Tuesday, October 28, 2014

And now we're going back...

Back to the muscle relaxers and hydrocodone cocktail.

I didn't call the doctor after my last blog post. I waited a week. Just in case... I wanted to give the new dose time. Well, I called yesterday. She called me back today. And for now, we're going back to the Flexeril (cyclobenzaprine) and Vicodin (hydrocodone) that I've been taking.

Now, if we recall, I was on Gabapentin for a while and it made me swell. Then we went back to the muscle relaxers and those worked till last Spring when they stopped working. Speaking of swelling... after the swelling from the Venlafaxine went away, I went down a jeans size. So, hopefully, these will work for me while we wait on the request for Cymbalta. (I just saw my friend roll his eyes again- and I'll see it in person when I see him next week)

I'm all for it, if it will get me through Teslacon. That's in a week and two days. And goddammit, I want to have fun. (who am I kidding? I'm going to have fun even if I'm in pain because TESLACON!).

I've had a couple more late nights since that last blog post (last night was one of them) and my pain has been off the charts on a few days. (more than a few, most. Most days I feel like hammered shit). Today, most of the pain is focused in my hands and wrists. And one shoulder, because fuck being able to use my arms. (I still have to finish up some costume stuff for Christine and Casey for Teslacon). In fact, typing is killing my right hand/wrist right now.

So, to wrap up this short update... here are some photos from my Instagram. Yeah, I have one of those too.

A photo posted by Patty (@pahz_on_instagram) on




A photo posted by Patty (@pahz_on_instagram) on





Monday, October 20, 2014

Here we are... middle of the night again...

So, I'm taking 20 mgs of this Amitriptyline crap. Yes, it's crap. It isn't helping. It does nothing for the pain and it absolutely does nothing for the sleep. I am wide-the-fuck-awake right now. I haven't slept good in weeks. As I increased the dose of this medicine, I had to decrease the dose of muscle relaxers because I'm apparently not supposed to take them together. So, I'm on this useless-as-Tic-Tacs shit medication and NOT on the muscle relaxers. Granted, the muscle relaxers weren't doing a great job anymore (judging by my posts in the early Spring through the start of Summer), but when I took them, THEY RELAXED MY MUSCLES. Not always perfectly, but now that I'm not on them, I can feel every goddamned twinge in my muscles. Every ache. Every pull. Every single muscular movement that could turn into a motherfucking Charlie Horse.

You ever have a Charlie Horse? You know that sudden, stabbing, searing, agonizing, pull-the-muscle-from-the-bone-like-a-tender-turkey-slow-roasted-in-Aunt-Sandy's-oven pain... Now imagine having one of those in your goddamn arm. Or back. Or even your abdominal muscles. How about a slow pulling pain? Like if you took a rubber band and pulled it slowly, slowly, slowly till it was at the limit of its flexibility... now pretend that rubber band is your goddamn muscle. Yeah. Sucks, don't it?

This is my third middle-of-the-night episode in about two weeks' time. And these are getting less fun as they go along. I suppose the good thing I can say is that I'm not swollen anymore. I mean, when I do swell, it's the "normal" amount. Meaning that I do still have the same "unexplained" edema I've always had, but I no longer have that all-over body swelling that always left me with flippers instead of feet. At the end of the day, my feet look normal.

Let me tell you something rather ridiculous... I was actually sick with something that had NOTHING to do with fibro! The weekend of October 11th and 12th was A Gathering of Rogues & Ruffians, my last ren faire for the season. (I still have Teslacon, but that's not a ren faire). On Saturday, before we left, I became rather unwell. I spent approximately forty minutes in and out of the bathroom, never straying too far from a receptacle, lest my body purge the contents of the last six months.

But, I soldiered on, because, goddammit, I'd rather be miserable at the faire than be miserable at home. Around 1 PM, it became obvious that what I had was a case of food poisoning and I had to leave the faire. I haven't left a faire early since 2009, when I left the Janesville Faire after my shift at the new age shop ended (I did tarot card readings at a new age shop's tent there). That was less than two months after my knee replacement surgery. So, now I've left GRR to go home. I took a wee bit of a nap (about an hour and a half, broken into twenty minute increments, because why the fuck not?) and while I was awake and laying in bed trying not to die, I felt relieved. I was relieved to feel something in my body that was NOT fibro. Food poisoning pain is a totally different kind of pain than that of fibro. Around 7 PM that day, I felt a wave of relief. I could feel the effects of the food poisoning wearing off. I ate soup!

Long story short- I made it through all day Sunday at the faire, but mostly because I didn't eat anything and I drank water and Sprite.

That leaves us up to date on the goings on in my life. Fibro still fucking sucks. Food poisoning doesn't give a damn if you have fibro or any kind of obligation. This medication doesn't work for shit and I feel terrible all the goddamn time now. And yes, there are photos of A Gathering of Rogues and Ruffians... because even when I'm sick as hell, I will do the job I'm expected to do.

So, I'm going to call the doctor tomorrow, tell her how terrible life is, beg for a change, and get through the next two weeks and go to Teslacon because TESLACON! While I'm doing that, enjoy this selection of photos from the 2014 Gathering of Rogues and Ruffians.

Fire-breathing!

Thee Bluebeard

A Gathering of Rogues & Ruffians- Sunday

Andrew!

Eric!

Signpost...

Odorferious Thunderbottom!

St Martin's Academy and GSM-Bristol put on a weapons demonstration

Music and belly dancing

St Martin's Academy and GSM-Bristol put on a weapons demonstration

St Martin's Academy and GSM-Bristol put on a weapons demonstration

To the Point!

To the Point!

To the Point!

To the Point!

Miles and Frobisher gawk at O'Malley

Anne-Drew and Hawkyns go for a ride

A Gathering of Rogues & Ruffians- Sunday

A Gathering of Rogues & Ruffians- Sunday

A Gathering of Rogues & Ruffians- Sunday

A Gathering of Rogues & Ruffians- Sunday

A Gathering of Rogues & Ruffians- Sunday

Thee Bluebeard and Captain Hawkyns...

Friday, October 10, 2014

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.

GSM-Bristol





























Then they had some fun.

"Over the edge!" - an officer giving orders

"Not the face! I'm not supposed to get sword in my eye!"

Michael fights with vigor!

In the nook...

Queen's Court




















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?

Guilde of St George- Queen's Court

Guilde of St George- Queen's Court




















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).

Guilde of St George- Queen's Court




















Carlo Tuzzio and Caesar

Carlo Tuzzio and Caesar




















Tabitha! As a patron!

Captain Grace O'Malley!

Stronghold Olde English Faire- Saturday

Demonstration for the Queen

Chris and Katie

Jeff!

John telling stories for Cutlass Cooking

Cutlass Cooking

Cutlass Cooking

Oar Envy!

John and David

(117)

Sir Francis Drake

Horse and Falcon demonstration for the Queen

Horse and Falcon demonstration for the Queen

"I quite like this. I should get one for every gown."

Craig Hendee and Alvin

Loxen Bagel and Odorferious Thunderbottom

This is a photo of JUST the nobility and their "staff"... this doesn't include the GSM (military) or any of the stage acts.

Guilde of St George 2014

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).

234 of 365 part 5: The end of Stronghold Olde English Faire

And for fun- my Steampunk Wonder Woman outfit that all started with a hat...

Alternate day 232 of year 5