Poeming: "F" Words.



This doesn't really go, but it made me laugh. Good enough!

Over at Poetic Asides the poetry prompt for the 15th was "infestation." So i wrote this bitching poem--and i don't mean like "Bitchin' jogging suit, dude!" i mean "bitching." (Hmm. Should i make that a new tag for the label cloud?)

“F” WORDS.

and when fatigue infests
like locusts on a vine
like ants marching in line
steadily, thoroughly

this ache that won’t give up
like fire in my veins
and I don’t hold the reins
plaguing me, utterly

they say it’s in my head
yes there and in my legs
and the rest of me, it begs
believing me, “pains”takingly

some days I barely bear
the weight of it
I’m in the pit
totally, submersedly

Some say “Well you can’t DIE from it”
that’s the good thing—
also the bad thing—
occasionally, Fibromyalgia-cally.


jle 2013

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….

Will she find fitness inspiration in a heart rate monitor? STAY TUNED!

i bought this Polar heart rate monitor, the FT40, from Amazon. (Yes, from Amazon. Doing my part to kill small business. Please forgive me.)

Lately i've kind of run out of my exercise and fitness mojo. i feel like when life came up and slapped me with my sister's unexpected death in March, my brain has been taken up by other things--since it has always looked for good "reasons" to not get off my duff and get active to stay healthier. But i must push on....FORWARD HO! and all that inspiring rot.

i preach it to others, this keeping active, this exercising thing, In Pursuit of Better Living with Fibro. And if i'm gonna preach it.... *SIGH*

So i'm hoping that once Ivania My Paid Friend the Trainer helps me get all the settings right on it, i will be filled with a Renewed Sense of Joy in Exercise. Perhaps i should be writing Polar's ad copy. Perhaps NOT if they actually wish to sell them. i can see it now: "POLAR HEART RATE MONITORS! JUST WEARING ONE IS NOT ENOUGH!"

i'll keep you posted. (--Get it? "Posted"? Blog "post"?)

Alrighty then. Beam me up, Scottie! (yes, i will likely be using my cool watch like i'm Captain Kirk. And you can't stop me.)

Skimmer's Recap: Get yourself one of these watches and you too can be cool like me. Meet me on the bridge in 5 so we can compare heart rates!

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.

   

 



New! Improved! Fibro-Flare! 30% more effective!

"New Improved Elvis! Now with less drug habits!"

I decided I really should write down when I'm in one of these amazing "flares" that join me on this journey through Fibromyalgia-land. Then, when it is over and I am in the land of simply Constant-Nagging-Aches-and-Fatigue, I would feel like the Luckiest (old) Girl Alive! (Insert picture of me dancing Sound of Music style--and try not to laugh.)

Oddly, I had just gotten on the computer to write this joyful saga, and the first thing I saw was an update from Mary on Fibromy-Awesome, in the midst of her own crash. She's young, late 20's, and has been dealing with this Ball O' Fun since she was 9. Yikes. Anyway, it's so very strange to read what someone else wrote about how they are feeling while in your head you are saying things like, "ExACTly!" and "I hear ya little sister!" (Yup, it's weird in there.)

So, just so I can refer back to this when I feel so much better than I do now, I shall enumerate or at least e-bullet-point what this current Gigantor Flare feels like.

