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".
Monday, December 20, 2010
Monday, December 13, 2010
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.
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.
Sunday, December 5, 2010
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.
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.
Wednesday, December 1, 2010
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.
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.
Monday, November 22, 2010
The Ever-Changing World of Weather
Oh, how it wreaks havoc upon my body. The humidity, the heat, it makes me wish I could scrape off my skin or dig out the pain in my joints.
Let me throw this out there, before I get started and spiral into full-on rant mode. The spouse- aka the Disabled Guy- has said in the past that he thinks I'm exaggerating my pain. I am not. I'm just more vocal about my pain now that we know it has a name. I've been paying more attention to the pain, the weather, the connection between the two. I've also been more outspoken about what it does to me and how it feels. There's no reason other than to try and garner a little bit of sympathy from those around me. But it isn't working.
A lot of people are lucky, they have an amazing support network of actual living humans who are or are not related to them. They care about them, are concerned for them. I do not. My parents don't live with me, so they don't see me on those days when I'm my worst. They know about them, but they rarely see it happen. Plus my mother has her own very real and visible health problems to deal with and quite honestly, I don't need to burden her with mine.
My main source of support comes from online friends- most of whom I've never met in person- who are either suffering the same fate as I am, or they have pain issues of their own that are different. I also have some who have no major health issues, but they care about me- again, some I have met, some I have not. And while its nice to know that they're there, I don't want to spend my time whinging on to them about how much I hurt or itch or whatever this stupid thing throws at me on any given day.
And that's where the weather comes into play.
You know the incredibly annoying saying- its said no matter where you live- "If ya don't like the weather here in [insert place], just wait ten minutes! HAR HAR HAR!!"
Yes. Hilarious.
I only say that sentence out loud with heavy sarcasm or incredible irony.
Last week, we were having typical Autumn in Wisconsin weather (I live in Southern Wisconsin, for those not in the know). Nights were in the 20s or 30s (Fahrenheit, my metric friends) and the days were in the 40s. Sometimes the wind chill brought down the daytime temps, but hey, it was at least dry. And I could feel it over the last few days. I could feel the weather changing. I knew it was coming.
Along with the all-over flu-like feeling, I had the itchy skin and various points on my body hurt like arthritis. I have thought for years that it was arthritis, but it might not be- it may just be what is referred to as a "fibro hot spot". Last night, I took my Vicodin at my usual time, followed by my muscle relaxer an hour and a half later. It wasn't till about an hour after I took the muscle relaxer that I started to feel any kind of relief. Which to me equals less likely arthritis pain, more likely fibro hot spot.
Today's high- 60 degrees Fahrenheit. Humidity is at 98%. I start feeling the humidity in my skin around 50%. So you can imagine how I feel right now. And if you can't, here's an analogy.
I want to scrape off my skin with a potato peeler and rub sandpaper on my muscles underneath. I'm running low on Vicodin- thanks to the VA hospital's refill policies- so I'm trying not to take any in the daytime till the refill arrives. I may cave in though, because the potato-peeler option is a little messy and I'm not sure the disabled guy would give me sandpaper. And the pain that is radiating from my right hand and my feet- well, I would like to take an ice pick to those joints and give them a thorough rub down with sandpaper too. Again, it sounds messy.
The weather is supposed to change tomorrow and be back down in the 30s. I can only hope so.
On a side note, a friend of mine (one of the online ones I've never met in person, but we've spoken on the phone) started a message board for support. We're not medical people and we offer no medical advice, but its a place to go and vent and rage and cry. And get support from people. She calls it Strength With Pain and she's made me an admin. I'm "Pahz" over there and she's "kcmc". If you're in pain, you have friends there. If you're not in pain, then you can come be a friend.
Let me throw this out there, before I get started and spiral into full-on rant mode. The spouse- aka the Disabled Guy- has said in the past that he thinks I'm exaggerating my pain. I am not. I'm just more vocal about my pain now that we know it has a name. I've been paying more attention to the pain, the weather, the connection between the two. I've also been more outspoken about what it does to me and how it feels. There's no reason other than to try and garner a little bit of sympathy from those around me. But it isn't working.
A lot of people are lucky, they have an amazing support network of actual living humans who are or are not related to them. They care about them, are concerned for them. I do not. My parents don't live with me, so they don't see me on those days when I'm my worst. They know about them, but they rarely see it happen. Plus my mother has her own very real and visible health problems to deal with and quite honestly, I don't need to burden her with mine.
My main source of support comes from online friends- most of whom I've never met in person- who are either suffering the same fate as I am, or they have pain issues of their own that are different. I also have some who have no major health issues, but they care about me- again, some I have met, some I have not. And while its nice to know that they're there, I don't want to spend my time whinging on to them about how much I hurt or itch or whatever this stupid thing throws at me on any given day.
And that's where the weather comes into play.
You know the incredibly annoying saying- its said no matter where you live- "If ya don't like the weather here in [insert place], just wait ten minutes! HAR HAR HAR!!"
Yes. Hilarious.
I only say that sentence out loud with heavy sarcasm or incredible irony.
Last week, we were having typical Autumn in Wisconsin weather (I live in Southern Wisconsin, for those not in the know). Nights were in the 20s or 30s (Fahrenheit, my metric friends) and the days were in the 40s. Sometimes the wind chill brought down the daytime temps, but hey, it was at least dry. And I could feel it over the last few days. I could feel the weather changing. I knew it was coming.
Along with the all-over flu-like feeling, I had the itchy skin and various points on my body hurt like arthritis. I have thought for years that it was arthritis, but it might not be- it may just be what is referred to as a "fibro hot spot". Last night, I took my Vicodin at my usual time, followed by my muscle relaxer an hour and a half later. It wasn't till about an hour after I took the muscle relaxer that I started to feel any kind of relief. Which to me equals less likely arthritis pain, more likely fibro hot spot.
Today's high- 60 degrees Fahrenheit. Humidity is at 98%. I start feeling the humidity in my skin around 50%. So you can imagine how I feel right now. And if you can't, here's an analogy.
I want to scrape off my skin with a potato peeler and rub sandpaper on my muscles underneath. I'm running low on Vicodin- thanks to the VA hospital's refill policies- so I'm trying not to take any in the daytime till the refill arrives. I may cave in though, because the potato-peeler option is a little messy and I'm not sure the disabled guy would give me sandpaper. And the pain that is radiating from my right hand and my feet- well, I would like to take an ice pick to those joints and give them a thorough rub down with sandpaper too. Again, it sounds messy.
The weather is supposed to change tomorrow and be back down in the 30s. I can only hope so.
On a side note, a friend of mine (one of the online ones I've never met in person, but we've spoken on the phone) started a message board for support. We're not medical people and we offer no medical advice, but its a place to go and vent and rage and cry. And get support from people. She calls it Strength With Pain and she's made me an admin. I'm "Pahz" over there and she's "kcmc". If you're in pain, you have friends there. If you're not in pain, then you can come be a friend.
Sunday, October 31, 2010
"Hmm, I need to blog about this..." ... "Interesting... I should share this on the fibro blog..."
Aaaand, then I forget. I get busy or distracted by something shiny. I intended on keeping track of things through this blog as a way of being able to look back on this or to help others realize they're not alone. That's a huge thing, by the way, not feeling like you're alone. I live in a house with people who do not give a damn how much I hurt from day to day or if my fingers are numb and tingly (they are today, by the way). And now and then, seeing that someone else has this very same problem... it feels good to know. It was a relief, that day, in the VA hospital when my doctor said, "You have all the classic signs..." I couldn't believe it. I kept waiting for a "but..." and she never said it. She just reiterated that I was, indeed, suffering from fibromyalgia.
Today sucks for two reasons. The spouse and the son came home on Wednesday night. And I haven't slept good since. When I sleep, I rarely move from my little bubble of space, even when I'm alone in the bed. It comes from almost thirteen years of sleeping next to a disabled person. (You're thinking to yourself that we're closing in on sixteen years of disability and how is it I've only spent thirteen sleeping next to him. I'll tell you: the first year, he slept on our hide-a-bed because he couldn't get out of our full-wave water bed. The second year, I worked nights and the one or two nights I was home, I ended up sleeping mostly in the La-Z-boy recliner. The third year was the year he decided to leave us. But he came back and here we are). With him in the bed, well, he's a bed hog. And a blanket fiend. He also pushes me in his sleep and snores- no joke- as loud as a lawnmower. His snoring has damaged my hearing (not hyperbole, but actual fact).
The second reason is all my fault. I haven't had the energy to put on shoes for two days in a row. I'm just bloody tired. I'm worn out and I have to keep doing stuff and mustering the energy to put on my shoes isn't a priority. Of course, every time I stand up, it just about kills me. My own damn fault.
Today, my body feels like its been pressed through one of those old-fashioned clothes-wringer thingies you see in movies. I feel like every muscle has been pulled tight, rolled flat, then left to slide back into place under its own tension. Except for the fact it hasn't slid back yet and still feels like its pulled tight. And I slept wrong on my right arm and you tack on that "I slept on it wrong" pain, then you have my day.
While the Disabled Guy was gone (for five long weeks), he texted me almost constantly. He said he'd try to be more caring or more attentive. I mean, after all, I have a real disease, diagnosed by a real doctor. I take medicine for it. Its kind of hard to deny that it exists, right? Well, for you maybe. For me, definitely. For him? Not so much.
It took him all of... well, less than a day to go back to his usual responses. Which are either: Ignore her while she speaks and maybe she'll shut up; or pretend to listen and then say in monotone, "Yeah" or "you'll be okay."
On a lighter note, today is Halloween. Blessed Samhain to you who know what that is.
Because of a book called Drop Dead Gorgeous by Wayne Simmons (set for re-release in early 2011, get a copy!), I decided to "zombie it up" for this year's Halloween. Then I ran the photos through my Photoshop lomography technique. And then I added a layer of red to the eyes and I came up with this:
That's all done with eyeshadow and store-bought fake blood. I used green and blue eyeshadow on my face, black around my eyes, and "black cherry" lipstick. All of my Halloween-themed photos can be seen here on my Flickr.
Thanks for reading.
