Let's take two days of being awakened at around 130 in the morning by the dogs incessantly barking. At what? I don't know. It could have been anything. Someone knocking on the door. The neighbors coming home from work and slamming their car door. A car driving by with a deep, pounding bass beat. A car alarm a block away. A moth farting in the next county. You all have seen their ears. They could pick up Radio-Free Europe on those things.
On those days, I would get up, come downstairs and then stay up for a couple hours, till it was close enough to the time to take my morning stay-alive pills and then go back to bed. One of those days, I slammed a good solid three hour nap. The other day I had a three hour nap, but it was broken into short naps.
Let us mix in some random stressful moments. Some stress of the mental kind and some of the physical kind. They were quick, but they were enough to get my stress levels up. And of course, the subsequent drop of said stress. (except for the standing on my feet for over an hour- as opposed to standing on my hands. Hey, I know people who can do that, so it isn't exactly that far-fetched!).
And for fun, let us throw in a few happy moments of adrenaline. (most notably, my daughter leaving for her trip to New York City).
Now, if this recipe wasn't already delicious, let us sprinkle it over the top with a weather change. How much of a weather change? Well, we'd been rocking the low to mid-fifties for days (that's in Fahrenheit, kids). And it was humid. Which is bad enough. But, on Wednesday, we started out at a solid 43° in the early AM. By the time Ceej had to be at the school for her pre-trip baggage check (around 4 PM), it had dropped to 25° with a wind chill of 14°. And it was alternating between snow, sleet, rain and back to snow.
The first day was bad enough. I was tired. I was sore. But it was nothing new. The second day, I was exhausted and even a bit more sore. My joints ached as well. My muscles were pained, but my joints were a dull throbbing ache.
Today, which is the third day, but not exactly included because I didn't get woke up at 130 in the morning, I am so exhausted I can feel it to my bones. The physical tiredness, the mental stress has worn me down. The pain is everywhere. Everything hurts. My muscles are burning with pain. My feet are screaming in pain and the skin is hot to touch. I feel like my feet are on fire. My bones ache. My joints are a step above that "ache" and are included in that burning pain with my muscles. The bones in my feet feel like they're trying to escape through my skin. Oh, and my skin... yeah, itching. Itching like an addict going through detox. But the itching isn't enough. Whatever touches my skin is causing what's under it to hurt. My shirt across my shoulders? Yup. The waistband on my yoga pants? Yup. The chair on my ass and thighs? Definitely. The foam pad thingy I rest my wrists on to type? You already know the answer.
I can't even rub my hands together in an effort to ease the pain or release the tension. I keep forgetting and I interlace my fingers and grasp... only to break a speed record separating them. I have some lovely and understanding online friends and they offer virtual hugs and the very thought of being hugged right now makes me cringe. How much would that hurt me?
Vicodin hasn't touched it. (I'm almost three hours into the Vicodin). I'm two weeks away from a follow-up with my fibro doctor and I don't know how well this is going to go. I can't say whether this is a medicine failure or if it's just a flareup. The problem is the weather. Springtime weather changes just thrown in on top of a cocktail of other triggers. I can say that I'm exhausted to the bone. Have you ever built a fence? Dug post holes? That's how I feel. And there is no fence around my house to indicate that I've worked hard at all. That isn't fair. If I'm going to hurt this much, there should at least be something worthwhile to look at, right?
This recipe isn't very tasty at all. I think we should fire the chef.
Thursday, March 24, 2011
Friday, March 11, 2011
Thursday was such a great day...
I had to go to the doctor on Thursday, March 10th. It started out like usual- with me dragging myself upright and then to the bathroom and on downstairs. I took a fitful nap then had to go to the doctor. Just a regular follow-up visit. My next fibro follow-up is in April.
After the hour-long drive to the hospital, I zoomed in. I walked right through that car park and down that long-ass hallway just fine. I walked like a normal person. I had to make myself slow down because despite the legs being willing, my cardiovascular system isn't quite as ready. But I did good. I was zipping all over the place.