• I am sooo tiiiired I feel like everything I do is in that slooow the recooord doooown voice, which is the speed I can move and think. Not good for driving a car.
• Everything around me is brighter/louder/bigger/faster, and more startling, possibly due to everything IN me being duller/slower, and more easily startled.
• My usual non-morning-person self usually wakes around 7:30 or 8 a.m. and reads a while before I get out of bed while letting my body stiffness calm down, but in a flare I sleep for more like 12 hours at night, though I will wake several times, and have loads and loads of crazy dreams that stick to me and follow me around all day like dog poo caught in the treads of your shoe.
• Many naps are involved in the rest of the day.
• My head is all "brain-smoggy." It's really called "brain fog" but I find it a much nastier, dirtier substance, thus "smog." I can't quite understand, retain, or make sense of much of anything I try to read to pass the time,  and I will probably come back to this very post later and tell myself to never ever post anything again when I feel this way.
• My eyeballs hurt.
• My skin hurts.
• My head hurts.
• My hands feel swollen but are not, and they hurt. I clapped them at our barking dogs, and jolts of pain shot through me like the stars in cartoons when someone gets "boff!"ed.
• Every body part not mentioned above hurts in a "Shoot me with an elephant tranquilizer dart, please!" kind of way. It's a general pulsing, burning, aching sort of pain all along my skeleton.
• If I take enough medication to not feel the pain, I can feel little else and definitely cannot hold up my end of the conversation, since I may not even be able to feel my tongue.
• On Fibromy-Awesome, Mary mentions the sensitivity to sound and how it can make you yell things that sound like "you are on crazy-pills." I mostly yell the things in my head, and yes, it starts to sound crazy(er) in there. I find I have to just go away to my room and try to close out the world, otherwise the inside of my head starts to sound like a Porta-Potty looks when you mistakenly look down after dropping your "addition" in the hole.
• My brain feels too loose or too tight, just wrong.
• The last thing I want to do is exercise of any sort, and yet I need to.  I believe this is called a "Catch-22," a saying which comes from a book by that name which I have not read, but is in common use meaning a no-win situation. For example: to avoid a flare I need to exercise regularly, but if I get sick with a bad, month-long chest cold and canNOT exercise regularly, I will likely have a flare that will keep me from exercising regularly. See? Catch-22.
• I can possibly force myself to make dinner, if that dinner comes in plastic and needs only to be warmed in the microwave. Otherwise we have the magical dinner called "fending," as in, "Can you guys just fend for yourselves?"

I am going back to sleep now. Good night.

On depression and the magic of cupcake papers.

What is so magical about these little cupcake liners? Maybe it's that they look like little sunshines. Or that cupcakes usually mean some fun is around the corner. All I know is that as I've been fighting my way back uphill out of depression-land, seeing them made me smile.

I know I'm hard on myself--I don't "do" enough, whatever it is. You know: work out/eat salads/cut out chocolate/contribute to life... And I find that I can't seem to forgive myself for having Fibromyalgia and being "less than" because of that too.

BUT--tonight is a fun and special night. Granddaughter Cassidy turned 12 yesterday, and tonight her mommy, my eldest daughter, is bringing dinner over and we're having cupcakes for Cassidy's birthday. Candie's making her awesome 90 gazillion calories per serving macaroni and cheese, and I'm making a salad--and the all-important cupcakes.

If you're not familiar with depression, it has the talent of robbing a person of their interest in life, their desire to do the things they'd usually enjoy, so couple that with the lack of energy and the body pain of Fibro and life can become a struggle. So it surprised me when I found myself smiling over such a simple little thing as cupcake papers with their crinkly little sides. It was a lovely little gift.

It's good for all of us to look for the happy little positive things of life, they called it "intentional happiness" in my pain management class. All I know is I had to put a picture of them on my blog and see if they make you smile too.

Oh well.

I tried. I really did. I tried to clear myself of Cymbalta and live a more naturally medicated life. But today, somehow fittingly on the 11th anniversary of the death of my mother, I embraced the fact that it isn't working. Maybe some would say I didn't give the 5 HTP a long enough chance, or that I lack the strength of character to somehow "tough it out." But they don't have to live in my head and my body.

The moments I've been able to step back and observe and assess myself, I've seen signs that point to the return of depression: lack of interest in things I'd normally be interested in, daily anxiety about every little thing of life, more difficulty than the usual "not a morning person" experiences getting going with the day, feeling chronically overwhelmed. And there's enough "chronic" in fibromyalgia to contend with. All these things have increased over the past few weeks. My trainer at the gym says I've remained more stiff off the Cymbalta, so apparently it really does do some good for the physical aspects of fibromyalgia. At any rate, my experiment has come to an end. I survived the withdrawals only to be unable to survive the absence of the drug in my system. But, "quality of life" being what it is, I choose to once again embrace my need for Better Living Through Pharmaceuticals.

Hopefully I will soon feel more hopeful and less anxious. I mean seriously, I have been anxious about eating, about cooking, about shopping, about every ridiculously small thing! Even my fatigue seems more pronounced to me, which (again) makes me anxious. *Sigh*

Time to move on and get some help for those synapses!

Trying to leave Overwhelmed Lane.

borrowed from LOL Zombie
http://lolzombie.com/2551/get-er-done-with-jesus/

What did I used to tell my kids when they needed to do a project that seemed overwhelming? Break it down.

