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!

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).

This blog post is brought to us by Insomnia-Lite™

Why am I awake right now? Well, let's just check off this list...

 ✔All-over body pain. Every bit of movement causes stabbing pain through my muscles. Every bit of absolute stillness is met with a dull ache throughout my entire body.

✔Skin-on-fire. My skin is hot to the touch and I feel slightly swollen all over. Add to the skin-on-fire the whole a million hairy-legged spiders attempting to burrow out through my skin, because being hot, but not sweating isn't as much fun if you don't have random and deep-rooted itching through it all.

✔Painful numbness. Which is the stupidest thing ever. If it's NUMB, why is it also PAINFUL? Doesn't the word "numb" negate the word "pain"?

I dozed off twice in the hour and a half that I was in bed.

Now, let's move on a bit... I have some news to update the previous blog post. In that one, I mentioned that the doctor wants to put me on a Vitamin B-12 supplement (and folic acid). I got a letter from her on Wednesday and on Thursday, she called. It was weird. I'm not used to being treated like a human person by the faceless organization of the VA hospital.

So, basically, I'm on a daily dose of B-12 and folic acid now. That's supposed to help with the painful numbness from the neuropathy in my foot. . The previous blog mentioned the generic version of Cymbalta as our next step in the Fibrofuckingmyalgia Roulette Wheel of Fuck You. The call on Thursday was to let me know that the Assholes in Charge of Bullshit and Disappointment denied her request to put me on Generic Cymbalta. Instead, she's sending me Amatriptyline.

I sent this info to a friend who is in the real world and doesn't deal with the Wheel of Fuck You and the Bullshit and Disappointment department. As it is after midnight, I'm not going to text him for his actual job title, so I'll make one up as close as possible. He's the Head Wizard of the Ministry of Biological Medical Testing and Fancy Science-y Words. There... I'm pretty sure that's exactly what his business cards say.

His response to that above information, with my closing sentence of: "So we're just going to keep throwing shit at it till something sticks and doesn't make me swell up" was this: "For Fuck's Sake". There's a reason I love that guy.

Sometime this week, I realized that the reason I feel so utterly shitty is because I'm back to unbridled fibrofuckingmyalgia. Taking Vicodin on a schedule that would impress the train guy with the watch. Hey, it's almost 1 AM here, that's about the crux of my creativity. I'm getting all the pain, all the swelling, all the fatigue, all the bullshit, all the disappointment. I'm also incredibly emotional. If you say something nice to me, I might cry.

In the last post, I shared some photos of my swollen calves and mentioned that my feet and ankles were small because I'd just taken off my boots. Well, I took a couple photos the other day. This is what my ankles look like about an hour after I take my boots off.

This is the infamous Flipper Foot. I could propel myself through the water with the grace of a dolphin with this goddamn thing.

And this is the Not-Flipper Foot. It isn't as swollen as the other one. Not sure why, because they have the exact same type of swelling.

So, now we wait... we wait for the new drug to come in the mail. We wait for the B-12 and folic acid to start doing whatever it is they're supposed to do. And then we wait to see if the new drug is going to help me or push me a little toward the Dolphin Transformation. If I suddenly start balancing a ball on my nose, I will definitely take a photo of that for you.

Would we like to end on a high note? Because I can totally do that right now. On Sunday (September 14th), I accepted my friend's offer to step outside my comfort zone and photograph her daughter's wedding. I spent the afternoon taking my usual style of photos (ninja, on the sly, trying to blend in and not be noticed even though I was the largest person there) and the usual posed photos.  And then I spent the next four days thinking I was the world's worst photographer. All I could see was things that were wrong and how I should have done them (this was the first time I've shot a wedding- which my friend knew up front, before I accepted her offer).

The families love the photos and that's all that matters (I have to ignore the naysayer that lives in my brain). The comments from both family members and people not associated with them at all make me teary-eyed.

And here are a few of those photos- Josh and Kat's Wedding, September 14, 2014 at Parkway by the Lake, Ingleside, Illinois.

