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

clap 3

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

clap 4

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:

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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.