My best paying employable skill sets are comprised of writing, marketing, research and social/multi media. All of which rely heavily on computers, reading and sitting.
The activities which promote my worst states of physical health are comprised of reading, writing, and researching while employing the use of computers. This also tends to demand time sitting or standing in limited, painful positions.

I am in less pain, and at the most ease of my disease when not required to to do any of the above. I also find tremendous discomfort and get "lit up" with pain and migraines when I have scheduled appointments, meetings and commitments (some of which solely require me to 'show up' and just physically 'be' there).

Diabolical, this disease.

While I am regularly working on controlling the "flare" factors, that contribute to the reasons why I may go from a good day to a bad, I am far from functioning at a normal level. The tools required to manage your pain from the psyche are so valuable but impossible to master without constant practice. You really have to recreate how one associates personal experience to physical reaction. Meditation, biofeedback, writing in journals, diet, exercise, yoga, stress management etc., are such obvious answers and tools we have acquired from different cultures and eras over thousands of years. They truly are inherent gifts from "God and Earth" for us to utilize, to grow spirituality, emotionally, intellectually and physically. But you would be surprised how little people use these in their daily lives. I certainly have dabbled in many of these practices, primarily in my early twenties. But I got lost in the chase, and learned to thrive with stressors controlling and dictating my life.
My diet was never poor, I definitely liked to drink, but I was always mindful of the food I ate, cooking for years now and making seemingly intelligent choices at the time. Regardless, whatever the CAUSE of the Fibromyalgia, I have it.

Now its trying to manage my disease with eastern (and western, of course) and ancient practices while trying to function independently in a modern world, primarily with my modern skills. This is a balance I have yet to find.

Mind over Matter...Food as Medicine...Getting out of the DIS and back to the EASE...

Ugh. Its easier said than done.

Tonight the hubs and I enjoyed some alone time, and it was so nice. We turned off the television, we pulled out the guitar and presumed to butcher every chord melody we came up with. These were "amazing" homespun songs, hitting tragically high notes and resulting in bad, bad rhymes. Not to mention the calloused fingertips and evil glares coming from our boxer puppy to have mercy on his canine ears.

But damn, it was fun. And we laughed. So hard in fact my abdomens are sore and I cried from a moment of hyperventilating and then fearing death. Totally worth it.
Suffice it to say, the "Band" is still without a name, and a guitarist, and more than likely a lead signer. But make no doubt, the genius behind the melodies is the Musickson Collaboration dropping fresh beats and hot rhymes like nobody's business.
Ha! Ha! Ha! Oh man, our shouting and strumming filled a perfectly silent room with the most horrific sounds and melodies of the day in 2.5 seconds. The Kill Deer outside alerted their offspring for predators. Make no mistake we are no considered Kill Deer predators.

Laughing. My favorite thing to participate in on this planet. The cure to so many "what ails you?" My soul smiled wide today, and in the words of ICE CUBE "Today as wa good day."

To continue on my rap dropping awesomeness, perhaps I will follow that up with:
"Cuz the boys in the hood are always hard
Come talkin' that trash and we'll pull your card
Knowin' nothin' in life but to be legit,
Don't quote me boy, I ain't said shit" Lyrics by Dynamite Hack fro NWA of course.


Anyways its important to poke fun of yourself and be ridiculous. And most important if you can do that with the one you love. Today we did. And all of our miseries from yesterday washed away. It was a perfect night.

It felt good laugh. That's what we do best. Giggle, love and get the through the day.
Feeling the power of love and laughter to carry us above all this other crap, and strength of our marriage, the devotion of our vows, to life giving us another day, and blessing us with the opportunity to love a little deeper and by god laugh so hard you cry.

Thankful for my husband and music we make together.

I am seriously tired of my limbs falling asleep. Left leg, both arms. Right foot. Its so freaking annoying. That is all.