Today sucks for two reasons. The spouse and the son came home on Wednesday night. And I haven't slept good since. When I sleep, I rarely move from my little bubble of space, even when I'm alone in the bed. It comes from almost thirteen years of sleeping next to a disabled person. (You're thinking to yourself that we're closing in on sixteen years of disability and how is it I've only spent thirteen sleeping next to him. I'll tell you: the first year, he slept on our hide-a-bed because he couldn't get out of our full-wave water bed. The second year, I worked nights and the one or two nights I was home, I ended up sleeping mostly in the La-Z-boy recliner. The third year was the year he decided to leave us. But he came back and here we are). With him in the bed, well, he's a bed hog. And a blanket fiend. He also pushes me in his sleep and snores- no joke- as loud as a lawnmower. His snoring has damaged my hearing (not hyperbole, but actual fact).
The second reason is all my fault. I haven't had the energy to put on shoes for two days in a row. I'm just bloody tired. I'm worn out and I have to keep doing stuff and mustering the energy to put on my shoes isn't a priority. Of course, every time I stand up, it just about kills me. My own damn fault.
Today, my body feels like its been pressed through one of those old-fashioned clothes-wringer thingies you see in movies. I feel like every muscle has been pulled tight, rolled flat, then left to slide back into place under its own tension. Except for the fact it hasn't slid back yet and still feels like its pulled tight. And I slept wrong on my right arm and you tack on that "I slept on it wrong" pain, then you have my day.
While the Disabled Guy was gone (for five long weeks), he texted me almost constantly. He said he'd try to be more caring or more attentive. I mean, after all, I have a real disease, diagnosed by a real doctor. I take medicine for it. Its kind of hard to deny that it exists, right? Well, for you maybe. For me, definitely. For him? Not so much.
It took him all of... well, less than a day to go back to his usual responses. Which are either: Ignore her while she speaks and maybe she'll shut up; or pretend to listen and then say in monotone, "Yeah" or "you'll be okay."
On a lighter note, today is Halloween. Blessed Samhain to you who know what that is.
Because of a book called Drop Dead Gorgeous by Wayne Simmons (set for re-release in early 2011, get a copy!), I decided to "zombie it up" for this year's Halloween. Then I ran the photos through my Photoshop lomography technique. And then I added a layer of red to the eyes and I came up with this:
That's all done with eyeshadow and store-bought fake blood. I used green and blue eyeshadow on my face, black around my eyes, and "black cherry" lipstick. All of my Halloween-themed photos can be seen here on my Flickr.
Thanks for reading.
Thursday, October 7, 2010
I survived a week without Vicodin
Not by choice, mind you, not by choice. Each month, when I get to about two weeks left of pills, I call the automated number and request a refill. Usually the automated voice tells me to "allow ten to fourteen days for delivery"... and once in a while, it will say: "This prescription has expired, press one now to request a renewal" so I press one. About two years ago, there was a fiasco with the automated thing and I didn't get a refill of my Hydrochlorothiazadide. That's a water pill for my edema. When I finally got in to see a doctor- who was not my regular doctor- I got a thirty day supply (I usually get a ninety day supply) and when I got home, the regular refill was there.
Well, my Vicodin ran out. A week ago Wednesday, I asked- because I was there and the computer said it was "processing". That's good... because that means I should get it soon. Well, it turns out that I was lower on my supply than I thought and I took my very last Vicodin pill (which is one-third of what I usually take at night) last Thursday night. But, I'd been lowering my dose over the course of two weeks- just in case something like this happened.
And I've been doing okay. The Cyclobenzaprine has been helping me sleep- so that's good. I've been surviving during the day, too. I even did a day and a half at the Stronghold Olde English Faire (pics below). The whole "daytime without Vicodin" has been okay, till the last couple of days. But the nights first- er, more like the mornings. The roughest part of the day is when I wake up. Every muscle in my body feels as if it has tightened like a body-builder lifting dead weight. It takes me a good three minutes to actually get moving. I flex and relax my muscles as much as I can before I try to sit up. When I take Vicodin at night, it makes the mornings just ever-so-slightly easier.
Then, there's the last couple of days. The itchy skin came back. Well, it never really went anywhere, its always here, otherwise I'd look pretty freaky out at the Wal-Mart without my skin. The last two days or so, I've been itchy and unable to do anything. Even the Australian Panadol- which works so well on headaches and sprains- didn't do anything for my itching. On top of the itching, I also have the fatigue. Tired. So very tired. Every single day since a week ago Wednesday, I've had to go somewhere and do something. Granted, the two days at faire were of my own choice, but still. Even today- the day I thought I could just lie around and be a blob- I have an orchestra meeting. Plus I finally had to do the laundry- the ren faire laundry. No! I didn't take my clothes out and beat them on a rock and I didn't have Timothy Olyphant's abs around to use... but that's probably an overshare into the dark places of my psyche. What? You don't think Timothy Olyphant is hot? Well, you're probably a straight guy then. Not that there's anything wrong with being a straight male!
Wait, what was I talking about? I got distracted by Mr. Olyphant's abdominals. Oh, ren faire garb laundry. Its heavy and I have to hang it out to dry. Not because its so delicate or anything, but because its not cheap and I don't want to ruin it in my clothes dryer. Now its done and ready to go back into its Rubbermaid container till next May.
So, now I know I can live without Vicodin, but I also know that its a necessary evil in my life. I hope it gets here soon, because this hurting all the time is starting to get on my nerves. And the whole itchy skin thing, that's already on my nerves.
I promised you some ren faire photos- here they are. Stronghold Olde English Faire, in Oregon, IL.
I've been told I have a "good eye" when it comes to taking photos. I specialize (if you can call it that) in macro (close-up) and nature photography. So, while at faire, I got really close to things. And the living things I took macro shots of- don't worry, I asked for permission first. I've also discovered that my style of photography isn't for everyone. Not everyone gets the point of the macro and the abstract. But that's okay. It doesn't bother me. Enjoy the photos.
Well, my Vicodin ran out. A week ago Wednesday, I asked- because I was there and the computer said it was "processing". That's good... because that means I should get it soon. Well, it turns out that I was lower on my supply than I thought and I took my very last Vicodin pill (which is one-third of what I usually take at night) last Thursday night. But, I'd been lowering my dose over the course of two weeks- just in case something like this happened.
And I've been doing okay. The Cyclobenzaprine has been helping me sleep- so that's good. I've been surviving during the day, too. I even did a day and a half at the Stronghold Olde English Faire (pics below). The whole "daytime without Vicodin" has been okay, till the last couple of days. But the nights first- er, more like the mornings. The roughest part of the day is when I wake up. Every muscle in my body feels as if it has tightened like a body-builder lifting dead weight. It takes me a good three minutes to actually get moving. I flex and relax my muscles as much as I can before I try to sit up. When I take Vicodin at night, it makes the mornings just ever-so-slightly easier.
Then, there's the last couple of days. The itchy skin came back. Well, it never really went anywhere, its always here, otherwise I'd look pretty freaky out at the Wal-Mart without my skin. The last two days or so, I've been itchy and unable to do anything. Even the Australian Panadol- which works so well on headaches and sprains- didn't do anything for my itching. On top of the itching, I also have the fatigue. Tired. So very tired. Every single day since a week ago Wednesday, I've had to go somewhere and do something. Granted, the two days at faire were of my own choice, but still. Even today- the day I thought I could just lie around and be a blob- I have an orchestra meeting. Plus I finally had to do the laundry- the ren faire laundry. No! I didn't take my clothes out and beat them on a rock and I didn't have Timothy Olyphant's abs around to use... but that's probably an overshare into the dark places of my psyche. What? You don't think Timothy Olyphant is hot? Well, you're probably a straight guy then. Not that there's anything wrong with being a straight male!
Wait, what was I talking about? I got distracted by Mr. Olyphant's abdominals. Oh, ren faire garb laundry. Its heavy and I have to hang it out to dry. Not because its so delicate or anything, but because its not cheap and I don't want to ruin it in my clothes dryer. Now its done and ready to go back into its Rubbermaid container till next May.
So, now I know I can live without Vicodin, but I also know that its a necessary evil in my life. I hope it gets here soon, because this hurting all the time is starting to get on my nerves. And the whole itchy skin thing, that's already on my nerves.
I promised you some ren faire photos- here they are. Stronghold Olde English Faire, in Oregon, IL.
I've been told I have a "good eye" when it comes to taking photos. I specialize (if you can call it that) in macro (close-up) and nature photography. So, while at faire, I got really close to things. And the living things I took macro shots of- don't worry, I asked for permission first. I've also discovered that my style of photography isn't for everyone. Not everyone gets the point of the macro and the abstract. But that's okay. It doesn't bother me. Enjoy the photos.
Thursday, September 30, 2010
This won't seem like good news, but it is! Trust me!
Let me start off by saying, again, that there is good news. You'll just have to weed your way through the whinging to find it.
The last three days have been an ever-increasing torture. So much hurts. I wake up and I'm achy. I sit down and I'm achy. I get up from my seat and I'm achy. Each day has gotten a little worse. The second day, I had to drive to Madison for a follow-up with my fibro doctor (she's a rheumatologist). But my appointment was in the afternoon. And this past week and a half, I've been doing the housework by myself, taking care of the dogs by myself, and doing all the running around by myself. The spouse and the son took off to North Carolina where the in-laws are and with Ceej going to school and working, I'm pretty much left with it all. She also has a ton of homework to do, what with two advanced placement classes on her schedule. So the last thing I'm going to ask her to do is the dishes.
But I digress...
Just when I think I have this fibromyalgia thing worked out- what triggers it, how to feel better, what to do to stave off the pain... something changes and then this fibromyalgia beast wrestles me to the ground and kicks me with soft, clown-like shoes. I say that because I've actually been kicked by someone wearing sneakers and that bloody well hurts. This is more like being beaten with firm pillows to the point where you want to stab the person holding the pillow. Its more of a dragging-down-squishing-to-the-floor-can't-get-up-gravity-hurts kind of thing than it is a "beating".
