Last week was Fibromyalgia Awareness Day. I will admit I was a bit disappointed in the numbers. They were lower than an even regular month and last year during Fibromyalgia Awareness month, I had one of my top months of readership. Honestly, it is not so much for Fibromites.  My biggest wish was that NON FIBRO affected people would read this little corner of the internet and pause just a moment to see what our lives are like……. lives destroyed by the R*E*A*L*I*T*Y of Fibromyalgia.

R is for ROAR: Everything roars when you have fibro. From the pounding in your head, to the throbbing of your neck and shoulders, to the piercing cold shooting pains down your arms and legs that can literally knock you down, Fibromyalgia roars like the biggest lion in the jungle. Sadly, it often roars the loudest at 3 AM while the rest of the world soundly sleeps. It is deafening at times, how loud the sound of silence truly roars.

E is for EVERLASTING: The pain is everlasting. If one place calms down a new flare will rear its ugly head in another area of the body. I often joke that my body is a pin ball machine and the ball is a ‘pain ball’ and some unseen force is ‘playing pin ball’ with me. This force is landing the ball in a new place every few days. My video for Fibro awareness alludes to the fact that each day I ‘fight a new dragon’. This reference is also a good comparison. It is frustrating. It is like laundry. When you think you are caught up, someone puts more laundry in the basket.

A is for AWARE: We Fibro Warriors want awareness for our plight. We do not want pity and we do not want to be seen as complainers or drama queens/kings. What we have is very real, very life and soul crushing and can alter the very existence and journey of the Fibromite to the point of complete and utter disability. I feel most of the time as if I simply exist. I have a very low quality of life. I do not live as a normal person lives because each and every thing I do from getting showered and ready for the day to folding a load of clothing takes immense effort. Just grabbing a few items at the store can be overwhelming. Something that is a quick and easy thing done ‘without a second thought’ by a fully functioning person will take us five times as long. Friends forget us and do not invite us, remember us when they come to town or say “Goodbye” when they leave town. Even church family starts keeping its distance. Wait! What would Jesus do? Not what they are doing! Even people who have lost limbs or overcome catastrophic illnesses and recovered have overcome. Fibromyalgia is life long and progressive.

Gnawing, radiating, burning and pain radiating deep to the bone. These are just a few words to describe just the pain aspect of FIbromyalgia.

L is for LIVING, something that gets completely altered when this beast progresses in us.  A recent trip to a museum, for instance, is a prime example. I had to stop and sit every 5-10 minutes. My fatigue was so huge and horrific, it overshadowed most of the joy I got from visiting the museum. I therefore decided that I would make sure Paul got joy and found comfortable seating and thankfully there was plenty available. I sat about 90% of our visit. I then had to take a power nap to go to dinner with our daughter. Dinner, you know, that meal (that when you go out) you sit down and pay someone to serve you. It was as if I was climbing a mountain with giant 50 lb balls chained to each leg. It reminds me of the quote,

“Sometimes even to live is an act of courage.” ~ Seneca

I is for IBS: Good ole’ IBS, for me the most disabling of Fibro’s co-conditions. It is also by far the most ‘bi-polar’ of the conditions. After my 10th time of going, I finally have to ‘reverse thrusters’ and resort to Immodium. After swallowing about twenty inside an hour, I might  feel a let up on the cramping. If not, there are usually more Immodium involved which means in about 5 or so days I am taking stool softeners. It is ugly, it is miserable, it is embarrassing and it keeps you chained to your house. When my Doctor initially disabled me out of work 3 1/2 years ago, my IBS was having me sign off my phone at work up to 10 times per hour for two to three hours. A person cannot work like that! And that is just one of many disabling conditions.

IBS, for me the most disabling of Fibro’s co-conditions, has me doubled up usually about 50% of my week.

T is for TIRED: And I don’t just mean that run of the mill tired that we all seem to have in this day and age, I mean a fatigue so intense, it has literally shut me down like electricity going out during a power outage. I have literally collapsed from fatigue. As Fibromites know, our sleep cycles are that of nights of insomnia followed by a 14 hour “crash and burn”. Our body has to make up for that lost sleep somewhere. Because I also have severe neck problems (unrelated to fibro), I suffer horrific pain with this, especially when I get spasms.The knots can be felt and even seen! I need at least one surgery. And having surgery will not even alleviate all the pain. I recently went through a horrible muscle spasm flare. This went on for about 2 weeks before I went and had my protocol that breaks these spasms up, if only temporarily. A few days later I spent almost 24 hours straight sleeping. I had lost so much sleep in that previous 2 weeks, I was shattered beyond even my wildest expectations.

