First of all, the new medicine still seems to be working out. My bad days are becoming random and not predictable (as in- "not every day"). Any recent flareups have been related to the completely random weather we've been having (warm, then cold, then warm and snowy, then cold and clear, then and then and then...) So, we can call generic Cymbalta some kind of success.
Now for the weird shit...
For a long time now- and I'm not even sure how long because I haven't been keeping track- the palm of my right hand has been itching. Like severely itching. Not the skin- it isn't on the surface. It feels like something furry and angry and maybe a little bored is trying to wriggle out from under the skin. It's almost dead center in my palm. And nothing helps. Scratching just creates an irritation on my skin. Ice makes it settle a little, but mostly it just makes my hand cold (and then causes the Raynaud's to pop up). I've tried Old Wive's tails (rubbing it against wood- not that kind of wood, though I suspect if I did that, it'd distract me enough from the itching) and I've tried rubbing it against money (the Disabled Guy's family is overflowing with ridiculous superstitions).
So, I finally did a Google search to see if it was maybe related to the medicine. It is not. But the funniest thing to me was on the list of possibilities that apply to me- the two choices: Cirrhosis or a nerve issue related to carpal tunnel and/or fibro. I laughed for far too long about that Grand Canyon-esque leap of extremes.
Now, I'm not a doctor and I don't play one on TV, but I'm going to say right now that I'm not dying of liver failure and the itching is related to the nerve issue. (which makes sense, because it is almost always in my right palm and very rarely in my left- or even both at the same time. And my right hand has more carpal tunnel issues than my left because I'm right-handed). And, it's also one of those casual "mention it to your doctor at your next visit" things, unless it accompanies other shit that I don't have.
AND this... the generic Cymbalta for fibro... it turns out, that it may cause a drop in the body's sodium levels. I noticed that I wasn't swelling up as much as I have been (remember the flipper foot?). My cheekbones returned a bit and my clothes were fitting better. I didn't think anything of all that, other than I was feeling better, so my edema wasn't as bothersome. A couple weeks ago, I started to get dizzy and just sort of gross-feeling. Not sick, just not right. I decided to look up the side effects of the new medicine, to make sure I was just having normal shit going on, because I've been on it a few months. And, it turns out that it can cause Hyponatremia. If you don't feel like clicking the link, basically, that's abnormally low sodium in the body. Because we need some sodium to live.
I've been on a sodium-watchful diet since I was in my mid-20s. (technically, since I was 16, because my dad had his first heart attack then and my mom switched the entire household to a heart-healthy diet). When I was 26, my doctor told me I had high blood pressure and to go on a low sodium diet to help it. I tried and it did help- but in my late 20s, I couldn't fake them out anymore. So, along came the BP medication and the sodium-watchful diet. I call it "sodium watchful" because we eat pizza and such occasionally and people who are on an actual low sodium diet wouldn't do that. But, I do watch my sodium intake. Plus, I take water pills for the edema (Hydrochlorothyazadide). That would explain why I feel better for four or five hours after lunch during my day. My cereal for breakfast has almost no sodium in it. But, my lunch does.
I went on a bit of a sodium binge late last week into the weekend. I giddily ate potato chips and beef jerky because SODIUM! I simultaneously felt better and crappy at the same time. Anyway, now I know what a shark feels like when it swims too far into a river and loses the salt balances in its body. At least in my case, I can have a snack bag of barbecue potato chips and feel better. A shark has to eat a few people and then get hunted down by humans.
AND FINALLY... On Saturday last (as in, last Saturday, January 31st), I went to my first-ever Military History Fest. This guy has been nagging me to go (okay, so he asked me twice over the course of two years). I was going to go last year, but it snowed through the night and I didn't think it was safe to drive that far into unfamiliar territory. Well, this year, it started snowing at the end of the day, as I turned onto my street on my way home. As for "unfamiliar territory", the drive was literally an hour of I-90 and maybe a half hour of a couple small towns to the west of I-90. What I'm saying is, I've gone a lot farther down I-90 into Chicago and back again in worse weather... so I probably could have gone last year.
The big deal about that is that the VA has started regulating my Hydrocodone refills and now I get just enough to get me through a month. I didn't have any extra to take during the day over the weekend. I did all day at Military History Fest without pain meds. And the only problem I had the entire time was the pain in my foot. (my left foot, which will not win me an Oscar). And, I had a blast seeing the folks from GSM-Bristol and the Guilde of St George because everyone was so relaxed and not totally in character like they have to be at Bristol. I was in boring, normal clothes, but next year, I'll wear my (historically-inaccurate) garb so I fit in a slight bit more. I mean, I rocked my blue jeans, Wonder Woman T-shirt, and my metallic Docs, but I'd have felt less obvious in my garb.