A lot of fibro sufferers will refer to their pain as "being hit by a Mack truck" or "run over" and such. That's a pretty good analogy. But, here's one that's from real life. I mean, because being hit by a Mack truck has a pretty low survival rate, doesn't it? And I thought of this while I was watching a video of the final joust at the Bristol Ren Faire. That all-over body pain... that "widespread pain in the muscles" that is so frequently explained in those drug ads- to me, it feels like being thrown from a horse. I've been thrown from a horse once in my life. I've also been kicked by a horse once in my life. Stepped on too many times to count (hmm, now that makes me wonder if my right foot is worse than my left foot for that very reason). But when I was thrown from that horse, it hurt my hip and my elbow, because that's how I landed. It also hurt my pride damn near instantaneously, but that's another story. I got up, dusted myself off and picked the leaves and grass out of my hair. And I got back on the horse (because you have to!). The next day, I awoke to every muscle in my body aching. My hip and my elbow were bruised and that all-over pain seemed to radiate from those two places. We were out camping and I couldn't take a hot shower to loosen my muscles. I had to basically go through my day with that pain. The next day, it was worse. It wasn't till about three days later that it started to get better. But that's what fibro feels like. It feels like being thrown from a horse and hitting the ground. Gravity is a harsh mistress (so sayeth Patrick Warburton as "The Tick").
Today, I went to lunch with my parents and got to see my photograph hanging inside Denny's (for the second time, I saw it last week for the first time). After lunch, Ceej and I went to the grocery store. Then to conferences (where I had to walk half the length of the school twice and do a lot of standing). And now, I have that all-over-horse-thrown feeling. I ache so badly that when I try to get out of my chair, I have to fight back tears. It truly hurts that much.
BUT!
There is good news!
At my fibromyalgia follow-up, my doctor was quite pleased! I've lost five or six pounds since my last visit (three months ago). I'm also sleeping in longer blocks (I went from 90 minutes/two hours to sleeping four and five hours at a stretch). And from that, I've been having more good days than bad days (well, for the most part. This week was pretty rough, but till now, its been pretty good). She was pleased with my progress and we're going to keep this course for another three months (Unless I feel like its getting worse or not helping anymore, then I can call them and we'll try a different drug). Right now, I take 10 milligrams of Cyclobenzaprine. And now I can take a pill and a half on those rough days (guess what I took today). The doctor was very pleased to hear I went to faire three times this summer (after I explained to her what it was all about and how much walking I did- she was impressed that I lasted about six hours, even in the heat). She did tell me to avoid the heat, but I can't make Bristol change their schedule just for me. I also told her of my plan to get season tickets for next year, so I can go every weekend. I even showed her some of my ren faire photos on my phone (I can get on the Internet on my mobile phone and all those Bristol photos are also on my Facebook). She was quite impressed with what she could see in that 2x2.5 inch Motorola screen. The knights impressed her most (and she said that Maximilian was quite the handsome guy- from seeing this photo of him). I also told her that the girls and I are going to another faire this weekend (Stronghold Olde English Faire). She thinks getting out and going to the faire is a good thing for me.
So there you have it- doctor approved: Renaissance Faires! Huzzah!
She also gave me two book titles I should have a gander at- which I will do as soon as I finish my "Abraham Lincoln; Vampire Hunter" book.
Oh, I almost forgot. Since the disabled guy left and won't be back for my birthday, he told me I could get a new pair of boots for my birthday. That doesn't sound like much, but I wear Dr Martens boots. (or "Docs" as they are lovingly called). The funny thing is- I just got a brand new pair of Docs. Shiny red ones. I love 'em. (pictured below). But, while I was searching the Doc Martens website for shiny red boots, I found some that will be perfect for faire. They're not exactly "ren faire" shoes, but under a long dress, they'll look just fine. Heck, my last pair of "ren shoes" were Earth Shoes from Wal-Mart (they were actually ankle boots). Click this link to see the new boots. But, being as good news as that is, today I got a birthday card from him (and one from Jase). He sent me a check for $50, on top of the boots. So now I have extra spending money for the faire this weekend. And that rocks.
See... I told you there was good news!
Here's my shiny new boots-
The last three days have been an ever-increasing torture. So much hurts. I wake up and I'm achy. I sit down and I'm achy. I get up from my seat and I'm achy. Each day has gotten a little worse. The second day, I had to drive to Madison for a follow-up with my fibro doctor (she's a rheumatologist). But my appointment was in the afternoon. And this past week and a half, I've been doing the housework by myself, taking care of the dogs by myself, and doing all the running around by myself. The spouse and the son took off to North Carolina where the in-laws are and with Ceej going to school and working, I'm pretty much left with it all. She also has a ton of homework to do, what with two advanced placement classes on her schedule. So the last thing I'm going to ask her to do is the dishes.
But I digress...
Just when I think I have this fibromyalgia thing worked out- what triggers it, how to feel better, what to do to stave off the pain... something changes and then this fibromyalgia beast wrestles me to the ground and kicks me with soft, clown-like shoes. I say that because I've actually been kicked by someone wearing sneakers and that bloody well hurts. This is more like being beaten with firm pillows to the point where you want to stab the person holding the pillow. Its more of a dragging-down-squishing-to-the-floor-can't-get-up-gravity-hurts kind of thing than it is a "beating".
A lot of fibro sufferers will refer to their pain as "being hit by a Mack truck" or "run over" and such. That's a pretty good analogy. But, here's one that's from real life. I mean, because being hit by a Mack truck has a pretty low survival rate, doesn't it? And I thought of this while I was watching a video of the final joust at the Bristol Ren Faire. That all-over body pain... that "widespread pain in the muscles" that is so frequently explained in those drug ads- to me, it feels like being thrown from a horse. I've been thrown from a horse once in my life. I've also been kicked by a horse once in my life. Stepped on too many times to count (hmm, now that makes me wonder if my right foot is worse than my left foot for that very reason). But when I was thrown from that horse, it hurt my hip and my elbow, because that's how I landed. It also hurt my pride damn near instantaneously, but that's another story. I got up, dusted myself off and picked the leaves and grass out of my hair. And I got back on the horse (because you have to!). The next day, I awoke to every muscle in my body aching. My hip and my elbow were bruised and that all-over pain seemed to radiate from those two places. We were out camping and I couldn't take a hot shower to loosen my muscles. I had to basically go through my day with that pain. The next day, it was worse. It wasn't till about three days later that it started to get better. But that's what fibro feels like. It feels like being thrown from a horse and hitting the ground. Gravity is a harsh mistress (so sayeth Patrick Warburton as "The Tick").
Today, I went to lunch with my parents and got to see my photograph hanging inside Denny's (for the second time, I saw it last week for the first time). After lunch, Ceej and I went to the grocery store. Then to conferences (where I had to walk half the length of the school twice and do a lot of standing). And now, I have that all-over-horse-thrown feeling. I ache so badly that when I try to get out of my chair, I have to fight back tears. It truly hurts that much.
BUT!
There is good news!
At my fibromyalgia follow-up, my doctor was quite pleased! I've lost five or six pounds since my last visit (three months ago). I'm also sleeping in longer blocks (I went from 90 minutes/two hours to sleeping four and five hours at a stretch). And from that, I've been having more good days than bad days (well, for the most part. This week was pretty rough, but till now, its been pretty good). She was pleased with my progress and we're going to keep this course for another three months (Unless I feel like its getting worse or not helping anymore, then I can call them and we'll try a different drug). Right now, I take 10 milligrams of Cyclobenzaprine. And now I can take a pill and a half on those rough days (guess what I took today). The doctor was very pleased to hear I went to faire three times this summer (after I explained to her what it was all about and how much walking I did- she was impressed that I lasted about six hours, even in the heat). She did tell me to avoid the heat, but I can't make Bristol change their schedule just for me. I also told her of my plan to get season tickets for next year, so I can go every weekend. I even showed her some of my ren faire photos on my phone (I can get on the Internet on my mobile phone and all those Bristol photos are also on my Facebook). She was quite impressed with what she could see in that 2x2.5 inch Motorola screen. The knights impressed her most (and she said that Maximilian was quite the handsome guy- from seeing this photo of him). I also told her that the girls and I are going to another faire this weekend (Stronghold Olde English Faire). She thinks getting out and going to the faire is a good thing for me.
So there you have it- doctor approved: Renaissance Faires! Huzzah!
She also gave me two book titles I should have a gander at- which I will do as soon as I finish my "Abraham Lincoln; Vampire Hunter" book.
Oh, I almost forgot. Since the disabled guy left and won't be back for my birthday, he told me I could get a new pair of boots for my birthday. That doesn't sound like much, but I wear Dr Martens boots. (or "Docs" as they are lovingly called). The funny thing is- I just got a brand new pair of Docs. Shiny red ones. I love 'em. (pictured below). But, while I was searching the Doc Martens website for shiny red boots, I found some that will be perfect for faire. They're not exactly "ren faire" shoes, but under a long dress, they'll look just fine. Heck, my last pair of "ren shoes" were Earth Shoes from Wal-Mart (they were actually ankle boots). Click this link to see the new boots. But, being as good news as that is, today I got a birthday card from him (and one from Jase). He sent me a check for $50, on top of the boots. So now I have extra spending money for the faire this weekend. And that rocks.
See... I told you there was good news!
Here's my shiny new boots-
Tuesday, September 7, 2010
It is all my own fault, but it was worth it!
Sunday, I went to the Bristol Renaissance Faire with my daughters. In case I haven't mentioned it before, they are seventeen and twenty-one. I knew what I was in for because I'd been to faire two other times this summer. Both days were blistering hot with crazy-high humidity and no wind! I, quite literally, started sweating when I climbed out of my truck and didn't stop till I got back in and had the AC on, six hours later.
