Guest Blog from Fibromodem

I live with Fibromyalgia.  Some days I suffer.  Some days I battle.  Some days I triumph.  Some days I lose the fight.  But every day I live with it. 

As someone with an invisible illness, I feel like it’s partly my responsibility to bring awareness to the cause.  Fibro has no known cause, no known cure, and very little about how it operates.  It can devastate a life – the *whole* life.  Relationships with spouses, children, friends. Work performance.  Overall health.  Mental stability.  Everything.  A flare can sap the life out of me in a matter of hours.  Sometimes it takes days to recover. 

And you could look right at me and think that I looked fine.  But like a headache, or sore muscles, or a tummy ache – looks are deceiving. 

The more we bring awareness to the cause, the more research will be funded.  Perhaps, someday, we’ll know much more about it.  But it starts with me.  And you. 

Without further ado, here is the guest blog from Fibromodem:

It’s the last day before the Make Fibromyalgia VISIBLE Thunderclap goes off!

For those who have no idea what I’m talking about: this is NOT a Facebook page or website specific project – so I have been hoping that this will be supported by ALL of us!

I started a(nother) Fibromyalgia Awareness initiative in which I would be honoured if EVERYONE would get involved: it’s called a Thunder Clap.

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (which we have!), Thunderclap will share the same message on EVERY supporters’ Twitter and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook and Twitter that cannot be ignored!

For example:

Clap 1

As of when I wrote this, we have 704 supporters with a potential social reach of 228,394 people.

What is THIS Thunderclap?

clap 2

I don’t know how to turn Facebook purple (like the breast cancer awareness people do with pink), so this Thunderclap is me asking EVERYONE to upload the following cover photo to their own profiles for the entire month of May.

header

The message will be published on every supporters’ Facebook page and/or Twitter feed on May 1st at 12:00 AM EDT. Here’s the world-wide times (yes, I know it’s a small picture — just click on it to enlarge):

time

What Can YOU do to Help?

1. To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach with Twitter or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

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3. You can write a blog post to let all your followers know about the project.

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4. On May 1st, upload the cover photo to your Facebook page (AND upload your VISIBLE Army picture to your profile photo)

Our goal: to no longer be ignored! Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

Many people (and doctors) do not know what it is (or doubt its existence) – it is time to make people aware!

Help take the mystery out of Fibromyalgia, and help spread something more powerful: HOPE!

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!.

And REMEMBER please:

Blog prompt to get me back in the game….

It’s been a while since I blogged and it was (quite politely) brought to my attention that I needed to blog again.  The last one was sad.  So…. here I am.  Blogging again.  I’ll update on things in another post (I’m working on it, but not quite done) – the short answer: I am well. :)

I chose a blog prompt and this one was perfect because it’s been on my mind *a lot* lately.

If you are to do one thing for free for the rest of your life, what would it be?

Holy moly.  Like, how easy is this one?  I would photograph.  I have restrictions – I wouldn’t work in a portrait studio for free.  That’s work, because it’s conditional.  But I’d take my camera everywhere, and photograph every thing, and give away the images for free.  Photography is a passion.  It’s a driving force in my life.  It helps me to visualize beauty in places where most people miss it.

Copyright Fusion Photography & Design 2011

Copyright Fusion Photography & Design 2011

That old, run down barn at the end of my block?  I photographed it and it was beautifully flawed.  The lake you’ve driven by a million times?  I stood outside for 3 minutes in -20 degree weather to capture the stunning beauty that I saw.  The woman who thinks she is ugly and fat and unsightly?  I can photograph her and show her the true beauty that shines from within her.  The trees you see every day on your drive to work?  I can get an image that is so full of color that you’d be amazed that it is the same trees you’ve been looking at for years.

It’s about moments.  Not events.  Not days.  Moments.

I have an image in my head, because I didn’t have a camera with me at the time.  I was running a race with BFF #1 and I was really struggling with pain and breathing.  We were at a difficult point in the route, where it was all uphill for about a mile.  She was ahead of me, giving me a path as we moved in between other walkers and runners.  The image I can see, to this very moment, is her hand, to the side and behind her, reaching out for me to hold.  That’s it.  Just her hand.  It’s become an anchor for me, that image.  Because when I feel unable to continue, and it is all uphill… I know her hand will be there for me, to pull me up.

