the close to another birthday

It's that time of year again. Time for the annual reading of

because I so utterly adored the book as a kid. I read it to my son on his birthday, I read it to my husband on his birthday, and anyone else that wants it read to them on their birthday, you just let me know. On MY birthday, of course, my husband reads it to me, and it's delectably sweet.

"I am lucky to be who I am!
Thank goodness I'm not just a clam or a ham
Or a dusty old jar of sour gooseberry jam!
I am what I am! That's a great thing to be!
If I say so myself, HAPPY BIRTHDAY TO ME!"

best birthday present ever:

Today is my birthday. I am thirty three years old, although I look much younger and feel much older, at least at times.

For the most part, I really hate my birthdays, they just never seem to go right. But this morning, I got what might possibly be the best birthday present of my entire life. It's definitely the best one I've gotten so far.

I was fiddling around at the computer, changing the song on my MySpace account, when my son woke up and wandered sleepily into the room. He came over, sat on my lap, put his arms around me and started singing, "Happy birthday to you, happy birthday to you, happy birthday dear mommy, happy birthday to you!" Even with his grim little boy morning breath, it was sweet as could be. He got up, and I got up, just as the song on my profile started to play. I was heading into the kitchen to get him some breakfast, but he turned around fast and stopped me.

I looked down at him, baffled as to what he was doing, and very nearly started to cry when I realized he was putting one arm around me and holding out the other hand for me to grasp.

Yes. He was offering to dance with me. No, he's never done that before. He does know that I have always wanted to take dancing lessons, though, and the sheer undeniable sweetness of his gesture took everything I had to just jiggle around in time to the music with him and not cry onto his sweet little head. Of course, neither of us knows how to ballroom dance, and we were attempting to dance to India.Irie's song, "There's Hope", which isn't really ballroom dancing kind of music. (If you'd like to listen to the song, it's on my profile page currently, although it's being slow to load at the moment.)

We danced our discombobulated but endlessly sweet dance, and I hugged his little head until I knew I could look at him without crying. And then we went about eating breakfast.

I don't see how anything could go wrong in a day blessed like that.

"Back when I had a little
I thought that I needed a lot
A little was over rated,
but a lot was a little too complicated
You see-Zero didn't satisfy me
A million didn't make me happy
That's when I learned a lesson
That it's all about your perception
Hey-are you a pauper or a superstar
So you act, so you feel, so you are
It ain't about the size of your car
It's about the size of the faith in your heart

There's hope
It doesn't cost a thing to smile
You don't have to pay to laugh
You better thank God for that"

~India.Irie, There's Hope

The Metaphors of a Twig

Found in a pile of poetry I've been rooting through. This one is from around the age of seventeen, maybe, eighteen? I was referring to a twig that was shaped like the letter Y.

I found the question WHY
It was laying dead upon the ground
It had fallen from a tree
and was dead for so long
I picked it up and it fairly disintegrated
between my fingers
I looked for quite some time but
I found no answers.

As I searched,
nutcases leaped from unseen heights
to join me on the ground.
But if you know the misnomers
you would understand, as I do, that they're really seeds
It seems to me
In this world
One is seemingly a nutcase, one who chooses to grow.

Why is brown on one side, with knicks and spots
Why is brown on another side, with blue-green dots.
You can ask it if you like
Why is very quiet.

Now Why has become Where.

Apparently I lost the twig.
*laughs*

the low down, very low down...

Where to begin...?

I've just come out of a most horrible depression, one that's been a while in the making. A few weeks, although aspects of it have been accumulating silently for years. My most recent hormonal PMS Freakout cycle is ending, and I feel like maybe I have the energy to explain this without a total nervous breakdown. I could not have done so a few days ago.

Within in the last month, I have been diagnosed with Chronic Myofascial Pain Syndrome and Fibromyalgia. While I am relieved to finally know what the hell is wrong with me, I am also very sad.

I have spent years going to doctors for all kinds of weird symptoms, and they've treated them the best they could, but nothing ever really relieved it. I've tried what seems like an endless stream of medications and seen a string of shrinks since I was in my early teens, but no matter what, I just seemed be getting worse. I couldn't understand it.

I went through six months of physical therapy last year as a result of me suddenly waking up one day and not being able to do anything but hold my head with my own hands. I was completely immobile, and I guessed that it was something to do with my triple somersault down some concrete steps a few years back. I was working at the time, and thankful for that, because Worker's Comp paid for the medical stuff and I didn't have any health insurance. But, as anyone who has ever dealt with an injury under Worker's Comp knows, they aren't keen on paying for much. As it was, I was in a lot of pain but no MRI or X-ray could show anything. They tried a few things, but after a few months of me still being in pain, they decided it was in my head. I decided it wasn't but hoped it would just work itself out eventually.

It didn't.

