TO HAVE FAKE INSOMNIA! There I was, listening to all the sleeping, wide-fucking-awake till three in the morning! If I had been home, I'd have gotten up to come here and complain about it. I woke up at 6 AM, fully awake again. I did the entirety of Friday on three hours sleep. Dressed as Steampunk Wonder Woman.

~Here is the link to my Teslacon album~

Despite the pain and very obvious tiredness, I loved it. And because I didn't have to foot the cost for the room entirely on my own, I was able to purchase my tickets for NEXT year at the hotel, so I saved a few bucks that way (you can get them online starting in January, but there's a charge related to the online transaction). I'm hoping to get a room in the big hotel again for next year. (it was nice to be an elevator ride away if I needed to fall flat on my face). My one regret was that I couldn't get to the closing ceremonies. I was in line, I was walking, but about halfway there, my body just said "NOPE" and I had to sit down.

Now, moving forward... the Vicodin and muscle relaxers aren't working all that great, but I do feel better overall while taking them as opposed to when I don't. (my muscles are less stiff than they would be if I weren't taking them). That thing in my foot that I needed those shots for? Well, it kinda came back. It comes and goes. Some days, it doesn't hurt at all and some days it's so painful I want to chop my foot off and throw it to the sharks. That'd be quite a throw, since I live in the Midwest. I'm taking daytime Vicodin every day now. Oh, speaking of Vicodin... they changed the classification of it and now I have to call in a refill every month instead of just getting a year's worth of refills without having to talk to a human. I have to call, speak to a human, then wait for the pills to be sent to me. Every. Single. Month. I'm just waiting for the day they say I have to drive up to pick them up in person. It's only an hour away, but damn, way to make things a pain in the ass. I've had to start planning my days by how much Vicodin I can take and still function. I'm allowed six pills in a 24 hour period and I'm trying NOT to take that many. I've started timing my trips to the store with when I take the Vicodin and I've even considered using my cane again. And we all know how much I loathe using my cane. (I do, by the way, hate using my cane, just in case anyone forgot).

Earlier this week, I got a letter from my doctor. The VA Hospital's powers-that-be have "approved a 12-week trial run" for the generic version of Cymbalta for me. And so far, everything I've read about it seems to be good. And by that I mean- when it works for people, it works well. What I've been reading has been one or the other- it works well or it doesn't work at all. I haven't found much about "well, it makes me swell up for no reason without noticing for two months till I've loosened all the laces in my boots and can't lace up my corsets properly for faire"... or is that just me?

It's probably just me.

So, as soon as that Generic to Cymbalta arrives, I'll start taking it. And then we'll see... oh yes, we will see... (was that sinister? I was going for sinister).

I don't have any "events" coming up till January 31st. I'll be going to Military History Fest for the first time. My friend, Jeff
(who is one of the most awesome people ever), has been trying to get me there for the last two years. And why does he want me there so badly? Does he like me? Does he enjoy my company? Probably... but it's mostly because they need someone to take photos of their shenanigans.
("They" being GSM-Bristol). Last year, I was planning on going, but a snowstorm kept me from going. This year, I say damn the torpedoes! I'm going, snow or not! There were a variety of slightly blurry mobile phone pics from last year, of the GSM boys acting all over the timeline of military history. And dammit, I want to document it with proper camera equipment. The weird part will be that I'll be in regular clothing. Most of those people haven't seen me in regular clothing. It'll be a shock for all of us, I'm sure.

Now is when I'd usually say: "Now my favorite photos from Teslacon!"... well, just go to the album (linked above and again here). My absolute favorite shots are from the Grand Ball on Saturday night and the cast photos that I got to do. They let me set up my light stand (with umbrella and flash) in the casts' green room for a couple of hours. It worked out great, because I had a place to sit and rest and a fairly decent background to work with. And I just sat and waited for cast members to come and go. You'll recognize some faces from Bristol. (mainly my sea captains and other various nobility).

So, instead of filling this post up with photos you can clearly see by going to the whole album, I'll share my 365 photos from that weekend...

Thursday- I actually purchased a copy of that poster and it is hanging in my kitchen now.

266 of 365 part 5: Keep Calm and Drink Tea

Friday- I'm just going to link to it because it's a shot of my flipper foot after an entire day mostly on my feet (dressed as Steampunk Wonder Woman). The reason the swelling looks so weird is just because of the way my boots squished it around.

Saturday- we were getting ready for the Grand Ball. I wore my black blouse with my red and black Damsel in this Dress corset with a long red skirt and matching bustle. But this is a mobile phone shot of my face after I did my makeup. I texted it to the Disabled Guy with: "TELL ME I'M PRETTY!!" His reply was: "Pretty."

268 of 365 part 5: TELL ME I'M PRETTY!

