Monday, April 23, 2012

Hur-hur-hur... she said "stiff"...

I'm very lucky.

Believe it or not.

I'm lucky that I don't suffer from depression related to my fibro. I don't actually suffer from depression at all. And quite obviously, I use humor to cope with a lot of things. That may be why a lot of the drugs that work for other people don't work for me- because sometimes they prescribe mild anti-depressants for fibro pain.

And, with my experience in "Let's use drugs on people who don't have the problem the drug treats", I'm glad that all I can say happened was some extra edema.  (for those who don't know, my "let's use drugs..." experience is from the Disabled Guy. His stroke was a result of a blood clotting disorder he acquired during his time in the Army- specifically his time during Operation Desert Storm wherein he took a pill every single day that was never approved for use on healthy people. It was called the "PB pill" and at the moment, I can't think of the name of the disorder it treated. But that, combined with several other drug/chemical things was a cocktail of "Fuck you, Soldier" for a lot of troops over there).

So, at least my brain isn't screwing with me. Sure, I do get sad. I get sad when I think about how my mom is gone- but I try not to think of her that way. I try to remember the good stuff because she'd be a-mockin' me if she knew I was wallowing in the other. That sounds mean, but you'd have to know us.

Right now, I'm focusing on being stiff- hence the title. I'm not really focusing on it, but its something I've been paying attention to lately. As long as I'm sitting in my computer chair, it isn't much of an issue. But if I sit in a soft and comfy chair or on the sofa for an extended period- that is to say, more than ten minutes- I can barely move when I go to get up. Not only do all my muscles just tighten up, gravity increases and forces me to fight to regain vertical positioning. (oh hey, I said "positioning" too; of course you knew that, Gutter brain).

Normally, I only bitch when I have a flareup. Because flareups suck and can last for days. But I'm having this muscle stiffness (hur-hur) even when I'm not having a flareup. I don't know why sitting upright in my computer chair is so different than sitting upright in a regular chair, but it is. I do have some stiff muscles in my computer chair, but I also have the arms of the chair for support when I go to stand up.

I've tried things, like before I go to get up, flexing my muscles a little at a time, to sort of trick myself into believing I wasn't stiff (hur!). It is at its worst in the morning. That's right, I have morning stiffness. This morning (that would be Monday, April 23 to all you slackers who aren't reading this the very moment I post it), I woke up and then just laid there for ten minutes. I started at my feet and worked my way up to my neck. And it didn't really help. And gravity was such a bitch, too.

The thing I miss so far about what fibrofuckingmyalgia has taken from me is my usual morning self. I used to be the morning person. My feet hit the floor and I was ON! It didn't matter what time of the day it was that I awoke. Even when I worked nights, I was still cheerful in the afternoon when I woke up. Now I'm one of those eye-rolling, growling, get-out-of-the-way-my-caffeine-is-in-there-I-will-kill-you people.

But, this week hasn't been all bad. And if you're on my Facebook, you know why.

What is it?

HAT! Of course!

I got my ren faire hat. This was a Mother's Day gift to myself. Custom made to my giant head measurements. Part of the "giant head" thing is because of all this hair. Here is the shop where I ordered it: Pixie Stixx on Etsy But I digress and I have photos.

A hat of this awesomeness can only be worn at a jaunty and saucy angle.

I got two hat pins- a yellow and black one for Sir Maxmillian.- no more Sad Sir Maxx during the parade.

And a red and black one for Sir Mauldron!

I asked on my Facebook status if wearing both feathers together would be overkill... ostentatious... obnoxious. Turns out, it is none of those things. No, no... two feathers in a hat like this- IS FABULOUS!

Wednesday, April 18, 2012

I'm ashamed of this...

I try to be all empowering about things. "Fuck yeah! I got fibrofuckingmyalgia!" because I'm relieved that after five long years of suffering through this bullshit, I got a diagnosis. We're closing in on Year Two of "Official Diagnosis Day" and I'm just going to admit it.

I'm embarrassed to say to people that I have this disease. I always feel like I have to say something to explain it or to justify that this disease, disorder, syndrome, whatever the hell they're calling it now- that it is indeed very real. I started having symptoms in my mid-30s and by my late-30s, the signs were undeniable to warrant that diagnosis.

But in that time, I'd gone through so much testing. I'd been told so many times that it isn't this and it isn't that. And I had that one terrible doctor who told me outright: "It isn't fibro, just forget about that..." So I did.

