New medicine...

I got the Gabapentin in the mail today. So I'll be starting it tonight (she states, quite obviously). I sure hope it works. I'm not hating what I'm reading about it. I did a Google search for "Gabapentin for Fibromyalgia" and read some stuff from 2007 when it was declared a new medicine to help fibro pain. And this link.

The study included 150 participants, 90% of whom were women (there is a higher rate of incidence of fibromyalgia in women compared to in men). The study randomly assigned dosages of Gabapentin or placebo to participants for a 12-week period. The effectiveness of the drug was based on the following categories:

sleep
mood
life quality
fatigue
stiffness
tender point pain in the shoulders

Individuals taking daily drug dosages of 1200 to 2400 mg displayed significantly lower levels of widespread pain compared with those taking placebo, as well as improved sleep and reduced fatigue.

So, there you have it. I will definitely keep you posted. I'm supposed to start with one pill at night for a week, then go to two- one in the morning, one at night, and eventually to three a day. I hope I'm not too groggy or out of it. That's all we'd need. Me, loose on the Internet, out of my mind on pain meds.

I mean, uh... more than usual.

One of these days, I'll just sit there, jaw-droppingly stunned.

Imagine my surprise at a few things that all happened during my follow-up with my fibro doctor.

Firstly, the elevators at the VA are notoriously slow. Back in the day, I could easily go up or down two flights of stairs and still beat the elevator with plenty of time. Obviously, I'm trying to get back into shape and if I can, I will take the stairs. The rheumatology clinic is on the sixth floor. I made it to the third floor before I decided to take the elevator. (when I left, I took the stairs all the way down).

Secondly, I was called in on time. Did you read that? On TIME! You may not know this, but about six months ago, I had an appointment with my GP at the VA (ooh, look at me and the fancy lingo) where my appointment was at 330. They were, of course, running behind because apparently, I'm the only person on the planet who is ever early for an appointment. The nurses came out every half hour or so to ask if I minded waiting. I have to drive for an hour to get there, so no, I don't mind waiting. I got back on the road for home at 630 PM.

Thirdly, not only did my doctor take into account how I've been feeling on these new muscle relaxers (which are now into their sixth month, so I suppose they're not new anymore), she said she wants to offer something different because the goal is to make me feel better.

Wait, what?

Did she not only want to help me, she wants to help me get better? She wants me to end up as pain-free as possible? SHE'S HELPING ME?

While I was still reeling from the whole concept of aggressive doctoring, she proceeded to check the VA protocol to make sure her plan of action would be accepted before she tried to prescribe something for me.

Hold on... hold ON!

She's not just petting me on the head and telling me to stay the course and "see what happens"? I'm not sure I can take this... this... caring.

The "VA protocol" is a standard they have set. You can't go from A to B to E without at least trying C or D- even if you know they won't work. The VA will refuse a jump from B to E unless there's a valid reason (like Patient is allergic to C and D told her she was ugly on prom night, so we need to avoid C and D and just go straight to E).

So, we're going to discontinue the Cyclobenzaprine (muscle relaxer) and start up with Gabapentin. Its an anticonvulsant but its approved in low doses for fibro pain. And its a very low dose, so we can adjust it a lot before we can call it a fail.

Also, as if the rest of this isn't a shock to me, I lost a little more weight. Over the holidays, even. I know, I'm as stunned as you are. And as a side note- despite trying to kill myself by going up three floors via the stairs, my blood pressure was fine. I thought for sure it'd be off the charts. My heart rate was elevated, but everything else was good.

One of these days, I'll just sit there, staring at the doctor, mouth agape and in shock. I won't be able to respond.

In other news, I took several photos at the VA. The receptionist in the office I have to check in with before I go to my appointment had a white and red poinsettia plant on her desk. While she was filling out my useless red card that I had to the clinic receptionist, I took several macro shots of the plant. Here are a few...

I have a follow-up appointment on Wednesday.

I've been keeping track of how often I take a pill and a half of the muscle relaxer (which is what the good doctor has told me I can do if I feel like I need it). Its been more often than not.

I'm ever-so-tired of feeling like I've been thrown from a horse, then trampled by the Budweiser Clydesdale team on their way to a commercial shoot. I try not to complain much in real life because if I do, I'm met with either being ignored or eye-rolling. Of course, that's a lot better than what I've had to deal with since last night.

I'm not going to say which family member has said this- but I will say it was not the disabled guy. He's the one who ignores it for the most part. He also says- in response to any complaint- "I know, you tell me you feel like shit all the time. I get it."

