Tuesday, January 24, 2012

About falling- not in love, but actually falling...

I have yet to take a tumble in relation to my fibrofuckingmyalgia. I suppose it has taken its time fucking with me in other ways so it will save the falling for when I'm on concrete or out in public wearing a skirt so I can do the utmost damage or suffer the utmost in upskirting.

Over on the Facebook place, this link was posted about Fibrofuckingmyalgia and Falls. Now, while I haven't had a fall as the result of this stupid disease, something struck me...

This part:
Researchers say they found low muscle strength in the legs, low function in the knees and hips, and poor balance and agility in the fibromyalgia group.

My total knee replacement recovery was delayed by a then-undiagnosed fibrofuckingmyalgia. And now my thigh muscles are shot. I just assumed that my thighs were atrophied from the fact that they didn't do much other than hurt and bitch about their lives for over a year. The right side was worse than the left because I hurt my right knee way back in 2006. And in 2009, the left knee underwent cyborg assimilation surgery. As if that itself wasn't a bowl full of fairy farts and candy, that was when the undeniable and obvious signs of fibrofuckingmyalgia decided to raise its ugly head. Up till then, doctors- well, not doctors- just one in particular, would explain away the symptoms as to being from other problems. I'm not getting any younger, I'm overweight (that was his favorite, even when I wasn't overweight), osteoarthritis even when the pain was in the muscles and not the joints, thyroid disease that I've had since I was 18 and it was well-controlled and monitored (by him, no less!), and stress...

But, the knee replacement just shoved it all up into the face of the next doctor I had. By then, I'd taken to making lists and taking them with me to my doctor visits. But this isn't about that...

My leg muscles are shot and no matter what I do, they just don't build back up. And now I know why it has been so hard. Back in the day, I used to cycle. A lot. And that's a great way to build up one's legs. Except that my orthopedic surgeon specifically said not to bike ride. Stationary, sure. But not actual. And I have no place in my house in which to place a stationary bike (even if I could afford one). The doctor said that if I do decide to bike and then I wreck, I should "fling" myself to the right side so I don't damage my cyborg leg.

I thought about that and sort of chuckled. Then a while later, I remembered- in two year's of my biking life, I had three major accidents. And two of those were on safe bike paths. Where I live now has bike paths, but a lot of the "path" part is on the side of a road. So yeah... unless I build a special room for a stationary bike, the biking things isn't happening.

Saturday, January 14, 2012

It snowed on Thursday...

It snowed all day on Thursday, into the night and part of Friday.

I shoveled snow on Friday morning for about fifteen minutes. I cleared the walkway from the sidewalk to the porch, the porch and then back to the sidewalk...

I got about four sidewalk-squares cleared and I had to stop.

Saturday morning... well, you know how I compare that "hit by a truck" feeling to "being thrown from a horse" because I've never been hit by a truck, but I have been thrown from a horse?

Yeah, Saturday morning, I felt like I was thrown from a horse and that horse went to the U-Haul place and rented a big truck, came back and ran me over. Then he backed over me and drove away, neighing maniacally.

If you need me, I'll be over there on the sofa, wrapped up in a blanket, whining quietly and watching the "NCIS" marathon.

Thursday, January 12, 2012

Hey, now... we're not done reading your last short novel (the previous post)

Since the last blog post was SO long, I didn't get around to covering the stuff in the second link I posted.

Understanding Fibrofuckingmyalgia Pain

I whine a lot about fibro pain and feeling crappy and all that, but truly, I'm not in pain in the proper sense of agonizing pain that often. I'm more often in a state of extreme discomfort. Now, this might be something related to how I cope with pain or how my body processes pain. Obviously, I've been in pain for a long time. I had that five-ish years in pain where nobody believed I was in pain or didn't think I had any kind of disease, so I sort of had to work through the pain. So, yeah, pain is relative. While some folks collapse into a quivering pile of goo when their pain is at a four or a five on that ridiculous pain scale, others (like me) can live with four or five and completely function. And while that ridiculous pain scale says a nine or a ten should bring you to tears. I rarely cry at my pain. I would assume that when I've reached a point where tears are flowing, I've also had a long emotional day that's intensified everything inside and I either have to cry or I'll explode. Which would be messy.