Sunday wasn't quite as hot, though. I was still sweaty, but not nearly as disgustingly as I was those first two times. We saw the joust, the acrobatic group Barely Balanced, had lunch (spinach calzones- which were fantastic!), I took loads of photos- not an exaggeration. I had over 180 photos to go through! And we got to see Maxx and Mauldron's A Knight at the Opera (comedy, singing, dancing- done by two men who also do the joust). I did feel better Sunday than I did on those other two days and it looked like we might stay later than those previous days. Not so much though. The first day, July 10th (opening day), it was around 130 or 2 PM when it finally got so bad I couldn't take it anymore. The second day, August 1st, it was around the same time, but also, my feet were in agony. I'm pretty sure my "ren shoes" have had it. This time, I didn't even start to feel tired till around 2 PM. The girls went back toward the entrance to see the Mud Show and I stayed closer to the jousting ring. We were going to take in the 3 PM jousting tournament. Around 230, I made my way down the hill and it was quite literally, standing room only. I saw "Maxx" and stood next to him to watch the Andalusian horse show (I can't remember the real name of that show). Full disclosure- I know "Maxx" (not his real name) and we stayed around after the first joust to take photos with him. In fact, he and Mauldron involved me in the show, even called me "Lady Smelly"- the whole bit was far too hilarious to explain.
When the dancing horse was through, almost no one got up from their seats. I walked around to the side where Maxx's fans are seated (you cheer for the knight for where you're seated) but there wasn't even one seat available. People were sitting in the grass and standing, but there was no way I could stand for that long. I can't get down on the ground either. Partly because of my knees and partly because even if I got down there, in the tightly-laced-up garb, I wouldn't have been able to get up.
I sat down a lot between 2 PM and the time we left. Four people thought I worked there this time. When I was there with Christine on August 1st, two people thought I was a performer. I didn't think my garb looked all that great- not by comparison to anyone else's! But it was nice and I did know enough about the faire to be able to answer their questions. One would think that the digital camera I had in plain view would have been the big tip-off that I wasn't a worker.
My feet were the big problem on Sunday. I wore my non-ren-faire Doc Martens boots for that reason, but by the end of our time, I could barely walk. Kat, the oldest, suggested next time we don't come AT opening, that way we could stay later. The problem there is that if we don't come as early as possible, we end up parking too far away and that works against me.
Monday, I woke up with every muscle in my body protesting every movement I made. I shuffled from my room to the bathroom and then down the stairs. I was utterly exhausted and everything screamed in agony. My skin didn't itch, but I think it was because the pain overwhelmed the itching. All day long, every time I sat down for longer than a few minutes (which I tried to do often!), getting up was an experiment in pain. Today, I woke up the same- in pain. But, today, my skin is itchy too. Oh, and my feet- yesterday was worse, but anytime I move my feet, whether I'm standing or not, I get a shooting muscle spasm in my arches. I'm pretty sure the foot thing isn't fibromyalgia, but it isn't helping! I'm also slightly swollen today. I can feel it in my hands and I can see it in my feet.
Its my own fault, but it was definitely worth it. And I'll show you why- Photos!
The first photo of the day-
Left to right- Me, Kat, Christine (aka- Ceej).
My daughters- Kathrine (21) and Christine (17)
Barely Balanced is an acrobatic/comedy trio who are just hilarious. They walk around on stilts between shows and delight us all.
They're Casey, Cameron and Jimmy- but if you have trouble remembering names, they're also: "Small! Medium! And LARGE!" (respectively).
This is Cameron. We saw him almost as soon as we'd arrived. I called to him- the girls went to Bristol without me two weeks ago and I mentioned on Facebook how they were there with half my gear (belt, pouches, hair doo-dads). I said that they damn well better get a photo of themselves with someone like Barely Balanced or Jane the Phoole. Cameron said he'd be glad to pose for a photo with them, so I texted them that very statement. But they didn't do it! When we saw Cameron, I told him who we were and he said, "Oh, are these them? Why didn't you stop last time!?"
Then he used them as furniture.
Jimmy- who is actually friends with one of Kat's best friends. He knew her in college. He even talked to Kat about waiting to go to college instead of going right out of high school (which is what she did- she just started going to college last week).
And with the lovely Casey. She's not only amazing in the acrobat group, she does stand-up. And she's hilarious.
If my 18 year old son had been with us, this photo would have been perfect because Casey could have done something to him, like hung onto him like Cameron is to Kat or even had him pick her up. But he thinks we're nerds and won't go with us.
This is Jane the Phoole. I've met her several times at the small Janesville Faire. She's also hilarious and she's part of the cast at Bristol. Its an honor knowing her and here she explained to the girls how to be famous (by looking into that small hole and saying: "Monkeys!")
Sir Maximilian and his loyal steed- Kilvarough.
He's a bit more awesome than the Old Spice guy, because not only is he on a horse, he has sword.
A knight and ladies-
Me and Maximilian. He's sweaty because he just completed a joust. I'm sweaty because I'm conscious and upright. I do a 365days self-portrait project on Flickr. And he agreed to be in my photo of the day (Day 204).
And, the girls again... Christine and Kathrine
If you want to see ALL the photos, here is the link- "Bristol Renaissance Faire"
Sunday wasn't quite as hot, though. I was still sweaty, but not nearly as disgustingly as I was those first two times. We saw the joust, the acrobatic group Barely Balanced, had lunch (spinach calzones- which were fantastic!), I took loads of photos- not an exaggeration. I had over 180 photos to go through! And we got to see Maxx and Mauldron's A Knight at the Opera (comedy, singing, dancing- done by two men who also do the joust). I did feel better Sunday than I did on those other two days and it looked like we might stay later than those previous days. Not so much though. The first day, July 10th (opening day), it was around 130 or 2 PM when it finally got so bad I couldn't take it anymore. The second day, August 1st, it was around the same time, but also, my feet were in agony. I'm pretty sure my "ren shoes" have had it. This time, I didn't even start to feel tired till around 2 PM. The girls went back toward the entrance to see the Mud Show and I stayed closer to the jousting ring. We were going to take in the 3 PM jousting tournament. Around 230, I made my way down the hill and it was quite literally, standing room only. I saw "Maxx" and stood next to him to watch the Andalusian horse show (I can't remember the real name of that show). Full disclosure- I know "Maxx" (not his real name) and we stayed around after the first joust to take photos with him. In fact, he and Mauldron involved me in the show, even called me "Lady Smelly"- the whole bit was far too hilarious to explain.
When the dancing horse was through, almost no one got up from their seats. I walked around to the side where Maxx's fans are seated (you cheer for the knight for where you're seated) but there wasn't even one seat available. People were sitting in the grass and standing, but there was no way I could stand for that long. I can't get down on the ground either. Partly because of my knees and partly because even if I got down there, in the tightly-laced-up garb, I wouldn't have been able to get up.
I sat down a lot between 2 PM and the time we left. Four people thought I worked there this time. When I was there with Christine on August 1st, two people thought I was a performer. I didn't think my garb looked all that great- not by comparison to anyone else's! But it was nice and I did know enough about the faire to be able to answer their questions. One would think that the digital camera I had in plain view would have been the big tip-off that I wasn't a worker.
My feet were the big problem on Sunday. I wore my non-ren-faire Doc Martens boots for that reason, but by the end of our time, I could barely walk. Kat, the oldest, suggested next time we don't come AT opening, that way we could stay later. The problem there is that if we don't come as early as possible, we end up parking too far away and that works against me.
Monday, I woke up with every muscle in my body protesting every movement I made. I shuffled from my room to the bathroom and then down the stairs. I was utterly exhausted and everything screamed in agony. My skin didn't itch, but I think it was because the pain overwhelmed the itching. All day long, every time I sat down for longer than a few minutes (which I tried to do often!), getting up was an experiment in pain. Today, I woke up the same- in pain. But, today, my skin is itchy too. Oh, and my feet- yesterday was worse, but anytime I move my feet, whether I'm standing or not, I get a shooting muscle spasm in my arches. I'm pretty sure the foot thing isn't fibromyalgia, but it isn't helping! I'm also slightly swollen today. I can feel it in my hands and I can see it in my feet.
Its my own fault, but it was definitely worth it. And I'll show you why- Photos!
The first photo of the day-
Left to right- Me, Kat, Christine (aka- Ceej).
My daughters- Kathrine (21) and Christine (17)
Barely Balanced is an acrobatic/comedy trio who are just hilarious. They walk around on stilts between shows and delight us all.
They're Casey, Cameron and Jimmy- but if you have trouble remembering names, they're also: "Small! Medium! And LARGE!" (respectively).
This is Cameron. We saw him almost as soon as we'd arrived. I called to him- the girls went to Bristol without me two weeks ago and I mentioned on Facebook how they were there with half my gear (belt, pouches, hair doo-dads). I said that they damn well better get a photo of themselves with someone like Barely Balanced or Jane the Phoole. Cameron said he'd be glad to pose for a photo with them, so I texted them that very statement. But they didn't do it! When we saw Cameron, I told him who we were and he said, "Oh, are these them? Why didn't you stop last time!?"
Then he used them as furniture.
Jimmy- who is actually friends with one of Kat's best friends. He knew her in college. He even talked to Kat about waiting to go to college instead of going right out of high school (which is what she did- she just started going to college last week).
And with the lovely Casey. She's not only amazing in the acrobat group, she does stand-up. And she's hilarious.
If my 18 year old son had been with us, this photo would have been perfect because Casey could have done something to him, like hung onto him like Cameron is to Kat or even had him pick her up. But he thinks we're nerds and won't go with us.
This is Jane the Phoole. I've met her several times at the small Janesville Faire. She's also hilarious and she's part of the cast at Bristol. Its an honor knowing her and here she explained to the girls how to be famous (by looking into that small hole and saying: "Monkeys!")
Sir Maximilian and his loyal steed- Kilvarough.
He's a bit more awesome than the Old Spice guy, because not only is he on a horse, he has sword.
A knight and ladies-
Me and Maximilian. He's sweaty because he just completed a joust. I'm sweaty because I'm conscious and upright. I do a 365days self-portrait project on Flickr. And he agreed to be in my photo of the day (Day 204).
And, the girls again... Christine and Kathrine
If you want to see ALL the photos, here is the link- "Bristol Renaissance Faire"
Monday, August 30, 2010
Alas, it was too good to last...
Monday morning brought the usual wake up, lay still for a moment, flex various muscles to see how much they hurt before attempting to rise from the coffin- I mean, bed. And of course, the muscle pain is always there first thing in the morning. One would think that resting all night would bring some relief, but all it does is increase the ache. I manage to make it downstairs, despite the muscle pain, which didn't go away after a few minutes of moving around and the foot pain, which I can only blame myself for- I didn't wear shoes two days in a row. What could I do? It was in the 90s for heat (30s for you Celsius followers) and pulling on a pair of leather Doc Martens is not on the top of my heat index coping techniques.
