Another chant poem (cuz i dig it!)

“ONLY”

 

Morning hit harder than it should

so it took hours to get myself out of bed

It seems like no matter how well

I think I’ve slept, I’m still tired—

but it’s only fibromyalgia.

 

I took a shower, put on makeup

and then needed a short rest,

had a salad for lunch, though “fatigue”

doesn’t always equal “good choices”—

but it’s only fibromyalgia.

 

For three days last week

I thought my skeleton was on fire,

and today’s a much better day,

I only ache like the flu—

but it’s only fibromyalgia.

 

I was scared when I drove

‘round that familiar corner

and felt lost, hateful when

my brain’s all smogged up—

but it’s only fibromyalgia.

 

Good days I can go to the gym and

still run errands, but not usually,

sometimes people think me a lazy

maker of excuses ( even I call me useless—)

but it’s only fibromyalgia—

 

and that’s not like a REAL thing, is it?

I mean, you can’t SEE it….

The good, the bad, and the just plain ugly of being an emotional sponge.

Here's the Story of the Day: Ghosts of the Past I'd probably have more trouble with the ghosts of the past, she said, if my memory wasn't shot to hell.

One of my hubby's Alabama cousins introduced me to StoryPeople. Whimsical, odd little things like the above arrive in my email daily. I love them.

If I were writing for them, I'd write one about myself that went something like this:

Being far too emotionally driven to be of

use in the real world, she has decided to

reside in a fantasy world where she wears

flowing skirts and is thin.

For this to make sense to anyone but me, I should tell you what I mean by being an emotional sponge, which is how I see myself. I seem to absorb the emotion of those around me, soaking up their anxiety, anger, depression, whatever. I then seem to internalize it, feel it, take it in personally, which then causes stress which makes my body hurt.

The "just plain ugly" of the above:

    *Pain, the fibromyalgia pain that reigns supreme in my body when I get too stressed. Let's face it, pain of any kind is just plain ugly!

The "bad":

     *I can't really watch the news or those Cops type shows. Sad humanity burns to my soul. As does sad-animal-kingdom. (Weirdly though, I'm so fascinated by Hoarder shows that I can watch that particular sad-humanity-sad-animal stuff. And the animals always get taken care of.)

    *I'm very susceptible to having my emotions put through the wringer. I give you as examples, the AT&T phone company commercials on the "Reach out and touch" theme that ran during my pregnancy with my daughter (seriously, so touching, people reuniting...grandchildren calling.... *SOB*) and movies/books/tv shows can cause me serious emotional trauma. For instance, Grey's Anatomy. I was done with the show after sobbing my way through the last part of the first season. And don't even get me started on that French novel, "The Elegance of the Hedgehog" we read for bookclub.

The "good":

    *I can be pretty caring and compassionate.

    It makes me a good nurturer, and being a foster mom to drug-affected babies suited me well those ten years, and I love being a mom!

    *I like most people and enjoy talking to strangers in stores, and love knowing people's stories.

    *If I ask you how you're doing, I actually want to know.

So I guess like most of life, it has its good points and bad points. I'm glad it occurred to me to write this post since all I was seeing was the negative side, but now I've reminded myself of the good. So I guess I just need to be willing to wade through the bad and the ugly to get to the lovely land of the good. 

Skimmer's Recap: Note to self: buy yourself some rubber boots and just keep moving.

   

 



Gall bladder surgery proves effective distraction from Fibromyalgia.

I don't think I'd recommend it, but overall, emergencies involving gall bladders and gall stones and surgery prove quite effective in taking one's mind off other concerns. First there's the amazing pain, then there are the good drugs to rid you of the amazing pain. Then there's the "eeewww" factor of having four slits in the belly, and the fact that you now feel like you've been mule-kicked repeatedly in the torso. All good distractions.

It was suggested to eat a low fat diet for the month after the surgery and allow my body to adjust to the fact that it's missing the gall bladder, previous fat monitor and cholesterol collector. (That's what the Child Surgeon said the stones are made of, cholesterol. How gross is that?) My very kind oldest daughter offered to bring dinner one night: chicken and rice soup for me, and her rich, homemade, eternally yummy macaroni and cheese for the rest of the family. I will not discuss here my jealous and petty thoughts about all that. I am choosing to be The Better Person.

