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.

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.