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.
Sunday, December 21, 2014
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.
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!
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.
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!
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.
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."
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).
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.
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."
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).
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