My appetite has suffered with this event, and that takes a lot, so I was grateful for the easily digestible and tasty soup--aaaall week. Yup, I ate soup and saltines for a week. Not too surprisingly I've lost a few pounds. Too bad "a few pounds" on me is like bailing the ocean with a teaspoon, but I'll take it.

And when did I start even thinking about My Friend Fibro again? Not till I slowed down on the Really Good Drugs. I know there are multiple things at work here. The trauma of the surgery and the anesthetic come into play too, so my pain and fatigue is at the moment many-faceted. Some people have said they were ready to get up and get on with life right after surgery while others said they were exhausted for months. Guess there's no single outcome.

Okay, I'm boring even myself here. I'm done.

Skimmer's Recap: Want to forget your current chronic pain? Try a bigger, more acute pain. It worked well for me.

Cymbalta Withdrawal is the B Word.

Wow. The things they do not tell you.

Take this, they say. It will improve your life! And maybe it does for a time before your body gets used to it and you end up with only the side effects and not the benefits. What then?

If you watch television at all, you've no doubt seen the commercials for Cymbalta, one of the wonder drugs of the 21st century. Their tag line: "Depression hurts." As does Fibromyalgia, one of the uses for Cymbalta. Quite honestly, I've dealt with depression over the years, so when I got clocked upside the head with Fibro it did cause some pretty depressed feelings. Chronic pain can drag you down no matter how Pollyanna you want to be.

Apparently, Cymbalta works with the central nervous system to reduce the pain of Fibromyalgia. My doctor and I decided to try it out. And soon I actually felt a difference, a lowered perception of pain at least. One thing about a person who hurts 24/7 is that they're willing to try most anything, (as I realized about myself during the "What doesn't kill you makes you stronger" Fentanyl era) with little thought to the aftermath. Common to most of the people I attended Pain Management class with, I would like something to just take the pain away! But we don't always go in with enough information to be clear on what the medication might take away along with the pain. Sometimes we lose more than we gain--like the ability to feel life or deeply enjoy things--and the withdrawals can be a b****!

Today, for example, I see that people from Georgia, Virginia, Texas, and Brussels Hoofdstedelijk Gewest (I couldn't tell you where that last one is, let alone pronounce it) have visited my post on "FENTANYL: the Withdrawal Experiment."  How many of the people who've started out innocently and trustingly enough on a plan to reduce their pain levels have found they are now in the pit as they try to pull back out of the pain medication fog? And I'm by no means saying we didn't NEED the help or even benefit from the medication, but boy howdy, we need help getting off!

Common withdrawal symptoms from Cymbalta that I've read on message boards online etc:

• headaches
• intestinal upsets, bloating
• brain zaps (electrical feeling/sounding jolts that go through your brain and body)
• dizziness
• nausea/vomiting
• "irritability"

And that's just to name the main few. I put irritability in quotes, because would you call Jack the Ripper "just a guy with poor social skills"?

What I personally experienced:

• loss of words (it's taken me weeks to write this post)
• PAIN and muscle fatigue
• brain zaps
• intestinal upsets
• minor dizziness
• DON'T LOOK AT ME WITH THAT TONE!!
• Oh, really? You don't like what I made for dinner? WELL YOU CAN JUST BLEEPING BUY A NEW SLAVE!! *sob*
• Um, "irritability."

I'm now 5 weeks off the Cymbalta. Still experiencing extra pain and muscle fatigue. Brain zaps are gone. I followed advice from Cymbalta withdrawal online boards (such as cymbaltawithdrawal.com and depressionforums) to take extra Omega 3s and drink lots of chamomile tea, and within 3 days the brain zaps were over. The extra dizziness is gone. The words are coming back and I can actually string a few together now to make a complete sentence. The intestinal upsets resolved within the first 2 weeks.

While it has improved, I'm still working on the irritability. Has my true self merely come forward and I am really an impatient, screaming lunatic? I really really hope not. As does my family.

Picture of me withdrawing from Cymbalta.

No, not standing above, the one at the bottom.



Skimmer's Recap: Cymbalta withdrawals are not for the weak. Or for our families.

Fibromyalgia and Me: A Semi-Concise Retrospective, Part 1 of 3.

Having grown up holding my breath, my whole fight/flight/freeze system was pretty tender already. I think that each major emotional upheaval in my adult life just caused the skin on that system to become more and more fragile, until one day the final emotional hit came that tore through that thin skin altogether.