(here's my 365 from that day). I sat through two panels, one about brewing beer and beerlike products and another about sewing. I learned a few things, but most notably, modern beer is for wusses because old-time-y beer (or, "olde-time-y") had way, way more alcohol content.
So, things are looking good. And I'm very optimistic about this year's faire season. We have approximately 99 days till the Janesville Faire. We've got about 155 days till Bristol. Bring it on. BRING IT ON!!
Instead of flooding this post with photos- like I'd normally do- I will just share the link to the album because you sort of have to see ALL the photos. (this is just the photos of GSM, I haven't uploaded all the photos to Flickr yet).
~~GSM-Bristol in Shenanigans Through Time~~
And, I did a short video... I think you'll enjoy it. (I even tried to close-caption it). This video shows just how awesome the folks from GSM-Bristol really are. And the other group in the video is called 20th Century Marines (that's the link to their Facebook page).
Thursday, February 5, 2015
Tuesday, January 20, 2015
I put the PRO in PROCRASTINATION and PROGRESS!
Yup. We're up in the middle of the night again. And when I say "we", I mean me. And maybe you. I don't know your life, those hidden cameras stopped working ages ago. But mostly me, because I'm the one here right now. So let's get on with this.
Why have I procrastinated? Well, I was going to update the new medicine progress a couple of weeks after last month's post. But then I thought: "Hey, dumbass, wait till after your followup appointment on January 15th. That'd make more sense than writing something now. Duh. You're so stupid." (my self isn't very nice to my self in these conversations. Don't worry though, my self talks about my self too, so that's just the relationship they seem to have with each other.)
So, I waited. Then I had my appointment. And then I waited another five days because WHY NOT!?
Well, a couple weeks before my appointment, I seemed to find the sweet spot of the medication. I take the generic Cymbalta at night, with one 10 mg tablet of Cyclobenzaprine (muscle relaxer), and my nightly Hydrocodone (two to three tablets). In the morning, usually shortly before lunch (so, between 10 and 11 AM), I take two Hydrocodone. And then, for five to six straight hours, I feel good. (not including this utterly stupid condition in my foot).
You see, normally, I'll cook dinner. That takes anywhere from a half hour to an hour, depending on what we're having. It also uses my hands (because I don't use instant potatoes, because gross) and I'm on my feet the whole time. So, by the time I sit down to eat, I'm exhausted and sore. Then the Disabled Guy cleans up the kitchen after dinner.
I see the hilarious irony to ME not being able to clean up the kitchen, but the person I refer to as The Disabled Guy does. Yes, he's disabled, but his disability doesn't cause him physical pain. But back to the story...
I noticed something good was happening when I cooked dinner and cleaned up after myself as I went along. And when it was over, I sat down to eat, slightly tired, but not kicked-in-the-face exhausted. And I did the dishes after dinner.
A few days later, I baked cookies.
A few days after that, I baked the Disabled Guy's birthday cake and he didn't even realize it when he walked into the kitchen while it was in the oven, because I'd cleaned everything up and put it all away.
Then, I went to a photography workshop in Chicago. (spoiler alert- it was awesome). You want the link to those photos? I know you do. Here's the link to ~Cupcakes and Instaprints~
Then I baked cookies again. I went to the store. I did things. And as long as I kept up that cycle of medicine, I was able to do things in large blocks of time in the middle of the day. I seem to have found the exact balance of pain medicine for now. At my followup appointment, the doctor decided to keep everything the same (medication-wise) and when I feel confident enough to handle the task, I can try walking for exercise again (there's ice out there right now. As good as I feel, I don't want to slip on the ice and completely fuck up my cyborg knee).
The only thing that is still pissing me off is that goddamn left foot. There's not much we can do about it because I'm taking the vitamins associated with helping neuropathy and I've gained a little sensation back in the numbness. But I'm double-cursed with that stupid thing because not only do I have fibro, I've had my knee replaced on that side. And that can cause an issue with neuropathy.
Sure, I still have bad days- I mean, look at me, I'm here... middle of the night- but the good days are coming in longer stretches and lasting for longer stretches. I don't dread going to the store as much as I did before. Now it's more of the "Great, there are people in there" and less of the "Great, I have to walk in there" than it was before.
I can tell you exactly why I'm awake tonight. It snowed. After several days of our temps in the low 40s (that's in Fahrenheit) and with humidity well over the 50% mark, it started to snow this evening. And I was in bed with my hands throbbing from the pain and my legs were on fire. They still are. Not literally, of course. Just in that itchy-one-million-hairy-legged-spiders-trying-to-escape kind of way. On the plus side of this ridiculous insomnia, I'm washing one of my super-soft blankets. One of the cats decided it had been clean long enough and hoarked a hairball on it- which I saw BEFORE climbing into bed earlier- so it needed to be washed. And the lack of that blanket contributed to the itchy-on-fire leg thing. One blanket did nothing to ease any fibroinations (just made that up, right now. You're welcome!).
