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...

Oh, Hey there, Middle of the Night, I haven't seen you for a couple weeks...

I don't even know, man... failed pain meds? Too much caffeine? Buyer's remorse? Scurvy?

I have no idea what's going on, let's just call it "Fucking Fibro Failures" because who doesn't love alliteration and swearing?

So, I'm up in the middle of the night again. I've been on the new fibro drug for six days. So far, I've experienced one of the mild and non-threatening side effects. I have random bouts of mild dizziness, but not like "OH THE ROOM IS SPINNING!" dizzy. More like: "whoa... my brain is floating in fluid and when I turned my head too quickly, it took a moment for my brain to join us over here..." So, not debilitating, just annoying.

No change in the pain.

No change in the sleep-falling-into-and-staying-occupied-with thing.

No change in the goddamn itching skin. I'm just about ready to claw my way out of this skin because fuck that noise.

And speaking of noise- fuck all the noise. When I wear my hearing aid (I don't wear it around the house, but I do when I go out), I get sensory overload at places like the grocery store. I want to shove everyone around and tell them to "Shut the fuck up, asshole!" but I don't because I'm an adult now and apparently adults are supposed to have some kind of self-control when it comes to societal situations. And shouting "SHUT THE FUCK UP, ASSHOLE" isn't very "mature".

Every pair of shoes I have hurts me. And I love my shoes because all of my shoes are Dr Martens boots. What's not to love? And the worst part is I can't go shoeless, or, you know, as the normals call it: "barefoot". Going shoe-free causes a slew of pain issues that is very easily fixed by not being shoe-free, so I wear the shoes every day... even if I'm just staying home. Which is most of the time, except during faires.

Speaking of faires, I have a ren faire this weekend and I went from being "just a patron" to doing some photography stuffs for the Bristol cast that is in attendance. So I got that going for me this week. And next week, I have another faire with my sea captains and a slew of other Bristolites... Bristolians? They know who they are.

And speaking of photography, remember how I bitched about not being inclined to upload my photos to Flickr to share them? Well, I finally did... and because I was so goddamn lazy, I also added them to an album for ease of sharing. Just for you! I hope you appreciate it because making a new album took absolutely NO effort on my part.

And like any fibro blog without a point, I will finish with showing you some photos. All shot with my Nikon D5100 and 40mm Macro lens.

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.