Or, Nigel Tufnel cranked that shit up to eleven and it isn't even on the ridiculous pain scale.

Now about that pain scale... I'm just going to link you to this post by Hyperbole and a Half because Allie Brosh is brilliant and she has the best pain scale ever in her post. So, if you must- go read it and then come back. We'll wait.

Did you read it? Did you laugh so hard that you blew milk through your nose and you weren't even drinking milk at the time? Yeah, she's fucking awesome. If you're anything like me, you read that post, then started clicking out on other posts and you suddenly lost three hours of your day and your sides hurt from all the laughing.

Now, back to that fibro pain thing in the first link.

Types of Fibromyalgia Pain

The first 3 types of fibromyalgia pain are medically defined:

♫ Hyperalgesia
♫ Allodynia
♫ Painful Paresthesia

Okay, so the link describes Hyperalgesia as ""Hyper" means excess and "algesia" means pain. Hyperalgesia is the medical term for pain amplification in FMS. Our brains appear to take normal pain signals and "turn up the volume," making them more severe than they would normally be.

And we've covered that a little already.

That Allodynia sounds like someone's name from a Jane Austen story. The annoying sister-in-law to someone named Elizabeth or Jocelyn. But that's the painful skin thing I have to deal with. Some days are okay, I almost don't feel anything. Some days its mild and takes something like my fourteen pound Chihuahua's big-ass paw pressing down before it hurts. And some days, Nigel is at it again and cranks it up to eleven. Those days, even the softest fleece feels painful. On those days, I just want to be naked and in between two soft fleece blankets. The difference between a fleece hoodie hurting me and those fleece blankets not hurting me is this: when I'm wearing a hoodie, the pressure of it on my skin changes when I move. If I'm naked and between those fleece blankets, I'm not moving. I'm laying completely still on the bed, the only thing moving on me are my eye lids and one hand controlling the remote. Unlike the Forever Lazy and Snuggie people, I have no trouble maneuvering under a blanket.

And most of you know- at least those of you who actually read this or even actually have this- stress exacerbates things. My mother passed away recently and with a death in the family comes sympathy hugs. Every last one of them hurt like a motherfucker. "Sorry your mom's dead, pardon me while I inflict pain upon your body."

No, they didn't really do that. They did hug me, though, and it did hurt. But there are times in your life when you put on your big girl panties and deal with it. That goes for you men too. And you'll look lovely in big girl panties. Most of the people who were hugging me for sympathy didn't even know I have fibro or that I have this apparently rare issue with it.

That third one, "painful paresthesias"- the link describes it as so: Paresthesias are odd nerve sensations that can feel like crawling, tingling, burning, itching or numbness. Sometimes, these sensations can be painful. Paresthsias are also associated with peripheral neuropathy, chemotherapy drugs, multiple sclerosis and migraine.

I know you've heard... well, most of you have read it, a few of you have heard it- I've described it as a million hairy-legged spiders trying to escape through my pores. Scratching doesn't help, it just hurts. Rubbing through my clothes offers little relief. The days when I feel the most Allodynia are usually the days that the spiders are plotting their escape through my skin.

The author of that piece in the link goes on to describe four types of pain that she has as well. I have similar issues to hers, but I call mine different names. One of hers is the "Knife in the Voo-Doo doll" pain. I have that too, but I've just always called it a random, sharp, stabbing pain. Every so often, I get a sharp, stabbing pain in my wrist and I lose all strength in that hand. I've had that for years and years and it happens randomly and not at all associated with anything. But as I deal with this fucked-up mess of fibro, I wonder how related it all is. I could probably dig into the dusty recesses of my mind and remember other times as I went through my twenties and thirties that were probably early indicators of fibrofuckingmyalgia.

I also get a "hot spot"- I read that term somewhere. In my case, my "hot spot" is in my right hip. That pain is in the muscle and goes from where my waist curves in, down to my hip joint. It was so bad leading up to my diagnosis that I thought I was having arthritis pain radiating from my hip joint and I actually feared the thought of ending up with hip replacement. (the knee replacement was no picnic. Except for all the narcotics they put you on. That shit is nice!). But, two weeks into my first treatment with muscle relaxers, that pain was gone. And now, if I'm overdoing it (too much walking around, walking too fast at the store, taking a character class with Jane the Phoole), I can feel that ache starting. And usually I will cease the activity that is causing it and not feel any extra pain. But sometimes (okay, ONE time) I can't stop. Nay, I won't stop. Hey, it isn't every day that you get to take a class with Jane the Phoole and I wasn't going to let fibrofuckingmyalgia ruin it for me.