Year 1. April 2005.

I am doing a program at home that’s a combined upper/lower body set of exercises involving 5 pound hand weights. Suddenly, where I’ve been easily able to do 10 repetitions, I can only do 3 before my muscles simply won’t move anymore. Suddenly, on my first trip down the stairs in the morning, the bottoms of my feet seem filled with rocks. Suddenly, my solid nights of sleep become fewer and fewer, and my body is achy and stiff on waking. I have a few driving experiences where I turn a corner in a perfectly familiar neighborhood and ask myself, "Where am I?" I’m exhausted all day long—every day. What is happening??

I find myself pushing my doctor to actually test me for possible medical explanations. Her answer, (with a look of embarrassment for me,) is that "Sometimes when we deal with our emotional/mental issues, these other pains go away." JUST TEST ME PLEASE.

I am doing my own research online and in the library, and there’s a cluster of medical issues including Fibromyalgia with similar symptoms. It appears to be the least deadly of the bunch. I convince the doctor to test for all the others to rule them out (or not), and finally get her to do the thumb pressure test set up by the American College of Rheumatology on the 18 “tender points” associated with Fibromyalgia.

"Oh." My doctor looks up at my face as she presses lightly on places that made me flinch in pain. "You do seem to have Fibromyalgia," she says in surprise.

This has only taken 10 months, as opposed to the many years that others have suffered with Fibromyalgia before getting a diagnosis. I count myself fortunate.

Thank God I am already seeing a therapist. She helps me stay sane during this time.

Year 2. 2006.

More reading and more reading. More horrible days of exhaustion, my body feels heavy, like gravity has gotten stronger. More full-body pain, some days burning like fire, other days a flu-like aching.  My spirits head to the pits of Hell. I give in to the silly question of "Why me?" when I already know the more realistic question is "Why not me?" We are broken people in a broken world. Our bodies break down. Things go wrong.

I have a sleep study, and find out I do have sleep apnea. Maybe using the cpap machine will solve the poor sleep/waking up exhausted issue.

 It doesn't. Why not me?

to be continued...

Fibromyalgia and the Perils of Not Listening to My Body.

But there were sales, and the opportunity to go shopping with a friend at the outlets. And then there was my trainer the next day. So I didn't listen when I should have.

Shopping and training and pain, Oh My.

You see, in Fibromyalgia, the body talks. Much earlier than they used to, the muscles yell "ACK! NO MORE!" But I must be listening.

Nothing about me looks different to remind myself or others that something is different. No cast, no limp, no wheelchair. Just the same Julie that walked the earth 20 years ago, give or take a pound or 40.

A person with a back injury may walk with a cane. I've known one of those. A person with a broken bone wears a cast. I've done that. Even a person with a cold probably has a red nose. But with Fibro, we just look like our same old selves, because the working of it is inside us, in our central nervous system, where our bodies tell us that a gentle wave of pain is actually A TSUNAMI RUN FOR YOUR LIVES!

The funny bit (well, not at the time maybe) is that when I am in a flare, having overdone and caused a tsunami, even my brain gets scrambled. Those days my brain is a shaken snow globe, and the flakes of snow are pieces of words and thoughts and scribbles that just can't quite connect to make a whole ANYthing. I once saw a movie where a confused woman wore her bra on the outside of her shirt to work. When I started experiencing the "brainfog" of Fibro, I thought, "Oh no!! That could be me!"

Honestly at those times I fear for myself and my decisions. Should I be trusted with a car, or trusted out of the house at all?

I was there for all of last week and into this week, in FibroFlareLand. Hadn't really visited there for more than a day at a time in several months. Got a little cocky about that. Felt a little powerful. Thought I was strong.

And again I was humbled--I was reminded that I have this thing, this interloper and interrupter. But since this is my life right now, I'm trying to learn to muddle through--trying to show up for the gym, show up in my family's life, show up for myself.

These times of weakness remind me that in myself I'm not really all that strong. I'm at the mercy of this thing that lives in my body. I want to be all spiritual and be able to calmly say, "God's strength is shown in my weakness," but in all honesty, I don't know whether I'm doing that for Him. I'm still not sure what that looks like in this case.

The flares bring me down, but not as far as they used to, so I must be learning. Maybe that's where His strength comes in. I'll keep you posted if I ever figure it out.


