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?)

THE PAIN CAME BACK. I STARTED SWELLING EVERY DAY.

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.



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



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



Me and Todd!



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.



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



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.



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.



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



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



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.



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).



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!)



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).

I can't let this disease win...

Firstly, let me say that the new drug still seems to be working well. I've had a few rough days now and then, but those days were also pretty bad weather days (high humidity, thunderstorms rolling through, and in one case, we were actually being rained on at faire). That said... let's go to the title.

Last Sunday, I was in a full-blown flareup. Every muscle ached, moving caused me great pain, and walking up and down the hill at Bristol was damn near impossible. Damn near. Every weekend this season, my left foot swells up along the bottom (the outside edge down to and including the heel). I've tried all manner of insoles (I have doctor-given orthodics and for some reason, they're causing bruises on the arches of my feet and I've had them for five years now). I've been doing one day with shoe inserts and the second day with only the soft double-foam inserts.

Now, I try to do things during flareups. Nothing serious- I'm not going to mow the lawn or participate in a power-lifting competition- but you know, just stuff. Mostly it's photography stuff- like taking macro shots of flowers and raindrops or even going to faire.  There is no way I will let this disease keep me from a faire day. I get asked by folks now and then why I do it. Why do I cause further pain to myself? (it's usually said in a "you're so strong" capacity, not in a "what the fuck is wrong with you, lady" way).

If I don't get up, if I don't go to faire, if I don't take my photos, or put on garb, or do any one of the things I do during a flareup, then the fibro wins. And I don't want the fibro to win. Fibro sucks sweaty donkey balls and I can't let something that sucks sweaty donkey balls have what little joy I find in life.

And honestly, take a look at these photos and tell me- why do I do what I do? Because I fucking love to do it. I love these people and I love what they do and I want to be a part of their world. And they care, because they're awesome people. Getting through a flareup, surrounded by people who actually care and who also make you forget how stupid this disease is for even a minute- well, goddammit, they're worth it. They make the pain I'm in at the end of the day worth it. I want to be with these people, I want to share their amazing talents with the world, and I want to be needed.

However...

There are plenty of photographers at the faire- official and unofficial. The faire doesn't need me to take these photos and hell, even if I didn't show up, the faire would go on and these moments would still happen. But if I sit here at home, whining and lamenting how much pain I'm in, instead of walking around the faire and capturing moments, well, that might as well be the end of me. I don't want to give up. I may end up in pain, I may cause myself extra pain, and my left foot might look like a flipper for three straight days... but goddammit, I am not letting this stupid disease take one more thing from me. It has taken enough! NOT ANY MORE! (that's a silly joke with my kids- "not any more").

And, with that I say good night and I'll see you at faire. Enjoy the tsunami of ren faire photos.