Monday, September 22, 2014

Death would hurt less...

I was going to put off writing this post till I had my Flickr photos up to date with the macros I've been doing since faire season is on its month-long hiatus (Closing Day at Bristol- Labor Day Monday. Next faire- Stronghold Olde English Faire, October 4th and 5th, then A Gathering of Rogues & Ruffians on the 11th and 12th. AND THEN Teslacon on November 7th, 8th, and 9th). I did a bunch of really cool shots of raindrops on maple leaves. The underside of the leaves cause an awesome beaded water effect, so I've been going understandably nuts with the macro lens.

However, with the final weekend photos and the wedding photos, I haven't been uploading macros to Flickr on a regular basis. I just checked and I have around 80 photos from September alone to upload. And honestly, I don't have the mental enthusiasm to upload 80 photos and caption and tag each one. Not today.

Not only am I stuck without fibro treatment- beyond the Vicodin and Cyclobenzaprine I've been taking for years- I also ran out of my hydrochlorothiazide (spelled that from memory!). I was out of refills and instead of calling in the automated thing, I just waited till my doctor appointment that same week and had them renew everything that needed renewing... except that I ran out before the refill came. So not only was I swollen as a reaction to the generic Effexor, I've been having the swelling associated with not having my much-needed water pills. (they should arrive tomorrow or the next day, according to the automated checkup I did today).

I feel like I'm being smothered in pain. My clothes fit weird because I'm swollen sort of all over, but not in a proportional way. I'm cramming swollen, flipper feet into shoes because it hurts more to go without shoes (and by "shoes" I mean super-comfy hiking boots). I've been wearing my largest, softest shirts and believe it or not, I only have a few days' worth.

Death would hurt less. I'm in hell. I started crying and I couldn't figure it out, till I realized I've been randomly crying from the pain. When I sit absolutely still, I have pain, but it feels more like a dull burning feeling in my muscles. Like I've overexerted my muscles and now my body has too much lactic acid in it. And sometimes my skin itches... sometimes it aches. And if I move, that dull burning ache turns into a searing, stabbing agony. Lifting a 20 ounce bottle of water hurts. Having a four-pound Chihuahua step on my leg in an effort to get over me to the cushion on the back of the sofa is like being stabbed with a dull, hot piece of metal. And that pain lingers. All that plus my wrists alternately or simultaneously feel like I've sprained them. I can't put any weight on my hands when I get out of this chair. You know, this office chair with arms on it so I can use them to get up easier than just sliding out of the chair and crumbling into a heap on the floor.

On top of that general feeling of "Living Hell", after I've sat still for a while and go to move, I sometimes have to actually move my legs with my hands so I can get up. My burning, aching muscles tend to stiffen up while I'm sitting still. Right now, in my office chair, my legs are going to scream like a heavy metal symphony when I decide to stand up. I'm also back to waking up every hour-ish at night. So, no sleep exacerbates the pain, the pain makes it so I can't sleep, so the lack of sleep exacerbates the pain, and then I can't fall into a deep enough sleep, and I spend my days in more pain because I'm not sleeping well, and when I do go to bed, I don't get restorative sleep, so I'm in more pain during the day.


Who the hell is Jane in this story? My doctor's name isn't Jane. (actually, her first name is Jennifer and I think she's the same age as my oldest kid).

The Disabled Guy is sick and tired (ha!) of hearing me bitch about it. I can't help it, though. I get up and somehow I'm supposed to function like a normal person. I put my clothes on and an hour later they're so uncomfortable that I have to change into my giant yoga pants... or get naked under fleece blankets. But you can't go to the store or post office wearing only two fleece blankets. And driving while on this much pain medication is probably not good either.

Now, I've had a few people ask me why I don't use compression stockings for the swelling. Because obviously, in the last nine years, I haven't tried EVERYTHING. I have doctor prescribed, fitted to my size compression stockings. And all they do is push the swelling up to above my knee and leave deep red marks on the backs of my knees. Oh, and since I had the total knee replacement five years ago, that super-tight compression stocking seam that lays across the bottom of the scar feels SO DELIGHTFUL!

Well... I took some photos. I wore my compression stockings for four hours the other day. And I took some photos... (with my phone, because I can't carry my camera and use both hands to drag myself up the stairs).