As I sit here typing at nearly 530 AM, my skin is itchy as hell. My muscles feel like they're being compressed and are trying to escape through the itchy skin.
I need to get all this out of my body before next Sunday. My 17 year old daughter and I are going to the ren faire again. I can only hope that its cooler than it was the last two times I went. I lasted till about 2 or 3 PM both times. That's a good long day, but its also a long time to sweat non-stop (I'm not exaggerating, I literally started sweating the moment I got out of my air-conditioned truck till I got back into the air-conditioned truck.
Hopefully by Sunday, I'll have a stretch of good days to build up my spoons.
What the hell am I talking about?
Only this- "The Spoon Theory" by Christine Miserandino
If you touch my spoons, I'll break your fingers! Which is a lie, because if I broke your fingers, it'd cost me a spoon and I need all my spoons.
As I sit here typing at nearly 530 AM, my skin is itchy as hell. My muscles feel like they're being compressed and are trying to escape through the itchy skin.
I need to get all this out of my body before next Sunday. My 17 year old daughter and I are going to the ren faire again. I can only hope that its cooler than it was the last two times I went. I lasted till about 2 or 3 PM both times. That's a good long day, but its also a long time to sweat non-stop (I'm not exaggerating, I literally started sweating the moment I got out of my air-conditioned truck till I got back into the air-conditioned truck.
Hopefully by Sunday, I'll have a stretch of good days to build up my spoons.
What the hell am I talking about?
Only this- "The Spoon Theory" by Christine Miserandino
If you touch my spoons, I'll break your fingers! Which is a lie, because if I broke your fingers, it'd cost me a spoon and I need all my spoons.
Saturday, August 28, 2010
What's this? A whole week of feeling good?
I really don't want to get excited about this. But I've gone since the last blog post (a week ago) without taking daytime pain meds. And I've done a lot in my days. Since last week, the Disabled Guy etsy shop sold two birdhouses and two of my photographs. (in case you don't follow my every move, we're selling stuff to try and raise money to send our daughter to New York City with the high school orchestra). So I've been to the post office five times in the last week (five because I had to go once to get boxes for the birdhouses). I've been to the store- grocery, Wal-Mart and to Fashion Bug to buy jeans with the 17 year old (school starts on Wednesday). All without having to take pain meds in the daytime.
So, I'm pretty sure the Cyclobenzaprine is doing something good for me. It is helping with the sleep issue. The longer blocks of sleep are a good thing.
I have had a few days where I was achy in the daytime, itchy too. Like right now, my wrists ache and my skin is slightly itchy. My muscles are a bit sore, but compared to how I felt just a month ago, this is a huge improvement. I'll take "slightly achy" over "agonizing pain" any day. Of course, my deepest, not-so-darkest fantasy is PAIN-FREE, because I don't remember what that feels like.
Despite the good things about the Cyclobenzaprine, I still get that tired-ish hangover feeling in the mornings. Again, though, if that's one of the things I have to live with to feel human in the daytime, its not that bad of a trade-off. Oh, and the dry mouth. I already take a water pill (Hydrochlorothiazadide) for the edema I've had since late 2004 and I went through a period of time with the dry mouth from that. But now, from the muscle relaxer, I've got pretty bad cotton mouth. I can sit with a mouthful of water and it still feels dry.
I got some mouth spray called Biotene for dry mouth and its rather disgusting. Its 'gentle mint" flavored but its more like "we rubbed some Juicy Fruit on the bottom of a wet shoe and then made a spray out of it". Not good at all. Tastes awful and doesn't do much for the dry mouth. It has been suggested more than once that I try sour candy. So I got some "Icebreakers" brand sour things. They worked okay and even though I dislike sour candies, they weren't so bad. Except they're sugar-free. They have an ingredient called "Sorbitol". I don't know how to say this delicately, so I'll just do the best I can. "Sorbitol" helps people who are having a difficult time with... umm... let's just say it helps you "go" and leave it at that. So, if I use a lot of these Icebreakers Sours, let's just say I don't get to spend that much time sitting at the computer.
So, I will find an alternative because I have stuff to do that requires me to leave the house. And the fact that I've felt damn good in the last week and I can leave the house, well, that's all the better.
So, I'm pretty sure the Cyclobenzaprine is doing something good for me. It is helping with the sleep issue. The longer blocks of sleep are a good thing.
I have had a few days where I was achy in the daytime, itchy too. Like right now, my wrists ache and my skin is slightly itchy. My muscles are a bit sore, but compared to how I felt just a month ago, this is a huge improvement. I'll take "slightly achy" over "agonizing pain" any day. Of course, my deepest, not-so-darkest fantasy is PAIN-FREE, because I don't remember what that feels like.
Despite the good things about the Cyclobenzaprine, I still get that tired-ish hangover feeling in the mornings. Again, though, if that's one of the things I have to live with to feel human in the daytime, its not that bad of a trade-off. Oh, and the dry mouth. I already take a water pill (Hydrochlorothiazadide) for the edema I've had since late 2004 and I went through a period of time with the dry mouth from that. But now, from the muscle relaxer, I've got pretty bad cotton mouth. I can sit with a mouthful of water and it still feels dry.
I got some mouth spray called Biotene for dry mouth and its rather disgusting. Its 'gentle mint" flavored but its more like "we rubbed some Juicy Fruit on the bottom of a wet shoe and then made a spray out of it". Not good at all. Tastes awful and doesn't do much for the dry mouth. It has been suggested more than once that I try sour candy. So I got some "Icebreakers" brand sour things. They worked okay and even though I dislike sour candies, they weren't so bad. Except they're sugar-free. They have an ingredient called "Sorbitol". I don't know how to say this delicately, so I'll just do the best I can. "Sorbitol" helps people who are having a difficult time with... umm... let's just say it helps you "go" and leave it at that. So, if I use a lot of these Icebreakers Sours, let's just say I don't get to spend that much time sitting at the computer.
So, I will find an alternative because I have stuff to do that requires me to leave the house. And the fact that I've felt damn good in the last week and I can leave the house, well, that's all the better.
Saturday, August 21, 2010
A pretty good day. Then I went to bed. Then I woke up
Friday wasn't bad. Two of our puppies went home on Friday. I did a half-assed job cleaning up the living room a little for the impending strangers- then apologized and explained that my kids don't do housework because they all have jobs and I'm in pain. Sometimes, I feel like saying, "We're lucky I'm upright, wearing clothes and coherent enough to piece these words together in a sentence."
But, Friday was overall okay. I took some Vicodin about a half hour before the first couple arrived to pick up their puppy. Then there was a brief comedy of errors in the attempt to get the inside baking element out of the oven. (it died about three days ago, and we had to wait till we got paid for a puppy to buy a new one). I got the replacement element and the spouse installed it and now our 16 year old oven works again. So, I went to the store.
I zipped through the store like the Me of old. Which is strange, because the Old Me is actually the Younger Me. I liked the Younger Me. She was happy and healthy and quick. A little chirpy and if I met her on the street, I might find her annoying, but I miss her.
More times than I care to remember from yesterday, I was completely drenched in sweat. It was humid and hot (around 90 Fahrenheit) and any move I made outside caused me to sweat like a long-distance runner. At the grocery store, by the time I got into my truck, I was dripping as though I had run a marathon with a Gatorade drip in my arm. But, aside from the intense sweating (which I'm sure was a combination of my extra activity and the warm temps and high humidity).
Lately, the humidity makes me feel worse, but I attribute the daytime Vicodin to the fact that it didn't seem to bother me. I was quite pleased yesterday. Felt good. Walked good. Seemed to have energy that I hadn't had in a while. I even considered writing about it last night, but around 830 PM, I was sooo tired. So very tired. I was in bed by 930, asleep by 10.
I think I slept through the night. I don't recall waking up in the night like I used to, so that's a good thing. When my alarm went off, it felt as if I'd just fallen asleep- which could mean one of two things: I slept so good it felt as though it sped by, or- I woke up just as tired as I was when I fell asleep. It was a light combination of the two. As soon as I tried to sit up, every single muscle in my body rejected the mere thought of moving. Every muscle ached. Every tendon is tender (oh, that's an unintentional pun, I swear). My muscles feel hot. The skin on my hands feels like its burning and itching. So, a good day followed by a sore and achy morning.
Yesterday, I had a pain in my wrist. I've had this pain before. It comes and goes. As long as I don't put weight on my wrist, it doesn't really hurt, but the second I put my hand down or try to grip something, the pain shoots through. Now, its only in my wrist. It doesn't jolt down the fingers or up to my elbow. It affects my grip strength and I view it as a mere inconvenience. But it got me to thinking about how this fibromyalgia thing is testy. Pain comes and goes. So does the energy. Some days I feel like I could conquer the world. And some days, I feel like the world has kicked me in the Lady-nads and left me on the floor to let the minor planets finish me off. (I just had the thought of the planets circling my pained body, curled on the floor, while they dance around me, snapping their fingers like West Side Story... "Once you're a planet, you're a planet for life!" *snap, snap*
What do you want? Its 510 AM!
Oh, and two more puppies go home today.
But, Friday was overall okay. I took some Vicodin about a half hour before the first couple arrived to pick up their puppy. Then there was a brief comedy of errors in the attempt to get the inside baking element out of the oven. (it died about three days ago, and we had to wait till we got paid for a puppy to buy a new one). I got the replacement element and the spouse installed it and now our 16 year old oven works again. So, I went to the store.
I zipped through the store like the Me of old. Which is strange, because the Old Me is actually the Younger Me. I liked the Younger Me. She was happy and healthy and quick. A little chirpy and if I met her on the street, I might find her annoying, but I miss her.
More times than I care to remember from yesterday, I was completely drenched in sweat. It was humid and hot (around 90 Fahrenheit) and any move I made outside caused me to sweat like a long-distance runner. At the grocery store, by the time I got into my truck, I was dripping as though I had run a marathon with a Gatorade drip in my arm. But, aside from the intense sweating (which I'm sure was a combination of my extra activity and the warm temps and high humidity).