You see, photography isn’t just a matter of pictures.  It’s moments.  I can keep them in my head… but my God… when I’m lucky enough to get them on camera, they take my breath away.  Seeing something so powerful reflected in an image is most certainly what God intended when He made film.  And it isn’t just my images.  I see others’ images and I see the beauty they might miss.  I can fiddle with it and change it so that it brings out what they were really looking at when they took it.

I saw, on a photograph once, “If I were a rich girl, I’d do this job for free.”  And it holds as true today, as it was 15 years ago when I first saw it.

Photography feeds my soul.  I need to remember that.

I’m sorry: An open letter to my loved ones

Dear family and friends,

First and foremost, I’m sorry.  I feel like I’ve let you down in many, many ways.  And there is nothing to say, except, “I’m sorry.”

I can honestly say that I don’t have a handle on what’s happening with me, lately.  At one point in the not-so-distant past, I was lively and energetic.  That girl is…. well, she’s gone now.  And I don’t know where she went.

I feel like I can never get enough sleep.  Never.  I’m exhausted.  During the week, I force myself to get out of bed and carry on with my day.  I get up at 5:30 am, drive to work, work all day (most of the time without a lunch break), drive home and finally take my shoes off at 6:00 pm-ish. I. Am. Exhausted.  I make dinner (which, admittedly, isn’t all that exciting these days), and I collapse on the couch, too exhausted to do anything else.  By the weekend, I lie around the house, unmotivated to do anything but sleep.

And then, there’s the pain.  I don’t know that you would ever understand, unless you have been where I am right now.  Miserable doesn’t even begin to describe it.  Imagine, if you can, the last time you were really sick.  Then, imagine the last time you were really sore.  Like… for me?  It’s like the time I had walking pneumonia, combined with feeling like I had just done a half-marathon.  I dread waking up, because moving in the morning is like trying to break out of an invisible cast.  I’m stiff.  It hurts.  And I don’t know if it’s just a morning thing, or if I’ll be suffering all day.  Once I get going, random things will bother me.  My hips will hurt.  Or my toes will burn.  Or my back will ache.  Or I’ll be itchy.  Or my legs will cramp.  Or I’ll have a headache.

Good God… the headaches.  They’re not to be underestimated.  It could be a dull, constant headache.  Or Satan can be gripping my brain with his red-hot, pokey fingers.  They can last a few hours, or for days.

I get tired of taking medications.  Side effects from them mean that I have to take other things to try to feel better.  For example, the Tramadol makes me itchy.  So I have to take Bendryl to alleviate the itchiness.  But Benedryl makes me sleepy.  So I have to take an energy pill.  The energy pill makes the pain worse (not sure why).  So I have to take Tramadol.  And so it begins, again.

……I carry guilt with me.  All the time.  I feel guilty because I am tired.  I feel guilty because I am lazy.  I feel guilty because I am crabby.  I feel guilty because I am distant.  I feel guilty because I’m weak.  I feel guilty because I’m losing the battle.

I don’t have the answer.  But it isn’t for lack of asking the question.  Please, don’t stop loving me.  Don’t leave.  Don’t close your ears and your heart.  I’m trying.

Maybe, someday, the girl that you used to know will come back.  Until then, just keep loving the girl that I am, now. Hug me.  Tell me that I’ll be okay.  Hold my hand.  Talk with me.  Let me vent.  Help me forgive myself.

With unparalleled love,

me

Real resolutions… I think

Rather than go into a long diatribe about making resolutions and why that is good, I’d rather spend some time going through my resolutions for 2013, and processing them.  More because it’ll help me, than because you want to know.  But maybe you’ll find it interesting, as well.  Then it’s a win for everyone!