No, this was someone else. I was lamenting that I was tired of feeling like hell. I said, "I'd like to take the dogs out or go to the store, or hell, even walk up the stairs without feeling like I'd just crossed a goddamn desert."

And you know what I mean, right? You get that I mean worn out, exhausted. In pain and drained of any kind of energy or drive. You get that. No, what I've had to hear since I made that analogy is constant mocking.

I sighed while in the kitchen. "Oh, come on. Its like standing in the desert, you're not walking across it."

I was putting on my boots to leave the house and paused because the weather came on TV. "Jeez, you're only putting your boots on in the desert, you're not walking across it."

This afternoon, after doing laundry and going to the grocery store, I started to go upstairs. I stopped at the bottom to grab hold of the railing and take a deep breath before I tackled the stairs. "You can do it! You're only walking up the stairs to the desert, not crossing it!"

Those are just the ones I can remember. There are a lot more. And I'm tired of it. And I've voiced the fact that I'm tired of it. I repeated that I said I don't want to feel as if I've walked across a desert at the end of the day.

I'm tired. Worn completely out. I used to feel like this after working all day. Working, not sitting at a desk. When I was a kid, I used to go to the horse stables on the Army base and offer to trade work for horse-riding time. I did anything- I cleaned stalls and paddocks, I painted barns, I cleaned tack, I hauled feed buckets and hay. And if a horse owner was kind enough, I got to ride. I would fall into bed at the end of the day- exhausted. But with a reason.

Here I am now, worn out and drained from doing laundry and going to the store. I don't keep track of how often I take the dogs out or how many times I go upstairs, but its more than a few.

I try not to complain too much on my Facebook profile, because I know how irritating it can be for others to constantly read whiny updates and I much prefer to be in the good graces of my friends there. As it is, they have to put up with my psychotic photography addiction, link-spamming of upcoming novels or even awesome radio shows.

Of all the people in my life though, its my online friends who care the most. Mostly, I think, because I don't see their eye-rolling and if they're taking something I said out of context and beating it to death, I'm not hearing it. Or... maybe, just maybe, they actually do care. I know I don't tell them enough, but I appreciate knowing they care.

Before I start rolling my eyes at the mushy crap I'm typing, I'm going to point out that you can Shake Hands with Danger through podcasts now. You have no excuse not to listen because you can listen any time.

The Good, the Bad, and the whiny...

Guess which one I am!

You don't have to... I'm the whiny one.

First off, the good-

A friend of mine, "Texas Scott" (his parents named him that, don't judge) has an awesome radio show on Wednesday nights. Its called "Shake Hands with Danger" and it is full of eclectic and amazing music that makes me happy. What's that got to do with fibromyalgia? Well, when I'm happy, I can forget the pain for a little while. 6 PM Central USA time, Wednesday nights.

Shake Hands with Danger on Blogspot

Shake Hands with Danger on Facebook

Shake Hands with Danger's actual link where you can listen

Also good- my dear friend from Australia, Shawn, sent a Christmas parcel. I'm currently jamming to "The Latest and Greatest" from Skyhooks and its several kinds of awesome. Also- Cadbury Snack. (there's another CD, The Very Best of Split Enz).

Aaannnnd I hurt a little less.

Secondly, there isn't any "bad" really. There's a weather change happening and that's got me aching again, so I guess that's the "bad" today.

And the whiny...

I ache today in such a way that my skin feels bruised. I had several good days in a row. No real pain to speak of, it was around a three or four on that useless pain scale. So I had hoped that today would be another one of those days. Sadly, no. My skin- that feels like its bruised- hurts with every move or turn I make. I'm dressed, only because I can't stand to not be dressed, but I'm wearing only a very soft fleece instead of a shirt. (normally, this is an item I wear over a shirt). My jeans, luckily, are just rough-ish enough to keep the skin on my legs from itching so badly I want to scream and claw at myself like a drug addict going through detox. I've already taken a Vicodin today. And we all know how I don't like to do that.

So, the cookies I wanted to bake aren't being baked today. The laundry isn't getting done very quickly. I'm sitting here, hoping the pain will stop, but I know it won't. Its so distracting today that it took me hours to edit through thirty-six photos that I took of my friend and her family yesterday. I had to do a few at a time, then stop. Then do a few more... and so on.

