Cough-cough-cough! *brushes dust off blog*

I'd like to apologize for not updating this like I should. I mean, I kept thinking about it, then I'd think- "Nah, let's wait till after _____" and then after whatever happened, I'd think about updating... and then no, let's wait till... I was a week behind uploading my photos to Flickr, then eventually two weeks... and well, things got busy.

First off- the generic Cymbalta is still a big help. It isn't perfect, but the good outweighs the bad by a huge margin, so I'll take it!

There is no news to report about the left half of my left foot. It still acts stupid and refuses to have any kind of reasonable conversation with me about why it keeps acting like a dumbass.

The bad news is that my human knee- the right one, which, incidentally is the wrong one- hurts now. I carried a cane with me at my last two faires (Stronghold- photos here; and A Gathering of Rogues & Ruffians-
  photos here and all the Bristol photos are here) and used it a little. And since my last blog post, I actually had my son go to faire with me. I was shocked! And he enjoyed himself! He went to Bristol three or four times with me and even came to GRR with me.

On Week 7 of Bristol, both my son and older daughter came to faire. She's been there before, but hadn't been for a few years. So my son got to have more fun because he didn't have to hang out with gimpy ol' me and Kat showed him around and they saw a lot of good shows.

Left to right- Kat, Jason, Christine
Christine is a stage manager at Bristol.

Jason's first time at Bristol was Week 2- and he learned that it is both awesome and a curse when your mom and sister are on the inside of the faire. This is Cameron from Barely Balanced. I've known them for a few years now. On this day, I made sure to introduce Jason to Jimmy ("Large"), and Margret ("Small"), but didn't get a chance to talk to Cameron ("Medium") till right before the show- like less than a minute before he went on stage. And he took right off with it and made Jason come up and help him. All the photos are here... 

Cameron said: "Where's your mom?" and pointed at me.
Then he exclaimed: "Profile photo!" 

Okay, I've gotten away from my point. That happens when you ask me about the faire. What do you mean you didn't ask? Of course you did! I clearly remember you saying: "Hey, Patty, we haven't heard from you since August... how was faire?" Don't deny it. If you didn't ask, then why did I go off on that tangent with photos? Yeah, obviously your fault! So, back to the topic...

In all of my updates and doctor visits, I never complained about my hands. I've had problems with carpal tunnel syndrome (I don't even think they call it that anymore) for more than 20 years. I started off wearing a wrist brace on my right hand- but not all the time. Just when I needed it. Then it became an every-night thing. Then my left hand joined the mutiny and for over ten years, I've slept almost every night with two wrist braces. In 2007, the VA hospital gave me new braces because the ones I had were the slightly bent kind and nowadays, (or thenadays, I guess) the braces are flat. I actually have trouble falling asleep if I'm not wearing my wrist braces. 

Several months ago, the numb-tingling in my hands got worse. And worse. A few weeks ago (or a little longer, I don't recall exact dates here), the thumb, index, and middle fingers on my left hand went numb and haven't come back at all. My right hand comes and goes in varying intensity, but the left hand... gone. I called the VA to schedule an appointment, because the doctor always said to do that- if anything changed. The scheduling department transferred me to the "nurse help desk". They took a list of my symptoms and then said they'd call back. They did and made me an appointment for the very next day. I nearly died of shock at that because damn, that's fast! 

Well, it turns out that I'm looking at surgery to fix this. Today, I missed a call from the VA and have to call back in the morning (I didn't see the message when I got home around 3-ish. I saw it at 4:05 PM and they close at 4). The doctor had to refer me to the Rheumatology clinic for steroid shots to help with my hands. They're also referring me to the neurology clinic for a "nerve conduction test". When she asked if I'd had one before, I said I wasn't sure. She replied: "You'd remember, there are needles and they poke you in your arm..." nope, never had one. Sounds fun though! 

So, hopefully all that will fix what's going on inside my hands. Because not having feeling in my fingers and hands sucks, but not as much as what happens when I use them too much. Like, you know, doing my hair, putting on makeup, brushing my teeth, doing dishes, cooking dinner, and something I obviously never do- typing. What happens then is that my thumb, index, and middle fingers on both hands go completely numb, a thousand tiny hairy-legged spiders start burrowing around under the skin, and sharp, stabbing pain shoots around my hand and down to my wrist. (as I type now, the numbness, itching, and pain are quite mild. But I'm also two hours past all my pain drugs, so bleeeeeehhhhhhh...) 

And now, let's switch back to some photos. What photos? Well, Teslacon, of course. I ended up using my cane for that entire weekend. I was resentful about that, but in all honesty, it did help. Plus, my friends made sure I got to sit down a lot. Because they're cool. First of all, all the photos are here. Secondly, they made space for me again, so I was able to take cast photos. 

And, here are some of those photos! For anyone wondering- we did this against a black curtain that was already in the room. I used my flash with a remote trigger, on a light stand with a large umbrella to diffuse the light. I took this photo from across the room. But now- on to a bunch of the cast photos!

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.

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!

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.

My sofa companion for season 2 of "House of Cards". #chihuahua #dog #pet

A photo posted by Patty (@pahz_on_instagram) on Oct 10, 2014 at 4:24pm PDT

Moved to the bigger sofa, got a bigger companion... well, this one and two more Chihuahuas as well. #dog #germanshepherd #GSD #pet

A photo posted by Patty (@pahz_on_instagram) on Oct 10, 2014 at 5:21pm PDT

Luna... this is what happens when your human is a photographer. A typical "stare while human eats" turns into a dramatic photo shoot. And then INSTAGRAMMED! #chihuahua #dog #pet #shadows

A photo posted by Patty (@pahz_on_instagram) on Oct 10, 2014 at 10:40am PDT

Busted. He caught me. #chihuahua #dog #pet

A photo posted by Patty (@pahz_on_instagram) on Oct 10, 2014 at 12:54pm PDT

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

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

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

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

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

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

~Taken by Chad Britt~

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

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

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

Pain does weird shit to your brain.

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

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

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

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

The renaissance faire.

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

Pain medication.

Photography.

These are things I can't live without.

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

And now... some photos!

~Link to the whole album~


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

Then they had some fun.

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

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

Carlo Tuzzio and Caesar

Tabitha! As a patron!

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



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



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