  1. Get control of the chronic pain and fibro flares I’ve been experiencing.  The way I’ll do this is through diet and activity changes.  I’ll need to cut way back on carbs (which sucks because I am a carb-a-holic).  I will also need to cut back on processed sugar.  In the end, I think I’ll be fine with these changes.  But getting started will take some pretty serious dedication.  The reality is that this has sucked the life out of my life, as of late.  And I want my life back.
  2. Write one chapter a month of my book.  I’ve got 2 chapters done, now.  But I’d rather make this a focus than let it languish away in the depths of “someday….”
  3. Get my house decorated so it’s more like the castle I want to come home to.  When we first moved in, there was a lot of things we were doing to make the house our home.  We stopped, because we were happy with it.  But now I’m ready to do more. :)
  4. Manage my finances better.  This one’s a biggie.  I am one of the very worst people I know with financial management.  I’ve been in a hole for a little while, in terms of finances.  Borrowing or paying back or overdrafting or…..gah!  It’s maddening.  So this year, I will take control.
  5. Read!  Read more.  I love reading.  Why am I not doing it as much?  The hubs got me a Kindle Fire for Christmas and, so far, I’ve used it more for Pinterest than for reading.  So that will change. (By the way, I’m @theflameinside if you’re pinning and want to follow me!)

That’s about it.  How about you guys?  Do you do the resolution thing?  Why, or why not?  And if you have made some, care to share?

Well, I’d call this a breakthrough

Not to toot my own horn or anything, but I’d say that I handled this season pretty well this year.  Most holiday seasons are ones filled with dread, for me.  Besides the general stuff (whiny, bratty children or adults that don’t behave any older than their shoe size), this time of year has typically kept me hostage in a terrible past.  A past until, quite recently, I didn’t even fully understand.

I’ll throw it out there because I’m stronger now, and I know I can handle it.

I’ve talked about how poor my family was. This wasn’t just a holiday thing, we were poor all the time.  But that is something I can come to accept, if only out of sheer ignorance.  The real shitter about the holidays, for me, was that a time that should be filled with magic and hope was a time that stole my youth and innocence.

Shortly after I was raped (by a family “friend”) at the ridiculously young age of six, my step-father began molesting me.  This happened around Christmas.  I’ll spare you the details, but suffice it to say that I had repressed a lot of those explicit memories.  I knew it happened, but didn’t really remember when it started.

Everything came back to me, last year, and it wasn’t pretty.

But, it wasn’t all for naught.

This year, I was more mellow.  I wasn’t rushing out to decorate or have all the big parties.  But I didn’t hate everything and everyone, including myself.  I didn’t have any Christmas music freakouts.  Actually, to the contrary, I was actually able to laugh at the songs (rather than curse them), with BFF #1.  There were no tirades about the terrible behavior of children and their even worse parental units.  I even managed to get my Christmas tree up and decorated without fighting with anyone in my house.

The shooting in Newtown, CT threatened to derail me.  And for good reason.  I began to write a whole post about it, but couldn’t.  It was too painful to try to make reason from the tragedy.  I know many people who felt the same.  But I said, and say, my prayers and move on.  Because it’s all I can do.

This morning, as I write this, I’m sitting in my favorite chair, with snow lightly falling outside, and a cup of coffee next to me.  The hubs and the kiddo are still fast asleep.  I’m enjoying the peace.  And, if I remember all the commercials and movies, this is part of Christmas, right?  I’ll get the glory of watching them open their presents and then we’ll all settle into the hum of enjoying them.  But for now…. peace.

And, my God!  It feels good.

Happy Christmas, readers.  I hope this day brings you the peace that I’m overwhelmed with, right now.

The true meaning of Christmas

**Last year, I posted this on my blog after reading The Bloggess’ post about how she gives, and the way she inspires her readers.  It’s worth re-posting, in my opinion.

I’ve long spoken of my disdain for the holidays. The greed. The outrageous behavior. The ridiculous parents who spoil their children (who are already spoiled and misbehaved). The people going further into debt because they just *have* to give that present to so-and-so because “it’s what you do for Christmas.” The fighting between family members. The nonsensical drinking at functions and the following justification because “it’s Christmas” and that makes it okay.

BFF#2 even got me a “Humbug.” This little creature that is ugly and, for me, symbolizes the ugliness of the season.  I love it.

But beyond that, you might be asking yourself, “Why? Why, flame, are you so fired up about this?” I’ll tell you why. It’s a little sad story I like to call the history of my life. It may be depressing in the beginning, but stick with me. It gets better, in the end.

I wasn’t always so jaded. For the first few years of my life, I didn’t know enough to be jaded. That all changed when I hit the ripe old age of 6. I learned, then, that things aren’t fair. And you know what? I was okay with that, for a while.