There was a strict "no bride photos on Facebook" before the ceremony. But Kat got to see Josh on Facebook before the wedding.



And this is Josh seeing Kat for the first time- walking down the aisle.







Directly after the ceremony, we tried to get some posed shots on the lake. But the sun was so bright and almost directly overhead.



I created some shade, using the Promaster 5-in-1 reflector thing I have.



Without all my gear, we had to improvise. I told him that his high school counselor told him he could be anything, so he was a shade tree.



The groom (reflected in the mirror behind the ladies) took this photo with the bridesmaid's phone, so I took this shot.



We went back out a few hours later to get better posed shots with the setting sun. Kat asked Josh to carry her, so of course he did. And of course, I took a photo of it.

So, we're on a month with the new drug now...

This is going to be just a quick update. It's almost 10 PM here and I have to get up tomorrow for faire. It sounds silly because I get up at the same time every day, but on days I have to go somewhere (like faire), I don't go back to bed. I just stay awake.

So... this is a month, according to my drug-addled mathematics when I eye The Jousters calendar on my wall. And, I think it's going pretty well.

I still feel a bit woozy if I take the new pill on an empty stomach, so I usually have a granola bar or a piece of fruit when I take it in the morning on faire days. (on non-faire days, I take it when I eat breakfast). Also, at night, after I take all my nightly pain meds, I have trouble remembering what I say or do the next morning. It isn't like I'm stumbling around like some goofy amnesiac patient. I'm fine to the outside world (but not drive-able, not at all), but the next morning, I have trouble with details. People have been cool about reminding me... or they're totally fucking with me. Either way, one of us is having fun... I think. Hopefully it's me.

 I gotta say, though, I think it's working. Aside from a mild day or two, I've felt a lot better. My muscles still have that "day-old workout pain" in them, but only if I exert them (like lifting the big-ass jug of laundry detergent off that stupidly high shelf in the laundry room). I feel pretty good under normal circumstances. I notice the numbness in my foot now, though. My last three toes on my left foot are numb. But they're not totally numb, just the skin. When I wiggle my toes or touch them, I don't feel anything. But if I apply pressure, I can feel that sensation under the initial numbness. I have had a few bouts of "hot spot" pain (that's the intense pain in one location, usually my hip muscle). But hey... small price, right?

Oh, that numbness is caused by peripheral neuropathy. That's a disorder some folks get when they have fibro or some other stupid-as-fuck disease like this. Some people just get it, without that stupid-as-fuck disease... but basically, it's a nerve thing that causes numbness and pain in the hands and feet.

I've been taking a lot less Vicodin lately, which is good. But, a few days ago, I think I went through some withdrawal issues. I had a headache for two days and felt sort of blah. I also think I had a flareup because for those two days, I was brain-dead exhausted. Not sleepy... but that kick-you-in-the-face exhausted. But, since the new medicine is doing what it's supposed to, I've not had as much overall pain.

So, I guess this is "so far, so good" when it comes to the new drug. (if you don't remember, it's a low dose of Effexor. I was a bit concerned because it's an antidepressant and I'm not depressed). I am definitely enjoying the "less pain" part. Not enjoying the "slightly carsick" thing that comes along with it. But hey, that's a small price to pay. And the whole point was to take less pain medicine. I remain hopeful that it'll continue to get better.

Now, this is when I go nuts and share a shit-ton of photos from the first three weeks at Bristol. But like I said, it's almost 10 PM here and I have to go to bed soon. (Oh, that's another thing- this drug makes me sleep like a dead person. So that's a good thing). Instead of packing this post with photos, I'm just going to post the links to the albums on Flickr. This year, I decided to break down the faire photos by each week instead of getting a single album full of three thousand photos.

Oh, I just remembered... I have some non-faire photos to share. Today, I took a bunch of macro shots of bees in my back garden. So I'll throw those up for you to enjoy. After the faire photo links.

Week One

Week Two

Week Three

And here are the bumblebee shots... Enjoy.

My right foot... and some kind of angry ranting that has nothing to do with my foot.