Lately, the humidity makes me feel worse, but I attribute the daytime Vicodin to the fact that it didn't seem to bother me. I was quite pleased yesterday. Felt good. Walked good. Seemed to have energy that I hadn't had in a while. I even considered writing about it last night, but around 830 PM, I was sooo tired. So very tired. I was in bed by 930, asleep by 10.
I think I slept through the night. I don't recall waking up in the night like I used to, so that's a good thing. When my alarm went off, it felt as if I'd just fallen asleep- which could mean one of two things: I slept so good it felt as though it sped by, or- I woke up just as tired as I was when I fell asleep. It was a light combination of the two. As soon as I tried to sit up, every single muscle in my body rejected the mere thought of moving. Every muscle ached. Every tendon is tender (oh, that's an unintentional pun, I swear). My muscles feel hot. The skin on my hands feels like its burning and itching. So, a good day followed by a sore and achy morning.
Yesterday, I had a pain in my wrist. I've had this pain before. It comes and goes. As long as I don't put weight on my wrist, it doesn't really hurt, but the second I put my hand down or try to grip something, the pain shoots through. Now, its only in my wrist. It doesn't jolt down the fingers or up to my elbow. It affects my grip strength and I view it as a mere inconvenience. But it got me to thinking about how this fibromyalgia thing is testy. Pain comes and goes. So does the energy. Some days I feel like I could conquer the world. And some days, I feel like the world has kicked me in the Lady-nads and left me on the floor to let the minor planets finish me off. (I just had the thought of the planets circling my pained body, curled on the floor, while they dance around me, snapping their fingers like West Side Story... "Once you're a planet, you're a planet for life!" *snap, snap*
What do you want? Its 510 AM!
Oh, and two more puppies go home today.
Monday, August 16, 2010
Itching, aching, twitching, oh my!
I've been slightly itchy all day. A slight bit of burning, like a friction-y heat just under the skin.
And my muscles ache. I woke up so achy that I thought I'd been working out too hard. But that isn't happening.
About four PM (its about six PM as I type this), my muscles got twitchy. I'm a regular poster on a website called Regretsy and the site was down for about a half hour. In a Facebook post, the site owner announced the downtime. I posted a reply saying I was having withdrawal twitching. Well, I was actually twitching. I ended up taking my Vicodin about a half hour early tonight. When the twitching and the friction-y burning feeling ganged up on me, I'd had enough.
I'd really like my feet to stop hurting too. That's not a fibromyalgia issue, just a bitching for GP (general purpose for all you non-military types).
I shared photos with you last time and in case you don't read any of my other blogs or have me friended on Facebook, photography is my hobby and slight profession. I say "slight" because I have yet to make any money off of it, but I'm trying. I'm a recently-published amateur photographer. Well, there are some days that even the photos don't distract me from this mess.
Oh, and in case you had no idea- my "recently published photo" is hanging in a Denny's Restaurant in South Beloit, Illinois. I'm fairly well chuffed about that. People I know (okay, my adult-aged son and my parents) have called me to tell me they've seen my photo.
Now back to my regularly scheduled whinging. I wish this Vicodin would kick in so this freakin' itching would stop.
And my muscles ache. I woke up so achy that I thought I'd been working out too hard. But that isn't happening.
About four PM (its about six PM as I type this), my muscles got twitchy. I'm a regular poster on a website called Regretsy and the site was down for about a half hour. In a Facebook post, the site owner announced the downtime. I posted a reply saying I was having withdrawal twitching. Well, I was actually twitching. I ended up taking my Vicodin about a half hour early tonight. When the twitching and the friction-y burning feeling ganged up on me, I'd had enough.
I'd really like my feet to stop hurting too. That's not a fibromyalgia issue, just a bitching for GP (general purpose for all you non-military types).
I shared photos with you last time and in case you don't read any of my other blogs or have me friended on Facebook, photography is my hobby and slight profession. I say "slight" because I have yet to make any money off of it, but I'm trying. I'm a recently-published amateur photographer. Well, there are some days that even the photos don't distract me from this mess.
Oh, and in case you had no idea- my "recently published photo" is hanging in a Denny's Restaurant in South Beloit, Illinois. I'm fairly well chuffed about that. People I know (okay, my adult-aged son and my parents) have called me to tell me they've seen my photo.
Now back to my regularly scheduled whinging. I wish this Vicodin would kick in so this freakin' itching would stop.
Wednesday, August 4, 2010
"I feel achy"... "My body is sore..."
Neither of those is even close to being accurate. Those are the words that I say, but they don't come close to describing how I feel.
Yes, my muscles ache.
Yes, my body is sore.
Those short statements do not even touch the depth of how much things ache or how sore things can be. I was tired today from taking a shower. The very act of standing in the shower and moving my arms around my body as I washed tired me out. Sitting on my bed and holding a blow-dryer in one hand and running my fingers through my damp hair... well, it made me tired too. But at least I was sitting down and I had my elbow resting on my leg to ease that muscle tiredness.
Pulling my clothes on caused my skin to send little jolt-y electrical-y shocks through the muscles underneath. I didn't put shoes on again today- which I know I'll regret in the morning, but for today it just hurt too much. The very thought of trying to lift my feet with the weight of my Docs on them was enough to make me tolerate the pain in my spurred feet. I considered putting on my Converse sneakers, but that would have meant I would have to stand up and find socks, then sit down and put the shoes and socks on my feet. And I just didn't want things touching my feet today.
Today was one of those days where I felt like a big bruise. My bra hurt for me to wear, but I wore it anyway because I don't like to go braless in the daytime. I'm somewhat well-endowed and going bra-free is just... well, incredibly noticeable. I finally gave in and took two Vicodin pills. I didn't want to, but I had stuff to do today (I didn't get half of it done, but it wasn't end-of-the-world important). About an hour later, I felt better. More like "flu-achy" and less like "Pull off my skin and scream" achy. Two 5/500 Vicodin pills muted the pain, but it made me feel the itching under the skin in my hands. At the moment, I'm two hours past three Vicodin pills and an hour past one muscle relaxer (10 mgs) and while I'm feeling pretty good overall, I still have the itching under my skin. As the Vicodin wore off after a few hours, the pain didn't come rushing back. Instead, I felt my muscles tightening. You know that feeling you get after you've sat at your desk, sort of hunched over, working on a project for a few hours? Its like that, but there's a constant pulling and a slight burning feeling in the muscles. And it isn't just in my neck or my shoulders, its all over. From my fingertips to my toes. I just happen to feel it in my shoulders and neck first.
It wasn't a total loss today. I took advantage of my slight Vicodin buzz and the easing of my pain levels to put my dog Gypsy in a headlock and force her to be in my photo of the day. I'm doing a 365 Days Self-Portrait project. The gist of it is that you take a photo a day- every day- of yourself. It can be a portrait or abstract or anything, as long as YOU take the photo and YOU are in the photo. Even just a fingertip. I've done two fingertip photos (in the same week). I like those because when people do them, they're damn near playful. Mine was, anyway. But Gypsy, my German Shepherd, hates the camera. It comes from my near-constant cataloging of her life with a little box with a bright and annoying flashy light on it. She always turns away at the last moment. I take great photos without a flash, but she's having none of it. I managed to get four shots of Gypsy in various types of choke-holds for the camera. And because I can, and because it makes me feel as if I've accomplished something, I share them now. Three were rejects and one was my submission. My daughter chose the submission because she said it was funny.
And here's the submission that Christine chose because she thought it was funny. Gypsy was watching people through the trees and I sort of popped up behind her for the photo.
And because I mentioned it- here's my first "fingertip" photo. My mouse pad is the map of the world with water droplets.
Yes, my muscles ache.
Yes, my body is sore.
Those short statements do not even touch the depth of how much things ache or how sore things can be. I was tired today from taking a shower. The very act of standing in the shower and moving my arms around my body as I washed tired me out. Sitting on my bed and holding a blow-dryer in one hand and running my fingers through my damp hair... well, it made me tired too. But at least I was sitting down and I had my elbow resting on my leg to ease that muscle tiredness.
Pulling my clothes on caused my skin to send little jolt-y electrical-y shocks through the muscles underneath. I didn't put shoes on again today- which I know I'll regret in the morning, but for today it just hurt too much. The very thought of trying to lift my feet with the weight of my Docs on them was enough to make me tolerate the pain in my spurred feet. I considered putting on my Converse sneakers, but that would have meant I would have to stand up and find socks, then sit down and put the shoes and socks on my feet. And I just didn't want things touching my feet today.
Today was one of those days where I felt like a big bruise. My bra hurt for me to wear, but I wore it anyway because I don't like to go braless in the daytime. I'm somewhat well-endowed and going bra-free is just... well, incredibly noticeable. I finally gave in and took two Vicodin pills. I didn't want to, but I had stuff to do today (I didn't get half of it done, but it wasn't end-of-the-world important). About an hour later, I felt better. More like "flu-achy" and less like "Pull off my skin and scream" achy. Two 5/500 Vicodin pills muted the pain, but it made me feel the itching under the skin in my hands. At the moment, I'm two hours past three Vicodin pills and an hour past one muscle relaxer (10 mgs) and while I'm feeling pretty good overall, I still have the itching under my skin. As the Vicodin wore off after a few hours, the pain didn't come rushing back. Instead, I felt my muscles tightening. You know that feeling you get after you've sat at your desk, sort of hunched over, working on a project for a few hours? Its like that, but there's a constant pulling and a slight burning feeling in the muscles. And it isn't just in my neck or my shoulders, its all over. From my fingertips to my toes. I just happen to feel it in my shoulders and neck first.