The last few days have been challenging. The migraine and pain flares are going into 72 hours. I am overwhelmed with nausea from both. I am feeling very defined by my disease today, and sadly feeling very defeated as well.
Its these times, when the days roll into each other offering no relief, that I have the darkest of thoughts and lose hope that I will ever live a happy life.
The idea of growing old with this and feeling this pain makes me shutter. Its a dramatic and whiny sentiment, but I can't bare to imagine being a prisoner to my body year after year.
To add to the little violins, my husband shares in a misery of his own. The job he has the great fortune of employing him is definitely eating away at his soul. I am have never known him to be so depressed and just outright sad. He is up at 4:30am, and home between 7 and 9pm. Every day. Despite the salary and benefits we desperately need (while I go into month 5 with out any word from SSA), and despite knowing full well the job title and experience will pay off in time, its hard for him and myself to admit to a silver lining ahead.
We used to live carefree lives, working hard but living harder and passionately in a town and environment we loved. We both would wake up feeling blessed and grateful with every sunrise over the Rocky Mountain peaks, and found such joy and comfort in sharing all things our little ski town offered with people of like minds and passions. But my illness thrived in that environment so we had to move away. And say good bye to everything.
Its days like today, and weeks like this, that make me wonder if we should even being trying for a Maybe Baby. Perhaps my health and my husband's happiness should be our sole focus right now. Frankly I wonder how I will even manage to get up and nurse, to keep pace with a brand baby. I can't barely pour myself cereal in the mornings.
And my husband, who is trying to find his path in the career world now, maybe the stresses of a newborn are too much, too soon. Sometimes, I wish he would just leave me. I hate how much he has had to give up for me. It doesn't seem fair. I honestly wouldn't be mad. I would be happy. He could live his life, and go back to our perfect little ski town and at least one of us did not have to compromise. We went into this marriage swearing we would never live the lives we are living now. He didn't know. Its not his fault he married me.
Right now, everything feels like too much. too fast. too soon.
I just want to believe it gets better.

I could really use some tips on how to relieve this back pain I've had, ongoing for a month. Located between my shoulder blades. My spine feel bruised from it. It permeates up my lower occiptal, then reaches around my temples, down into my throat. Feels like my blood vessels are constricting and bleeding in my brain. I'm nauseated, light hurts my eyes, I'm a royal B to everyone, and the pain in my back and neck is literally excruciating. If I could find a pressure point or some point of relief around the back area I feel like it would solve the whole migraine issue too. My acupuncturist has yet to help out on this one. Any suggestions from fellow sufferers? I'm doing lots of hot baths, vicodin (which does nothing), and eating carefully.

I've been researching disability benefits for Fibro sufferers. As you may know, I am awaiting the decision from the SSA for my application submitted in early October.
The most recent article I read mentioned something rather disturbing to me. It said that the evaluators do not just judge your "performance" as in how you are presently functioning in life, but they judge your education and work history.
The more education you have acquired, and the higher one may have been employed in the career ladder often decides their eligibility.
What does this mean?
It's simple really. It is the most backward display of a double standard you may see in this day and age.
If you are college educated, and or, held a position which required many levels of talents, skills and responsibility you are expected to be able to employ yourself despite your illness or disease and the state that is in.
If you did not pursue a higher education, and were employed in jobs that required the same or minimal skill sets, then you have fewer expectations from the government.
So, despite suffering from an illness that debilitates you and does not discriminate on whose life it takes over and destroys, if you spent a few years getting a college degree and working a few jobs that required different skills, or even grew your skillset-you are probably going to find getting approved for social security very difficult.
However, had you not pursued those things, and still succumbed to this disease you will likely be covered, have little expectations to figure out how to make a living and be rewarded with the SSI.
This is all speculation based off of an article I read. But in the end it really upset me. I mean, I LOVED my life and my job. I loved working. But I can't now. Its not that I don't want to be, and I certainly hope one day in the future I can work for my personal enjoyment and fulfilment again, but right now its not the cards.
So why should my education and skill sets matter? At the end of the day, my pain is equal to anyone's and I am curled up on the shower floor crying wondering how I got here.
Make it right SSI. If anything, my bigwig college degree (which means nothing these days) and my very decent salary paid for my benefits. I earned my screwed up disability and paid for it for the last 16 years, so give me what I have worked for and let me have some dignity.
I have friends who earned disability after abusing drugs for a decade, losing their job and going into rehab...yet somehow, I am potentially being excluded because my disease is not so easily explained.
Irony-this disease could make me a drug addict and I'll just reapply the next time and claim rx dependent.
Am I the only one who is seriously distraught over this system? Think of all the people affected by this everyday. It's not right.