Here's my leg in one of the stockings (after about four hours). Yes, my leg is swollen above the stocking and my knee no longer has knee-like definition.

Oh, and guess what... my calf and foot still swelled up under that compression stocking. That line on my ankle is where the stocking cut into my swollen skin because I was standing/sitting with my foot at the normal angle that all humans (except ballerinas) stand.

Here's another shot- with more of my calf visible.

Nice, huh? And these were prescribed by a doctor. They measured my legs and everything.

Here's the other leg (the one that was photographed still in the stocking). Oh, and by the way, taking these stockings off was an experience in torture. As I rolled them down, it felt like I was scraping the skin off my bone with a dull Ulu knife.

One more shot... you can kinda see the line left at the top of my calf. Behind the knee, it was red and irritated.

And now you know why I don't wear skirts that show my legs. People say: "Oh, it doesn't matter! Nobody would notice!" I beg to differ, Sparky. Giant elephant legs attached to flipper feet with a huge scar down one knee... that's kind of obvious and difficult to ignore.

The first person who tells me that fibro isn't a real disease is going to get kicked in the crotch with a flipper foot. Think about it- the flipper foot is wider and bulkier than a normal foot. It will cover more ground (so to speak). Hippos are the deadliest animal... imagine a hippo with the ability to kill on land. Yeah... I might take a while to catch up to you, but I'm stubborn and you'll get tired.

I'm going to end this with the song that I've had stuck in my head all day.

Friday, September 19, 2014

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.

Josh and Kat's Wedding, 9/14/2014

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

Josh seeing Kat for the first time

Josh and Kat's Wedding, 9/14/2014

Josh and Kat's Wedding, 9/14/2014

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

Josh and Kat's Wedding, 9/14/2014

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

Josh and Kat's Wedding, 9/14/2014

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.

Josh and Kat's Wedding, 9/14/2014

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

Josh and Kat's Wedding, 9/14/2014

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.

Josh and Kat's Wedding, 9/14/2014

Josh and Kat's Wedding, 9/14/2014

Josh and Kat's Wedding, 9/14/2014

Josh and Kat's Wedding, 9/14/2014

Josh and Kat's Wedding, 9/14/2014

Josh and Kat's Wedding, 9/14/2014

Thursday, September 11, 2014

Well... I've had worse and managed to live through it...

As optimistic as my few posts about the new drug were, it seems we were premature in any happy-dancing or whoo-hooing we were doing. Bristol ended about two weeks ago, and I thought things were going okay. I was trying to ignore everything that had gone wrong.

The pain came back (but not as intensely as before).

My left foot with that whole swollen flipper thing (well, that MUST be from all the walking at faire, right?)

Flareups started happening on a regular basis. (well, dammit, the weather is changing, right?)


So yeah, turns out that the Effexor wasn't working for me. I mean, at first it was amazing, but the longer it went on, the worse things got. I had my followup appointment today and not only was I swollen, the scale said I haven't lost any weight from faire. And that's ridiculous because I lose weight EVERY season at Bristol. My jeans were loose to the point of being able to pull them down without unbuttoning them. Well, till a few weeks ago, when the swelling took up a lease and rented space in my legs.

I was trying to ignore the pain, too. But it came back. It seemed more like it was localized in my larger muscles and of course, my hands. The swelling didn't help any of this at all.

What kind of swelling am I talking about? Well, I took photos. Let's take a look, shall we?

I took these photos on Monday (September 8th) in the evening.

Well, that looks awful. My ankles and feet are so small because I had just taken off my hiking boots. I figured they looked worse against the bed like that, so I took two shots from a different position, with my leg in the air.

So, yeah... I should have taken some photos of the flipper-foot. That thing is freaky.

The doctor told me to stop taking the Effexor (and don't worry about that- there are people who take it and have to wean off it. My dose was so low that it shouldn't matter). They're going to try me on the generic form of Cymbalta. The good news is that if the Cymbalta doesn't work, they'll HAVE to put me on Lyrica. And then I can become that annoying chick in the commercials, griping about the "all over pain" and how our "nerves transmit pain signals to our brains" because even though I failed 10th grade biology, I still knew that without the commercial's help.