Today is one of those days where all I want is a hug, but I know its going to hurt if someone touches me. Of course, it isn't like I'm going to get anyone to hug me anyway, so that point is moot. So, here I sit, enjoying my Christmas presents from Shawn, hoping that the Cadbury will magically whisk the pain away and jamming to the Skyhooks. The latest and greatest, in fact.

Oh, on top of the "weather change being bad" thing, we've got heavy cloud cover because we're supposed to get a bit of snow, followed by freezing rain, followed by snow again. That means I'm going to miss out on the Winter Solstice Lunar Eclipse. The photographer in me is disappointed and the pagan that I am says "we can enjoy it anyway".

Because of Chris...

In October, one of my friends passed away. His name is Chris. He lived in England and we never met in person. But we shared many things in common and one of those things was photography. Despite being online, he liked his privacy and we never talked about being friends on the message board where we met. Our friendship was private and none of anyone else's business.

When I was recovering from my knee replacement, he sent me English Cadbury. Loads of it. I'm convinced that English and Australian Cadbury has healing powers. His parcel came while I was still in the hospital. I made the kids bring it to me.

Anyway, while I was recovering, I told him that my goal was to get well enough to go downtown and take photos of the historic area of this town, for him. He always had amazing photos of castles and other scenic places in England and from the road trips he took to other countries. The little town I live in doesn't offer much in the way of scenery and my photography is limited to the "fine art" variety, mostly in macro (closeup) and mostly nature-related.

I did go to a place in Illinois that has a castle, back in October, over my birthday weekend. Chris never got to see those photos. By the time I had them uploaded to share, he was in the hospital. He passed away a short time later.

Over the weekend, (December 11th and 12th) we had a huge storm sweep across the Midwest. It dumped a couple of feet of snow up north- even caused the roof of the Minnesota Vikings football stadium to collapse. By the time it hit us, it didn't dump a lot of snow, but it brought bitter cold and 40 MPH gusting winds. Sunday afternoon, the sun came out and right before sunset, I threw dinner in the oven and headed out to a school at the edge of town. Its on a hill and surrounded by open cornfields.

When I reached the car park of the school, it wasn't quite sunset. So I put the camera in macro mode and took some shots of the frozen branches with the orange-sunset light reflecting off the ice. When the wind would gust, I'd turn my back to it and hold my camera close to wait it out.

What's all this got to do with my friend?

Well, as I was trudging through the snow drifts to get close to the branches, trees, and formerly landscaped shrubs, I thought about him and it made me chuckle. I was standing, knee-deep, in snow drifts, with my human knee and the "cyborg" knee, contorting myself at weird angles to get the shot... and all I could think of was Chris seeing those photos and saying, "Good on ya!" or even something ridiculous involving an inside joke we had about my "Cyborg Alien overlords" and how pleased they'd be with my progress. Another thing we had in common- dry humor. Chris had the greatest sense of humor.

I know its a little silly- but along with the smile I had from the thought of my friend (who was the human liaison between the Cyborg Alien overlords), I realized that I was standing there, for over a half hour in the bitter cold, and I wasn't in any extra pain. My gloves failed massively in their job at keeping my hands warm and by the time I got back into my still-running heated truck, Raynaud's Syndrome (one of the things Chris and I had in common) was rearing its ugly head. But my fibro wasn't killing me and I felt pretty good.

And I still miss my friend.

Since I've been going on about the photos, I'm going to share them with you here...









I think this is my favorite shot from the macros-



This isn't a macro, I just stood back and zoomed in because I like how the sunlight looked on the ice.



The sunset- (I took loads more of the sunset, these are just a couple)





And to show how hard the wind was, here's a shot of the snow blowing across the road on my way to the school.

It snowed this weekend...

And it was fantastic! Beautiful, great photographic opportunities, wonderful! I was thrilled. It has even offered up a chance for me to do an updated version of my yearly "idiot drivers in the snow" rant on my other blog.

Except that since Friday (as I type this, its Sunday), my hands have ached. Ached is the general way to describe it, but along with the literal all-over ache, I've had sharp stabbing pains in various places. My right wrist is where a burning, gravelly pain is radiating from most of the time. I wear a brace at night, every night, on that wrist. The pain alternately shoots down my fingers and from that little jolt, my finger joints feel like they're burning for long moments after.

The general ache feels as if my hands were rapped soundly with a large hammer. No real pain in the sense I can't do anything, but so achy that I can't rub my hands to make them feel better (like it does when I have an arthritis flare-up). I grasp one hand with the other and it just causes more pain. The ache is like a large bruise.