Like I mentioned in my last post, I'm feeling mired in the Land of Too Much Information, stalled out on Overwhelmed Lane. What did I do yesterday? Let myself hunker down to picnic on aforementioned lane. What did I do today? Assessed my options, which seemed to me to be 1) let myself run screaming into the night, or 2) follow my own advice. Being chronically fatigued and inherently lazy made option 1, while appealing, seem like much too much effort, so I chose option 2.

Faced with too many supplements and medications at too many different times, I made myself a chart. I suppose I could take a page from my preschool teacher daughter and make a sticker chart where for every time I got the right pills taken at the proper time I get to put on a sticker of my choice. (This worked well to potty-train said preschool teacher daughter as well.) But instead I stuck with making the chart in pretty colors, something like this:

So now all I need to do is get about a half-dozen more of those old-lady-weekly-pill-holders, fill it, and I'm set! Oh, and then remember to take them!

Skimmer's Recap: Sometimes it's just baby steps, yunno?

More on Cymbalta Withdrawals.

In light of my previous post, "Cymbalta Withdrawal Is the B Word," I thought I'd post a link to an article I came across. It's always SO good to know I'm not the only crazy person out there!

"Cymbalta Discontinuation Syndrome." Look! It even has a name! An interesting fact in this post written by Christina Lasich, MD, is she has found antihistamines (such as the over the counter Benadryl) to be helpful with withdrawal symptoms. Maybe being sleepy is a good thing when your mood dictates ripping someone's head off due to the mood-swings of the withdrawal...

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 3 of 3.

Year 6. 2010.

I've been blogging about my Fibromyalgia and the rest of my life now for a few years. Oddly there are quite a few people who find me by Googling "how long does it take to withdraw from Fentanyl?" I pray for them, knowing the awful depths withdrawal can drag you. Some of them write me to say “the doctor never told me what this would be like” and I try to encourage them that yes, it’s awful, but you can make it through this.

I know I am still relying too much on ibuprofen and Vicodin--I'm afraid to be in pain. And the Cymbalta I use for the Fibromyalgia seems to no longer help with the pain and all I'm having of it are the side-effects.

I spend the last half of the year clearing my body and brain of any extra medications: the Cymbalta is reduced to the lowest dose (with the blessings of my doctor) and I'm no longer taking my everyday dose of allergy medication since I feel foggy in the brain already. I figure I'll deal with the allergies as they come, and enjoy the clearer head I'll have without the pills. I pretty much quit taking the ibuprofen as it seems to begin eating a hole in my belly after a time. The Vicodin I will use when I really need it. No more preventative pain medications, just "as needed."

Year 7. 2011.

I can read books again!! After collecting books and books since I love to read and simply haven't had the concentration to do so, I'm working my way through the book piles. This is a happy thing.
I also decide that in a year the same amount of days will have passed no matter what I do with them, so what if I step out with a small amount of faith and choose to do something positive for myself with those days?

In mid-February I pull out the business card of a Naturopathic Doctor, given me by a friend a couple of years ago, and make the call. Set up an appointment. And the same week I get an appointment at the gym to talk with a trainer to help me exercise right and not cause flares or injuries that I know would just make me whine and quit. My Get-Well money is in play now.

It's June now. I'm taking steps toward a healthier, less whiney me. Sure, I get frustrated that things aren't moving faster. I still hurt, but it's generally lower, midrange, on the pain scale, the one where 10 means "please hospitalize me or at least shoot me with rhinoceros tranquilizer darts."
I try to deep breathe, I try to still my mind. I wake up better in the morning, but truth is, I'll never be a true morning person.  I still find putting any sort of dinner on the table a pain in the arse since I’m not a big fan of cooking, but not in the same “can’t lift my arms” sort of way.

It may be slow, but it is after all a process, something Merriam-Webster defines this way:
       Process
      1 a: progress, advance b: something going on: proceeding
     2 a (1): a natural phenomenon marked by gradual changes that lead toward a particular result     (2): a continuing natural or biological activity or function

So the fact that it is indeed something continuous, something that moves forward, is a happy thing, even if it isn’t instant. Fact is, I’m tired of this pain, tired of this fatigue, tired of this body. I can choose to stay the same, or I can choose to move forward.

I mean, why NOT me?