When I went into physical therapy, it was excruciating. They were doing Myofascial Release Therapy, and although I've read of some versions of it being gentle and relaxing, what I experienced was more painful than labor. And I was in labor for two days. That's no small thing, what I am saying. I did it all natural, too, I might add, right up until the end when I was passing out from sheer exhaustion and ended up with a C-section. So, take that in mind when I say physical therapy was WORSE than that. I went twice a week and in between visits I would stagger around in misery, but I had something valuable then that I didn't realize:

I still had faith that whatever was wrong with me was at least curable. I was enduring all that pain and suffering for a good cause. I had a reason. And I regained mobility to my neck, so I was feeling good about it all. It didn't explain my years of endless panic attacks, other pains, GERD, insomnia, hives, ulcers, migraines, and whatever else, but I had hope. I've come to realize hope is a very valuable thing.

After physical therapy, I kept doing the exercises they had me doing to help strengthen my core muscles. That was supposed to help my neck stay straight. My therapist told me I wasn't, by any means, DONE with physical therapy, but my insurance company said I was. Again, they couldn't find any reason for me to continue, so I was back on my own. But I had faith that it could work out and I would feel like a normal, healthy person again.

The months went by and my pain didn't go away. I weaned myself off of the painkillers from therapy, thinking maybe they were just messing up my body's ability to tolerate pain normally, and maybe after I got over them I could feel normal again.

Nope.

I waited a while and went back to the family doctor, told her what was going on, and she took some X-rays. She said she thought maybe I had hip and ankle damage, and we assumed this was where all the other pain was coming from; if one leg is out of whack, it makes sense that it would throw the rest of me out of balance, right?

So I went to the orthopedic specialist, who viewed my X-rays, took more X-rays, and told me that there wasn't anything wrong with me. Nothing he could operate on, anyway. And that was when they diagnoses came. It's chronic, it's debilitating, it's something that can be managed through various methods to an extent, but it's incurable. And it's likely something I've always had.

I thought back over my life, and started putting things together. So many things, so very many things keep flashing up, memories that make so much sense in the light of this new diagnoses. There really IS something that ties all these weird symptoms together.

Armed with stacks of books, I listened to the good advice of G.I.Joe and decided that knowing is half the battle. I've got stacks of books on my kitchen table about my condition(s) and I'm reading up on every concept, idea, method of treatment, etc. It's been tiresome, I have to admit. Doctors have conflicting ideas, ways to manage it, and there's also the problem of sorting through what is total bunk and what is real. I mean, anyone can write a book. Even doctors who claim to be very knowledgeable about both conditions can also turn out to be merely opinionated asshats who just wrote a freaking book. Many doctors still think Fibromyalgia is a made up pile of bullshit that is a fancy sounding label for people who whine a lot. Thankfully mine is not one of them, and took me seriously... at least, once some more qualified doctor told her his diagnoses. Go figure.

Part of me is overwhelmed and the amount of sleuthing and testing of different methods of "managing" these syndromes. This is no small task. There is no simple medication (I know, one just came out recently, I'll get to that...) because every person who has this seems to have their own set of things that cause symptoms, and each and every person could be different. So having a diagnoses is minuscule in comparison to knowing what is precisely wrong, and what will need to be done to feel relief. It's not like, "Oh, you have arthritis. This is what you do..." No. I have to figure out what causes my individual symptoms and find ways to deal with each of them. It's so much more complex than I even dreamed of, I have moments where I become utterly lost and morbid about it all. From what I've read, that's a pretty normal reaction. I'm relieved I have an answer, but the answer is a mere tip of one freakishly huge iceberg.

I had to stop reading all those damn books and go out and buy the new Harry Potter book over the weekend. Ok, ok, I would have done that anyway, but I'm just saying, I can only read about some whacked out weird incurable problem I have for so long without just losing my shit entirely. The crazy and stressful plot twists of the final Harry Potter book was a walk in a field of daisies by comparison. It's a f-in magnificent book, for the record. And I'm not revealing any plot spoilers, so don't worry.

Here's the real problem: it isn't just the diagnoses and overwhelming amount of sleuthing and testing and I don't even know what kind of medical hoo-haa that's going to go along with this yet. What's really got me torn up is the sense of finality. In particular, my husband and I had been discussing the possibility of having a baby before we found this out. Although I was on pins and needles at the thought of it, considering my experience the first time (with my son), I was also, very secretly, harboring thoughts of seriousness. And not just seriousness, but a secret and unnameable joy at the thought of it.

The pain and the exhaustion and the misery I had felt with my son might be a heartbreak I could finally put to rest. I could, just maybe, get to experience the sense of motherhood that other parents talk about and I've never been able to comprehend. Other people make it look so easy, and even the parents that admit it's hard as hell don't seem to feel as utterly incapable as I feel about it. (sigh) When my son was born, I was exhausted, depressed, in a continual state of sleep deprivation, and not in the normal way that I hear other parents talk about. I mean I wanted to take my baby, walk down the hill to the train tracks, and just stand there and wait. That feeling did not pass, not for days, weeks, months, and even for a few years. The only thing that really helped was when he got older and could take care of himself more, become more independent, and the most glorious occasion of all: when I could nap on the couch nearby him and know that he was just fine. That bit of delight has only really happened in the last few years, and he's ten now. So, I would say the first few years were a kind of living hell, the next few extremely anxiety producing and depressing, and now it's merely exhausting.