That seems to be the overall "normal" thing to this fibro pain. Everything aches. Like a bruise. Like I've fallen off the horse. Been soundly rapped with a hammer.

I don't remember if I mentioned it (and I'm not going to check now), but I started doing a self-portrait project in February. 365 Days of self-portraits. I'm up to day 295 today. I haven't missed one yet. I didn't think I'd keep going this long, but hey, here I am. Today's attempt was to hold out my hand and try to get a shot of a water droplet landing in my palm. After about ten minutes of standing outside (in the 23° Fahrenheit cold), my hand was soaked, I'd taken maybe thirty shots and didn't get a single keeper. I dried off my hand on my wool peacoat and tried to come up with something else.

I figured since my hand was already cold, I'd just stick it into the snow and get a photo of it covered in snow. I took three shots before I realized I needed to change my camera setting, then had to dip my hand in the snow again. By then, my hand was numb. It was so cold that I lost feeling. I chuckled to myself over that, because it took the snow to take the pain out of my hand. I stopped chuckling the instant I tried to move my fingers. They had stiffened so much I couldn't bend them. I grew up in Alaska, I know what to do if this happens (which usually is by accident, not for a photographic opportunity). I ran cool water over my hand till I could move it.

What followed was that hot-skin pain for a long time. I don't know how long that lasted because I didn't time it. Now my skin is a bit sore (its been hours now) but my hand no longer hurts. My right hand still does. The right one still has that all-over hammered ache.

I'm tempted to stick my hand in the snow again when I go outside with the dogs this evening.

Oh, and for your enjoyment, the photos I got today.

Day 295 of 365.


Water droplets (after these shots, I tried to catch them).









I'd say the pain and cold were worth it. Just like the other day when I sprawled out, face-down on my deck, to get the other photos.

Sometimes, I do things to myself.

Each month, I have to call an automated phone number, punch in some numbers, punch in my RX#, and I hear one of three things:

1. That prescription is [robot voice]REFILLABLE[/robot voice]. Please allow ten days for delivery.

2. That prescription has [robot voice]EXPIRED[/robot voice]. Press One to request a new order.

3. That prescription is due to be refilled on [robot voice recites date]. Please allow ten days for delivery.

I called in my monthly Vicodin refill and I heard option one.

Ten days comes and goes, but hey, that's okay. I always call two weeks in advance. Then I'm down to three days of Vicodin. So, I cut my dose back by a half-pill (I take two pills at night). Then... Sunday... I ran out. I waited till Tuesday to call the VA because I was hoping it would come in the mail Monday. The VA automated system didn't record my refill request. So, now I'm stuck waiting till next week for my refill of pain meds.

Luckily, the muscle relaxers I'm on keep me from totally tweaking out with withdrawal symptoms.

Today, I had a great idea for some photos. I've done similar photos that I call "Beautifully Broken" where I lay face-down on my deck and take macro shots of flower blooms. And they usually look fantastic. (today was no different, my end result was fantastic). But, It was snowing today. Not much, a lot of little flakes, but they were mostly blowing around in the wind. And it was about 23 degrees Fahrenheit out. I don't know what the wind chill was, but it was windy too.

I was laying on my belly on the damp deck (I swept it clear of snow), wearing three layers (shirt, hoodie, jacket) and taking my photos. When my fingers were so cold I could barely stand it, I decided to go in. (according to my Facebook status, I'd been outside around twenty minutes). I had to roll to my back, sit up, hold onto the deck railing and then stand up. Easier said than done. The damp cold seeped into my muscles and caused them to stiffen.

I finally got to my feet and picked up my supplies (the flowers, the camera, the broom) and then I couldn't go up the steps. I ended up having to slide the flowers (they were in a plastic tray) with the broom along the upper deck. I put the camera in my pocket and then used both hands to pull myself up the steps.

In the time it took me to get inside and update my Facebook status, my muscles were so stiff that I couldn't turn my head. I don't know which friend used it first, but its called "Batman neck".

And no Vicodin.

I took a muscle relaxer at six PM (Vicodin time). It didn't do much for the muscle tightness or the pain. (well, duh, it isn't a pain reliever). Three hours had passed since I came back inside. At 730 PM, I took another. And finally, at 830, I felt some relief.

This pain I'm in... I did it to myself. But the end result was worth it. ~Clicky-click~ Today's work starts near the bottom, the roses. Those aren't the only photos from today, but they're the only ones I'm making visible for now.