What's your place of weakness?

On Life: Embracing It.

I'm feeling, closing in on 6 years after my fibromyalgia diagnosis, 10 years after my mother's death sent me to therapy, and 57 years into life, like I actually want to embrace life. My head's in a better place than it's been, my body is getting better at dealing with the fibro pain, and surely all that is worth shouting "hallelujah!" about.

I've dealt with depression most of my life--coming from crazy can do that. Honestly, in all my years I have never thought "whoopee! I hope I live to 100!" To a depressed brain, that sounds like a sentence, not a gift. But mentally off-kilter mothers and such be thanked, since at least that relationship sent me to make new friends of Mental Health Professionals, and they've helped my brain become better balanced.

At these realizations I find myself (tentatively) hopeful. It's difficult to be a negative positive person, since one should cancel out the other. But at my core, given God's grace in my life, I am positive, I have hope. But life has at times taught me to be negative, to be fearful. Yet I desire to Embrace-- hope, life, the fact that I'm constantly surprised to find myself in my late 50s.

Thinking about embracing life got me thinking about other times of learning to embrace. When my oldest daughter was dating her first husband, he startled me by hugging me. I wasn't used to that, but it made me rethink my physical and emotional distance from people.  My in-laws were not physically affectionate people, but when they retired and moved a 7 hour drive away, my husband and I decided we would start hugging them. It was awkward at first, but--well, but nothing, it was always awkward. When my close friend was diagnosed with ovarian cancer of stage Too Late, she refused to talk about the possibility of dying. Her friends didn't know what to do with that--how could we prepare for the loss? Say goodbye? I learned to embrace the simplicity of saying "I love you" whenever we parted. Now I'm a serious hugger, holding all my friends close to me while they're in my life.

It's important to demonstrate how we feel toward each other. In the same way I've learned to embrace my friends and others I love, I'm hopeful to learn to cherish my future, and not fear it.


Skimmer's Recap: julie thinks about life, gets all mushy-wushy about it, but publishes the post anyway.

Knitting endorphins.

endorphins

n.

Any of a group of peptide hormones that bind to opiate receptors and are found mainly in the brain. Endorphins reduce the sensation of pain and affect emotions.

(from Answers.com)

I've never been one to get an endorphin rush from running/biking/mountain climbing/skydiving--mainly because I lack the drive  to get out of the starting gate, let alone the endurance to reach that awesome endorphin high I've read about. And yet, according to the definition above, I've been an endorphin junky from the start. Since childhood, I've found creating, thinking about creating, collecting ideas for creating, all create me a happy place. That's a place with positively affected emotions that over-rule mental, emotional, or physical pain, without the nasty side effects of an opiate.  And knitting is only one of the forms of creating I enjoy.


Perhaps I should market a bumper sticker that says, "I Knit for Endorphins." It could catch on.


One of my favorite things about searching the WorldWideInterWeb is seeing this sort of thing pop up:

Find Endorphins Huge savings on Endorphins: Browse a large selection  & grab a bargain!  www.best-price.com/Endorphins

In all honesty, I would love to "browse a large selection of endorphins and grab a bargain" but you and i both know, best-price.com does not carry them. So why tease me?


Anyway, back to knitting and endorphins, I bought some beautiful yarn when I was in Alabama,

at the store below, "In the Making." Great name, eh? The yarn is really a bright, beachy turquoise, but apparently there are limits to my iPhone's photo capabilities.

And once inside the store,

the sight alone of bins full of yarn starts the endorphins rolling for me. 


The particular yarn I purchased has a great story as well--

for beyond its cool name and tag, there's a great back-story to the yarn. The company is MANOS del URUGUAY, which means Hands of Uruguay. It's a "non-profit organization that assembles over 400 artisans in cooperatives scattered throughout the countryside of Uruguay. The aim of the organization is to bring economic and social opportunities to rural women." The yarn is hand dyed in large kettles, creating the striated effect.


I think life is hard if my economic status says I need to cut back on my lattes, and here's a company making an amazing product that is helping women even have an economic status.


I wish the photos could show the reality of the color, texture, and marble-like shading.  The yarn is a Peruvian cotton of wonderful softness. It came in a hank, typical of the nicer (translate: "spendier") yarns. When initially untwisted from the hank it looks like that first picture above, a big loop of loveliness. (And in a new experience, these hanks were tied with the devil's own knot--likely offered to me by God in the interest of teaching me that I may need patience, even in my happy place.)