I walked like a normal person. I did things like a normal person. I was in a good mood and I felt good. I had a new lab tech to take my blood and I did my usual... as in, I bombarded him with my enthusiasm and acted like my typical blabbery self that sometimes makes Shawn wish I'd be stricken with laryngitis. I tell every new lab guy that my veins (arteries? Whichever they use) roll. They hide, they roll, they collapse. It has been this way forever. Even when I was skinny. So, if he failed at finding them in my arm, it wasn't his fault. But I harassed him all the while he was digging around in my arm. Not the smartest thing, looking back, because he could have easily made it more painful.
But, I bet he remembers me next month when I go in.
My appointment went well- and the best part is, this was finally an appointment where my pain wasn't an issue. Mostly because now that I've been officially diagnosed with fibro, the rheumatology clinic takes care of it. But, I wasn't in pain enough to be bothered! And after zipping all over the hospital, I drove the hour home and went to the grocery store. Ceej called me as I was almost there and told me she'd meet me there (she needed some things too, and even paid with most of them with her own money). But, I texted her with "I'm here and going in" and was almost done by the time she came into the store. Because I was walking normally.
Like a normal person.
So, yay!
Till this morning.
I slept awful last night. Sometime after midnight, my skin started itching with a fiery, poking itch. It still itches and I'm two doses down for three of my Gabapentin. My muscles feel like they're burning, like they're about to burst out of my skin. And my skin feels like it is on fire. Everything aches. My hands feel hot, but when I touch the skin, it feels cold. From the balls of my feet to the part where my neck meets my skull. The entire body in between hurts.
And exhausted. I'm so tired. Literally, twice today, while I was out running errands, I just wanted to lie down in a ball and sleep. I never have that urge. But I actually looked at the floor in the two places of business I was in and convinced myself that if I were to lie down there, I'd need help getting up and that would be embarrassing. And I hate to be embarrassed in public. At least, without some compensation or at least to give something back in a comedic way. There would have been no comedy if I had chosen to curl into a ball at the insurance agent's office or in the lobby of the credit union while I waited for the notary.
I know that today is the result of yesterday. I also know that tomorrow will probably be worse. I'm at least, expecting the worst and hoping for the best.
Or at least some comedy relief from it all. Because what good is it if we can't laugh at it?
Edited to add: hours later...
I ended up taking a nap that did no good at all. I feel worse than before. And here we are, an hour after Vicodin and moments before my third Gabapentin of the day... and I'm still exhausted. I seriously feel like I might go to bed soon. It isn't even 7 PM yet.
After the hour-long drive to the hospital, I zoomed in. I walked right through that car park and down that long-ass hallway just fine. I walked like a normal person. I had to make myself slow down because despite the legs being willing, my cardiovascular system isn't quite as ready. But I did good. I was zipping all over the place.
I walked like a normal person. I did things like a normal person. I was in a good mood and I felt good. I had a new lab tech to take my blood and I did my usual... as in, I bombarded him with my enthusiasm and acted like my typical blabbery self that sometimes makes Shawn wish I'd be stricken with laryngitis. I tell every new lab guy that my veins (arteries? Whichever they use) roll. They hide, they roll, they collapse. It has been this way forever. Even when I was skinny. So, if he failed at finding them in my arm, it wasn't his fault. But I harassed him all the while he was digging around in my arm. Not the smartest thing, looking back, because he could have easily made it more painful.
But, I bet he remembers me next month when I go in.
My appointment went well- and the best part is, this was finally an appointment where my pain wasn't an issue. Mostly because now that I've been officially diagnosed with fibro, the rheumatology clinic takes care of it. But, I wasn't in pain enough to be bothered! And after zipping all over the hospital, I drove the hour home and went to the grocery store. Ceej called me as I was almost there and told me she'd meet me there (she needed some things too, and even paid with most of them with her own money). But, I texted her with "I'm here and going in" and was almost done by the time she came into the store. Because I was walking normally.
Like a normal person.
So, yay!
Till this morning.
I slept awful last night. Sometime after midnight, my skin started itching with a fiery, poking itch. It still itches and I'm two doses down for three of my Gabapentin. My muscles feel like they're burning, like they're about to burst out of my skin. And my skin feels like it is on fire. Everything aches. My hands feel hot, but when I touch the skin, it feels cold. From the balls of my feet to the part where my neck meets my skull. The entire body in between hurts.