Y is for Yearning:
Yearning for the one good day among the many bad days; Yearning for a low pain day after several sleepless nights in a row hoping maybe tonight you might get a few hours of uninterrupted sleep; Yearning for the ability to feel a sense of normalcy after realizing how abnormal your crazy, pain filled, fog filled life really is; Yearning to even remember a normal day as I do not remember what normal feels like; Yearning for your gut to just give you some peace; Yearning for people to pay attention as you are not putting up little purple butterflies and noble sayings just for the fun of it. There is a reason; AWARENESS. Most of all,  yearning for a cure. I don’t think I will see it in my lifetime and even if I do, so much damage has been done to my body with 2 decades of Fibro and now a C spine that needs to be rebuilt, it will be too little, too late. However, those sisters and brothers getting a diagnosis today or next year and beyond will reap the rewards of a cure! That is why we must push and never let up for a full on cure. I do not mean ‘patches’ and ‘bandages’ for this cruel and soul crushing existence known as life with Fibromyalgia, let’s push  for a full cure!

If you missed my video on Fibromyalgia Awareness, here is the link:

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

Until next time, K.

A*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?

“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

This has nothing to do with Fibromyalgia Awareness, but he is so cute, I just wanted to make you smile!

It is that time of year again! We get ‘our’ day Fibromites! Yes, ‘our’ day to try and make others aware of our world, our life, our pain and struggle that we know as Fibromyalgia. I hope at this point some of you reading this do not have Fibromyalgia because the whole point of this blog is to raise awareness!

So, now that I have your attention and a few minutes of your very busy schedule, if I had a wish list, what would I tell someone who I were going to ‘sell my story’ to? Here we go, my Awareness Wish List:

• I hurt always, 24/7 somewhere; I never know a moment that is pain free: Now before I hear, “Well honey, that is just a sign of aging” or “Get used to it”, remember, I was diagnosed at age 32 and had had symptoms for 2-3 years prior to my diagnosis! I have been living this hell for 20 years and it is progressive. I do feel the signs of aging along with the progression of Fibro and a neck that needs re-building. I have been told I could wake up one morning and literally not feel my legs because my neck is so compressed by cervical stenosis (separate issue from Fibro). It is kind of like being in the movie “Groundhog Day”….  you wake up over and over again to the same hell.
• I have a headache everyday: Fibro, Cervical disc herniations with advanced stenosis, hormones, sinus issues and the fact I cannot sleep lying down for more than a couple hours a night (and the last month not at all), and I have a headache every single day with at least 1/2 the week being migraine level. It is hell on earth. I really cannot add to anything other than if you have never suffered with migraines, you just do not have a clue.
• The Fatigue is like being hit by a pack of Elephants: Everyone has had a really bad flu. They cannot move. Every muscle aches. It takes everything in them to just get up and go use the bathroom. Even then you wait until your bladder is about ready to explode because you just have no energy. That is what the Chronic Fatigue part of this condition is like. My technical diagnosis, Fibromyalgia Chronic Fatigue Immune Deficiency Syndrome. I know it is a mouth full, but that is the level of fatigue I feel most of the time. It is the sort of fatigue that levels me and keeps me on the couch, in my PJ’s until 5 PM and then Paul has to come home and cook after working all day. Did I mention he is juggling 3-4 jobs because SSD are ass wipes and cannot get their heads out of their back-sides and get my SSD approved yet people with a fraction of what I go through get approved. One of my best friends cries when she looks at my MRI scan of my stenosis…. a glaring, obvious sign of how ‘sick’ my neck is. Stay tuned for my next blog post on how f___d up our disability system is.
  

  Two herniated discs and advanced stenosis (pressure on the spinal cord; see normal spinal cord at the thoracic level and totally constricted spinal cord at the C spine level). This is separate from my Fibro and causes intense pain, muscle spasms, recurring falls, numb hands and feet among numerous other symptoms. One of my best friends cries every time she sees this picture and my best friend next door cringes when looking at it. I have had numerous friends ask me how I function; my answer, “Not well”. The disability judge said I could be an ‘assembler’. HA! HA!, that is funny, as this causes me to drop 50% of everything I pick up, every single day.