That doesn't sound like good parent material to me. I love the hell out of him, don't get me wrong. I'm just saying that I think I could have been a much better mother and I'm not into the whole denial game. I could have done better. I could still do better. And when I see those parents that make it all seem so easy, I feel so alien, so despicable, so bitter. Why can't I be like them?

Oh. (pause) Now I know. From what I've been reading, this is pretty normal for a parent with Fibromyalgia, not to mention the Chronic Myofascial Pain Syndrome. I've got the double whammy, as one doctor explains it, and not only that, but my conditions are pretty fucking severe from what I can gather.

Does this make me feel better about my parenting thus far? No. No, it doesn't.

You see, when I went to see the orthopedic specialist, Jack and I were thinking he would suggest surgery. And while I was terrified of surgery, the thought that something could fix all this pain was tempting. The other symptoms, hell, I can live with those, but the on again off again extreme pain and exhaustion would be enough to make me feel like I could take on the challenge of a new baby. Instead, I found out that the reason I felt so hideous the first time was not because my son's father was a emotionally abusive whoring asshole, but an underlying and undiagnosed medical condition. One that has only gotten worse with time, and one that is incurable.

Once it finally hit me, I was crushed. Then I would have periods of optimism, always during a good spell of course. There are ways to manage this problem, I just have to figure out what they are. As I read more and realized the magnitude of the problem before me, I realized this may take months, maybe years before I can narrow it down and get it under enough control that I feel up to the challenge of pregnancy, much less a baby. Or, God forbid, a raging toddler.

I turn thirty three tomorrow. I don't have a lot of years left. When Jack tried to comfort me, "We can wait, we have time..." I hysterically informed him, "NO! We don't!" The closer I get to forty, the more possibilities there are of birth defects and complications and I don't even want to think of how much harder it would be for my body to bounce back at my age NOW, much less a few more years. I had my son when I was twenty three, and it was nearly unbearable.

My husband tells me it will be different. He will be here to help me. I explain to him that no, he won't. He'll be at work. And with the hours he works, he'll barely be here while the baby is awake anyway! How can that be helpful? Sure, we won't be broke, but that won't help with my exhaustion or pain. I can barely lift groceries most days, how the hell am I going to carry a crying baby around? And who is going to get up in the middle of the night? The guy who has to work in the morning to provide for his growing family? He said he'll work less hours. It'll be different. I just laughed bitterly and asked him to really consider that. Consider how he's going to feel with a new baby, the costs of raising another child, his ingrained sense of duty and if he can cut down his hours while not worrying about life insurance or a college fund or whatever else his mind will be churning over while he tries to go to sleep at night.

He saw my point.

He just got promoted. In his elation, he pointed out that he could be making a whole hell of a lot more money in the coming years; we could afford a nanny. A maid. Ways to help out around the house, making it easier for me. Instead of the relief he thought that would inspire, I started to sob. "A nanny? A nanny? I'm a stay at home mom who needs a nanny? When my baby is crying I need someone to pick her up for me because I just can't? Don't you get it? I'm HANDICAPPED. That's what is making me so sad! I always thought I would get better! I thought everything that is wrong with me was fixable somehow, if I just kept reading and researching, eventually I would find the magical cures for everything that ails me, but now I realize that it's beyond my control. I can do things to make it better, yes, and in time I'll figure out what those things are. But don't you see? I have only declined in the last few years. I have gotten steadily worse for years now! I can barely manage to live a vaguely normal life as it is! How can I have a baby? How can I do that to a child? How am I going to feel if I DON'T get better? How can I stand to look at a baby that wants to be held or rocked and explain to it, 'Mommy just can't hold you. Sorry.'? How can I even explain to the ten year old I already have? Sometimes Mommy is ok, sometimes Mommy falls apart, you just never fucking know..."

I cried. I've been doing that a lot lately.

And yes, I still haven't told my son what the hell is wrong with me. I don't understand it enough to explain it. He overheard part of a phone conversation I had with a friend and started crying, telling me he was sorry that I hurt so much and that I would never be better.

*hangs head*

I tried to make him feel better, telling him that I just needed to find out more stuff and see more doctors and that would help me out a lot. It's supposed to be true. I think it's true... but on a bad day/week, it's really hard to believe that.

That isn't even the worst part.

Doctors seem to be conflicted about whether or not Fibromyalgia is genetic. A lot seem to think that it is. The more I read about it, the more I wonder about my own son... he shows signs. It's hard to tell with children, because when they've always had the pains, they consider them normal. I'm living proof of that. I had to get to the point of disability before I paid attention. But looking back, the signs have always been there.

Even if my son doesn't have it, what's not to say a new baby would?

*heaves a heavy sigh*

You can see where this goes. Even if I felt ok to have a baby, would I feel ok about the possibility of passing this on to someone else? Trying to figure out what's wrong with me is a mountain in itself. Once I climb that, do I want to climb the mountain of having a baby next? That's no small mountain, either. That's a lifetime commitment. And then the issue of passing on a shitty condition to another person, knowing it's a possibility...

