A*W*A*R*E

aware4A*W*A*R*E

Happy Fibromyalgia Awareness Day!!!!!!!!

A:  For the AGONY that we live with day in and day out. From the moment we open our eyes until we fall asleep (if we are so lucky!). From a throbbing head to a gnawing, burning neck, the agony can be and is everywhere. It radiates from deep within our bones to the skin. Yes, it literally hurts to be touched. As I type this, I knew before I looked outside it was a cloudy, wet day. I did not even need to open the curtain, my body told me. Agony. In our bodies, always. Somewhere.

W: For The WARRIORS we have become. Most fold after years of this kind of pain. Most see an end….. even if it is death. We live with this hell day in day out. We are then ridiculed, on a regular basis…… many times by people we love….. and then questioned by society on the validity of our illness. As I type this my neck is burning. It is radiating with a pain so intense it would send a ‘well’ person to the Emergency Room wailing in pain. It would fold a healthy man. My head is pounding. My nose is running. My feet are burning. It is cloudy, but the brightness of the day is too intense. If I were to go outside, I would still need sunglasses. I am tired. My eyes burn. I got 1 hour of sleep laying flat…. the rest, all 4 hours…. was broken sit up sleeping infested by nightmares. Remember too, this is not just one night, this is each and every night!

A: For the ARRIVAL of a CURE or GOOD treatment. A true, real, treatment that gives us a life that lets us LIVE!

R: For Remembering what normal felt like. I do not remember anymore as I have spent 40% of my life now as a Fibromyalgia Warrior. It is all I know and I fear now I will die without ever knowing a cure. I said I would never get a tattoo because you are ‘branded’ for life and life is a constant journey of change. I am not the same person I was even 2, 3 years and especially a decade or more ago. However the one thing that has not changed in 20 years…… Fibromyalgia. This condition has remained constant in everything I have done for the last 20 years and has been pivotal in the way many people have treated me: both good and bad. I may just get a tattoo of the purple Fibro butterfly. I am not even a big fan of purple. I think it is surviving hours on end of the Barney the purple dinosaur. However, even if I live to see a cure, this condition has made its mark on me. I will never forget what it has done to me, my relationships, my health, my dreams and the people it has both brought in and out of my life….. and especially the people I have seen for who they are; good and bad!

E: E is for Eclectic. 🙂 OK, so I had to give me, Kelli the Fibromite a word that is mine. Kelli, the California native, free-spirited, bohemian, open-minded girl (See, if I really try, I do remember who ‘me’ is!) a word that describes me, just me, separate from the confines of Fibromyalgia. But wait, every person I know that has this horrible condition and/or its sister and brother conditions such as M.S., Lupus, R.A., Lyme. etc is Eclectic. We wear so many hats and put on so many faces (usually happy!) for people when we are just thinking, “When can I go home and get my PJ’s on?” in our little think bubble. But who am I? I am Kelli…. a person who loves to make people happy. If I could I would be a flight attendant and writing on the side. If I really could, I would be earning my living, like Danielle Steele, carting off a novel every few months and sipping iced tea on the porch of my beach house on the OBX, flying into ROA once a month to see my kids and Grandkids. Of course they could come to the OBX anytime and see me….. ok think bubble come back… whoa girl, Whoa! Wait! If I made it really big, as in a Bazillionaire territory, I would live in my posh house in San Francisco; my favorite city on earth and the one place I feel I truly ‘belong’ and jet in on my private jet once a month to ROA, hazardous descent be damned! I will just hire Sully as my private pilot! Hey I am rich here, I am thinking big…. BIG! OK, think bubble, we are getting way, way too big.

Seriously though, that is what a broken body is containing. It is containing a soul that wants to just be cut loose. The soul is so willing and the body is so broken. Now my oh so broken fibro ridden body and sick neck is in on the action and the body is not a spring chicken anymore and we have a freakin’ hat trick.

