The Return of the Flipper Foot

I have a triple threat when it comes to my left foot. My left foot is on the leg that I had my knee replaced (strike one). My left foot is on the body that has fibrofuckingmyalgia (strike two). My left foot has absolutely no talent and will never be an inspirational story that will win an Oscar when it gets adapted to the big screen (strike three).

Seriously though, I've had edema issues since late 2004. It has been blamed on everything from early menopause to a shrug followed by a mumbled "I dunno". What is the most likely thing is the fibro. Sure, the fluctuating hormones that are par for the course in early menopause probably don't help, but hey, fibro is the big thing.

With the new fibro medicine (the generic Cymbalta), my swelling has gone almost completely away. My feet and lower legs will sometimes get puffy, but they get puffy in that way that says: "the human we're attached to is morbidly obese, so I get a little puffy" way. Well, last night, the flipper foot returned. Actually, it made some weak attempts to return, but last night the flipper foot reappeared. I'm going to share the photo as a link, just in case swollen flipper feet gross you out. You see, I'm wearing a too-big pair of Nike slip-on sandals as slippers. My son gave them to me. I wear a size 8 in men's sizes and my son's feet are size 13. He got these for free or something, I dunno. All I know is that they're thick-soled and have memory foam on them. So, this photo will show the flipper foot with a dent in it, where the sandals press into it. It was funny to me but a little gross for someone who isn't attached to the flipper itself.
~~link to the dented flipper foot~~ SEE WHAT I MEAN!?

Anyway, I have no idea what caused ol' Flipperty to come back last night. I just checked- Flipperty is back tonight too, but not as intense as he was last night.

I had a flareup on Saturday that lasted less than a day. And by a "day", I mean I woke up feeling like hell and by lunchtime, I felt okay again. So, let's just keep that up and I'll deal with Flipperty.

Now to take it down a notch. Or sideways. I'm not sure where I'm going with this because I'm not sure where this whole thing is right now... but whatever...

When I talk about how good I feel with the new fibro drug, there's still pain. There will always be pain. But the pain is more tolerable. I can function like a normal person instead of just pretending everything is fine. And it pisses me off a little bit that no matter what I do, there will always be SOME kind of pain. I mean, fucking hell, I'm sitting here right now, 1016 PM as I type this sentence. I'm three hours past my drugs for the night. I shouldn't be feeling anything, much less be able to type without looking at my hands and hit the control+i keys to make my text go italics. And I've still got pain. I'd say the pain is at about a two or three on that stupid pain scale.

Anyway, I am going to end this with a few photos of sparrows that I took the other day. Because Pahz Lives with this Bullshit, Talks about that Bullshit, and Never Shuts up about this Other Thing that Isn't Bullshit and don't you ever call it that! (whew, I don't know where THAT came from- but dammit, don't call the faire "bullshit" because I love that place).






All birds are majestic eagles on the inside.



Also, I have asthma (a very mild form of it, and yet, it can still kill me), so when it gets cold in the single or negative digits, I have to cover my mouth and nose when I go outside so it doesn't trigger an asthma attack. And I say it looks like I'm going to rob a stagecoach.

This is Day 11 of my 6th year doing the 365 Self-Portrait Project on Flickr- (yes, those are tiny snowflakes in my hair and yes, that is my real eye color). I called this: "The Great Northern Stagecoach Robber" because I think I'm clever. So, one bonus of the weather changing is that I don't need to cover my face to take the dogs out.

What a refreshing change of pace!

Wisconsin weather was doing the usual thing it does this time of year and it triggered a bit of a flareup. What's the thing it does this time of year? That would be shooting up 30° (Fahrenheit) in a 36 hour period, erratic humidity, and then dropping to below-freezing at night. But, the flareup was more of the "drag me to the floor" exhaustion than pain. There was pain, but not as much as a "normal" (haha!) flareup.

"But wait," you say, "You said something was refreshing... well, what was it? WHAT WAS SO GOL'DURNED REFRESHING?!"

Calm down, Shouty Pants. The refreshing bit was arthritis. Yeah. My right hand was sore and a bit achy. ACHY. I had arthritis pain in my hand! Just your normal, run-of-the-mill arthritis pain in my knuckles! My fingers were a bit stiff too. STIFFNESS and PAIN NOT ASSOCIATED with fibro! I was so happy, I almost cried. But instead, I had ice cream.

I'm always amazed when something feels normal. I spend a lot of days weighing my energy levels against the pain/lack-of-pain and how much I need to do. But this last little flareup, I sat down in the living room, on the sofa, covered in Chis (say that out loud!) and found myself rubbing the knuckles on my right hand and my brain didn't automatically go "FUCKIN' FIBRO!" My brain said: "What the hell, man? Arthritis? Why the hell- OH MY GOD! THIS IS ARTHRITIS!"

I tell ya, man, it's the little things.

So, the new medicine seems to be working (as long as I don't fuck with things!) and aside from the mind-numbing exhaustion, the flareups haven't been terrible. I'm also still having pain in my foot from the plantar fasciitis, but it comes and goes. I also still have neuropathy (painful numbness) in that foot, too... but dammit, let's stop with the negativity.

I've got 67 days till the Janesville Renaissance Faire.

I've got 123 days till the start of the Bristol Renaissance Faire.