For actually knitting, an evenly wound ball is much better to pull from and less tangly, so you use one of these:

a yarn swift,
and one of these:

a ball winder, to make these,

lovely cakes of yarn, with the yarn pulling from the inside all neatly and efficiently.


In case you don't know what swifts and winders are, here's a quick explanation. The swift (which looks, I realize, like a badly designed umbrella) serves as the hands to hold the opened hank of yarn so it doesn't tangle--while the winder turns and rolls the yarn into the adorable (yet sadly inedible) cake. The  "real" type of yarn store (one that is all about the fibers and doesn't really offer non-fiber related products and has a cool fiber-related name) usually has the swift and ball winder on hand so they can do it for you if you don't have the equipment at home. Me? I love gadgets. My winder is a simple hand crank while the ones at yarn stores usually use power. Mine was cheaper, and surely cranking by hand must burn off a calorie or two as well?


Next time I'll show you what I'm making with this reminiscent-of-a-summer-day yarn, just in case you're interested.


But getting back to the endorphins, I think I can use knitting--all parts of it from the yarn store to the finished product--as natural pain relief and more balanced emotions. Shouldn't that make it payable by my insurance? Hmm... I need to check into that.


Where do you "browse" for endorphins? What's your endorphin-high of choice? And let's keep it legal, and not too embarrassing, okay? ;-D




Skimmer's Recap: i browse for MY endorphins at the yarn store!

A small moment of clarity.

For those of you who have wondered where i've been other than Blog-land, i must say i've been in a very strange place. This strange place, Opiate-land, has messed thoroughly enough with my brain chemistry to send me Through the Looking Glass. i've been in some alternate place, close enough to be recognizable, but different enough to be a little frightening.

The super weird to me part is that i didn't even realize i was walking these different sidewalks. They were maybe a bit bendier than the usual sidewalks, and the other people beside me a little less recognizable. But still my streets, right?

Apparently not. i had a scare or two where i came very close to fainting--realized something not right was happening in my head, and went down to my hands and knees so as to not break furniture. Twice, i did this twice in a couple of days. Dean said later, "I think those were anxiety related." i just thought i was getting the flu, or getting a weird reaction to the higher dose of Fentanyl. i called the advice nurse who felt i should go right away to the emergency room. So we did, along with the rest of the patients on gurneys lining the halls. A bit busy. But once my blood pressure was checked in several positions and my pulse and my pee were taken (both of those in just usual positions) and then an EKG was done, it was determined i could go home. "If anything changes, let us know." i took home a smaller 112mcg dose of Fentanyl, which i've used in the week since.

Weird things in this new place i was living: i couldn't remember last week. i knew that in somebody's last week i did a few things--barbecued, picked up my granddaughters from school, showed them our new puppy, went back for a follow-up visit at the pain clinic, visited a friend. But it was like thinking about something someone else had told me, not like my own life. Bizarre. And i had spent a week doing crazy gardening--Must Dig! Must weed! Must trim all bushes on property! To the point that i've hurt my right shoulder so that i'm still feeling it.

So i decided to pass out again--hubby said, "Why are you panting like that?" joining me in the kitchen. "i don't know!" "Are you going to faint again?" "i'm getting that weird feeling again!" "You're hyperventilating, that's why." He helped me to the couch.

i then found myself in full panic attack mode, a place i have visited before and sworn to avoid forever after. And yet there i was on those dark, dark streets. i could feel the stripe of "fight or flight" adrenaline lightening run from toe to head, over and over. Hubby is reminding me how to breathe deeply, and dang it i was trying but it was so hard to do... All was dark and scary, and i couldn't see what scared me, there in the dark.

When i could finally track the course of events, i realize that when wearing Fentanyl patches, if you get hot, such as by doing yardwork in the sun then soaking sore muscles in a hot tub, the drug dumps into your system in a jolt. Bad business. But even before that final opiate indignity, strange things had been brewing.

Hubby and i went back over some of the strange actions of this person walking the streets of Through the Fentanyl Looking Glass and we enumerate: (hubby) growing detachment, confusion, dizziness and fainting, manic, (me) increasing sensitivity to sound like tv or my ipod's music, inability to remember recent times and events...the list went on. And none of these are things i want to cozy up with in a Crazy Land coffeehouse for a latte.