As for the numbness and pain in my foot- they're going to run some blood tests and if my blood says I need it, I'll start a B-12 supplement. You see, I have three strikes against me for the neuropathy thing.  One- the fibro. That's a huge thing that can cause neuropathy. Two- my thyroid disorder. That's another thing that can trigger a severe neuropathy thing. And my blood work today showed that my thyroid had gone wonky again. And three- having a knee replacement. While the knee replacement is the best thing ever, it also has some pains in the ass to it as well. Well, not actual ass-pain. But you know what a pain in the ass having a numb foot and toes can be. If you don't, you should totally try it out! (no, don't. It isn't as much fun as the brochure led me to believe).

So, we have to tweak an existing drug (the thyroid pill- I've been on it since I was 18 and have had the dose fiddled with here and there), change up the other drug (Effexor to Cymbalta), and then check all the blood again in "about six weeks". The date I have to go in for the lab work is on the first day of Teslacon (because I'll be in town anyway). I sure hope everyone at the VA hospital that day likes the Steampunk outfit I'll be wearing.

And now- let's talk about the faire... because I like to end on a high note.

Overall, this season was much better, pain-wise. I also had my usual amount of fun and I loved nearly every minute of faire. I had mostly good days, related to fibro pain, but my foot/feet caused all sorts of issues. It was worth it, though. Because I'd rather be at Bristol in pain than at home (in pain or otherwise). It happened too fast and it felt like it had just started when we were on closing day. I won't get to see most of my faire family again till next year. But, luckily, I can see a lot of them in a few weeks at Stronghold and then again at A Gathering of Rogues & Ruffians a week after. Then, a whole mess o' them are going to be at Teslacon. And as we know, the only reason I started going to Teslacon was because of my people.

~Here's the link to my 2014 Bristol photo albums~

And, here are the 365s I did at faire this year. (if you want the whole story, you'll have to click on the photo to read it). When I look back at these photos, all I can see is a puffy and pained person standing next to a bunch of cool people who do a lot harder work than I could even imagine.

They do all the hard stuff and I show up and take pretty pictures of it.

Me and Sir Mauldron (real name- Steve)- using the remote trigger, Christine as my human tripod.

143 of 365 part 5: Sir Mauldron!

Me with the Baby Dragon fairy as a human. (real name- Savannah; she gave me a signed photo of Steam Powered Giraffe).

149 of 365 part 5: Savantastikal!

Me with "Squire Archer" (one of the dragon's younger brothers, real name- Colton). Big shock, I was talking when I took this shot.

157 of 365 part 5: Squire Archer!

Me and Todd!

163 of 365 part 5- Hot Toddy!

Me with the Storm fairy named Epona. (real name- Tess. She was my favorite with the baby dragon). Because of her, I kept extra treats in my basket.

164 of 365 part 5: Do you see that?

Me with Christine's boyfriend, Casey, on his second day at Bristol.

170 of 365 part 5: This is Casey

And this is Loki! (we love Loki- real name is Vince). I had the great idea to make the tall person hold my camera while I used the remote trigger.

171 of 365 part 5: Loki!

This is Jeff! Usually he's wearing historically-accurate clothing (he's with the Guild of St Michael- the historical reenactors at Bristol), but he took a patron day and attended the faire with his family.

177 of 365 part 5: JEFF!

Don Vincenzo (real name- Vince) and I are photobombed by Todd.

178 of 365 part 5: Don Vincenzo di Sicilia! And Todd!

Me, the Italian, and Edgeron's giant pickle (yes, we know it's a zucchini)

185 of 365 part 5: The Pickle doesn't far from the Tree

Me with Joseph at the end of a particularly exhausting day. We sat in the dais after the last joust and chatted about life, the universe, and everything for about twenty minutes.

191 of 365 part 5: The end of an exhausting day...

A slightly blurry photo of me with Sir Maxx (real name- Matthew; who happens to be the father of the baby dragon and the squire, pictured above).

192 of 365 part 5: Sir Maxx!

Me with Edgeron. I don't cheer for Edgeron. Ever. But the guy named Jack who plays him, he's pretty cool. (compare this photo with this one from three years ago!)

198 of 365 part 5- Edgeron has cooties

And me with Mauldron again. Except he's in regular clothes. He was injured after being unhorsed the previous week, so he was not jousting as a precaution (he's fine though! Just a little banged up).

199 of 365 part 5: Look who stood next to me for two jousts!