We were poor. When I hear my friends (who are all doing well for themselves) talk about not wanting their children to “go without,” you’d think they meant food or shelter or something equally important. But no… they’re talking about laptop computers and other bullshit. When I say, “I went without,” I mean that quite literally. At times I didn’t eat. At times we didn’t have electricity. I was even homeless, for a small time, and lived in a parking lot.

By the time I was 8 years old, we lived in San Diego and had it rough. My mother was sinking further into addiction (her drug of choice was meth, but I suspect she did other things, too). She was also struggling with undiagnosed severe hypo-thyroid disease and narcolepsy. My step-father, at the time, was sexually abusing me, and using heroin. We had several other people living with us, all unemployed and all addicted to drugs and alcohol. Both my brothers were working or away from the house a lot of the time, trying to make a living and/or escape the madness. I had no such luck. I immersed myself in books, school, and other cerebral activities. If I was in my head, my heart was less attached to the awful situation I lived in. We got two checks at the beginning of the month, every month. Disability and child support. We lived like Kings and Queens for the first couple of weeks.

The problem is that Thanksgiving and Christmas come at the end of the month. When I was 9 years old, I didn’t eat on Christmas Day. Nothing. Not compressed ham-loaf. Not mushy stuffing. Not even gross gelatinized cranberry sauce. Not. Any. Thing.

When I was 10, we got on some sort of list that delivered food baskets for the holidays. We also got presents that year. I got a jacket. And a toy, I think. I remember my mom asking me what I wanted, and I felt uncomfortable asking for anything. I didn’t know who was giving me a present, and I certainly didn’t think it was right to *ask* for anything when they were being generous by giving me anything at all. I would be happy with what I got. And at the end of the day, that’s something that’s never changed.

When I was 11 years old, I got a bike. Someone, a stranger, bought me a bicycle. A 12-speed. I was floored. When I was 13, I got make-up and a journal to write in. The very first entry I made in that journal was that, someday, when I was older, I would do the same thing for a kid who was in need.

When I was 13 years old, I understood these things:

  • Life isn’t fair. And you had to deal with it.
  • Poverty existed, and I was living it, but “poor” is a state of mind.
  • The best gift you can give or get is love.
  • Regular people had the power to do extraordinary things.
  • Although adults make really bad choices that make their lives the way they are, children suffer. A lot.
  • The kindness of strangers can literally change someone’s life (and it’s changed my life a number of times).

By the time I was 14 years old, I lived with my dad. We didn’t have a lot. I’d even say that we still lived below the poverty line – but we were not poor. We chose to make do with what we had instead of going on welfare. My daddy sacrificed so I could have little things. I did without, sometimes, so my dad still had money to go out and have adult space.

Fast forward to adulthood. Those bell ringers you see? I give whatever change I have in my pocket or purse to them. And my daughter does the same (she’s been doing it since she was 5 years old.  She’s 17 ½ now). I was in line at the grocery store, once, and a woman wasn’t able to pay for her Christmas meal (ham, potatoes and stuffing), so I paid for it.

But the tradition I have that is the most important to me is “The Giving Tree.” (If you don’t know what that is, go to your local grocery store and find the Christmas tree that’s normally near the service/customer service desk. There will be a tree that has little paper ornaments on it. You can choose a name, go buy a present, bring the name and present back to the store and they will get it to the child.)
I go to the store every Christmas, and pick a name off the tree. I look through the names and almost always find a name of a child who reminds me of myself, at that age: a girl about 11-14 who has general interests listed but no specifics. I look, hard, for a gift that matches those interests and bring it back. Sometimes it’s been a diary. Sometimes a winter coat. Sometimes an art kit. Every year I do this.

That is what Christmas is. Christmas is the act of giving. It’s the act of giving to make someone else’s life better, without the expectation of receiving and without the sense of obligation. I do this every year because I said, when I was 13 years old, that I would. If you’re looking for Christ in your Christmas, this is where you find Him. In giving.

Last year, I was amazed to find that strangers who stumbled on to my blog were inspired to give.  So many people, last year, went out and sought out their own local Giving Tree.  Guapo read my post while waiting for his girl.  He went inside the bookstore he was near and bought books to donate.  Right then.  After reading my post.

