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.

JANE!! STOP THIS CRAZY THING!!

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.

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.