It wasn't a total loss today. I took advantage of my slight Vicodin buzz and the easing of my pain levels to put my dog Gypsy in a headlock and force her to be in my photo of the day. I'm doing a 365 Days Self-Portrait project. The gist of it is that you take a photo a day- every day- of yourself. It can be a portrait or abstract or anything, as long as YOU take the photo and YOU are in the photo. Even just a fingertip. I've done two fingertip photos (in the same week). I like those because when people do them, they're damn near playful. Mine was, anyway. But Gypsy, my German Shepherd, hates the camera. It comes from my near-constant cataloging of her life with a little box with a bright and annoying flashy light on it. She always turns away at the last moment. I take great photos without a flash, but she's having none of it. I managed to get four shots of Gypsy in various types of choke-holds for the camera. And because I can, and because it makes me feel as if I've accomplished something, I share them now. Three were rejects and one was my submission. My daughter chose the submission because she said it was funny.
And here's the submission that Christine chose because she thought it was funny. Gypsy was watching people through the trees and I sort of popped up behind her for the photo.
And because I mentioned it- here's my first "fingertip" photo. My mouse pad is the map of the world with water droplets.
Saturday, July 31, 2010
I don't know if the Disabled Guy still thinks I'm "exaggerating the pain" after today.
As I've mentioned, I don't like to take my Vicodin during the day. I get a certain amount of pills per month from the VA. They give me enough to have a few extra, but I don't like to get into the habit of daytime pain meds. There are exceptions, of course. If I have to go grocery shopping for more than a couple items. If I have to go to Wal-Mart, which I hate doing, I take daytime pills. I hate Wal-Mart not only because they're a globally-dominating conglomerate that seeks to stomp out every bit of originality from a town, but because EVERYTHING is so far apart. I can't just pop in and get a bottle of human shampoo and some dog treats. I have to go from one end of the store to the other. And deity forbid I order photos... that's all the way at the back of the store.
So yeah, not thrilled with having to go to Wal-Mart.
Thursday, we did the big monthly grocery shop. That's two pills around ten or eleven AM. That evening, I took my usual six PM pills (followed by the muscle relaxers at 730). Then, on Friday, it was payday and Wal-Mart day. Two pills as we leave the house, so they'll be in my system good by the time I reach Wal-Mart. And of course, the six PM pills.
Today, I didn't plan on leaving the house. I didn't even put shoes on- which I'm now regretting, because when I go shoeless, my feet are sore. That's my own fault. I made Chef Boy-R-Dee pizza for dinner tonight. Which means I had to mix the dough by hand, mush it into the pans by hand... you see where I'm going? And the pizza is so messy (I do the thick crust method) we use forks to eat it. I took my six PM pills ten minutes late.
About ten minutes afterwards, what felt like... well, I can only describe it as static electricity on high crackled through my arm, down through my now-sore wrist and into my hand. Simultaneously, the same sensation jolted through my right leg, down to my foot. As this static-crackling feeling is going on, I had sharp, stabbing pain that throbbed through my hand, near my knuckles and in my foot, near the ball of the foot. I couldn't get it to stop. It sort of freaked me out. And the pain. There are no exclamations I could utter that would convey how it felt. I clutched the arm of my computer chair with my left hand. I gasped for breath and clenched my eyes to keep the tears from flowing. I curled my right arm up, cradling my hand against my chest (well, between my breasts, it sort of happened that way). My hand looked claw-like and I was afraid to bend or straighten my fingers. I know I was doing some kind of writhing thing, because I was trying to use my left foot to "push" the throbbing pain out of the right foot.
I don't know how long this went on. It couldn't have been too long, because NASCAR was on and it was on commercials. Had I been making that much noise, the spouse would have gotten pissed off and he didn't. He actually asked me what was wrong. I couldn't explain it.
I didn't actually cry, but I did have tears fall, but it was more like my eyes were too full to hold them back, if that makes sense. Here I am, an hour and a half later, with a residual ache in my wrist and hand- it feels slightly hot, like a low-grade burning feeling (which I've had many, many times before) and the parts of my foot that typically ache on those days I go without shoes are also aching, but they seem a little more tender than usual. I'm not sure if that's actual tenderness or if my brain is just more aware of it now.
I've had my hand hurt before. I've had my arm hurt. I've had my leg and my foot hurt. But I've never had all of them, simultaneously, jolt in the same way.
On top of all that, I've spent most of the day with the itchy skin... I considered taking just one Vicodin to settle the itch down. And no, Benadryl won't work. A lotion won't work. The itch is inside, under the skin. Like there are a thousand bored spiders, all twiddling their spider thumbs at the same time.
So now I'm not so sure if the Disabled Guy thinks I'm exaggerating anymore. Of course, I'm not going to have a spell like that deliberately just to prove it to him. In fact, I'd like to live pain-free for a while. I don't even remember how that felt.
So yeah, not thrilled with having to go to Wal-Mart.
Thursday, we did the big monthly grocery shop. That's two pills around ten or eleven AM. That evening, I took my usual six PM pills (followed by the muscle relaxers at 730). Then, on Friday, it was payday and Wal-Mart day. Two pills as we leave the house, so they'll be in my system good by the time I reach Wal-Mart. And of course, the six PM pills.
Today, I didn't plan on leaving the house. I didn't even put shoes on- which I'm now regretting, because when I go shoeless, my feet are sore. That's my own fault. I made Chef Boy-R-Dee pizza for dinner tonight. Which means I had to mix the dough by hand, mush it into the pans by hand... you see where I'm going? And the pizza is so messy (I do the thick crust method) we use forks to eat it. I took my six PM pills ten minutes late.
About ten minutes afterwards, what felt like... well, I can only describe it as static electricity on high crackled through my arm, down through my now-sore wrist and into my hand. Simultaneously, the same sensation jolted through my right leg, down to my foot. As this static-crackling feeling is going on, I had sharp, stabbing pain that throbbed through my hand, near my knuckles and in my foot, near the ball of the foot. I couldn't get it to stop. It sort of freaked me out. And the pain. There are no exclamations I could utter that would convey how it felt. I clutched the arm of my computer chair with my left hand. I gasped for breath and clenched my eyes to keep the tears from flowing. I curled my right arm up, cradling my hand against my chest (well, between my breasts, it sort of happened that way). My hand looked claw-like and I was afraid to bend or straighten my fingers. I know I was doing some kind of writhing thing, because I was trying to use my left foot to "push" the throbbing pain out of the right foot.
I don't know how long this went on. It couldn't have been too long, because NASCAR was on and it was on commercials. Had I been making that much noise, the spouse would have gotten pissed off and he didn't. He actually asked me what was wrong. I couldn't explain it.
I didn't actually cry, but I did have tears fall, but it was more like my eyes were too full to hold them back, if that makes sense. Here I am, an hour and a half later, with a residual ache in my wrist and hand- it feels slightly hot, like a low-grade burning feeling (which I've had many, many times before) and the parts of my foot that typically ache on those days I go without shoes are also aching, but they seem a little more tender than usual. I'm not sure if that's actual tenderness or if my brain is just more aware of it now.
I've had my hand hurt before. I've had my arm hurt. I've had my leg and my foot hurt. But I've never had all of them, simultaneously, jolt in the same way.
On top of all that, I've spent most of the day with the itchy skin... I considered taking just one Vicodin to settle the itch down. And no, Benadryl won't work. A lotion won't work. The itch is inside, under the skin. Like there are a thousand bored spiders, all twiddling their spider thumbs at the same time.
So now I'm not so sure if the Disabled Guy thinks I'm exaggerating anymore. Of course, I'm not going to have a spell like that deliberately just to prove it to him. In fact, I'd like to live pain-free for a while. I don't even remember how that felt.
Thursday, July 22, 2010
I Don't Have this Fibro thing worked out yet
One would think that by living with this pain for as long as I have, I'd "get it" a little more. Sure, I've only been diagnosed with fibromyalgia since June 28th, but I have lived with this pain for more than five years now. I suppose knowing what it is makes a difference.
Wednesday, I was so absolutely exhausted that I could barely function. I was sluggish and sore and my skin was tender. I was in that "giant bruise" phase for pain. I even took a nap! I woke up from that nap feeling worse than I did when I fell asleep. I even went to bed at my usual time and slept like normal- well, the new normal, on the muscle relaxers. Then, I woke up at my usual time, laid down on the really uncomfortable sofa for forty-five minutes (and slept for most of that time), then ate breakfast, did some online stuff, took care of the dogs and I went back to bed.
Where I slept for another two and a half hours. I dragged myself into the shower... dragged myself back to my room... Then I perked up a bit. And I felt okay all day. A little sore. Not too bad. I even had to leave the house and go out into the icky heat and humidity. I took my pain meds at 6 PM, like always. I took the muscle relaxer at 730 PM, the new "like always". And here I am, at nearly 1230 AM, still awake. I'm not the least bit tired or worn out now. I'm sore, of course. We should just say every day is sore, but varying levels of intensity.
For a couple of days, our weather was oppressively hot. Its hovered around 90 Fahrenheit with humidity in the 80% range. Walking outside is like walking into a slimy, wet, hot blanket. This evening- err, Thursday evening and even now- we had some severe thunderstorms roll through. That was around the time I should have been tired from the day itself, not to mention the enjoyable medicines I'm on. And here I am... awake... listening to the thunder and fending off the occasional dog. (they're afraid of the thunder. They're taking turns seeing who can get as close to me as possible without actually crawling on top of my head).
So far, I got this much: heat and humidity does not like Fibromyalgia. Or maybe Fibromyalgia doesn't like heat and humidity. Either way, Fibro is outnumbered two to one. Let's hope Fibro doesn't get it into his head to call on Arthur and Burr, the Itis boys, to even up the score.
Wednesday, I was so absolutely exhausted that I could barely function. I was sluggish and sore and my skin was tender. I was in that "giant bruise" phase for pain. I even took a nap! I woke up from that nap feeling worse than I did when I fell asleep. I even went to bed at my usual time and slept like normal- well, the new normal, on the muscle relaxers. Then, I woke up at my usual time, laid down on the really uncomfortable sofa for forty-five minutes (and slept for most of that time), then ate breakfast, did some online stuff, took care of the dogs and I went back to bed.
Where I slept for another two and a half hours. I dragged myself into the shower... dragged myself back to my room... Then I perked up a bit. And I felt okay all day. A little sore. Not too bad. I even had to leave the house and go out into the icky heat and humidity. I took my pain meds at 6 PM, like always. I took the muscle relaxer at 730 PM, the new "like always". And here I am, at nearly 1230 AM, still awake. I'm not the least bit tired or worn out now. I'm sore, of course. We should just say every day is sore, but varying levels of intensity.