And exhausted. I'm so tired. Literally, twice today, while I was out running errands, I just wanted to lie down in a ball and sleep. I never have that urge. But I actually looked at the floor in the two places of business I was in and convinced myself that if I were to lie down there, I'd need help getting up and that would be embarrassing. And I hate to be embarrassed in public. At least, without some compensation or at least to give something back in a comedic way. There would have been no comedy if I had chosen to curl into a ball at the insurance agent's office or in the lobby of the credit union while I waited for the notary.
I know that today is the result of yesterday. I also know that tomorrow will probably be worse. I'm at least, expecting the worst and hoping for the best.
Or at least some comedy relief from it all. Because what good is it if we can't laugh at it?
Edited to add: hours later...
I ended up taking a nap that did no good at all. I feel worse than before. And here we are, an hour after Vicodin and moments before my third Gabapentin of the day... and I'm still exhausted. I seriously feel like I might go to bed soon. It isn't even 7 PM yet.
Monday, March 7, 2011
365 Self-portraits- a photo a day of myself.
As most of you know- because most of you are friends on Facebook- I do a 365days self-portrait project. I just finished my first year (never missed a day, natch!) and I'm twenty-two days into my second year. I wasn't sure I was going to keep going after I finished year one, but popular demand (okay, one person) requested that I continue. I was thinking about taking a week off, but I started on Valentine's Day and I figured if I kept going on that date, at least it would mean something to me again. The rules are simple- Take one photo a day, of yourself, every day for a year. And it doesn't matter how you're in it- a reflection, a fingertip, a portrait... and since we're a digital world, we can do what we want in "post production". I've done a few special effects and things called "cloning" and diptychs and triptychs... and I've learned loads about my camera. But I digress...
Today's submission turned into a blog post on its own. I'm in several groups on Flickr (where I do the 365days thing) and one of them is called "Tell Us More..." where your picture tells a story. So, sometimes, I'll get complicated and long in my photo caption. And that's what I did today.
Here is a copy/paste of my photo caption and the photo for today is below. If you've read my blog, you're not going to learn anything new (I don't think, anyway).
*******
I have fibromyalgia. And like most of you, I thought it was a made-up disease that people just used to label something they didn't understand, but guess what, it's real and it bloody well hurts. It took five years, total, to get a diagnosis- two of those years were spent with an awful doctor who didn't care about anything other than maintenance of my other health stuff (like blood pressure and such). I could turn this into a blog post about how he blamed everything on my weight, except for the fact my weight was fine till the pain set in, but I won't. This is about fibro and it hurts. It turns out, many of my family members have the same problem. In the late 80s, my mother and her four siblings had a biopsy done to try and identify the "unnamed nerve disorder" they all had. My cousin (older than I am) also had the biopsy. All of them had the same "unnamed nerve disorder". It was described as "the nerves attacking the body..." All the biopsies showed was that they had the same thing. I've never had a biopsy, but I have a real doctor's diagnosis. As did my cousin, who was six months younger than me. (she passed away almost two years ago- not from fibro, because it doesn't kill you).
On a good day, my pain level is at a 3 or 4 (on that 1 to 10 pain scale). And if the pain alone wasn't enough- because I can deal with pain, I have been for so long- I'm exhausted. And I'm not saying "tired", I'm exhausted. You know how you feel at the end of a hard day's work? That is how I feel most of the time. I feel like I've just walked five miles or chopped wood for two hours. And all I've done is get out of bed and come downstairs.
On bad days, my pain brings tears to my eyes. On those days, my physical exhaustion is so bad I have trouble sitting upright. My skin hurts- you know when you're coming down with the flu and the water from the shower hurts your skin? That's how it hurts. If I'm lucky, that's all I have with my skin because sometimes, my skin will itch. From inside. Scratching does nothing but make it hurt. My bad days are fewer now that I've been getting treated for this very real, very painful disorder.
Most of the time, though, my days are between the good and bad. Like today. I'm up, I'm showered and dressed, but my clothes hurt my skin. It took me almost two hours to get showered, blow-dried, and then dressed. I had to rest between each task. I took this photo between the blow-drying and the getting dressed. (I was looking at the TV, which had an episode of "Law & Order CI" I hadn't seen all the way through).