I get some similar issues as the author with the "sparkler" pain and the "rattled nerves". The rattled nerves stuff doesn't usually get to me because of my hearing impairment, but sometimes even that doesn't help and I end up frustrated with so much happening around me.

And since I have no real way to wrap this up, here's a photo of my fourteen pound Chihuahua. His name is Bruno.

Bruno, basking in the sun

He doesn't look all that big? A little fat is all? Here's a photo of him next to Jasper- who is a normal toy-sized Chihuahua.

Bruno and Jasper

Jasper never hurts my body when he steps on me. He barely weighs four pounds. But Bruno... ouch. That's a lot of dog. A lot of heavy little dog.

Tuesday, January 10, 2012

You're never too old to learn things...

Fibromyalgia is like a fuck-you cocktail of learn-as-you-go.

Remember that? Yeah, a few weeks ago or something... I came up with that as a description for Fibrofuckingmyalgia. And, today, I done learned up something new.

I've "liked" a few pages on Facebook that are related to fibrofuckingmyalgia in an attempt to learn about it and keep up with new and fantastic treatments. I say that tongue-in-cheek of course, because there is nothing fantastic about this disease. Or syndrome. Whatever-the-fuck-you-call-it, it sucks. One of the pages posted a link, then one of the other pages posted it. I'm Facebook friends with the admin on the page that posted it second... not that it matters, I was merely informing you. Anyway, here is the article link-

Ten things to stop doing to yourself with fibromyalgia and chronic fatigue syndrome

While I was looking through that article and scoffing and making noises about how easy these ten things are to stop doing, I clicked other links that took me to other articles about The Monster List of Fibro Symptoms and then another about Understanding Fibro Pain.

I was ready to copy/paste that list of symptoms and nitpick them to death, but I'm kind of tired and I'm definitely on a lot of pain meds right now (not only is the dental thing still annoying me, I'm having a flareup of some -itis pain because the weather is changing. How much is the weather changing? We're going from a high of 52°Fahrenheit to a high of 24° in less than 24 hours). So, instead of doing that, I'm just going to talk about some stuff directly related to me. And that's what this blog is about, right? Me? Well, me and McFall. That's what I named my fibrofuckingmyalgia- in case you weren't taking notes when I first started this blog.

I've got all of the "usual symptoms" except for hair loss, depression/anxiety, and loss of libido. I'm still a horny, hairy, calm and cheerful bitch. But this list had a few more on it than I expected. When I say "a few more" I mean "holy shit, that's a lot of things". And what I like is how it has the symptoms broken down into categories that make sense.

General Fibromyalgia Symptoms

♦ Delayed reactions to physical exertion or stressful events
♦ Other family members with fibromyalgia (genetic predisposition)
♦ Sweats
♦ Unexplained weight gain or loss
♦ Cravings for carbohydrate and chocolate
♦ Headaches & migraines
♦ Vision changes, including rapidly worsening vision

Okay, so I said I wasn't going to copy/paste. I lied. Well, actually, I changed my mind. If you feel like reading, well baby, I feel like typing. And that's why we're here, right?

Delayed reactions- well, of course. I do something or have something stressful, it doesn't hit me till a day or so later. That's typical.

Other family members- yup. Gots me lots of them. There was an "unnamed nerve disorder" that was diagnosed by biopsy in my mom's side of the family years ago. Mom and her siblings were all biopsied and they all have it. I had some cousins get the biopsy and some had it and some didn't. Well, we don't know what it was called because at the time, nobody ever knew about it and all they knew was that the nerves "overworked themselves till they seemed to degenerate"... and that's all I know about it.

Sweats and unexplained weight gain/loss- those are also signs of perimenopause. So obviously I have that going on. (also, those are related to thyroid disorders, so that's another notch in my belt of faboo health stuff).