And on Sunday. Me with Thee Bluebeard! (he was our roommate at the hotel). I had him hold the camera and I fired it with my remote trigger. And being Thee Bluebeard, he was an excellent sport about it. And yes, I decided at the last minute to dress up as my Steampunk Wonder Woman on Sunday. How could I not? That hat is fabulous! (by the way, those buttons on my bodice are for the "L.I.O.N.S. of Teslacon", "The Baton Faction", Thee Bluebeard, and the weird-shaped medal is one of my old shooting medals. It says: "Small-bore Sharpshooter" and I thought it was a hilarious pun because of the photography thing).

269 of 365 part 5: Thee Bluebeard!







Tuesday, October 28, 2014

And now we're going back...

Back to the muscle relaxers and hydrocodone cocktail.

I didn't call the doctor after my last blog post. I waited a week. Just in case... I wanted to give the new dose time. Well, I called yesterday. She called me back today. And for now, we're going back to the Flexeril (cyclobenzaprine) and Vicodin (hydrocodone) that I've been taking.

Now, if we recall, I was on Gabapentin for a while and it made me swell. Then we went back to the muscle relaxers and those worked till last Spring when they stopped working. Speaking of swelling... after the swelling from the Venlafaxine went away, I went down a jeans size. So, hopefully, these will work for me while we wait on the request for Cymbalta. (I just saw my friend roll his eyes again- and I'll see it in person when I see him next week)

I'm all for it, if it will get me through Teslacon. That's in a week and two days. And goddammit, I want to have fun. (who am I kidding? I'm going to have fun even if I'm in pain because TESLACON!).

I've had a couple more late nights since that last blog post (last night was one of them) and my pain has been off the charts on a few days. (more than a few, most. Most days I feel like hammered shit). Today, most of the pain is focused in my hands and wrists. And one shoulder, because fuck being able to use my arms. (I still have to finish up some costume stuff for Christine and Casey for Teslacon). In fact, typing is killing my right hand/wrist right now.

So, to wrap up this short update... here are some photos from my Instagram. Yeah, I have one of those too.

A photo posted by Patty (@pahz_on_instagram) on




A photo posted by Patty (@pahz_on_instagram) on





Monday, October 20, 2014

Here we are... middle of the night again...

So, I'm taking 20 mgs of this Amitriptyline crap. Yes, it's crap. It isn't helping. It does nothing for the pain and it absolutely does nothing for the sleep. I am wide-the-fuck-awake right now. I haven't slept good in weeks. As I increased the dose of this medicine, I had to decrease the dose of muscle relaxers because I'm apparently not supposed to take them together. So, I'm on this useless-as-Tic-Tacs shit medication and NOT on the muscle relaxers. Granted, the muscle relaxers weren't doing a great job anymore (judging by my posts in the early Spring through the start of Summer), but when I took them, THEY RELAXED MY MUSCLES. Not always perfectly, but now that I'm not on them, I can feel every goddamned twinge in my muscles. Every ache. Every pull. Every single muscular movement that could turn into a motherfucking Charlie Horse.

You ever have a Charlie Horse? You know that sudden, stabbing, searing, agonizing, pull-the-muscle-from-the-bone-like-a-tender-turkey-slow-roasted-in-Aunt-Sandy's-oven pain... Now imagine having one of those in your goddamn arm. Or back. Or even your abdominal muscles. How about a slow pulling pain? Like if you took a rubber band and pulled it slowly, slowly, slowly till it was at the limit of its flexibility... now pretend that rubber band is your goddamn muscle. Yeah. Sucks, don't it?

This is my third middle-of-the-night episode in about two weeks' time. And these are getting less fun as they go along. I suppose the good thing I can say is that I'm not swollen anymore. I mean, when I do swell, it's the "normal" amount. Meaning that I do still have the same "unexplained" edema I've always had, but I no longer have that all-over body swelling that always left me with flippers instead of feet. At the end of the day, my feet look normal.

Let me tell you something rather ridiculous... I was actually sick with something that had NOTHING to do with fibro! The weekend of October 11th and 12th was A Gathering of Rogues & Ruffians, my last ren faire for the season. (I still have Teslacon, but that's not a ren faire). On Saturday, before we left, I became rather unwell. I spent approximately forty minutes in and out of the bathroom, never straying too far from a receptacle, lest my body purge the contents of the last six months.

But, I soldiered on, because, goddammit, I'd rather be miserable at the faire than be miserable at home. Around 1 PM, it became obvious that what I had was a case of food poisoning and I had to leave the faire. I haven't left a faire early since 2009, when I left the Janesville Faire after my shift at the new age shop ended (I did tarot card readings at a new age shop's tent there). That was less than two months after my knee replacement surgery. So, now I've left GRR to go home. I took a wee bit of a nap (about an hour and a half, broken into twenty minute increments, because why the fuck not?) and while I was awake and laying in bed trying not to die, I felt relieved. I was relieved to feel something in my body that was NOT fibro. Food poisoning pain is a totally different kind of pain than that of fibro. Around 7 PM that day, I felt a wave of relief. I could feel the effects of the food poisoning wearing off. I ate soup!