At the moment (as I type this), I'm resting at my desk (which can be tiring) then I'm going to make something for lunch, take my midday fibro pill and then go run errands. And I'll be down for the count when I get back because that might just push my middle-day to a bad-day.
But for now- I'm up. I'm dressed. I've got my boots on. And I'd rather be under that soft fleece blanket. I gave the disabled guy a bunch of crap about that blanket. He got it for me in October, while he was in NC and then waited till Christmas to give it to me. He gave me two- this one (with a wolf on it) and another with an eagle on it. I told him he could have the eagle one for the living room- because that's what he wanted all along. I also told him he could have just given them to me when he got back from NC. I love this blanket because its soft and it is just the right weight to lay over me without hurting me. And yes, I'm naked under this blanket because that's the best way to be with fibro and a soft blanket.
*****
Today's submission turned into a blog post on its own. I'm in several groups on Flickr (where I do the 365days thing) and one of them is called "Tell Us More..." where your picture tells a story. So, sometimes, I'll get complicated and long in my photo caption. And that's what I did today.
Here is a copy/paste of my photo caption and the photo for today is below. If you've read my blog, you're not going to learn anything new (I don't think, anyway).
*******
I have fibromyalgia. And like most of you, I thought it was a made-up disease that people just used to label something they didn't understand, but guess what, it's real and it bloody well hurts. It took five years, total, to get a diagnosis- two of those years were spent with an awful doctor who didn't care about anything other than maintenance of my other health stuff (like blood pressure and such). I could turn this into a blog post about how he blamed everything on my weight, except for the fact my weight was fine till the pain set in, but I won't. This is about fibro and it hurts. It turns out, many of my family members have the same problem. In the late 80s, my mother and her four siblings had a biopsy done to try and identify the "unnamed nerve disorder" they all had. My cousin (older than I am) also had the biopsy. All of them had the same "unnamed nerve disorder". It was described as "the nerves attacking the body..." All the biopsies showed was that they had the same thing. I've never had a biopsy, but I have a real doctor's diagnosis. As did my cousin, who was six months younger than me. (she passed away almost two years ago- not from fibro, because it doesn't kill you).
On a good day, my pain level is at a 3 or 4 (on that 1 to 10 pain scale). And if the pain alone wasn't enough- because I can deal with pain, I have been for so long- I'm exhausted. And I'm not saying "tired", I'm exhausted. You know how you feel at the end of a hard day's work? That is how I feel most of the time. I feel like I've just walked five miles or chopped wood for two hours. And all I've done is get out of bed and come downstairs.
On bad days, my pain brings tears to my eyes. On those days, my physical exhaustion is so bad I have trouble sitting upright. My skin hurts- you know when you're coming down with the flu and the water from the shower hurts your skin? That's how it hurts. If I'm lucky, that's all I have with my skin because sometimes, my skin will itch. From inside. Scratching does nothing but make it hurt. My bad days are fewer now that I've been getting treated for this very real, very painful disorder.
Most of the time, though, my days are between the good and bad. Like today. I'm up, I'm showered and dressed, but my clothes hurt my skin. It took me almost two hours to get showered, blow-dried, and then dressed. I had to rest between each task. I took this photo between the blow-drying and the getting dressed. (I was looking at the TV, which had an episode of "Law & Order CI" I hadn't seen all the way through).
At the moment (as I type this), I'm resting at my desk (which can be tiring) then I'm going to make something for lunch, take my midday fibro pill and then go run errands. And I'll be down for the count when I get back because that might just push my middle-day to a bad-day.
But for now- I'm up. I'm dressed. I've got my boots on. And I'd rather be under that soft fleece blanket. I gave the disabled guy a bunch of crap about that blanket. He got it for me in October, while he was in NC and then waited till Christmas to give it to me. He gave me two- this one (with a wolf on it) and another with an eagle on it. I told him he could have the eagle one for the living room- because that's what he wanted all along. I also told him he could have just given them to me when he got back from NC. I love this blanket because its soft and it is just the right weight to lay over me without hurting me. And yes, I'm naked under this blanket because that's the best way to be with fibro and a soft blanket.