The hubby and I decided we were going to "pull the goalie" and start trying to make little Music's last fall. At that point, I was off nearly all of medications except for Cymbalta and Effexor. I no longer regulalry used painkillers, sleep aids, muscle relaxers, sedatives, tranquilizers and whatever other "ers" the doctors prescribed me monthly following the diagnosis.
I had stopped taking oral birth control in July as well, as he and I had entertained the idea of entering parenthood in the sooner versus the latter.
So, by October I was virtually "good to go."
 Well, he and I may have "pulled the goalie" a little prematurely, given I was just starting to taper down from the big boy anti-depressants: Effexor XR 150MG a day and Cymbalta 30MG daily.
Low and behold, to my suprised fibro-eyes, we got pregnant right away. I know what you're thinking, "DUH! what do you expect?"
And you're right, looking back getting pregnant is not rocket science. But given the state of my body, and what terrible shape it was in--stressed out, fibrofied, just off all sorts of meds--I sort of half expected my eggs to put up a road block and stand up violently for themselves protecting my womb from invasion and change.
There they are standing armed and dangerous, taking out every swimmer with the gall to approach, shooting them down one by one.
In reality, my egg was just idly hanging out. In fact, I assume it was drunk, holding up a peace flag, inviting anyone and everyone over to party,  like the easy tramp that it is.

So by early November I was pregnant. By mid November, I knew it and I called my psychiatrist who prescribes me the big boy drugs, Effexor and Cymbalta and screamed at him " I'm pregnant what the heck do I do? These  drugs are POISON to my Maybe Baby!!!"

This is when the hubby and I adopted the term, "Maybe Baby." Because Effexor XR is known to cause to spontaneous abortions. So I was terrified. And in addition, my body being in its fragile state, without these drugs, might resist the implantation or major changes going on. Don't misunderstand me, I became extremely attached to the idea of this maybe baby and did everything by the book to create a nice little happy place for it to grow and develop. A dream home, a perfect easy-bake-oven.

The thing is, the chances of this  going badly were great from the very beginning. I could sense it in my body.  So Maybe Baby had a fighting chance, but emotionally I knew it could very well all end in a miscarriage.

And it did.

Despite me stopping all of my anti-depressants cold turkey (do not do this, by the way, before consulting your doctor.).  And despite eating well, sleeping, resting, not drinking, yada yada yada...we miscarried about 4 weeks into the pregnancy.

I blame the Effexor. And my temporary lapse of judgement in thinking my eggs had any sense of self control.  Easy, easy eggs!

But I am relieved. Deeply. I am saddened, but relieved. The idea of exposing Maybe Baby to any of these drugs terrified me. I felt consumed with guilt, even for the short period of time it was. The damages that these drugs can do are tremendous. So, I feel blessed that my body knew this was not the right time for us. And now, three months later, I am 100% drug free and in such a better place physically in terms of my nutrition and management of the disease, I know my easy-bake-oven is going to make the next Maybe Babye very happy.

In terms of those four weeks being pregnant with fibro, it was intense. And I didn't even need to take a pregnancy test to know. Although, I did. But my body flared RIGHT UP! I suspect, that will be the case for most of us fibros when getting knocked up. =)

I had the lingering fever, that actually led me to be bedridden for 5 days. It caused me extraordinary pain in my legs, my back, frankly the whole body. I had all the common symptoms of pregnancy. And I know them, because I have been pregnant twice before-both times were big OOPS! and both times were years prior to the fibromyalgia. The other two times, I also miscarried.  The other times I was on Effexor XR. And the other two times I did not know (for the most part) I was pregnant until I miscarried.

But that's deeply personal stuff I won't go into here. I just mention it to let you know, I DO KNOW, what early pregnancy symptoms feel like before and after having fibromyalgia. And being pregnant with fibro is way more intense and your body is much more hypersensitive to it.

With that said, fibromyalgia and pregnancy is not going to be easy. This is why I am very nervous about it. But I also hear that a fetus/embryo has the ability and been reported to "heal" the mother.
If that's the case, consider me a baby farm! Who needs a surrogate? Let's go! Fix me up. (JK)

I am excited to take this journey. And to share my experiences with those of you wondering what fibro and pregnancy really feels like. Now we just have to leave it to the powers that be decide if I am ready to ever bring a baby to full term. I can't wait to explore the major ups and down of trying to conceive, pregnancy and labor while being fibrofantastic.

Fibrofantastic is really silly to say. Sorry for putting you through that. Lol.

The husband and I decided, given our current circumstances, that now is probably as good a time as any to start trying for a family. The circumstances being I am out of work, we are living in a house of massive support (with my roommates, er, parents), and his job provides us a wonderful opportunity to be financially "on the ball," so-to-speak.

With that said, we are extremely blessed with good fortune, deep rooted love and infinite support of family. This "maybe baby" as well call it, will be doted with endless amounts of joyous love, company and opportunity by family near and far.

All of our ducks are seemingly in a row. Except for one lingering issue, I am chronically ill. So I plan on dedicating a large amount of this blog to my experiences being pregnant with Fibromyalgia. Of course, I need to get pregnant first =).