Skimmer's Recap: Fibromyalgia, while not my favorite companion, has taught me things. And baby steps are still steps.

Fibromyalgia and Me: A Semi-Concise Retrospective, Part 2 of 3.

Year 3. 2007

I file for disability. I'm turned down. I file again. I can't quite figure out how to do life since my body has turned against me. More pain. I feel weak. I annoy my family by whining and feeling sorry for myself. Grocery shopping seems impossible, putting any sort of meal on the table insurmountable. I try countless supplements. I research more and more. Maybe I can find some secret answer being hidden from me.

I'm obsessed.

Year 4. 2008.

Turned down for disability again. I feel gutted. I know I don't look different—no casts, no missing limbs--but I feel so very different from the person I was a few years ago. My only recourse is to get a lawyer to represent me, someone who knows the system, someone who can take my side in this. If I can't manage two different appointments or events outside the home in a week, how will I ever work again?

My doctor sends me to a 5 week class for Chronic PainManagement. I attend 4 days per week, some days so exhausted by the end of the class that I have to buy coffee to hopefully stay awake for the drive home. We are an odd mix: woman with migraines, men with back surgeries, another woman with Fibromyalgia, another with a neck injury, etc. etc. We are taught to meditate, to do relaxation exercises, to do gentle stretching, to speak only of positive things. We are told not to get involved in each other's lives, yet we do. The few of us with a sense of humor sustain each other in secret moments. We are corrected like small stupid children as they teach these things. This gets in the way of learning. Yet, I learn things.

My husband's dog gets very very sick in the midst of this and dies. We are both devastated. I consider giving up on the class (I only have 1 week left) but those in charge let me take a week off and return to finish.

My pain management doctor tries to kill me with many different heavy opiates. My husband says, "For somebody as stoned as you are, you should be having more fun." I decide to get myself clear of the final one, Fentanyl. The withdrawals are pretty much Satan incarnate.

Year 5. 2009.
The lawyer wins my case. All I have to do is feel humiliated in front of a judge and several others as I listen to them try to invalidate my experience. But I now have disability benefits, a small amount, since I worked part time when I last worked. But it's something, maybe I can use this for my Get-Well money. And clothes, I will surely need some new clothes to get well. And the occasional pedicure.

I am in a full flare of Fibromyalgia total body pain, fatigue, and confused head, when someone decides to fill me in on the “fact” that “if you only ate this way you would be fine.” She also tells me that “at least” I don’t have cancer or diabetes. I look at her and say, “The good thing about Fibromyalgia? You don’t die from it.” She smiles a great big cheerleader’s smile. I continue.” The bad thing about Fibromyalgia? You don’t die from it.” Her face folds in on itself. She quits talking. Finally.

Don't change that dial--i'll be back....

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?

Fibromyalgia and the Gym: Things I've Noticed Besides People in Spandex.

I have passed the three month mark in my Experiment In Fitness. I started back at the gym in mid-February, and started seeing a naturopathic doctor about the same time. My trainer at the gym has kept me from hurting myself and my naturopathic doctor has supplemented me toward better energy. These are the things I have noticed:

At the gym I can now add light hand weights to my routines. I have better control of the movements my trainer guides me through. I now have to warm up at a faster pace on the treadmill than I did originally in order to start moving my heartrate up, and I've upped my pace on the treadmill altogether from 3 miles an hour to 3.3 miles an hour and added an incline to keep my heartrate in the workout zone. Doesn't sound like much, but it's a change in the right direction, right?

I sleep better and on less medication than I needed for a night's sleep than before. I wake up less groggy. I am better able to do sustained activity than I was previously. I don't see a huge difference, but my dear hubby says it's significant.

Due probably to both supplements and exercise, my flares have been minimal. Where previously I could expect one week out of 4 to be extra fibro-achy and difficult, I've had only a few days in the whole 3 months. This to me, a whiner from way back, is huge. I think it may be even huge-er to my family.

I believe the supplements have supported my efforts toward the exercise, and the exercise is supporting my efforts to take better care of myself. Slowly but surely, forward steps are being taken and small results are being seen.

One reason I started this trip down Supplement-and-Exercise Lane was the thought: In a year from now, what could be different about my health and fibromyalgia? A year will pass one way or the other, so why not DO something?