And then we have the ones I don't have a problem with- I don't really know if I'm craving carbs or not. I take this Vicodin and the muscle relaxer and I get the munchies from time to time. I don't get headaches often enough for me to keep track of them and my vision seems to be fine for a forty-two year old who has always had better than 20/20 vision.

Muscle & Tissue-Related Fibromyalgia Symptoms

♦ Pain that ranges from mild to severe, and may move around the body
♦ Morning stiffness
♦ Muscle twitches
♦ Diffuse swelling
♦ Fibrocystic (lumpy, tender) breasts (as an overlapping condition)

Pain that ranges- holy hell, yes. I don't even need to go on about that here, just read some of my previous posts.

Morning stiffness- hehe, I just turned into a twelve year old. But no! Not that kind of morning stiffness. That might explain all that spam email I get though. But the fibro symptom of morning stiffness, yes, I have that. In spades. So I should have used this ♠ instead of ♦

Muscle twitches- well, I don't know if I have this or if its just normal shit.

Diffuse swelling- THIS! This place was the first time I read this as a symptom. Since late December 2004, I've had "unexplained edema". First it was "unexplained" then it was "stress-related", then unexplained, then "related to perimenopause", then back to unexplained... they have no idea why I have it, but I do. Some days, its just my lower legs. Some days its my entire body. Some days, its just my extremities. There are some days I start out wearing clothes and by noon I have to change into sweats and a giant T-shirt because the swelling has gotten so bad. And I take 75 mgs of Hydrochlorothiazide every morning.

Having a name for that and a cause, well, I feel like I deserve ice cream. No, I didn't discover it or name it or even have anything to do with it. I just like ice cream.

That last thing- the lumpy stuff, I don't have that. At least, not any more lumpiness that isn't just me being fat.

Sinus & Allergy-Related Fibromyalgia Symptoms

♦ Allergies
♦ Post nasal drip
♦ Runny nose
♦ Mold & yeast sensitivity
♦ Shortness of breath
♦ Earaches & itchy ears
♦ Ringing ears
♦ Thick secretions

Okay, so of all these- I have allergies (ever since we moved from Kansas to Georgia, I've had allergies), shortness of breath (I had a lung infection for 5 1/2 months that led to asthma, long story for another time, this is already long enough), and ringing ears. I've had tinnitus for so long I don't remember not having it. But, I'm in good company. William Shatner and Leonard Nimoy are also tinnitus sufferers... and not that I'm happy that they suffer with it, but you know, it makes my nerdy heart skip a beat. What? You don't know of my unnatural love for Shatner and Nimoy? Psh, and you call yourselves my friends?

Sleep-Related Fibromyalgia Symptoms

♦ Light and/or broken sleep pattern with unrefreshing sleep
♦ Fatigue
♦ Sleep starts (falling sensations)
♦ Twitchy muscles at night
♦ Teeth grinding (bruxism)

Except for the teeth grinding, I've had all of these. The twitchy muscles, I don't know if they were much of a problem while I was sleeping, because I only notice them when I'm awake. Which makes for awkward good times. Especially in public.

Reproductive Fibromyalgia Symptoms

♦ Menstrual problems
♦ PMS (as an overlapping condition)
♦ Loss of libido
♦ Impotence

Well, aside from loss of libido and impotence, yes. And all those can also be blamed on perimenopause and thyroid disease.

Abdominal & Digestive Fibromyalgia Symptoms

♦ Bloating & nausea
♦ Abdominal cramps
♦ Pelvic pain
♦ Irritable bowel syndrome (as an overlapping condition)
♦ Urinary frequency

I didn't have any of these problems related to fibro. Unless we can include "bloating" with my "swelling".

Cognitive/Neurological Fibromyalgia Symptoms

♦ Difficulty speaking known words, other language impairments (dysphasia)
♦ Directional disorientation
♦ Poor balance and coordination
♦ Paresthesias in the upper limbs (tingling or burning sensations)
♦ Loss of ability to distinguish some shades of colors
♦ Short-term memory impairment
♦ Confusion
♦ Trouble concentrating
♦ Staring into space before brain "kicks in"
♦ Inability to recognize familiar surroundings

I've been known to stammer over words and mispronounce words I know how to say. I don't like it and it pisses me off. I don't know if I've ever been disoriented directional-speaking, but I don't exactly rely on a compass to get around. I've always had a bit of an issue with balance what with being deaf in one ear. I do get the tingling arms/hands thing. My short-term memory is absolutely shit now. I was going to make a terrible short-term memory joke, but we're all better than that, aren't we? Confusion and trouble concentrating- not so much. My inability to concentrate is more because of the pain and not just, you know, bats dusting off my belfry or whatever it is that goes on up there. And the last two, nope. Not at all. My staring into space comes from all the pain drugs I'm on, not the fibro itself.