I got really attached to the idea of having Jack's baby. Now I don't know if I even can.

Frankly I try not to think about it, but my son is absolutely smitten with babies, and points them out everywhere. Even today, while we walked through a department store, he was picking up baby clothes and commenting on how cute they were. It rips at my heart. Yesterday one of my friends called, and he has, undoubtedly, what may be the cutest baby ever. She's just learning to talk, and says the cutest things I've ever heard. While I used to be enamored with her a month ago, now the sound of her voice makes me feel leaden inside.

I... I just don't even know what to say. I'm at a loss for words.

a mother's nightmare

I had some crazy nightmare last week, and I had planned to write it down but was far too busy/depressed at the time.

Let's see...

It was fractured and bizarre, as most of my dreams are. I remember being back in high school and worrying that I couldn't remember my locker combination. I was worried that I wouldn't graduate on time. I was worried that I couldn't find my classes. At some point, I went outside, and tried to drive home.

There was a deep snow, the dangerous kind that's warmed up just enough to melt a little under the push of traffic, but then cooled down again enough to freeze, unseen under the snow. For those of you who don't have practice driving in snow, this can be the most deadly combination. I grew up in Michigan, where weather like that is not uncommon, and had a few real life scary moments of my own, but I did learn to drive in it and know my limits. In the dream, however, I seemed to throw all caution to the wind. I was frantic about something, and I had to GO, NOW.

I had pulled out of the parking lot in a squealing, sliding mess, and proceeded to drive down the wrong side of the road until I could slide my way over to the correct lanes of traffic. No one was coming, so I judged my ridiculous move to be ok. As I got to the right side of the road, however, I realized that traffic was coming at me from ALL the lanes. I had just enough time to see another truck come barreling at some crazy speed over a hill and knew there was no way, no time, nothing I could do, I was going to hit him head on.

It became one of those slow motion moments that you read about, the kind where you know you're going to die and This Is It. I suddenly realized my husband was in the truck with me and my son was (for some unknown reason) walking up the road on the sidewalk behind us. He wouldn't be able to see the accident for a little while, but he was on his way. And the truck came at me, regular speed again, and I closed my eyes.

When I opened them, my husband was out on the ground, on the passenger side, and I crawled over the console to be with him. I was in terrible pain, and I wiped blood from my face, even knowing it was ridiculous because I already knew we had died. There was a bizarre muffled silence to the world, as if we were the only ones that existed. The roof of my truck was gone, and I tried to puff myself up as much as possible so my husband couldn't see our mangled bodies behind us. I wanted him to see ME, not my horrific remains.

I was beyond any kind of despair I had ever known in life. The realization that my son was without us and didn't know, but soon would, overcame me. I also realized that I was pregnant, and that I would never know my unborn child. I looked at my husband and said, tearfully, "I told you I wanted us to be together forever, but this wasn't what I meant!" I tried in vain to listen for sounds, to see the people running to our aid, but I could see and hear no one. It was just us. I wasn't concerned about what came next or what the great beyond was, what mystery the afterlife held, just sickened to know that my son was still walking up the sidewalk, soon to discover our gruesome deaths and that there was no one there to comfort him, to help him. He would discover us, and start screaming in absolute terror, alone...

I woke up sobbing, and stumbled out to the dining room where my husband was on the computer. He took one look at my face and turned his chair, offering me his lap. I sat down and threw my arms around his neck, crying, telling him my dream. Before I got to the end of it he said consolingly, "Well, baby, at least we can watch him (my son) grow up, we could be...like.. his guardian angels...." I just stared at him, horrified, and told him the end of the dream, that he was walking up the road, in a snowstorm, alone, to find us dead and mutilated. His eyes widened and just held me tight while I sobbed.

What a hideous dream.

I've had much more twisted and even psychotically demented nightmares than that, but that just ripped my freaking heart right out. I could barely drive the whole day, I was so terrified to get behind the wheel, even awake in the blazing summer sun. Some dreams just stick with me for awhile. I've settled down since then, but I've been rather skittish behind the wheel ever since.

karma for the vain

Back in the days of blue blooded aristocrats, I could have been the very height of vogue. That is to say, I come from a very long line of very white people. My veins tend to glow blue under fluorescent lighting, a fact which makes me feel freakish. It's not that I have such a problem with being pale; I have a problem with being squeamish about seeing what my flesh is actually encasing. I'd rather not see it, thank you very much. If my shimmering fish-bellied legs blind you when the sun reflects off of their white surface, that doesn't bother me as much as being able to see the veins beneath the skin. I like knowing my body is working just fine, I just don't want to be able to SEE it working. Blech.

A few weeks ago I was in a friend's wedding. On the beach. In a strapless sundress sort of deal. Oh dear. I didn't want to mess up all her pictures with the glowing fish girl in all her pictures, throwing off her bewildered photographer who could spend weeks trying to adjust the color levels of the photos so it doesn't look like there was a ghoul in the shots, so I did the act of desperation: I went to a tanning salon.