*****
Thursday, March 3, 2011
COMING SOON! *Please turn off all cellular devices*
IN A WORLD WHERE SLEEP IS ELUSIVE AND A PAIN-FREE EXISTENCE IS A MERE DREAM, ONE WOMAN DRAGS HERSELF FORWARD AND OUT OF BED!
*explosion, leaping from roof building*
"I'M TOO OLD FOR THIS SHiiii-"
STARRING MEL GIBSON AS MCFALL FIBROALGEBRA! "You think you're fine, but you're NOT! I will not let you lead a normal existence!"
KEVIN SPACEY AS SIR VICODIN! "I'm here to help you. I won't work completely, but I'll do the best that I can."
AND INTRODUCING, PAHZ AS "ONE WOMAN"! "Gravity hurts so much!"
ACTION! "My bones feel like they're trying to escape through my skin!"
TERRIFYING THRILLS: "It's like there are a million hairy-legged spiders trying to crawl out through my pores!"
DRAMA! "I could barely move and I fought back tears."
COMEDY! "It feels like I'm being pulled to the ground by a weak, yet tenacious Munchkin."
WATCH ONE WOMAN'S FIGHT WITH AN UNSEEN FOE! SEE HER STRUGGLE WITH EVERYDAY TASKS!
*loosens laces on her boots. Tugs repeatedly to get boot onto her foot. Pauses, takes a deep breath. Finally pulls boot on and sits back to breathe*
CRY WITH HER! "WHY!? WHY!!?? WHHHYYYYYY!!???"
Music from: Shake Hands With Danger Radio
SPECIAL GUEST APPEARANCES BY: Gregg the girl dog with a boy name. Gypsy the people hater. Luna and her current litter of puppies. Bruno and Jasper, AND: THE DISABLED GUY!
COMING SOON!!
*explosion, leaping from roof building*
"I'M TOO OLD FOR THIS SHiiii-"
STARRING MEL GIBSON AS MCFALL FIBROALGEBRA! "You think you're fine, but you're NOT! I will not let you lead a normal existence!"
KEVIN SPACEY AS SIR VICODIN! "I'm here to help you. I won't work completely, but I'll do the best that I can."
AND INTRODUCING, PAHZ AS "ONE WOMAN"! "Gravity hurts so much!"
ACTION! "My bones feel like they're trying to escape through my skin!"
TERRIFYING THRILLS: "It's like there are a million hairy-legged spiders trying to crawl out through my pores!"
DRAMA! "I could barely move and I fought back tears."
COMEDY! "It feels like I'm being pulled to the ground by a weak, yet tenacious Munchkin."
WATCH ONE WOMAN'S FIGHT WITH AN UNSEEN FOE! SEE HER STRUGGLE WITH EVERYDAY TASKS!
*loosens laces on her boots. Tugs repeatedly to get boot onto her foot. Pauses, takes a deep breath. Finally pulls boot on and sits back to breathe*
CRY WITH HER! "WHY!? WHY!!?? WHHHYYYYYY!!???"
Music from: Shake Hands With Danger Radio
SPECIAL GUEST APPEARANCES BY: Gregg the girl dog with a boy name. Gypsy the people hater. Luna and her current litter of puppies. Bruno and Jasper, AND: THE DISABLED GUY!
COMING SOON!!
Tuesday, March 1, 2011
What sweet hell is this? It feels like last June...
June 28, 2010, I was officially diagnosed with fibro and a few weeks later, I got the first pills in the mail. Shortly after I started taking those pills (Cyclobenzaprine), I started to feel better. And of course, those pills started to be less efficient and they switched the pills to the current ones- Gabapentin.
I've been having a lot of good days. I feel better, I sleep pretty good now- not great, but way better than I did a year ago. Every once in a while, I have a bad day. But most days are tolerable. In fact, I was telling the people at the eye store- yeah, the eye store, shut up, I've had my drugs- yesterday about fibro. Ceej had to get new glasses and was doing her usual song-and-dance about finding frames. I told them (hey, they asked because they know us there) that my tolerable days are around a four on that pain scale. Tear-inducing days I'd call a ten. Really good days are two. I haven't had a pain-free day in far too many years. I can't even remember what pain-free feels like.
