My Awareness Wish List

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

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 disc 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.

    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”invisible4
    • 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!

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!!!!!


3 thoughts on “My Awareness Wish List

  1. Awesome read as always! I can so relate and I think others can. I hope and pray that others will read this and see your video and learn! Blessings, Jenn

  2. Thank you Jenn…. love you so much and as much as I hate it that you suffer, I am so blessed to have you in my life! I hope we can get this out to those that do *not* have Fibro! One can hope! 🙂

  3. Awesome reading and seeing these things in print makes it real but also makes you realise we are not alone. My best friend Heidi suffered from Fibromyalgia for over 15 years and she was the one who realised it was what i had and all of that from the other side of the world. You see she lived in Americ and I lived in Australia and we met in a Bingo chat room in 1999 and remained friends until the day she died April 15th 2013. She and I never met in person she was saving to come out and see me when i graduated from University and never made it. But we had the most amazing bond from the moment we started talking and we would sense when there was a problem and when life was as its worst i would suddenly get a message from her saying hey sis whats up something is wrong i can feel it and thats how i felt when we lost her and just hours before she passed away i new something was wrong but couldnt get hold of her and hours later her sister messaged me the devestating news. losing Heidi who also battled fibro made me realise that everything we do has to be carefully considered and sometimes it means someone else needs to consider it because we are to sick to even think straight…. Heidi died of an accidental overdoes because she was sick with the flu and couldnt keep food or fluid down and no one thought anything of it but because she was not eating and was dehydrated the drugs she was on were too much for her system and they killed her. drugs that on any normal day would have been lucky to even touch the pain wound up being too much and that was when it hit me that i had to be so aware and so careful of everything i took and to make sure i eat and drink no matter how crappy i felt it is either that or dont take meds which means dont sleep so every day is a carefully considered round of how will this affect me and a constant reminder of why my best friend and support is no longer with me.

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