I only hope to do the same thing this year.  I picked my child to give to this year.  I’m going shopping for her on Black Friday (the day when humanity is at it’s worst, in my opinion).  I hope I inspire you, this year, to give. It doesn’t have to be money. Give of your heart. Give of your time. Be kind. Love people. That is the spirit of Christmas. Everything else is just noise.

Real mature, America

**Let me disclaim that the following rant has nothing to do with *all* Republicans or *all* Democrats.  Just because people voted one way or another makes no matter to me.  My concerns are the ignorant among us who spread falsities without taking a moment to question what they hear.  I am proud to be an American, whose voice is one in the midst of millions.  The collective becomes the Mastermind, if you will, guiding our country to the future, whatever that may be.  So if you voted for Romney, this isn’t directed toward you, in particular.  But if you find yourself bristling with irritation…maybe it’s a shoe that fits too well.  Time to look at your soles… if you get my drift.

I’ve decided that Americans have the collective maturity level of an 8th grader.  We, as a society, haven’t figured out that life isn’t fair, that things don’t always go our way, and that disappointment is to be expected.  That’s the way it works.  We don’t all think the same, and that’s why there are different religions, different political parties – hell that’s why there are different restaurants.  We’re raising a generation of children who think they should get a participation ribbon for just showing up…. when as it turns out, we, as adults, really want to have our cake and eat it, too.

So what’s got me all fired up?  The election, of course.  But not just the election – the aftermath.  It’s bad enough that I had to tolerate propaganda on Facebook for weeks before the election, not only did I have to listen to whining from the same arrogant assholes when Romney didn’t win, but now I see these same douche nozzles signing petitions to secede from the Union. 30 states are signing petitions.  30!

Are. You. Fucking. Kidding. Me?

Here’s the thing – I don’t have any issue with people voicing their opinions.  I don’t even care that they voted for Romney.  This is a democratic process and the only way it works is if people take action and don’t slip into apathy.  This, however, is one step too far.  From what I can tell, this is tens of thousands of people who are signing their name to what amounts to a cyber-temper-tantrum saying “This isn’t fair!”  Guess what, folks?  This is the epitome of fair.  If it got any more fair, it would redefine what the word actually means.  Obama won, like it or not.  He won the electoral vote and (and most importantly in my opinion) he won the popular vote by a pretty close margin (but certainly not the closest margin in the history of elections).  And so what?  Now you don’t want to play with America because you didn’t get your way?  Too damn bad!  This is a country, not youth soccer!  You don’t get an award for showing up.  There are winners and there are losers.  Guess what?  Not everyone and everything I voted for went my way.  I’m not writing or signing a petition to become a citizen of a different state!  I’m gonna suck it up and figure out where I can focus my efforts to support the cause I believe in.

But you know what?  Let’s follow this silly little plan to the end.  Texas secede and then what?  The Mexican cartel rolls in, obliterating all in their path and now has a vein right up the middle of the country to feed their lawless agenda into.  Why not just put a giant target on your flag that flips the bird and says, “please attack us”, because that’s what you’re doing.

Romney lost.  For better or for worse, it is what it is.  When G. W. Bush won 12 years ago (and again 8 years ago), I didn’t pitch a fit and claim the process to be un-American.  I refocused my efforts on ways I could influence closer to home.  I didn’t waste energy ranting about the uncertain future we face.  Here it is, a week later, and I *still* hear and see people bitching about it.  It’s over, folks!  Move along!

There are real tragedies that need to be handled: poverty, recovery efforts following Hurricane Sandy, drug use, unemployment, or how about the fact that less than half of eligible voters actually voted in the last election?

It’s silly.  It’s so silly that I realize that I should just dismiss it, but I’m so tired of seeing it all and having to ignore it.  I firmly believe that we all have a right to say what we want.  It’s one of the rights that make this country great!  But I am disgusted with the select few citizens of this country having a tantrum because they didn’t get their way.  Move on, people!  Guess what?  There is no chance in the great scheme of hell that you will actually form your own country (I’m looking at *you* Texas).  You’ll whine.  You’ll bitch.  And next week, next month, next year, next election, you will still be an American.  So focus on making a difference instead of protesting the past.

*sigh*  That’s my soapbox people.  Carry on.