That day- when my GP said she'd refer me to a rheumatologist- I was so happy. I couldn't believe how easy it was- but wait. It wasn't easy. For two years leading up to that day, I kept track of symptoms. I made notes, I had those notes in literal scraps of paper, some in texts I sent to my email, some in Word files. I'd have a Post-it note with: "pain in right hip- 9" with the date. I arranged them all by date, printed them up. I searched online for symptoms and possible symptoms. I was thorough because I wanted to make sure that this doctor- who was new to me that day- understood that I wasn't making this up. I had a list of those symptoms, with the website urls on the page, and I wrote down the frequency/intensity of which I had that particular symptom.

She looked at my list, my three or four pages of information, and said she'd refer me to the rheumatology clinic. She asked if she could keep the printed pages for my records...  And that was that.

And here we are, two years later. And I still feel shame about stating: "I have a very real, debilitating disease" because I feel that people are still judging me. I blame that doctor I had- the bad one who said I didn't have it or rheumatoid arthritis (in case you didn't read that blog, he said he tested me for it, but he was telling me the results to a three-year-old blood test). I feel that people don't understand how I can feel good one day and then the next day I can barely move. How cold weather hurts AND hot weather hurts (it happens to be the humidity or a drastic weather change that bothers me).  How do I go all day long at the ren faire only to fold in half and not be able to sit comfortably two days later?

Well, at the ren faire, for one- I sit down a lot. A LOT. The clothing I wear- while it seems to be binding, isn't. I'm wearing skirts, which leaves the lower two-thirds of my body completely free of twisting, painful fabric. And the part that is tight, is around my upper torso- which rarely bothers me in the first place. Also, being there with my friends and other like-minded people, it feels good. I'd feel the same way if I were anywhere with a group of good friends. I might feel terrible, physically, but being with people who genuinely like and care about you makes you forget the pain. I also have Vicodin in my belt pouch, so if it gets too intense, I will take pain medicine.

This disease is fickle. This disease is unpredictable.  I don't like to be the one to complain all the time, which is why I try to keep my complaints confined to this blog. I have a few friends who genuinely care and when they ask me how I'm doing, I do tell them. But for the most part, I just say "I'm fine" or "I'm alive" and move on. Because I feel that nobody really wants to know how I really feel.

My favorite Aussie posted a link to an article that had some statistics on how fibro sufferers feel that they are perceived by other people. Even though the results show that: "66% of the people with fibromyalgia believed society views them as complainers, yet only 9% of the GP view them that way", I still feel like people don't believe me. Or worse, that I'm lazy. I know a few people in my family see it as "being lazy". That might explain why I feel that way about the general public.

I have fibrofuckingmyalgia. Having the official diagnosis is great. Having the actual disease is not. I don't wish this hell on anyone. And I hope that I'm handling my pain in an outward sense with the same strength and grace my grandma did. I still don't know how she went on every day for as long as she did.

If you know me, I try to keep things light and I use humor to cope. I prefer to do that, because if I let this get me down, I'd never get up again. So, a piece of rope walks into a bar and orders a drink. The bartender sees the rope at the bar and says: "Hey, we don't serve your kind here! Get out!" The rope goes outside and  starts twisting himself around, just twisting and turning himself over... when he's done, he musses his top a bit and walks back into the bar and orders a drink. The bartender eyes the piece of twisted rope and asks: "Hey, aren't you that same piece of rope that was in here earlier?"

The rope exclaims: "No, I'm a frayed knot!"

One of two things happened just now. You've either got an earworm of that Chumbawamba song ("when I get knocked down, I get back up again!") or you've just unfollowed this blog.


Thursday, April 12, 2012

Gravity is a harsh mistress- The Tick

The Tick- the live action version- was a fantastic show. I have it, in its entirety, on DVD. You should get it and watch it. Its priceless.

The last few days, something has finally occurred to me. And I've actually posted about this before... apparently I forgot that this is just a fact of life now.  Gravity fucking sucks. I don't know who had that great idea, but it fucking sucks. Let me explain...

The other day, I was exhausted in the middle of the afternoon. It happens. I don't like to take a late-day nap but sometimes, the body demands it. So, I went to my room, stripped off my jeans and crawled into bed. I crashed for an hour and ten minutes (I set an alarm). Then I fell back to sleep for another ten minutes. When I finally decided to get up, I felt as if I was being pulled down. All my muscles ached as if I'd been stretched, then released. I could barely stand up. I pulled on my too-big yoga pants and shuffled downstairs.

I spent the rest of the night, shuffling around like a little old man, and lamenting the kids these days. The next morning wasn't much better.

Today, I started to get tired in the middle of the day again. I had two choices- go do the dishes or go watch the shows I've had on the DVR for the last few weeks. You see, I'm a bit of a jousting nut. I know you probably don't believe me, but its true. I like jousting. There have been two TV shows in recent months. One- "Knights of Mayhem"- it was terrible. I called it "Jersey Faire". I couldn't get past three episodes. So much poorly edited, badly scripted "reality". The other one is "Full Metal Jousting". To be honest, I don't give a flying fuck who wins the show. I don't care. I just like watching the horses and the joust itself (and I swear, if I have to hear someone compliment a 12-year veteran of theatrical jousting on his lance control, I might have to punch a baby. He's good at lance control because he's been, you know, controlling lances for twelve goddamn years).