  • Stigma: Yep! Believe it or not with 200-400 million people in the world suffering from Fibromyalgia (roughly the same number as the population of the USA), there is still stigma to this condition! Many people say our illness is not real. They think we are ‘faking’. They think we ‘make our illness up’. I have had ‘friends’ and ‘family’ extended and blood tell me to just “exercise” or “snap out of it”. Sound familiar to any Fibromites? If you are reading this and do not have Fibromyalgia but have Diabetes or Arthritis, how about just ‘snapping out it’ or ‘getting out more’. I, of course, do not mean that. I am just trying to put the shoe on the other foot. And in all fairness, there are many people…. friends and family…. that are very supportive too!  I am lucky in that I test 18 of 18 tender points and my muscle knots can be felt and seen by the naked eye. I also have the tangible (can be seen on scans) neck condition to go with it. Twenty years ago when my neck was x-rayed, I was told (upon finding my kyphosis… reverse curve), within 15 to 20 years I would have arthritis, bone spurs, stenosis, possibly disc herniations and disc degeneration. I have it all. It was as if Dr Johnson Jung in Bakersfield, CA was looking into a crystal ball. He was a fabulous Doctor. Wow, did he nail it. He was good enough to send me to a Neurologist who then sent me to Scripps in La Jolla, CA (San Diego) to get my Fibro diagnosis from the head of Neurology. When I was diagnosed, the head of Neurology at Scripps did not question the validity of Fibromyalgia for a moment. I cannot believe there are some that still do! Shame on anyone that does! Karma will show those that do. This illness is very real.  In the words of one of my favorite bands, “What a long, strange trip it’s been”
  • A Day In The Life: What is a day in the life like for a Fibromite? First if the Fibromite has had sleep, we get out of bed/off the chair/couch/recliner. Many times we need help because morning stiffness is always a given. A throbbing head is usually the first thing to greet us. I often say it is like having a hangover without the fun night to go along with it. That sucks. If I have to feel like crap all the time, I should at least have something to show for this. Getting moving is a slow process. I do not know very many Fibromites that I would call ‘morning people’. Most of us are night owls. We have our daily Dragons to fight. Some days it is headache with gnawing, burning neck spasm and sore ribs (Costochondritis…. which I first got in 1987 after a bout with bronchitis, was this a precursor?). What will I drop today? Will I take a fall? Is it raining? If it is, I will be very sore for sure. It is like having the flu and it never ever going away but add light sensitivity, sensory overload (white noise is so LOUD!), brain fog, insomnia, followed by 14 hour crash and burns, memory loss, anxiety, unforgiving fatigue, depression, loneliness, isolation, the dreaded “Fibroburst” which has only happened to me about a dozen times in 20 years but is akin to what I would think being terminally ill is like and the list could just go on and on and this is just for the Fibro/CFS/ME….. add a neck that is wrecked and well……you know and if you don’t, I hope you are now aware.
    

This pretty well sums it up!

I have had Fibromyalgia for 20 years. That is 40% of my life. I do not even remember what ‘normal’ feels like. When my Fibro was well managed, I think I felt pretty ‘normal’ as I was the all-American Soccer Mom and had a lot of energy. I also had a weight problem. I think it is fair to note I had way more energy at double my body weight than I did after my Roux-en-Y and while my cardiac health looks good on paper, I feel like crap (not the word I want to use, but I do not want to offend anyone!). The numbers can look great, but the body can be screaming a different tune. Pain, Fatigue, muscle spasms….. I may not have a heart attack, but my quality of life is poor. I had dreams and my dreams have been shattered. Fibro took my dreams from me and until there is a cure or effective treatment, I will continue to exist. I just hope the readers of this blog are not only people that share my affliction, but people that need to understand the world we live in; The world of Fibromyalgia. Until next time, K.

Here is the link to my Fibromyalgia Awareness video…. I had to pull the original video and redo some of the music because You Tube is ridiculous about Copyright. It would seem if I play a song on a video it would promote the song…….especially given I bought the song on I tunes to play it on my video. Well, that artist’s loss is an amazing band in Northern Ireland’s gain! Remember, this is all about Fibromyalgia Awareness! So please watch, share and be aware!!!!!

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