Now, I'm funny about the sun. Or maybe the sun is funny about me. It does seem to treat me as it's own personal joke. The thing is, I burn easily, I tan ok sometimes, but the skin on my face turns brown in splotches and oh yah... I'm allergic to every kind of sunscreen I've tried. Yes, even the super gentle on your skin my-pharmacist-recommended-this-twenty-dollar-bottle-of-crap kind. I react as if I had somehow had a lengthy and intimate encounter with a jellyfish or twelve. And it lasts for weeks. It's gruesome.

So I learned that perhaps I could find some alternative method for obtaining a "tan", and oh yes, I've tried the fake tanners. I'm really pretty skilled at them, given the amount of years I've had to figure them out. The problem is that my husband hates the smell of them, saying I smell like teriyaki sauce for days afterwards. That won't do. I'm not sure which is worse; smelling like marinade or looking like I made out with a jellyfish.

Then I found the super expensive tanning beds with the whatever the hell kind of bulbs that DON'T have UVB? UVA? UV-something rays, at any rate. Turns out those are the kind that burn you. Those are also the kind that make my skin turn blotchy faster. So I can use this fancy tanning bed for a little bit, at least, managing to look like a normal person (or, for me, mega tan) without my face turning into a leopard print. So that's what I did.

For a week or two before her wedding, I made sure I went a few times, and every time I would be out in the sun for more than a few minutes, I made sure I had a tube top on and a hat, so I wouldn't end up with burnt tan lines embedded into my fishy flesh.

The weekend of her wedding, I was looking great. Hell, for me I was damn near dark! That is to say, a pleasant beige color, not my usual "ivory colored make up is too dark for my skin" bullshit. Oh no. I had no tan lines, my dress would look great, and I would not look like a freak next to the other beach loving bridesmaids.

The day of the wedding, I went to the place the wedding was to be held and the place of the reception. I was on the decorating committee, that is to say, I WAS the decorating committee. I planned on being in and out, since I was under the impression that there would be a lot of people to help me put up decorations.

No one was there.

Well, some of the guys were, and they helped me with a thing or two and left, getting their groomsmen things done. And then there was no one. Just me, decorations, and the blazing sun in a cloudless sky, in what was probably ninety something degree heat. Oh, dear. As with any normal wedding, some lines of communication got crossed, and I was on my own.

Eventually some other relatives showed up and helped me get the rest of it up, and I was trying to not become hysterical, as I had to finish but also had to race back across town and shower before getting dressed and jumping into the limo before the wedding began. They graciously told me just to go, so I did, and raced home. I jumped in the shower, dried off, turned to look at myself in the mirror and yelled, "SON OF A FUCKING BITCH!" followed by a litany of curse words the likes of which has probably only been uttered by the dad in A Christmas Story while he battled the furnace. You see, while decorating, I had managed to burn very distinct lines into my shoulders, neck, and back because I went over wearing a tank top. The lines were so clear you could see where my bra straps had rested outside of the top, even. I took this picture about four or five days later:



Fabulous, no?

So off I went, in a complete and utter meltdown, off to meet up with the rest of the bridesmaids and the bride herself, to throw on my dress and makeup and leap into the limo for the The Big Event, all the while trying to smile and look calm for the bride's sake, but secretly wanting to scream and put a bag over my head. I tried to quickly blend it in with blush on the non burned parts, and it helped, but there was no hiding it. Even as we got out of the limo and stood in the sun, I could feel my skin sizzling with the additional heat. The pain was already intense, and I had an entire night of smiling and happiness ahead of me. Oh dear, oh dear.

I walked up the aisle and took my place, wishing everyone could just stay ahead of me and not see the "I'm A White Idiot" sign on my back, but no such luck. By the time the reception was in full swing, I had people taking pictures of my back, laughing. Not maliciously, mind you, but it's hard not to take it that way when you're burnt to hell and your vanity has been deep fried along with it. I smiled, smiled, yes, ha ha, isn't it funny? I did not say, "Why don't you take pictures of the BRIDE, you fucking nincompoop!?" or "I will lash you with my barbed fish-girl tentacles, oh two legged land dweller!"

The important thing was that the wedding was beautiful, the bride was beautiful and happy, and everyone had a good time.

Of course, that's easy to say; I haven't seen the photographs yet... I'm sure no one will notice the stupid stripes, especially not next to my happy shining smile... right? Right?

Vanity can be such a bitch.

oh no you didn't!

In so many ways, that is just wrong. That's the kind of headline you just don't want to see.

Personally, I think the guy should have to serve community service IN the costume, and apologize for sullying Captain America's good name.

Illustration copyright Bryan Hitch

I like dogs

And these people ought to have dog feces crammed in their open mouths whiled tied to a chair on live national TV. My evil fantasy goes beyond that, but I'd prefer to not seem as psychotic as they are...

two new names but still one me

I recently found out that I have fibromyalgia. That is to say, the doctors confirmed it. I've suspected it since I was in physical therapy last year, having myofascial release work done. I wondered about this bizarre "myofascial tissue" and started reading up on it, coming across a book that also had a lot of information on fibromyalgia. The more I read, the more often I said to my husband, "This sounds just like me!" He agreed wholeheartedly.