Not wanting to end up in a long list of not too mentally/emotionally stable people in my bloodline, i call the pain clinic and ask them to please begin to wean me off the Fentanyl.

i am now on my way to weaning. i will probably hurt. In fact i did this morning on my 100mcg patch. i will gladly use ibuprofen for my pain if it means i get to leave those dark streets where i lose my creativity.

It's been a long week. i'm still anxious--better at some parts of the day than others. i'm still walking, walking, walking (the dogs are loving it) and doing my exercises, both physical and breathing.

But i'm starting to think i may live. i'm starting to think i will be able to create again. These are good things.

The "i don't know how to feel" Tuesday.

As i journaled my way through the craziness that was my mother's death, i seem to be blogging my way through Dynamo's death. Now, i know there are some people that think grieving the loss of our dog is just rediculous. Perhaps at the present, my blog is not for you. But my blog/my feelings. My little kingdom.

As incredibly sad as we are about our little Dyno the dachshund, i'm glad we didn't lose a child! But Dyno was special from day one--my hubby was having a hard time with work-- the events of 9-11 caused the Oakland leg of United maintenance to be closed down. i had just been downsized from my job, and he had been cruising the internet looking at puppies. He'd wanted a black and tan dachshund since having a full sized black dachshund during his growing up years. i'd harrassed him for years about them not being cuddly dogs, why did he want one of those?

He found one he could see locally at a petshop. i didn't even know there was still such a thing as a petshop with actually cats and dogs around anymore. We asked to see the little black mini dachshund, and Dean sat down on the floor. This little 3 pound puppy dog ran around in circles, in and out of Dean's lap. It was a picture i'll always remember, this big ol' tough mechanic guy sitting cross legged on the floor, playing with the tiny bundle of energy running full tilt around the petshop floor. i just looked at the two of them and melted. That puppy was ours.

We picked up a few things neccessary for the care and feeding of this bitty little meatloaf sized doxie, and headed home, me driving so Dean could love on the dog. And thus began the love affair between Dean and Dynamo.

Dean carried him everywhere in his coat jacket for a long while--bundled into his neckline, tucked into his pocket. We went on several trips in the motor-home that month of October 2002, and Dynamo prouldly rode along in my lap in the passenger side seat. When not on my lap, he managed to weasle his way into his daddy's lap or coat. He was the proudest, most loved puppy in the universe just then. We watched him play with toys and eat his kibble and took photos of every tiny move he made, just like the parents of a new baby.

It was beyond a doubt the match made in heaven. The two of them absorbed and reflected their love and admiration for each other. He slept up against his daddy's back in our big California King sized bed. i walked ever so carefully while preparing meals in the kitchen, as he was such a little bit i was always afraid i might step on him.

He grew into king of the castle--one or two daintily placed licks on his daddy's nose when he got home from work, and he had his daddy's heart all over again.

Probably all of that doesn't sound that amazing to a reader--but how do i put into words the amount of sanity that little dog meant for his daddy coming home from the craziness of his job? i don't know that i can. How do i express the amazing feel and smell of his fur and his neck as we held him in our laps and snuffled into him? i don't think i can.

There was just so much we loved about him, and so much he gave back in love and cuddles and the little squeals to say "pay attention to me!!" He could be demanding. He could be bossy. He could be many things one could call signs of the "unbalanced dog" Cesar Milan "The Dog Whisperer" style. Dogs aren't supposed to rule the grown-ups. They aren't supposed to be the ones to call the shots. But Dynamo did. And you know what? Those were many of the reasons he wedged himself so firmly into our hearts and our lives.

A few people came by to share our pain last night: friend Sabrina who upon hearing the news said, "Where are you? I'm coming right over!" And friend Adina, who loved Dyno and loves us, came and brought flowers and cried along with us. Our youngest daughter, Corinne, and her hubby Luis came over and spent a long time just talking and listening and sharing our feelings, and they made waffles for dinner, the RIGHT way--you've heard of the EZ Bake Oven? My cooking style is how they named that. i am an EZ Bake Cook. i just throw all the parts of the recipe into a mixing bowl, mix it, and call it waffle batter. They followed the "separate the egg whites and beat till stiff" part of the recipe, and came out with these amazing fluffy waffles you could just eat straight off the waffle grill with nothing added.