But I digress...

So, today, I chose to kill a few brain cells and see what was going on with the divas of the jousting world. I sat on the sofa, I fast-forwarded through the commercials and most of the talking (like I said, I like the actual jousting parts)... so I was sitting still for a little over an hour. I watched two episodes of the four I had on the DVR (so I'm still not caught up, but I don't care). When it came time for me to get up, I could barely lift myself up. All my muscles were stretched- or seemingly stretched.

Gravity fucking hurt. I could barely walk, much less walk up the stairs- which is where I needed to be. I dragged my feet, almost literally. I had trouble taking a regular step. I don't know how else to describe it other than to say I was being pulled to the floor by a very tenacious dwarf.

I'm still heavy feeling. My muscles are achy and they feel like they're burning. Oh, that's a familiar discussion, I know I've bitched about that before. It hurts to turn my head from side to side. But not like I have a crick in my neck, more like my shoulder and neck muscles lost a tug-of-war battle with a tenacious dwarf. A really tenacious dwarf who knows all my stress points and hits every one of them as he drags me to the floor. "You're a lousy housewife! You're husband abandoned you! Those boots you're wearing look like combat boots! Your kids' mother wears combat boots!"

The good news is that while I was still not feeling terrible- because at this point, I can't call it "feeling good"- I made chili in the crock pot, so dinner is taken care of tonight. The sink is full of dishes though. I wonder how hard it would be to train the dogs to do the dishes. And I mean do them properly, not just put them on the floor and let them lick them clean...

Wait, that does seem a little more convenient.

Oh stop groaning, I'm not going to do that.


No news? Good news? There's news?

Sadly there is nothing new to report. I've had some rough days and I've had some good days. Mostly though, I've been operating at around a five on that ridiculous pain scale. Five is tolerable, I can function without daytime pain meds at a five.

And that's kind of sad. Nobody should have to "function" with a pain level that makes most people to to the ER and re-enact the needle scene from "Pulp Fiction" in an effort to ease their pain. (Yes, I know it wasn't a pain drug, but Uma Thurman with a giant syringe in her chest was the first thing I could think of in a dramatic-needle-jammed-into-a-body scene).

Our mild winter did nothing to help me. Aside from the lack of snow and shoveling, it was quite humid and Humidity and I do not get along. She's cranky, I'm whiny. We're a terrible sitcom couple. Nobody would watch the "Pahz and Humidity Show". That's ridiculous, I don't even go by "Pahz" in real life.

I have spent a lot of time this year sewing. Sewing by hand hurts a lot, so I usually wait till the end of the day when I'm totally FUBAR on my pain meds, but it doesn't always help. Luckily, my parents kept my mom's rarely-used Kenmore sewing machine. Mom got it the year before I was born, so that makes that sewing machine almost 44 years old. The thing is- I don't sew well. Even on the machine. But, the machine is less painful and faster. And technically- that's wrong. I shouldn't be machine-sewing anything for the renaissance faire. But you know what? I'm putting it up there with my asthma inhaler. Yes, I'm a rennie. Yes, I like to look as authentic as I can. But, I'm not going to die of an asthma attack just because my emergency inhaler isn't period-correct. And if my machine-sewing a skirt is wrong, well, then I'm not as hardcore a rennie as I thought.

And you don't even care about that. You're reading about sewing skirts and garb and saying, "Blah, blah, blah, Patty! Get to the boobshelf already!" At this typing, we have thirty-six till the fabulous boobshelf is unleashed at the Janesville Renaissance Faire. Good news is that I'm working for six hours on the first day- which frees up some cash for spending on the second day.

The disabled guy is still gone on his ridiculous trip. And I'm not going to touch that topic with someone else's ten foot pole. Let's just say its been stressful for me and leave it at that.

I'm soldiering on, as usual. I have a doctor appointment in a couple weeks with my GP. My rheumatologist threw me back to the GP because my fibrofuckingmyalgia symptoms seem to be controlled by the Cyclobenzaprine. Not great, but also not terrible. And that's fine... I'd like to be pain-free, but I know that's about as likely to happen as winning the lottery. Although, I would think sleeping on a mattress stuffed with money would be quite comfortable, but who could sleep with all the maniacal giggling that would be going on?

What? You wouldn't giggle maniacally if you'd won the lottery and stuffed a mattress full of money?

Wow, what a weirdo.