Most of you know, if you suffer from fibromyalgia, that fibro hates change. If you catch a cold, suffer from allergies, travel from a dry climate to a moist climate...your body knows it. And if you are like me, your body punishes you for it. So the idea of being pregnant truly terrifies me. But the idea of being a mother, and raising my amazing husband's child,  makes the pain and misery of 9 months worthy.

So here's go nothing. The making of a "maybe baby" while fibrofantastic.

When I try to explain to my friends how Fibromyalgia feels, I first visualize my pain. And as I picture it I go to one place, one classic reference that nails it every single time. Tron.
Now, I have friends who tease me relentlessly about the unfortunate term "flare" when the fibro is at its worst and in full effect. So, to avoid the jokes related to some terrible STD, and also to better illustrated my Tron reference, I have renamed being "in a flare" to being "lit up."

Lit up like Tron, to be exact. And frankly, I think it nails it perfectly. When I am suffer from a "flare" I feel LIT UP in my body. And my pain and lethargy radiates basically around the perimeter of my body (like the Tron suits), and u to my brain (hence the helmets), down my legs to my toes.

When, the pain is accompanied by the burning, the painful "dried out" feeling, I think of beef jerky. I know its weird. I am just very visual. But I feel like the best way to describe it is with food or images.

The beef jerky feeling is simple. My muscles feel dried out and twisted up, like when you give yourself a facial and wear a nice clay mask. You know, the green ones, and they dry up on your face and before you know it even speakimg is difficult because your cheeks are puckered together and your lips can barely meet to enunciate words, letters and such? Well, in the midst of being "lit up" you may also acquire the novelty of sensation of the good ole' fibro burn, where like your face with a dry clay mask sucking the life from your pores, your muscles are experiencing a similar "beef jerky" kind of sensation and any move, and stretch, the simplest walking or stroll and even rolling over is a burning, stretching, masky facial beef jerky kind of feel.

Oh its late and I am tired. I just wanted to share my thoughts on how it feels sometimes, and also how the flare invites giggles (as it should). So if you too feel like you are "lit up like Tron" on your bad days, or feeling a little "beef jerky", then by all means embrace the new terms.. Maybe your friends will understand it better and not attribute to a herpes flare up. Because that's weird and embarassing and totally easily misunderstood if overhead while chatting with friends at a bar. =)

I would like to post one thought  I continue to ponder. This idea of mine keeps reemerging, when I follow others tweets on the subject of Fibromyalgia. So many people, bloggers and holistic/medical practitioners are adamant about quoting the same concept "Fibromyalgia doesn't have to define you."
Well, I call shenanigans.
It's time to liberate this type of thinking.
Fibromyalgia, whether we like it or not, does define you. I saw this not to take the wind out of hopeful sails. But simply to breathe some realistic pov into the mix.
Fibromyalgia defines all of us who suffer from it. In fact it even defines much of the lives of those closest to us. My husband is absolutely finely tuned, and dialed in to the inner workings of his wife's disease.
To deny that we are not defined by this disease perpetuates the mystery of this disease. It makes us continue to act tougher than we need to be. A characteristic of many people, myself included, who suffer from fibro is we are overacheivers, multi-multi-multi-taskers. We are stubborn go getters who not only can do and do and do more, but don't have time to get sick.
BUT WE DID. So why put on that face, that mask, that hides this "invisible disease" as they call it-by saying we are NOT defined by it?

My life is. I lost my job. I had to change my diet. I have started an entirely new life and new life routines. I sleep differently. I have to plan differently. I have learned and am learning everyday life tools to manage my symptoms-control my stress-understand my body-learn how to listen to my body...the list goes on.

So why are we deadset on being so stubborn and coming off so strong as to say fibromyalgia doesn't define us?

I am not ashamed that I have this disease. My life is absolutely defined by it. As anyone with any disease is defined by that.

BUT my life is not defeated by it. I wish other fibro sufferers would simply embrace the honest and realistic approach to these things. And I wish doctors and medical professionals would quit blowing smoke up our rear ends, pushing this BS.

I am happy to stay positive, seek ways to control and manage my disease, my flare ups etc. But I am 100% opposed to smoke in mirrors.

Lets be honest here and open the dialogue in a real way. No one does it enough with fibro. You can be hopeful and embody hopefulness and optimism with this disease while still communicating your pain, frustration and trials.

Peaks and Valleys. It is Peaks and Valleys in this world of fibro, defined by it but not defeated.