So now the doctors have weighed in, and the word is: Fibromyalgia. And: Chronic Myofascial Pain Syndrome. (That's more than a word.) And I'm doing the same thing I do with everything I don't understand: I research the hell out of it.

The weirdest thing about it all is that it seems nearly impossible to explain. It's a recently named syndrome, and doctors have been calling it by different things over the years, one of them meaning something about inflammation. The problem is, nothing is inflamed. It's frequently considered under the heading of rheumatism and arthritis, although it is neither. What the hell is it, exactly? I'm still figuring that out.

What I do know is that one condition aggravates the other, so having both is kind of a double whammy of pain. Ha, I already knew that, duh. I hurt. Yah. I know. Something about the myofascial tissue tightening up in one condition and activating trigger points (TrP's) in the other. One condition can have Trp's worked on, another it aggravates them more. Until I get to see an actual specialist in the field, I'm not really sure what kind of work can be done. I don't know what I'm supposed to do, really, except currently: Pay Attention.

I am paying attention to what I do, what I don't do, what I eat, what I don't eat, where I go, humidity levels, barometric pressure, my hormones, the temperature, hell on a buttered biscuit, damn near everything. That's what the books say I should start with. Apparently each person who has this is different, insofar as what sets them off and causes flares.

"Flares" is the term they use for a flare up of symptoms, and again, the set of symptoms can vary from person to person. My flares have been around since I was a kid, I just never knew there was a NAME for them. I thought I was a flake, prone to spacing out and being exhausted and hurting a lot. Now I have a name for the spacing out, too: Fibrofog. I don't know if that's a universally used phrase or not, but I've seen it a lot and it's a brilliant name for it. Sometimes I just don't know what the hell is going on, and I get really irritated. I know I should know better. I know I am far more eloquent. I hate making stupid little mistakes that I "normally" wouldn't do. It irritates the shit out of me! But strangely, those moments are now useful, too. They signal a flare. They are my warning sign.

For now, that warning sign isn't much use. It's kind of like a "Beware Of Falling Rocks" sign posted on the boulder that's five seconds from dropping on your head. It's enough time to read it, but not to avoid it. I'm guessing that eventually I'll get the hang of this stuff and be able to steer clear of a lot of the things that cause me so much misery.

Contrary to popular belief, I'm not in pain all the time. Sometimes I'm fine. That makes it more confusing for both me and the people around me. I don't know when I will "flare" and neither do they. I tend to be nervous, cautious, and I isolate myself because of it. I do me no favors by that act. It's just done out of fear. What if I agree to come to a party but flare up the morning of it? Do I go anyway, even though I'm in pain and can't talk right? What kind of hideous party pooper will I be? I don't want people to get that impression of me... and so I turn down a lot of fun things out of fear.

My closest friends understand this trait, even before it had a name. Even before I had a reason for acting this way, they just accepted it as one of my quirks. I love them for that. And I hope that more people will be able to work with my quirky flares and understand that sometimes I can do a lot, sometimes I am vivacious and outgoing and energetic. Sometimes I am a huddled ball of pain and misery, and don't answer the phone. It's not that I don't want company, I do. I just hate being that negative, and it's not a matter of snapping out of it; it's PAIN and it's not going away.

I realized that last bit when I got my wisdom teeth pulled; they put me on Vicodin and I was insanely cheerful for days. I realized it by the second day, and casually mentioned to my husband, "See how cheerful I am when nothing hurts?" That was before the doctors had come up with any names for my condition. And after weaning myself from the Darvocet I was taking during physical therapy, I have no desire to take a steady diet of narcotics, although I am aware that there will probably be some occasional need for them from time to time.

Today would be a good example. I still have some in the cupboard. I would feel... absolutely incredible if I took some. But with that relief comes the return of the pain when they wear off, and I'm not sure if I can explain how hideous that really is. If I can manage to work out the various knots and trigger points while the medication is working, I can emerge from it nearly golden. But today... today I don't know where they are. I have suspicions.

I've been studying the various TrP's on this handy site and could actually follow some of the problems I'm currently having with the TrP's they originate from. I haven't been able to write well for maybe a week now. I can type, but anything requiring delicate dexterity is nil. I've had a headache for days, and when I looked at the trigger points for where that pain might be coming from, I discovered a muscle in my neck that feels like a bone. My husband felt it and said, "ARRRRUGGGH!" I told him that was very well phrased, that's just how I feel about it. I had him try to massage another spot yesterday, and the pain went right down my arm and into my left three fingers, just like the chart said it would. It was so strong that my entire arm and hand seized up like rigor mortis. I had to make him stop for fear that I was tweaking out other muscles just from the pain of trying to work that one in particular out. But I remember physical therapy, oh yes I do, and it was excruciating. I do not particularly relish the thought of going back to that torture again, even though it DID help. If I must, I will, that's just the way it goes. Better to have a trained profession working on me than my well meaning husband, lest we just fuck me up more in the process of trying to fix me. That would certainly suck.