Sensory Fibromyalgia Symptoms

♦ Sensitivity to odors
♦ Sensitivity to pressure changes, temperature & humidity
♦ Sensitivity to light
♦ Sensitivity to noise
♦ Night driving difficulty
♦ Sensory overload

I don't think I'm sensitive to odors. I do have an extreme sensitivity to the pressure/humidity/temperature changes. Like a motherfucker. I can already tell you today that the weather will be changing in the next 24 to 48 hours. And in checking that fancy-ass website, I'm right.

Sensitivity to light- I've always been slight vampire-ish. I have to wear sunglasses even when its cloudy.

Sensitivity to noise- it doesn't apply here because I'm hearing impaired anyway.

Night driving, well, I'm not sure. I don't think so.

Sensory overload- I have experienced it, but I don't think its a major problem.

Emotional Fibromyalgia Symptoms

♦ Panic attacks
♦ Depression (as an overlapping condition)
♦ Tendency to cry easily
♦ Free-floating anxiety (not associated with situation or object)
♦ Mood swings
♦ Unaccountable irritability

I don't have panic attacks, depression, or anxiety. And the other three- those are also common in perimenopause and thyroid disorders (and PMS, for that matter). But yes, I do have those. Mood swings not so much, aside from "normal to angry for no reason", but that would go under unaccountable irritability too.

Heart-Related Fibromyalgia Symptoms

♦ Mitral valve prolapse (as an overlapping condition)
♦ Rapid, fluttery, irregular heartbeat
♦ Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)

I've had a heart murmur for my entire life. There was a time they told my parents I outgrew it, but quite obviously I did not. Hasn't been much of a problem and it never kept me out of gym class.

Skin, Hair & Nail-Related Fibromyalgia Symptoms

♦ Pronounced nail ridges
♦ Nails that curve under
♦ Mottled skin
♦ Bruising or scaring easily
♦ Hair loss (temporary)
♦ Tissue overgrowth (non-cancerous tumors called lipomas, ingrown hairs, heavy and splitting cuticles, adhesions.

All I've had from this group is bruising and ugly scarring. And if you've read this blog from the very beginning, then you'd know that before I made it all about fibro, it was about the scar from my knee-replacement that I named Fronkensteen. And, I've had adhesions related to that knee-replacement. Five weeks after the TKR, I had to get a manipulation (MUA- manipulation under anesthesia). That's where they knock your ass out and bend your knee for you, breaking up the adhesions and such.

Well, there you go... I was going to do the same with the second link- the one about the pain. But this is plenty long enough. And you probably already fell asleep. It took me forever to write this one. Mostly because I had to keep stopping to copy/paste and listen to my son tell stories. He'll be twenty years old next month and he still tells me stories like a five year old.

You know what I'm talking about- the story starts out with: "And that's when dinosaurs walked on earth..." and it ends "fifteen minutes ago..."

Thanks for reading. I hope this helped you in identifying some of your or your loved ones' problems with fibrofuckingmyalgia. And like I said in the title, way up there, way, way up there at the top- you're never too old to learn things.

Thursday, January 5, 2012

I can't spell the whiny sound I keep making

It isn't very loud though, because when I try to whine loudly, it makes my face hurt.

It seems that last week, during the hectic bullshit that is associated with the death of a close family member, I acquired a toothache. At first, I thought it was just sore with something caught in the gums. I floss regularly and even use foul-tasting Listerine, so I figured I'd get it eventually. Somewhere along the week, though, this ache turned into full-blown pain. It was so bad on Friday that I was putting teabags on my gum and tooth (its a home remedy- get a teabag damp with hot tap water and place it on the tooth). It was clear that this was an abscessed tooth. The pain in my tooth radiated through my jaw and into my ear. For once, being deaf in that ear came in handy. I'm sure had I been able to hear in that ear, the pressure from the infection would have caused something noticeable in the hearing department.