I've had a number of people tell me that either they or a friend had fibromyalgia "and one day it just went away." I'm not sure if that is intended to encourage me (it doesn't, by the way) but rather than wait around and hope for a cure by The-Raw-Foods-Diet/Prayer/Misdiagnosis or Magic, it seemed prudent to take some steps of my own. And what do you know? The steps are moving me forward.

Where I felt "stuck" in the quicksand of this thing called Fibromyalgia, I'm feeling a bit more in control. What is your area of "stuck-ness"? What choices could you make to improve some part of your life that otherwise will be just the same a year from now?


Skimmer's Recap: Julie finds no magic in her past 3 months, just some serious acts of the will--but finds them oddly satisfying. However, she does not anticipate wearing spandex any time soon. Or ever.

Fibromyalgia and My New Friends: Pills and Exercise.

These are some of my new friends.

 Dr. Ballew, my naturopathic doctor, is working with me toward better health. As mentioned in my previous post, "Fibromyalgia and Spitting for Health," we had tested for hormonal imbalances. And by "we" I mean she prescribed the test and I provided the spit.

She started me on Magnesium Citramate (a clever word for Citrate-Malate), a Basic B Complex and a good brand of fish oil, based on our initial hour and a half appointment in which I blabbed a full history of *Me*. And she never once glazed over or drooled. (A very good skill for a healthcare professional.)

Most Fibromyalgia patients are low in magnesium, B vitamins are supposed to be good for energy, and Omega 3s, well, EVERYbody knows THOSE are good! (What are they good for again? Anybody??)

The newer addition to the Pill Arsenal is the Adrenal Stress End, the one mentioned in the previous post that's made of "porcine adrenal." Is the word "porcine" calculated to sound more scientificky than "pig"? I mean, aren't we still talking about the same thing? No matter what we call it, somebody is going to be thinking "Oh poor Wilbur, and Charlotte worked so hard to save him!" But I am willing (and even happy) to eat bacon, so I suppose I can ingest this part of the pig as well, at least in capsule form.

Also new, the addition of the progesterone cream. Apparently progesterone can aid in the balancing of hormones even when the estrogen is in correct range (and since mine is in pill form, it is.)

Things I've noticed. I'm about 2 months into the first group of pills and 1 month into Wilbur's cousin. I'm also about 2 months into my time back at the gym (it only seems like longer...) and 2 months into an often weak attempt to eat less processed carbohydrates and sugar. I am beginning to sleep a bit better, and wake up a bit earlier. I'm still aware of the general ache of FM, but it's a bit quieter.

I am cautiously optimistic--since there is a spectrum in which my Fibro affected energy moves, I still tell myself, "Well, you have felt this good other times in the past 6 years." Hubby says I am much improved, so maybe there is more than I am able to see in myself. Time will tell.

Of course, in the Fibromyalgic world there are always surprises. The past couple of days have also brought a resurgence of weird sensations in my legs and feet--the feeling of bubbling under the skin, a kind of cold or hot sensation. Maybe Restless Legs Syndrome? I dunno. But this is just the dubious beauty of Fibro, our nervous systems do some strange stuff!


Skimmer's Recap: julie doesn't anticipate turning into a ball of energy any time soon, but at least her pill and gym regime keeps her off the street and out of trouble.

Fibromyalgia and Spitting for Health.

 If i were a guy, the whole day would have gone smoother.

The test recommended by my new Naturopathic doctor required spit, lots of it. Four vile vials, in fact.

i think spitting is gross. But spit i did.

The point of the test was to check hormonal balances, one of which is cortisol, a hormone produced by the adrenal cortex. Cortisol is related to stress, something we all deal with daily. Here's a great article on About.com on the Cortisol-Stress connection that explains what cortisol is responsible for and how stress affects it.

But why saliva? Why spitting instead of the pee-all-day-and-save-it-in-an-embarrassingly-large-jug, like my Kaiser health care had me do? According to Dr. Ballew, my Doctor of Naturopathic Sciences and new friend in healthcare, the urine test only measures the overall cortisol level, when what is needed to see how the adrenals are functioning is to see the various levels throughout the day. Like Dr. Ballew explained to me, and the article also explains, the way the hormone should work is to be highest after you have just slept, since you have (allegedly) just awakened from refreshing, restorative sleep. There is a natural downward curve throughout the day in its production, leading at last to the lowest levels at bedtime, when we need to be relaxed and ready for that (alleged) refreshing sleep.