There are 207 days till the Stronghold Olde English Faire (and my birthday!).

And 214 days till A Gathering of Rogues & Ruffians! (date subject to change)

AND about 255 days till Teslacon!

Whew... those are my standing events. I don't know what else I have going on, but those are the important things.

And yes, I DO happen to have some photos to share. That's the name of the blog- "Pahz Lives with Fibro and Talks about Photography". (although, technically, I should call it "Pahz Lives with Fibro, Talks about Photography, and Never Shuts the Hell Up about Renaissance Faires.". However, the joke's on you! Teslacon is a steampunk event!!)

So, on to some unrelated photos-

Gypsy-



Luna-



Jasper-



Bruno-



And a few shots of the sparrows who live around the house. And in various small openings in the house.

And then I had to go and try to change things...

So, I found that wonderful sweet spot in the medicine cocktail I take for my fibro. I had a long stretch of feelin' good and doing stuff and baking things and photographing people and being a human and all that neat stuff you guys do all the time like you're Superman or something.

And I thought to myself: "Self, the whole point to you finding a fibro treatment that works is so you can stop taking so much pain medicine."

And like I dumbass, I replied: "You know, Self, you're right! Let's fuck some shit up like the dumbass we are, because I hate feeling good enough to live life like a goddamn human!!"

So, I decided that since I was feeling so good, I could cut back on the amount of muscle relaxers I was taking.

Just a reminder, here is what I have been taking for the fibro- the "sweet spot" I referred to in the first sentence- One 10 mg muscle relaxer between 530 and 6 AM, two 5/325 Hydrocodone tablets between 10 and 11 AM, three 5/325 Hydrocodone tablets between 6 and 630 PM, and two more muscle relaxers and the generic Cymbalta between 7 and 730 PM.

This is just the pain meds. This doesn't include all the "stay-alive" pills
I take in the morning after my first muscle relaxer.

My first step was to take only ONE muscle relaxer at night. I still fell asleep that night, I still slept, and I still woke up. Except I didn't sleep good. I woke up at least twice. But hey, it was one night and this is winter (our weather is unpredictable). So, I took only one muscle relaxer a second night. (this is along with everything else- I just cut back a single 10 mg tablet of muscle relaxer).

I woke up the next day with my arms, shoulders, neck, and hands so sore and so stiff that I could barely move. I said "Fuck this shit" and took two muscle relaxers at night and damned if I didn't feel better the next morning. Not 100% better, but significantly better.

So, what I can garner from my absolutely unscientific shot in the dark experiment is- Don't fuck with a good thing. If it ain't broke, stop fucking with the ain't-broke thing, you stupid, stupid human. It took me another two days before I felt better. And I still don't feel as good as I felt before I tried to fuck with things. My hands are still a bit sore and yesterday, my right elbow and wrist were so sore that I couldn't fully straighten or bend my arm. I walked around with one arm crooked slightly, like the worst C3P0 cosplay in the history of terrible cosplays. When I woke up this morning, my elbow didn't hurt at all.

I'm not going to mess with any doses of my fibro cocktail until it stops working for me. And then I'll talk to my doctor first. Because I'm a stupid, stupid human.

And to end on a much prettier and less-stupid note, I took a bunch of macro photos the other day. My son gave me a batch of tulips for Valentine's Day (and also some chocolate, because I have a good son). So, I took them over to the window, spritzed them with a water bottle, and snapped a few shots. The purple flowers are from a hyacinth I picked up at the grocery store a week or so before Valentine's Day.  Click on any photo to go to the Flickr album...

Some good news and maybe some weird shi- news...

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).

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...

Gypsy. (She doesn't have a "full name", but we call her "Gypsy-doodle" & she answers to "Doodle", "Poodle", "Dood", "Poopy-Puppy", "Poopy" & the kids call her "Doodle-head" sometimes). But she's a dignified wittle poopy-puppy. #GSD #germanshepherd #dog #pet

A photo posted by Pahz (@pahz_on_instagram) on Jan 20, 2015 at 9:25am PST

"I'm not looking at your, therefore, you cannot see me." ~Luna #chihuahua #dog #pet #sassy #somuchsass

A photo posted by Pahz (@pahz_on_instagram) on Dec 30, 2014 at 10:01am PST

Bruno and Jasper. All the dogs were in this shot before Instagram cropped it. #chihuahuas #dogs #pets

A photo posted by Pahz (@pahz_on_instagram) on Dec 29, 2014 at 9:04am PST

Gregg the Girl Dog with the Boy Name. (We just call her Gregg). No big story, just adorableness. #chihuahua #dog #pet #sunshine

A photo posted by Pahz (@pahz_on_instagram) on Dec 30, 2014 at 9:52am PST

Houdini (aka: Beefy). She could have been living with a jouster and his family, living a fun life and traveling the country with horses and other dogs, but she wouldn't bond with anyone but him. She was scared of him in his armor, even if he was just wearing the greaves. So, after 2 months of trying to acclimate her, he sadly had to give her back. Now she lives the boring life with me and the Disabled Guy (and the rest of the dogs. #chihuahua #dog #pet #sunshine

A photo posted by Pahz (@pahz_on_instagram) on Dec 30, 2014 at 9:48am PST

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.

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!