For a couple of days, our weather was oppressively hot. Its hovered around 90 Fahrenheit with humidity in the 80% range. Walking outside is like walking into a slimy, wet, hot blanket. This evening- err, Thursday evening and even now- we had some severe thunderstorms roll through. That was around the time I should have been tired from the day itself, not to mention the enjoyable medicines I'm on. And here I am... awake... listening to the thunder and fending off the occasional dog. (they're afraid of the thunder. They're taking turns seeing who can get as close to me as possible without actually crawling on top of my head).
So far, I got this much: heat and humidity does not like Fibromyalgia. Or maybe Fibromyalgia doesn't like heat and humidity. Either way, Fibro is outnumbered two to one. Let's hope Fibro doesn't get it into his head to call on Arthur and Burr, the Itis boys, to even up the score.
Sunday, July 18, 2010
My body does not like the heat.
It never has, really. I lived in Georgia for four years and while I didn't absolutely die from the heat, I didn't like it. I tolerated it because I had no choice. I went out in that disgusting heat and humidity because I had to. Of course, it didn't do to me what it does to me now.
Now the heat and humidity drag me to the floor, moaning and wailing in such a pathetic way. I feel as though all I can do is lie there, quivering takes too much energy, so I just lay there while heat and humidity kick me in the teeth. Okay, that's not a good analogy. It doesn't really kick me in the teeth, it actually beats me with huge wet noodles till my body aches and I'm soaked with wet noodle water and sweat.
Sounds delightful, doesn't it?
I started taking the muscle relaxer (Cyclobenzaprine) just over two weeks ago. And I do feel a lot better now than I did even two weeks ago. I feel that I have more stamina than I've had in the last several months. The last few days, I haven't been completely drained. The pain has been touch and go, some days are good and some days have a spell where I don't feel so great.
The longer I'm exposed to heat and humidity, the worse I feel. I went to the Bristol Renaissance Faire on July 10th. I did pretty good- lasted till about 2 PM before I started to really feel bad. By 3 PM, I'd had enough and felt I'd drop any minute. I made my way back out to my trusty truck, unlaced all my garb (yes, I dress in garb) and sat with the AC on- directly blowing in my face, in fact. About ten minutes went by and I felt a lot better. My companions joined me shortly after and I took them back to their motel (Angus came up from Texas and he had a friend meet up with him from Michigan). In the motel I did a few tarot card readings for the friend and it was quite nice. The room was cool and I felt infinitely better by the time I had to get on the road for home.
I'm going to the faire again in two weeks with Ceej, my 17-year-old daughter. So, if I feel this much better now, in two weeks' time, I should feel even better.
Since I've been taking Cyclobenzaprine, I've been sleeping better. Before, I'd sleep a couple hours, wake up, sleep for an hour, get up for a couple hours, go back to bed for another hour or two. I felt like I was on the verge of sleep all the time. If I sat down to watch a movie, I would fall asleep. If I did anything other than sit straight up in this computer chair, I'd fall asleep. If I had to drive anywhere farther than across town, I loaded up with caffeine to get me through. Some nights, I'd stay awake. Not because I wanted to.
Now I fall asleep much easier and I stay asleep for a longer block of time. A good solid four hours, then I might wake up (note the time) and go back to sleep till it was time to get up. A few nights in there, I've actually slept from the time I fell asleep till my alarm went off.
And its been great! I enjoy this thing you all call "sleep". Its delightful! Why haven't I been doing this all along!?
And, if you have been following along in this thing called "my life", you'll know that sleeping better helps ease the pain related to Fibromyalgia.
I do have a problem though. My family. The disabled guy doesn't care much about anyone's pain. I just got up from here and asked him some questions about all this. As it turns out, he thinks I'm "blowing all up out of proportion". He thinks I'm exaggerating how I feel. He says: "You get up bitchin' every day." Well, that's not entirely true. I only complain when it reaches the point that I can't hold it in any longer. I don't exaggerate. And I certainly do not "wake up bitchin' every day."
After that disastrous conversation, I decided against asking the kids what they thought about this and the condition I'm in. I already know that one of my kids thinks I exaggerate and one of them acts as though I'm outright lying. The other one is sort of wrapped up in life events, so I'm not even going to bother.
Today was an okay day. I was tired- most likely from the heat- and my skin was only slightly achy. My muscles feel bruised too, but as long as I don't bump into anything, I'm okay. I'm a little more hurt and a bit flabbergasted that nobody in my family cares. Wow.
After almost six years, you'd think I'd be used to it by now.
Now the heat and humidity drag me to the floor, moaning and wailing in such a pathetic way. I feel as though all I can do is lie there, quivering takes too much energy, so I just lay there while heat and humidity kick me in the teeth. Okay, that's not a good analogy. It doesn't really kick me in the teeth, it actually beats me with huge wet noodles till my body aches and I'm soaked with wet noodle water and sweat.
Sounds delightful, doesn't it?
I started taking the muscle relaxer (Cyclobenzaprine) just over two weeks ago. And I do feel a lot better now than I did even two weeks ago. I feel that I have more stamina than I've had in the last several months. The last few days, I haven't been completely drained. The pain has been touch and go, some days are good and some days have a spell where I don't feel so great.
The longer I'm exposed to heat and humidity, the worse I feel. I went to the Bristol Renaissance Faire on July 10th. I did pretty good- lasted till about 2 PM before I started to really feel bad. By 3 PM, I'd had enough and felt I'd drop any minute. I made my way back out to my trusty truck, unlaced all my garb (yes, I dress in garb) and sat with the AC on- directly blowing in my face, in fact. About ten minutes went by and I felt a lot better. My companions joined me shortly after and I took them back to their motel (Angus came up from Texas and he had a friend meet up with him from Michigan). In the motel I did a few tarot card readings for the friend and it was quite nice. The room was cool and I felt infinitely better by the time I had to get on the road for home.
I'm going to the faire again in two weeks with Ceej, my 17-year-old daughter. So, if I feel this much better now, in two weeks' time, I should feel even better.
Since I've been taking Cyclobenzaprine, I've been sleeping better. Before, I'd sleep a couple hours, wake up, sleep for an hour, get up for a couple hours, go back to bed for another hour or two. I felt like I was on the verge of sleep all the time. If I sat down to watch a movie, I would fall asleep. If I did anything other than sit straight up in this computer chair, I'd fall asleep. If I had to drive anywhere farther than across town, I loaded up with caffeine to get me through. Some nights, I'd stay awake. Not because I wanted to.
Now I fall asleep much easier and I stay asleep for a longer block of time. A good solid four hours, then I might wake up (note the time) and go back to sleep till it was time to get up. A few nights in there, I've actually slept from the time I fell asleep till my alarm went off.
And its been great! I enjoy this thing you all call "sleep". Its delightful! Why haven't I been doing this all along!?
And, if you have been following along in this thing called "my life", you'll know that sleeping better helps ease the pain related to Fibromyalgia.
I do have a problem though. My family. The disabled guy doesn't care much about anyone's pain. I just got up from here and asked him some questions about all this. As it turns out, he thinks I'm "blowing all up out of proportion". He thinks I'm exaggerating how I feel. He says: "You get up bitchin' every day." Well, that's not entirely true. I only complain when it reaches the point that I can't hold it in any longer. I don't exaggerate. And I certainly do not "wake up bitchin' every day."
After that disastrous conversation, I decided against asking the kids what they thought about this and the condition I'm in. I already know that one of my kids thinks I exaggerate and one of them acts as though I'm outright lying. The other one is sort of wrapped up in life events, so I'm not even going to bother.
Today was an okay day. I was tired- most likely from the heat- and my skin was only slightly achy. My muscles feel bruised too, but as long as I don't bump into anything, I'm okay. I'm a little more hurt and a bit flabbergasted that nobody in my family cares. Wow.
After almost six years, you'd think I'd be used to it by now.
Monday, July 12, 2010
Fibromyalgia is a way of life forced upon the sufferer...
Since my scar story fell apart like so much crumbly cake, except not as delicious, I've sort of let this blog go.
But, two weeks ago, I was officially diagnosed with Fibromyalgia. I thought about it for a while and figured I could put this blog to good use again and start a personal account of my own adventures with fibromyalgia.
Maybe someone else who is going through what I went through to get to a proper diagnosis will read it and it will help them- or at the very least, they'll chuckle over it and they'll forget about the pain for those few minutes. So, in the next few days, I'll redo the banner and such, and start up talking about... well, me. And we all know how much I like to talk about ME!
They say: "write what you know"... and I know me!
Tentative title: "My Adventure's with Fibromyalgia"... which is somewhat lame. But hey, its a start. Till then, here are a couple links to my regular blog (meaning not the Conversations with the Disabled Guy, not Books are More Fun than Housework)...
~The blog written BEFORE the diagnosis~
And...
~The blog written AFTER the diagnosis~
Till then, here's a cute photo of Luna's puppies- this is Vato (renamed "Drake" by his new owners) and Wah-Lah!, who has no new name yet.
But, two weeks ago, I was officially diagnosed with Fibromyalgia. I thought about it for a while and figured I could put this blog to good use again and start a personal account of my own adventures with fibromyalgia.
Maybe someone else who is going through what I went through to get to a proper diagnosis will read it and it will help them- or at the very least, they'll chuckle over it and they'll forget about the pain for those few minutes. So, in the next few days, I'll redo the banner and such, and start up talking about... well, me. And we all know how much I like to talk about ME!
They say: "write what you know"... and I know me!
Tentative title: "My Adventure's with Fibromyalgia"... which is somewhat lame. But hey, its a start. Till then, here are a couple links to my regular blog (meaning not the Conversations with the Disabled Guy, not Books are More Fun than Housework)...
~The blog written BEFORE the diagnosis~
And...
~The blog written AFTER the diagnosis~
Till then, here's a cute photo of Luna's puppies- this is Vato (renamed "Drake" by his new owners) and Wah-Lah!, who has no new name yet.
Subscribe to:
Posts (Atom)