I ended up having to wait till this Tuesday to see the dentist. They were closed on Monday because New Year's Day fell on a Sunday this year. But I digress...

In my attempt to assuage the pain, I drew the infection out and away from the tooth. Late in the evening on Sunday I noticed a lump had formed. By Monday, it was bigger and on Tuesday, it was large enough for me to name and include on the family holiday card list. Because of that, the dentist told me we could take care of it that day and not have to go through the Russian Roulette of prescribing antibiotics for me.

You see, I'm allergic to a lot of antibiotics. My allergic reactions range from normal- rash, gastro-intestinal distress- to freaky severe- racing heart, profuse sweating, numb extremities. I drove from Savannah, Georgia to here (two hours North-west-ish of Chicago) while suffering an allergic reaction to antibiotics (the racing heart/sweating/numb reaction).

I opted to have this tooth removed because one- it was cheaper than a root canal and... nope, one is all there is. We don't have dental coverage. But I digress again...

Two or three shots to numb that bastard up and then ten minutes of prodding and loosening. It took forever to get that damn tooth out of my head. And they lanced and drained that lump as well. When the dentist finally got the tooth out, it appeared that the roots were long enough to be twisted around my spine. That's hyperbolic, of course, but only slightly. I have freakishly long roots on my teeth. Having my wisdom teeth removed was an experiment in dental hell that included stitching my gums to the inside of my cheeks.

Here I am, two days later. The pain is shockingly unbearable for a simple extraction. And exhaustion. I'm sure this is a combination of last week's stress and the dental procedure, but holy fucking hell, I could pass out sitting upright. I sat on the sofa on Tuesday afternoon and was nearly engulfed in the soft cushions. I was aided in that by having a heat source in the form of a German Shepherd against my side, but I truly did not want to move. Wednesday, I had pudding and oven-baked tater tots for breakfast and lunch. (oven-baked tater tots are mushy, in case you were wondering). That evening, I thought I could eat some leftover chili.

I did, but I regretted it. My jaw is so sore I feel like I've been punched repeatedly in the face. Having been punched repeatedly in the face, I'm familiar with that feeling. The dentist gave me Vicodin- 7.5/750 dose. As you know, I already take 5/325 dose at night. The dental-grade Vike is much more potent than my usual. Or maybe its because I'm not used to taking it in the daytime. Whatever reason, this shit is good.

Smiling hurts. Frowning hurts. Opening my mouth to glop in pudding hurts. Turning my head to the right hurts. Being outside in the cold air hurts. And I'm so very tired.

I did a quick Gewguhl search for "fibrofuckingmyalgia and dental work" (except I spelled it the medical way- without the middle word, because the medical world has yet to adopt the proper spelling) and there were a few tidbits here and there discussion the pain and flareups associated with the whole thing. Stress- duh. Having a near-stranger shoving his fingers around in your mouth is apparently stressful. My dentist, however, has the most beautiful eyes. We've discussed that- it was actually my mom who drew that to my attention. Dental work itself can release bacteria into the blood stream causing our bodies to release-something-or-other... frankly, I got bored reading that one, but basically, it can kick-start our bodies immune system to fight the bacteria. And, of course, the "trauma" caused to our bodies by whatever the dental work required. Well, I'd say digging around my jaw to remove the tooth that had its roots wrapped around my spinal column can be listed as "trauma".

As I type this, I'm comfortably buzzed on my dentist-prescribed Vicodin. I had pudding for breakfast and I might have some macaroni and cheese for lunch. Either that or more pudding.

And for fun, because you've stuck it out this long, I'm sharing a couple links. I managed to enjoy my dentist-prescribed Vicodin enough to do this last night with my youngest daughter, Christine (she's still home for Winter break). I don't remember when I discovered this neat effect, but I finally remembered to buy some steel wool. When I did a Gewguhl search months ago, after learning about this effect, this tutorial was the best one I found. (now that I think about it, I may have read about this on the website called Digital Photography School).

Anyway, here's the link to my set called: "A Mother, Daughter, Camera, Tripod, Steel Wool, and Time..." Keep in mind, though, I don't have a fancy (D)SLR camera. I shoot with a Canon Ixus 75.