Jarel is having a hard time too, frustrated at not having been able to say goodbye to Dynamo. But we are simply trying to share our grief among all of us, it definitely lightens the load for each individual to share this huge stone castle's worth of pain and loss we are feeling. The castle has lost its King.

i know we will heal, i know we will one day simply be able to look back on Dynamo's short 6 years in our life with only the great memories. Right now that time looks to be somewhere so far beyond reach. i need to just rest in the comfort of my God and my family and friends. And thanks to those of you who have reached back to me in this blog.

i feel oddly devastated. But it got me out of Pain Class, at least temporarily.

Yet another reason i would make a lousy druggie.

i realized that since oxycodone has received publicity as a white-collar addiction, people must receive some perceived-as-positive effects, right? It looks like its feelings of euphoria are the main reason people abuse this little pill.

Me? Euphoria? Nope--the most positive thing i received out of the feelings of oxocodone has to be that i was feeling kind of hyper, so i reorganized my underwear drawer.

Meditation.

When i heard that my pain management classes would include meditation, i admit to a little trepidation. In my mind the word "meditation" goes straight to visions of Buddhas, little clinkly bells and incense. Since we are not allowed scented things in class, the incense would be out, leaving Buddhas and bells.

Being a professing Christian, i had some questions. But logically Kaiser healthcare wouldn't be allowed to promote any specific religion. So my brain then went to "let's see what this is about and how it can benefit me."

My thoughts were, "i can do anything as long as i frame it in my relationship with God." This became my visual--julie in the center of a large-ish picture frame (a tasteful one, of course.) And that frame is the representation of God: all-encompassing, holding me in His center. i've sensed Him around me since i was a child, helping to reign in the chaos of my home.

My thoughts went from that picture to the thought that, anything fitting inside that frame of His will can be used.

In class, what meditation has come down to is training yourself to still the mind, toss away the million worrisome thoughts, even simply the million neutral thoughts that run through my mind at any given moment. And who is God anyway? Peace in the midst of the storm. Oddly, once my mind is calmed i am actually in a better place to be receptive to God.

Most of the meditations we've tried have involved watching our breathing, constantly refocusing our mind on the breathing and off the "i need to pick up milk" kinds of thoughts. Or the ones that kept haunting me all through the week without Dynamo: "oh i hope he's doing okay!" "i hope he gets to come home soon" "how much is this gonna cost??!?" i've discovered my breaths have shapes--curlier when i am first watching them and trying to concentrate, less curly and more of a wavy shape as i focus in, and wonderfully smooth and swishy when i'm the calmest. Really. They do.

And do you know what? The focusing on my breathing to chase away what they call at class "monkey mind" when your thoughts are jumping all over the place, actually lessens my pain. We also have relaxation sessions, and honestly i'm not sure what the difference might be, since they both have the same effect on me. And between those and the gentle, breath controlled exercises, the stress i hold in my body because of the constant pain lessens.

The sad part of it is, as much as we work through finding a medication regime that brings my pain level down to one that will allow me to move on with my life rather than be frozen in it, i may always have some pain, i may always have to monitor how much i do ("pacing" as it's called in class) to keep the pain down. But these tools help me to have hope again. Already i am less sore in the mornings. Already i'm learning to let the worries go for bits of time.

Hopefully the next few weeks will continue to teach me.

One of those days...

i had a dentist appointment this morning. You know, just a couple of x-rays, some tooth scrubbing, a reminder to floss, take my free toothbrush and head out.

But no. "Do you have an hour or so free right now?" Seems i have need of a crown on the left side and a filling on the right. Swell. And they can start the crown today.

"Well, i do have the time free, but this wasn't was i was planning to DO with it..."

Two very tiring hours later, i was done. i was simply too done in to do the shopping and errands i had thought to do after my appointment. i was chatting with one of the technicians about how fibromyalgia affects even the most mundane dentist appointment, reminding me for days that i've had something done.

As i was leaving, a man in the waiting room said, "Excuse me--did you say you have fibromyalgia?"

"Yes," i said, pausing at the door.

"My wife has it, you know, with the tender points on both sides of her body, all the way up and down," he said gesturing at spots on his body that i'm pretty familiar with. "She's a stresser and a worrier, what with work and the kids."