Long story short- I made it through all day Sunday at the faire, but mostly because I didn't eat anything and I drank water and Sprite.

That leaves us up to date on the goings on in my life. Fibro still fucking sucks. Food poisoning doesn't give a damn if you have fibro or any kind of obligation. This medication doesn't work for shit and I feel terrible all the goddamn time now. And yes, there are photos of A Gathering of Rogues and Ruffians... because even when I'm sick as hell, I will do the job I'm expected to do.

So, I'm going to call the doctor tomorrow, tell her how terrible life is, beg for a change, and get through the next two weeks and go to Teslacon because TESLACON! While I'm doing that, enjoy this selection of photos from the 2014 Gathering of Rogues and Ruffians.

Fire-breathing!

Thee Bluebeard

A Gathering of Rogues & Ruffians- Sunday

Andrew!

Eric!

Signpost...

Odorferious Thunderbottom!

St Martin's Academy and GSM-Bristol put on a weapons demonstration

Music and belly dancing

St Martin's Academy and GSM-Bristol put on a weapons demonstration

St Martin's Academy and GSM-Bristol put on a weapons demonstration

To the Point!

To the Point!

To the Point!

To the Point!

Miles and Frobisher gawk at O'Malley

Anne-Drew and Hawkyns go for a ride

A Gathering of Rogues & Ruffians- Sunday

A Gathering of Rogues & Ruffians- Sunday

A Gathering of Rogues & Ruffians- Sunday

A Gathering of Rogues & Ruffians- Sunday

A Gathering of Rogues & Ruffians- Sunday

Thee Bluebeard and Captain Hawkyns...

Friday, October 10, 2014

Without these things, I would probably have gone off the deep end...

**Spoiler Alert**
When I got done adding the photos to the end of this blog post, my mood was so much better than when I started typing it. So, I got that going for me right now.
**End Spoiler**

My doctor called me on Tuesday. I was considering calling them, adding up in my head how long I'd been on this new medicine (Amatriptyline) and wondering "How long can I go through this before we say THIS drug isn't working?" when she actually called me. It startled me because the VA switchboard number doesn't have an assigned ringtone and the noise is that of an old-timey rotary dial phone's ring. Startled me so much that I almost fell out of my chair. (that's only a slight exaggeration).

She asked how things were going, how I felt, if I had any side effects... I told her that I was thinking about calling to ask: "How long do I have to be on this to decide if it isn't working" and what my very mild side effects were. She said we were going to up the dosage from a single tablet to a tablet-and-a-half. (10 mgs to 15 mgs). She also said that when I start the 15, I should cut down on my muscle relaxers. So, I only took one on the first night I took a pill-and-a-half. On the second day, I didn't take one in the morning (my usual dose is one in the morning, two at night). The next day, I could barely move. I had a severe case of "Batman neck" and I had it not just in my neck, but in my shoulders, elbows, wrists and my ankles. Like I said, I could barely move.

That night, I went back to the two muscle relaxers and the next morning, I took another... I'm not going to up the dose of the Amatriptyline till I get the proper prescription in the mail (also because I don't want to run out suddenly by using up MORE of what I have).

So, I've been miserable anyway, but last week and this week have been astoundingly terrible. I had a ren faire this weekend- Stronghold- and it was VERY chilly. It was fantastic, but damn cold. (I actually spent money on an actual cloak- on sale, helluva good deal). Hey, I actually have a photo of me wearing it...

~Taken by Chad Britt~

























Chad took that shot from inside the castle. I had just finished up a little shoot with the guys from Cutlass Cooking (they had so few photos of themselves that weren't on stage). I want to mention here- on Sunday, I completely forgot to grab the SD card I need for my camera. Partly from lack of sleep, partly from the flareup, partly from the pain meds, but totally my own fault. I was contemplating driving to the nearest town and buying a new one when I spotted someone from Bristol. His name is Stephen and he loaned me a 64 GB memory card so I would be able to remain useful at Stronghold. (and it is now in my belt pouch so I don't forget to give it back to him this weekend!).

Anyway, where was I? Oh, that's right, bitching about this stupid disease and lack of treatment that works at all. I spent all day Sunday (which is when that photo was taken) with a full-blown flareup. One of the other photographers made a comment as to why I'd go out in the cold air if I felt so bad. I said: "I could feel like shit at home and do nothing or I could come here and feel like shit with people I love and enjoy being around... so yeah, it wasn't a hard choice."