I finally added the word "fibromyalgia" to my Google Chrome spell check because it kept coming up as a misspelled word. Then I had to add it with the "F" capitalized because that was still misspelled. I should also add "fibrofuckingmyalgia" because that's the proper way to say it. And if you don't agree, then you have never felt the full brunt of it yourself.

Onto my right foot.

A few weeks ago, I got myself a pair of shoes that are similar to the name brand... they help you "shape up" your body merely by wearing them and walking around. I figured they'd be good to build up my thigh muscles. My quadriceps are shot. My right leg is from the knee injury (the eighth or ninth in 20 years that set off this whole debacle). It never really healed properly and I spent three years unable to use it to go up and down stairs. My left one is shot because of the delay in recovering from my knee replacement that was caused by the fibrofuckingmyalgia. Basically, my thighs are weak. Which sucks because I used to have great legs. (I also used to ride a bike everywhere, back before it was all hip and cool to do it).

So, I got myself these shoes, thinking it was a great way to start building my thigh muscles. And it would have been. One day, while wearing them, I was at my parents' house. I typically stay for about an hour or two, no biggie, just visiting. The top of my right foot started to hurt. A lot. A burning, stabbing pain. I thought it was the position I was sitting in, because I was in an armchair. I normally sit in my computer chair or on our sofa. The armchair was a little higher than I'm used to. I went from their house to the grocery store. And the pain got worse and worse. When I hit the pavement outside the store, I took my shoes off. I walked back to my truck in my sock feet.

Then it kept happening, but I wasn't putting it together with the shoes. They felt fine in all other aspects. I don't know how long it took, but the skin on my foot went numb. If I run my fingers across it, I couldn't feel it. But if I pressed down, I could feel the pressure under my skin. So whatever it was, it was nerve-related and surface only. I did some Google-searching and discovered "neuropathy" and it has a connection to the fibrofuckingmyalgia. Great, I thought. Just another thing to add to the list of fucked-up things that happen with this ridiculous disease.

Last week, our weather decided it was time to throw Summer temperatures at us full blast. I went two days straight without going outside (except to take the dogs out) and I didn't put on any shoes. The pain in my foot went away. The numbness stayed, but it wasn't painful at all. And on the third day, I wore my boots. It was when I put those shoes on again that I realized that was the problem.

I have no idea why those shoes hurt that way or cause that type of numbness. My daughter can wear them and she's fine. The numbness is slowing disappearing. In that needle-y, tingling, painful, wake-up kind of way. Plus, it itches. In that numb-on-top kind of way. So now I'm back to doing deep knee bending to try and strengthen my quads and hamstrings. I look ridiculous doing them, but when do I not look ridiculous these days?

As for the fibrofuckingmyalgia, it's still doing what it does best- making me fucking miserable. The weather changes are kicking me around, like usual. The heat and humidity is doing what it can to push me to the floor and beat me with a giant wet spaghetti noodle. I end up sore, sweaty and reeking of wet noodles.

I'm still taking the muscle relaxers at night (along with the Vicodin). Every day, my muscles feel achy and tight and they downright hurt when I try to stretch. As the day goes on, my muscles feel tighter and tighter. Then about an hour after I take my muscle relaxers, they go soft for a bit. I can feel the muscle relaxers start to wear off. It's very disconcerting. And every time I see that TV ad where that chick says, "I learned we have nerves connected to our muscles..." I want to punch a baby. Really? Nerves? Wow! I took 9th grade science class too!

I have one month to get this sleep thing worked out. In one month, Bristol Ren Faire opens and I can't have nights like this on a Friday or Saturday. I have to go to faire. I refuse to miss out because my body has decided that had to have this stupid disease. Also, it pisses me off that I'm almost embarrassed to tell people about it. Like they're not going to believe me. Fibromyalgia- real disease. And if you don't think that it is a real disease, I hope you get it. Yeah, you read that right, I'm wishing someone who thinks people are faking it would get this themselves. Then we'll talk about faking things, barometric pressure, and pain medicine.