So, good things. Yay! Fewer bad things. Yay, again! Photography. Yay! Oh, and I get to see a bunch of my faire family in a week and a half. I'm going to an event called Military History Fest where a bunch of them are re-enacting military historical stuff. I mean, c'mon, it's right there in the name. So, Faire Family! YAY! MORE PHOTOS! YAY!!
And, now I leave you with some photos from my Instagram... because you deserve to DIE from the cuteness...
Why have I procrastinated? Well, I was going to update the new medicine progress a couple of weeks after last month's post. But then I thought: "Hey, dumbass, wait till after your followup appointment on January 15th. That'd make more sense than writing something now. Duh. You're so stupid." (my self isn't very nice to my self in these conversations. Don't worry though, my self talks about my self too, so that's just the relationship they seem to have with each other.)
So, I waited. Then I had my appointment. And then I waited another five days because WHY NOT!?
Well, a couple weeks before my appointment, I seemed to find the sweet spot of the medication. I take the generic Cymbalta at night, with one 10 mg tablet of Cyclobenzaprine (muscle relaxer), and my nightly Hydrocodone (two to three tablets). In the morning, usually shortly before lunch (so, between 10 and 11 AM), I take two Hydrocodone. And then, for five to six straight hours, I feel good. (not including this utterly stupid condition in my foot).
You see, normally, I'll cook dinner. That takes anywhere from a half hour to an hour, depending on what we're having. It also uses my hands (because I don't use instant potatoes, because gross) and I'm on my feet the whole time. So, by the time I sit down to eat, I'm exhausted and sore. Then the Disabled Guy cleans up the kitchen after dinner.
I see the hilarious irony to ME not being able to clean up the kitchen, but the person I refer to as The Disabled Guy does. Yes, he's disabled, but his disability doesn't cause him physical pain. But back to the story...
I noticed something good was happening when I cooked dinner and cleaned up after myself as I went along. And when it was over, I sat down to eat, slightly tired, but not kicked-in-the-face exhausted. And I did the dishes after dinner.
A few days later, I baked cookies.
A few days after that, I baked the Disabled Guy's birthday cake and he didn't even realize it when he walked into the kitchen while it was in the oven, because I'd cleaned everything up and put it all away.
Then, I went to a photography workshop in Chicago. (spoiler alert- it was awesome). You want the link to those photos? I know you do. Here's the link to ~Cupcakes and Instaprints~
Then I baked cookies again. I went to the store. I did things. And as long as I kept up that cycle of medicine, I was able to do things in large blocks of time in the middle of the day. I seem to have found the exact balance of pain medicine for now. At my followup appointment, the doctor decided to keep everything the same (medication-wise) and when I feel confident enough to handle the task, I can try walking for exercise again (there's ice out there right now. As good as I feel, I don't want to slip on the ice and completely fuck up my cyborg knee).
The only thing that is still pissing me off is that goddamn left foot. There's not much we can do about it because I'm taking the vitamins associated with helping neuropathy and I've gained a little sensation back in the numbness. But I'm double-cursed with that stupid thing because not only do I have fibro, I've had my knee replaced on that side. And that can cause an issue with neuropathy.
Sure, I still have bad days- I mean, look at me, I'm here... middle of the night- but the good days are coming in longer stretches and lasting for longer stretches. I don't dread going to the store as much as I did before. Now it's more of the "Great, there are people in there" and less of the "Great, I have to walk in there" than it was before.
I can tell you exactly why I'm awake tonight. It snowed. After several days of our temps in the low 40s (that's in Fahrenheit) and with humidity well over the 50% mark, it started to snow this evening. And I was in bed with my hands throbbing from the pain and my legs were on fire. They still are. Not literally, of course. Just in that itchy-one-million-hairy-legged-spiders-trying-to-escape kind of way. On the plus side of this ridiculous insomnia, I'm washing one of my super-soft blankets. One of the cats decided it had been clean long enough and hoarked a hairball on it- which I saw BEFORE climbing into bed earlier- so it needed to be washed. And the lack of that blanket contributed to the itchy-on-fire leg thing. One blanket did nothing to ease any fibroinations (just made that up, right now. You're welcome!).
So, good things. Yay! Fewer bad things. Yay, again! Photography. Yay! Oh, and I get to see a bunch of my faire family in a week and a half. I'm going to an event called Military History Fest where a bunch of them are re-enacting military historical stuff. I mean, c'mon, it's right there in the name. So, Faire Family! YAY! MORE PHOTOS! YAY!!
And, now I leave you with some photos from my Instagram... because you deserve to DIE from the cuteness...
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.
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.
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).
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.
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.
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.
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.
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