The biggest and most confusing part of the whole thing is that I want to just rest. People also assume I should rest. (grumbles to self, in pain) Here's the thing: I can't over do it. That's very bad. But even worse is doing nothing at all.

The longer my muscles have to be still, the tighter and more restricted they become. If I sit for long periods (an entire movie will have me squirming in my chair), stand still (that doesn't take more than a few minutes before I'm in pain), or even lay down, eventually things tighten back up and I'm less inclined than ever to move, because moving hurts even more. But I HAVE to do it, so I do, and please don't resent me for being extremely damn grumpy about it. The doctors have me taking a muscle relaxer at night, to try to keep the muscles as loose as possible while I sleep. It's definitely helped, but I still wake up sore, just not in agony.

Depression? For years doctors tried to treat me for depression. I'm not depressed! Quite often I'm happy, in fact. It just happens to be that I get really morbid when I'm in pain. Especially when I don't know when it's going to end. Ugh. That's where narcotics come in handy. Even for someone who is used to a lot of pain, there is always a limit. I have my limits. I'm about at it now, but trying to just push on through and see if I can work it out. I certainly won't do so sitting here, though.

In summary: I have some weird and painful combo syndrome things. They aren't curable but they aren't deadly. I hurt a lot, I'm tired a lot, but I want to have a life regardless. I NEED to have a life, regardless. I just need the people around me to understand what the bloody hell is wrong with me and know that I love them and want to be a bigger part of their lives. I'm simply afraid to. It's embarrassing to be tired and in pain. I'm too young for this shit, but there it is. And I'm baffled about how to deal with it, yet, so I don't really have any good answers when people ask me about it.

But I'm still me and really, the only thing that's changed is that I have a name for it. Two names, actually.

Now please drag my ass out of this house. I wanna DO stuff. With you. Ok?

The Griffon

I saw it, I watched the commercials for months, I swore I wasn't going on it. But it tickled the back of my brain for so long that I couldn't stand it.

I went. I rode. And I LOVED.

I can't wait to do it again.

(Both the photograph and the video were taken while we waited in line.)

Doctor Who and Harry Potter: delicious!

diagnosis officialis

Today was my appointment back with the family doctor, since the orthopedic specialist told me I have Chronic Myofacsial Pain Syndrome and possibly Fibromyalgia. I was a little nervous. I know a lot of doctors either aren't well trained in such things or just think they're made up names for whiny pain in the ass patients. What would my doctor say? I didn't know.

I sat and I waited, and she surprised me by coming in and asking me why I was back. Doesn't anyone read a stinking chart? Oh, well. I told her what the surgeon said, and she asked me why he sent me back to her. "Well, he said he only does surgery, you see, and since there's nothing to operate on..." She nodded.

We started to talk about the two separate syndromes and I just straight out asked her how knowledgeable she really was about them, wanting to know exactly where I stood and not waste any time, if possible. She was very frank with me and said she didn't know a whole lot, but what she did know was that I would be best off if she referred me to a pain specialist (back to the same guy as before, or at least the same place, that I went to during physical therapy). She also mentioned that she had seen a few cases in her time and noticed that most people responded best to more holistic methods. I nodded vigorously, told her we were on the same page, and that I was very relieved to hear her say that. She told me not to get my hopes up as far as insurance paying for "things outside of what is considered 'normal' medicine, you know..." and I nodded, yes, yes, I do know. She also mentioned that she understood how some doctors were not very open minded about both syndromes and if the pain management place didn't seem to be covering my concerns I should just come back to her and she would refer me somewhere else. "There's plenty of them around here, so if you don't feel like they're taking good care of you, you just tell me, ok?" I nodded some more, further relieved.

I told her the things I had been doing so far, taking mental (WRITE THEM DOWN, Jack says) notes of the things that cause my flares. So far I've noticed fluctuations in my medications (addressed that with my shrink yesterday), fluctuations in temperatures (I'm taking layers everywhere), lack of sleep (we're moving out from under these damnable jets soon), and various activities or lack thereof. Slowly I'm getting the hang of the things that set me off, but it seems clear to me, and I told the doctor this, that I'm very likely going to have to go back to physical therapy. I have so many freaking trigger points it's ridiculous. Lately I can barely write because my arm is all tweaked out from some spot behind my shoulder blade, I think. I can type, at least. The point is that diet and exercise are not going to fix those, and I need to address those, too.

All in good time. In the meantime, I'm just thrilled that my family doctor is not an asshat.

Man, it feels good to say that. It's about time.

singing in the rain

Last night it stormed. It stormed and stormed and it was glorious.