Without the faire and those friends to look forward to, this would be unbearable. This week, the fibro flareup triggered a flareup of the tendinitis in my shoulder. I had sharp, stabbing pain radiating from my upper back (slightly to the right of my spine), down to my shoulder where it turned into a burning pain, down to my elbow and wrist, where it mimicked the pain of having sprained said joints. Because of that pain- ALL THE PAIN- I was sleeping like an actual baby. A colicky baby with the power of speech. I woke up approximately four-hundred-thirty-seven times an hour (that's an estimate). I tried to take a nap each day (in the morning, because being upright and conscious suuuuuu-uuuuuuu-uuuuuucked so very much) and on Wednesday, when I hadn't taken any muscle relaxers, I dozed on and off for this nap thing... and I woke up crying. I remember dreaming about floating on a cloud-like bed, telling my friends, Ansel and Tabitha, that I almost felt comfortable and thanking them for letting me stay in their basement (for the record, they live in an apartment and while I saw Tabitha on Saturday, I haven't seen Ansel since Bristol). In the dream, Tabitha handed me something and when I reached for it, the pain shot through my shoulder and upper back. I woke up crying and with the faint sounds of Tabitha's Bristol character telling me not to do that again.

Pain does weird shit to your brain.

So, without having the faire to look forward to, the subsequent photo-editing that followed, muscle relaxers, Vicodin, and my friends, I don't know what I would have done the last few weeks. It just all runs together for me. I don't even remember the last time I felt really good. I do have vague memories of the blog posts where I was hopeful that the Effexor was working and that I'd felt "okay".

You know, I'm not even asking to be pain-free. I don't even expect to ever be pain-free again, not 100%, anyway. I just want to be able to do the stuff I enjoy doing and seeing the people I enjoy seeing. Looking back on how my life has evolved with the faire, I'm so glad this stupid disease didn't start causing me problems before Faire Life. Before this, I had nothing. I had the kids and the disabled spouse. We didn't do anything, we didn't go anywhere. I knew a few people- other parents at the kids' school(s), but we didn't do things together. And the few times I DID do something with another parent (and our kids, like a deranged Brady Bunch), it was because that parent needed an extra adult in the situation (like renting canoes and taking a day trip down the Wisconsin River and going to museums in Milwaukee). That was actually the beginning of the issues- I remember coming back from a museum trip in Milwaukee and my foot had swelled up inside my shoe. I wrote a review for the IMAX movie we saw and mentioned in the review how I was sitting at my desk with my foot in a bucket of ice water.

And now? Now I have three small faires, the one big faire, and the number one Steampunk convention on my list of "things to do". Plus, I've been to Chicago more times in a year than I ever had been in my entire life.

Anyway... I have a faire tomorrow- A Gathering of Rogues & Ruffians in New Glarus. And, in a few weeks, I have Teslacon.  I have "official photographer" status for GRR, but not at Teslacon. I'm unofficially the photographer there...

The renaissance faire.

The people who are in my life because of the ren faire.

Pain medication.

Photography.

These are things I can't live without.

And maybe you can see why I enjoy being with these people...

And now... some photos!

~Link to the whole album~


Some of the guys from the Guild of St. Michael.

GSM-Bristol





























Then they had some fun.

"Over the edge!" - an officer giving orders

"Not the face! I'm not supposed to get sword in my eye!"

Michael fights with vigor!

In the nook...

Queen's Court




















One of the kids' shows did a treasure hunt and we're pretty sure that's what this "Y" is about... but Sir Francis Drake ponders... Why?

Guilde of St George- Queen's Court

Guilde of St George- Queen's Court




















I got to follow the Queen's Court around for a couple hours and we ended up on the roof of the castle (the roof of the archway, actually, not the WHOLE roof).

Guilde of St George- Queen's Court




















Carlo Tuzzio and Caesar

Carlo Tuzzio and Caesar




















Tabitha! As a patron!

Captain Grace O'Malley!

Stronghold Olde English Faire- Saturday

Demonstration for the Queen

Chris and Katie

Jeff!

John telling stories for Cutlass Cooking

Cutlass Cooking

Cutlass Cooking

Oar Envy!

John and David

(117)

Sir Francis Drake

Horse and Falcon demonstration for the Queen

Horse and Falcon demonstration for the Queen

"I quite like this. I should get one for every gown."

Craig Hendee and Alvin

Loxen Bagel and Odorferious Thunderbottom

This is a photo of JUST the nobility and their "staff"... this doesn't include the GSM (military) or any of the stage acts.

Guilde of St George 2014

The last photo I took on Sunday- my 365... Day 234 of year 5. (that's my daughter with the red skirt and blue and brown shawls and her boyfriend next to her, wearing my cloak).

234 of 365 part 5: The end of Stronghold Olde English Faire

And for fun- my Steampunk Wonder Woman outfit that all started with a hat...

Alternate day 232 of year 5