So as I write this Fibro Awareness Day Blog Bomb, If I make no one aware of anything else….. let me set this straight….. so little has changed in twenty years.

I was a young Mom when AIDS was ‘discovered’ and now it is not a death sentence if caught and treated. In fact the virus can become nearly undetectable. This is in less than 30 years! I have seen cancer go from most dying to most living (if caught soon enough). I have seen MS go from a death sentence to manageable. I have seen progression in almost all illnesses I can think of, so pardon the verbiage but WTF is going on with Fibro here? In two decades I went from a med cocktail to a slightly ‘better’ med cocktail. For those who are now thinking, “But Fibromyalgia is not a terminal illness!”. I say, in many ways it is. First, it has an increased suicide rate of 8-10 times the average rate. That is huge! I don’t know a single brother or sister in this plight that has not ‘thought about it’ at least once. I wish I had a $5 bill for every time I had. I am being honest here! For me it is usually at 3 AM when the pain is glaring and the world is sleeping. The white noise is so loud! Remember the song, “The Sound of Silence” by Simon and Garfunkle?  Fibromites, it is our turn, don’t you think?

 

invisible9“F” in Fibromyalgia = Forgotten. We are so often forgotten by our well friends and family. We are viewed as negative or even defective. We are looked at often as being ‘needy’ or even ‘exaggerating’ our illness. My next post is going to be no holds barred and I will take you into the last 3 weeks of my life and the true hell of what it is like to walk on the edge. Many of us…. myself included… feel our life has no purpose. I often feel I am a waste of space and resources. This is truth: plain, hardcore, truth.

I am sorry if this seems blunt, but this is after all, Fibromyalgia Awareness Day. Please be aware, this condition is ugly, painful and it is a destroyer of lives. Until next time, K.

Here is a link to my Awareness 2014 You Tube Video

https://www.youtube.com/watch?v=5109ysHdqQY

and the Fibro Suicide Awareness Video

https://www.youtube.com/watch?v=lzCqzSvUch8

Dedicated to all my Fibromites…… “silence like a cancer grows….the sounds of silence”…. if people knew how loud the quiet really is……..

https://www.youtube.com/watch?v=dTCNwgzM2rQ

fibroaware_14

4 thoughts on “A*W*A*R*E

  1. Thank you for sharing how so many of us feel and think about how fibromyalgia has changed our lives and with our family, friends. I am one of the few have support of my family and a few friends. I have had this since 2010 but I think I had it longer then that. Again thank you for sharing this.

    • Thank you for sharing Mary and thanks for reading! Most people have Fibromyalgia many years before getting a diagnosis so you are right, you most likely had it post 2010. I sure hope they find more aggressive treatments like they have for MS, Lupus and other like illnesses. Still, it has improved somewhat in 2 decades. But either way, it turned my world upside down. We are all in this together though and we shall overcome! Blessings! <3

  2. Just now catching up on my reading. Love this post. I especially identify with mourning a loss of purpose in life and the dreams and recall of what we “used to be.” I also can identify with “forgotten.” My father’s sister was constantly ridiculed for her “imaginary” pain and ailments which I am now positive was fibromyalgia. I am lucky that my hubby is a great support system, but the rest of a normal family surely does not understand the constancy, the endlessness, and the frustration of chronic illness. Good luck and I look forward to the next post.

    • Thank you so much Deb! Having a good support person is imperative if we are going to keep our ‘cheese on our cracker’ so to speak. Having been on one end to the other, I can tell you it makes the difference. I too have learned to try my hardest not to criticize what I do not understand. We never know what a person is going through until we walk in their shoes. I wish every person that judges us could live/ experience a full flare day just 1 day and then tell us again how they feel? And for your Aunt, I too feel very strongly my Mother has Fibro but was anti Doctors. But she had a lot of trouble with her neck and back, etc. She masked it with her addiction, but I now can see as plain as day that besides addiction, she was ‘self medicating’. Thanks again so much for reading! Next post should be up inside a day! 🙂 Blessings!

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