I knew it was a huge storm rolling up, and I was all ready for it. I got home just after it hit, and told my husband, "I'm going outside. This is perfect." I've been waiting to clean off the carpets on the back porch, the ones catching the bird seed from the feeders that my downstairs neighbor likes to have a hissy fit about. They're hard to clean off, though, because in the process the seeds will drop down and he'll pitch another fit. A huge storm, though, that's a good time, right? Well, to hell with it, I decided it was.

At first it was just another chore, but an exciting and dangerous one, what with all the lightning and what not. After the first few minutes of grabbing carpets covered in bird seed and bird crap, throwing them over the rail and wiping crud off of my hands, I proceeded to just hold planter trays under the water gushing off of the roof and splash the full containers onto the carpets. Despite my heavy duty raincoat, I was soaked within minutes. My feet were making squelchy sounds inside my flooded shoes. I lifted the trays too high once or twice and water followed the easiest path down, right down my arms and into my clothes. I was drenched.

I was flooded. I was HAPPY.

In between the moments of crashing thunder and flashes of blinding lightning, I just stood there, alternately doing what it was I set out to do and just holding my hands under the water, feeling like a little kid.

I was so wet I had to leave most of my clothes on the porch and run in half naked.

I should do that more often.

prairie dogs take over the world (via the internet)

Proof, once again, that Japanese shows are endlessly awesome. Beware, the mighty staring powers of The Dramatic Prairie Dog. It has it's own website, but it began as a simple little clip from a TV show...

what condition my condition is in

"I pushed my soul in a deep dark hole and then I followed it in
I watched myself crawlin' out as I was a-crawlin' in
I got up so tight I couldn't unwind
I saw so much I broke my mind
I just dropped in to see what condition my condition was in..."
~Kenny Rogers


Now that I'm doing a lot of reading and research about fibromyalgia I'm realizing that a lot of my "moods" aren't really moods at all, but flares. Flares meaning a flare up of symptoms, and an all around feeling of shittiness. This was made all too clear to me over the weekend, when I didn't really want to go anywhere, do anything, or be conscious at all. Now that I know what it is I can recognize it for what it is and not feel like it's a never ending maze that I have to run through. Granted, it is not curable, but the worst of the flares come and go.

Now I know why I do my disappearing act. I have a tendency to just up and *poof* and friends and family ask me why haven't I called, where have I been? The answer has always been elusive, and so I've always felt like I couldn't answer them honestly. I honestly didn't know, I just knew I felt horrible, there was no reason, and I didn't feel like I could deal with anyone. Most importantly, I didn't feel like I could put on a happy face and try to play it off like I was ok when I most certainly was not. But there was no reason for me to feel that way, so I've always felt guilty about doing it, and explaining my absences to them. Now I see why I do it.

I feel moody, then horrible, followed closely by anxiety and then I just sink into a deep depression, which just makes me more anxious. This is not who I am! But who am I? I am morose, overwhelmed, and I snap at people. I can't sleep, I hurt everywhere, I'm exhausted but if I keep still, even sitting for too long, I am in even more pain. I try to keep moving, but I can't. Eventually I come to a stop, but it's not resting. I know I will just hurt worse, and it's pain that motivates me to get back up, not a feeling of restorative restfulness.

On and on I drag until the cycle is broken, but I don't know yet what causes it or cures it. I've come to realize that I need to start keeping an exact journal so I can decipher what causes my flares and what helps, and that is how I will "manage" this stupid... whatever the hell it is. It's not a disease. A syndrome. Whatever.

I spent most of the weekend freaking out. Yesterday was an endless loop of get up, move around, pain, exhaustion, sit/lay down, fall asleep, sleep briefly/fitfully, wake up in more pain, force myself to get up and start moving again, repeat. By the end of the day I was just beside myself, horrified at my complete and utter sense of worthlessness.

My husband had a talk with me, and kept telling me, "Tomorrow's a new day, Jill." I wanted to take the dark cloud of doom hanging over my head and stuff it into his optimistic mouth, but it seems he might be right. I feel better this morning. To be exact: I feel like a flaming sack of shit, but it's still better than yesterday. I have a shortened (read: realistic) list of things to do, as per my husband's brilliant idea. My usual M.O. is to make a list of everything I need to do, most important at the top, and run out the door with the list. I do as much as I can, but it's never enough because the list is never finished by the end of the day. Usually a lot of things that weren't on the list are accomplished, but somehow they don't seem to count for much if I can't cross them off. Hmph. So, a realistic list is on the menu for today, although I can tell you now, it's taking a lot of willpower not to add to it. I have a lot to do, even more so because the last few days have been nearly worthless.

But I seem to back on my feet, so today I'm off and running... er, walking. I'm learning that flares are precipitated by overdoing it, so when I have a string of bad days followed by a good day, the worst thing I can do is go nuts and try to make up for lost time. Which is so absolutely and positively like me...

I get the feeling that "managing" this condition is going to mostly consist of managing to control my own behaviour.

*raspberries*

(Note: I have plenty more to say about the whole chronic myofascial pain syndrome and fibromyalgia thing, but I don't have time. That and I don't want to tweak out my shoulders by suddenly sitting and typing, typing, typing. So frustrating! I'm hard to manage, it seems.)