BUT, what are some of the most common complaints with Fibromyalgia? A lack of restorative, refreshing sleep, waking up tired, and general fatigue. Then there's that chronic pain issue, the generalized aching, burning pain. Studies have shown sleep deprivation can cause--guess what--pain. The brain needs good sleep to repair itself or it becomes impaired.

My cortisol level seems to be on its own special little curve--below normal when i wake, then leveling out about 4 pm. But no dropping slowly till bedtime, just full speed ahead at the 4 pm. level. Could this explain the poor sleep i experience? Maybe the difficulty waking up? (Never having been a morning person you can only imagine how Fibro has taken that to new depths of un-morningness.)

If this ends up having a large impact on my health, but how many other Fibromyalgia sufferers are slogging along with the same problem, but they don't have a lovely Dr. Ballew, Naturopath, on their team? I do wonder. Symptoms are many and varied in FM (Fibromyalgia) with some similarities, but could this be one of the big causes? Stress=stressed adrenals that perform poorly=bad mornings and bad nights. Hmm.

My new supplement is made from pig adrenals. Sounds gross, but if i can get a better night's sleep and have a better morning, i'll pig 'em down.


Skimmer's recap: Turns out that spitting can be our friend, but aren't you glad i didn't put an illustration of it up there at the top of the page?

Fibromyalgia and Just Blogging Along.

I don't know which is more embarrassing: that my blog shows only 3 followers OR that I'm not sure even they read it anymore. And then every once in a while I get a comment like this one, posted on my most recent post, "Fibromyalgia and My Baby Steps Toward Physical Health."

Nancy said...

I mentioned on Facebook tonight that I'm going for my first appointment to a Pain Management Clinic tomorrow and a friend told me about your blog. It has been a blessing to me. I was diagnosed about 7 years ago and honestly have forgotten what it's like to feel good. I've tried just about everything, have prayed for healing, and prayed for contentment. It feels like a rollercoaster between hope and acceptance. Thank you for sharing so honestly about your own struggle.

Redemption! Suddenly there is a purpose for my awkwardly unseen disorder--and my unceasing need to talk about it. So thank you, Nancy! I struggle, I write, I share on this blog (which gives my hubby a much appreciated break from me sharing with him) and how great is it to find out it's helped somebody!

Happy *sigh*.

Fibromyalgia and My Baby Steps Toward Physical Health.

This is what surrounds me at the gym as I step on the treadmill.

from f80-treadmill.org

Slender, long-legged women casually step onto the treadmills on either side of me, put their headphones on, crank up the speed and start running. RUNNING, i said.

i smile vaguely into the middle distance, pulling my belly in, and act as if i am not breaking into a slight mist from walking.

But it's baby steps that will get me there.

"There" is this mystical place in my future where i don't puff along at 3 miles an hour, where i can easily bend to tie my shoe, where i don't see my next decade painted in fibromyalgic shades of pain and fatigue.

i have a trainer. She tells me, "Baby steps. We will take baby steps." i work to do 8 repetitions of simple floor exercises. The first day of training my body loudly informs me that 10 repetitions will set the fibro beast in motion. So we do 8. There's a certain point when my body tells me I Am Done. The muscle fatigue sets in like the fangs of an angry dog, far different from the regular pain of exercised muscles. So we take 8 baby steps.

Three times a week i go to the gym. It's been three weeks now. One day with the trainer, two more days to repeat the exercises and walk on the treadmill next to the Looks Awesome In Spandex crowd. So far i don't listen to music while i walk, instead i people watch, think, pray, and check my heart rate--repeatedly.

Today i noticed on the heart rate zone graph on the treadmill that i am training at the rates for a 70 year old. But that's okay, baby steps. Perhaps before i turn 60 in three years i will be able to train at the rate for a 65 year old.

i think i'm doing this for good reasons this time. i have no illusions that i will again look like i did at 21. i'm not pre-buying a wardrobe 6 sizes smaller. i am aiming for flexibility and strength and energy, things i've lost to this disorder. i had thought i might somehow make peace with my fibromyalgia, but even if i never do, perhaps i can at least learn to smile vaguely into the middle distance when i see it, and just keep walking.


Skimmer's Recap: Feeling fed up with fibromyalgia, julie subjects herself and others to talk of treadmills and spandex.

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.