"Ah," i said. "So, how long has she had it?" i ask.

"Well, it's been about 3 or 4 years now, but she treated it with therapy and massage, stuff like that, and now she hasn't had it for a while," he said proudly.

"Well, good for her, that's great!" i said.

By this point i have a sore mouth and i'm depressed. i had 5 years of therapy, and numerous massages, yet i still have fibromyalgia. What's wrong with me? Why do i still hurt?

i loaded my sore mouth, my depression, my new lavender toothbrush and my constant companion fibromyalgia into the car and went home.

A couple of shades of day.

Today was a fun day, then an interesting and sorta stressful day.

For those of you who *skim* (you know who you are--) there will be a Skimmer's Recap at the end. So you may jump directly there.

Okay, now i'm just hoping there are still others reading the middle--but i shall forge ahead, whatever the reading population is in this Between Land.

Hubby of mine went with me to meet up with daughter Corinne at Ikea. i love Ikea. So much to see, never enough time, or energy. The first time she and i visited Ikea when it was a new and exciting local adventure, at the end she said, "It's like visiting a theme park--you have to park way far away, you spend hours, and then you're exhausted afterward." Ah, but we loved that day, i myself was in retail heaven, and left dreaming of nicely arranged coordinating rooms with no stacks and piles of miscellaneous Living Leftovers.

Anyway, this Christmas we are meeting at Corinne's, and chef husband Luis is cooking. How cool is that? They're pretty excited about it, (as am i!) and planning how to fit 10 or 11 people into a tiny apartment. Since they have small sets of dishes and silverware and such, we looked at plates and glasses and linens. Didn't find much of the things we were looking for, but we each managed to spend some money. Funny how that works. It was fun.

From there hubby and i went straight to my appointment with the Chronic Pain Management Clinic. We met with "the team," which meant i went into the meeting feeling intimidated already. They're nice people, don't get me wrong, but i wasn't sure what to expect. i know at 54 i am considered A Grownup, but i still have a hard time not going before those authority types without trepidation. They asked questions, i answered the best i could, trying to use good body language and not drooling. i think i pulled it off.

Anyway, the next opening for the program isn't until APRIL 22ND!! i guess that's the handy thing about chronic pain, it's not going anywhere, and i will no doubt still have it in April.

One of the doctors becomes my pain medication guy at this point. i decided that instead of trying to manage my pain simply with ibuprofen, i will try the "hard stuff." Rather than being proud (and in pain) i will try being a humble user of something stronger, and hopefully not in pain. i have mixed feelings about that--on the one hand i have feared medications that are habit forming, what with my heritage being of the addictive persuasion. On the other hand, i'd like to NOT HURT SO STINKING MUCH! So guess which hand wins?

i have a mix of feeling that i'm giving up on getting better (some people with fibro seem to get it under control) and of hope. The hope comes from thinking that if these guys at the clinic have as much success as they seem to, maybe my mental/emotional self will allow me to take the steps to be physically healthier.

SO--here's the Skimmer's version, as promised:
Today--Ikea, Fun. Doctors, stressful yet interesting. New pain med, mixed feelings, giving up? hope? We'll see.

;-)

Something Oliver forgot to tell me.

Okay, i should know this already--when you have fibromyalgia, just because you CAN do something doesn't mean you SHOULD do something.

This morning i am being reminded of the early days of this fibro thing, where i felt each and every sore muscle and bit of skin with a new awareness. i'm guessing that 40 minutes walking a dog was overkill for me, and i should "just do it/i don't have to love it" for shorter periods, maybe more frequently. Maybe my "point of no return" needs to be around minute 7.

It's painful on many levels--the bathroom scale says something needs to change, desperately, i was somewhat inspired by MyFitnessPal.com, and getting extra calories for the ones i burned, well that all sounded magical! But today i can feel the ache in each finger, up my arms, and in every place else in my back/shoulders/legs/feet/you name it. i even dreamed i was stuck cleaning vinyl chairs in rows in an auditorium, and i was so tired and so sore but i couldn't get people to help, they were just sitting there talking and ignoring me. When i hurt even in my dreams, there's another lesson to be learned.

If you're at all curious about fibromyalgia, ProHealth has a good website. They also have information on quite a few other medical conditions, and a store with quite a variety of supplements, so check it out.