Well, today is one of those bad days. I was almost in tears. I hate that word- "almost". I didn't cry because whenever the tears would start, I'd clench my eyes closed and stop moving till the urge to cry went away. I woke up feeling this shitty today. I spent most of the night being either shoved out of bed or having the back of my head snored at. (the disabled guy's snoring is comparable to a lawnmower- not an exaggeration). I finally got out of bed at 4 AM instead of trying to wrestle my way back onto the sliver of mattress that is my side of the bed.
Everything aches. Everything. My skin hurts, my muscles are sore. I have the trademark "flu-like" symptoms. I also feel like my muscles are being pulled tight. My legs hurt so much that it feels like my bones are trying to escape through my skin. Sitting down feels better, not much though. And nothing is making this feel better. I've been taking my pills directly on schedule. There's no reason for this day. My clothes made me hurt.
I suppose the bright side to this is that my skin isn't itchy. At least not like it has been before. That whole "a thousand hairy-legged spiders trying to claw their way out through my pores" itchy.
I hate to do it, but I'm going to skip my walk tomorrow. Especially if I wake up feeling like this again. I'd hate to get down the street and have to call home for a ride. How lame is that? I could probably just wave my arms and call out in a loud voice for a ride home.
In other lame news, for some reason, all the bad skin I didn't get in high school has come to visit me in my forties. I don't know whose idea it was for this to suddenly appear ON MY FACE, but this should stop, seriously. Because of this sudden onslaught of High School Freshman Face, my 365days self-portraits have taken an adult turn. That's right, it is Cleavage Week on my 365days. My cleavage never lets me down. Even on bad days. (also, I checked online, it doesn't seem to be a side effect from the Gabapentin).
I have no idea what is going on. I don't know if the weather is changing or what. But I do not like this. Who would?
I've been having a lot of good days. I feel better, I sleep pretty good now- not great, but way better than I did a year ago. Every once in a while, I have a bad day. But most days are tolerable. In fact, I was telling the people at the eye store- yeah, the eye store, shut up, I've had my drugs- yesterday about fibro. Ceej had to get new glasses and was doing her usual song-and-dance about finding frames. I told them (hey, they asked because they know us there) that my tolerable days are around a four on that pain scale. Tear-inducing days I'd call a ten. Really good days are two. I haven't had a pain-free day in far too many years. I can't even remember what pain-free feels like.
Well, today is one of those bad days. I was almost in tears. I hate that word- "almost". I didn't cry because whenever the tears would start, I'd clench my eyes closed and stop moving till the urge to cry went away. I woke up feeling this shitty today. I spent most of the night being either shoved out of bed or having the back of my head snored at. (the disabled guy's snoring is comparable to a lawnmower- not an exaggeration). I finally got out of bed at 4 AM instead of trying to wrestle my way back onto the sliver of mattress that is my side of the bed.
Everything aches. Everything. My skin hurts, my muscles are sore. I have the trademark "flu-like" symptoms. I also feel like my muscles are being pulled tight. My legs hurt so much that it feels like my bones are trying to escape through my skin. Sitting down feels better, not much though. And nothing is making this feel better. I've been taking my pills directly on schedule. There's no reason for this day. My clothes made me hurt.
I suppose the bright side to this is that my skin isn't itchy. At least not like it has been before. That whole "a thousand hairy-legged spiders trying to claw their way out through my pores" itchy.
I hate to do it, but I'm going to skip my walk tomorrow. Especially if I wake up feeling like this again. I'd hate to get down the street and have to call home for a ride. How lame is that? I could probably just wave my arms and call out in a loud voice for a ride home.
In other lame news, for some reason, all the bad skin I didn't get in high school has come to visit me in my forties. I don't know whose idea it was for this to suddenly appear ON MY FACE, but this should stop, seriously. Because of this sudden onslaught of High School Freshman Face, my 365days self-portraits have taken an adult turn. That's right, it is Cleavage Week on my 365days. My cleavage never lets me down. Even on bad days. (also, I checked online, it doesn't seem to be a side effect from the Gabapentin).
I have no idea what is going on. I don't know if the weather is changing or what. But I do not like this. Who would?
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