Fibromyalgia Suicide Prevention

movie4Fibromyalgia Awareness. We  Fibromites attempt to show the truth about Fibromyalgia while drowning the inaccuracies. We talk. We write. We post quotes and pictures on social media. However, many of us strive to further drive home how much this elephant on our backs really affects our lives every waking moment.

I undertook my first You Tube video to a beautiful but sad song about suicide. We all know Fibro in and of itself is not life threatening. However, the pain is life long and coupled with secondary conditions and the natural aging process, I myself shudder to think what I will feel like in ten, twenty, thirty years time when I can barely get around NOW. The other thing that came to mind was that the suicide rate for Fibromyalgia patients is eight to ten times higher than the average population. This is huge. I get it. I know the feeling of not being able to take it anymore. Enter a life crisis and a few people telling you to “Shape up….” and that is the straw breaking the back. I do not think people realize how both ignorant and arrogant they can be about something they have no concept about. In addition, I find it rich that people assume that if you are in a crisis it is automatically about your Fibromyalgia/ health. I decided to put on my director / editor’s cap and possibly found my newest addiction. movie2

I proudly present my first You Tube Video, to Rascal Flatts beautiful song, “Why”:

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

Until next time, K.

Ode To A Platitude

plat2We all have seen them. We all have gotten them. All of us, forging this trek of chronic pain, illness or any other journey that requires a stand. Let’s use parenthood. What used to be loving your kids and getting together with other Moms now seems to be a sport of ‘taking sides’. Breast vs. bottle? Circumcise or not to circumcise? Co- Sleep or put in crib? When to start on solids? To vaccinate or not? When did parenting get so complicated? Here is a radical concept: respect. Let’s respect each parents decision to make these decisions. It was not until someone trying to push me for information…..information I was not prepared to share with this person….. that this person proceeded to attack me for using a walker for my kids in the 1980’s and 1990’s, when non-wheeled saucers were not even available. I then realized how truly arrogant some parents of today have become.

Now read this: some, not all

The attack was an emotional ploy to get me to ‘spill my guts’. It was a bully tactic. She was being a nosy busy body and I was having no part of this cruel game. So she was punching low….. in the parental gut. I knew the game that was being played. However, as far as parenting, she really is arrogant and smug.   How did we get our kids to adulthood without these master parents around? How did our parents and Grandparents get generations before us ever raise kids without these guru’s to guide them? That was the limit for me. Luckily people like this spark my most creative writing endeavors. These are the same ignorant rants that we all hear. Of course I know there are those ‘worse off than me’. The person in the slums of Kibera is worse off than I am. And for my placement in life, I am so very grateful. The person in Kibera, with the shelter of a mud hut and rice in their belly, is better off than the person taking their last breath in a bed dying of a painful terminal illness. It is all relative. Still, when faced with a crisis, you are not thinking about how ‘you have it better so many others’. You are focused on, ‘what the hell you are going to do now’ and you sure as sunshine do not need lectures or platitudes.

I give you my latest poem.

plat3jpg

Ode To A Platidude

 

Platitudes are simply attitudes

That say, I don’t give a crap-itude

Platitudes say I am one upitude

Not a empathetic-tude

It screams

A stand-itude that says,

I am more important

 

 

Platitudes say I am not a listen-tude

They say, I have it worse-itude

If you really care

You will share

A smile

A hug

A prayer

 

Platitudes say I am a nosy-itude

They scream, I am a busy-body-itude

I am a condescending pain-itude

I don’t care a bit-itude

They are a sugary sting

No substance

No ring

Just daring to be uncaring

 

Platitudes are excuse-itudes

To be a smug, pain in the ass-itude

Instead, just care

Be fair

Say a prayer

Do not judge

Send a hug

You never know

When your world will crumble

And you will need, just love

 

Platitudes are slap in the face-itude

That say, I don’t care about you-itude

They scream, I am perfect-itude

I am a know-it-all-itude

But,

Everyone has their limits

Including you

Have a heart

Karma is smart

And if you do not give a crap-itude

Karma will bite back at you

And then someone will give you

An attitude, carefully disguised as,

A Platitude

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Winters Fury

Winter1*All pictures are the sole property of Paul Glover, Paul Glover Photography, ALL RIGHTS RESERVED

As a chronic pain patient I know I am not alone in saying how much I loathe, despise and generally hate winter. Normal winters are bad enough, but this winter has been cruel and grueling. We have had nearly non-stop arctic blasts putting wind chills into the single digits and even negative temperatures. Even with the heater going and layers of warm clothing, the cold creeps into the house. If you have to go outside for even a few moments it is just agonizing.

One can never really know what it is like for someone else unless they have experienced the same thing. A man cannot know what labor pains are like. Someone who has never had a migraine cannot fathom what an intense, debilitating experience it is unless they get a migraine at some point in their life. I cannot imagine what it is like to have kidney stones because I have never had them. What we all can do, however, is try to empathize. Those of us that walk this walk on a daily basis do not want pity. We just want healthy people to understand that each and every thing we do each day, even the most mundane of tasks, take five to ten times the effort of a well person. For instance, my Cervical Stenosis has gotten so dire that I cannot walk the thirty or so feet to my car from the steps without dropping my keys at least once. A text from me is going to be full of typos. This is not because I do not know how to spell but because my fingers just do not work. Imagine trying to wash your car with about 30% to 50% of the pressure that the hose normally produces. Winter magnifies it…it is painful and cruel. I hate it and feel like hiding until April.  People wonder why I miss California so much. The list is long, but this is one of the many reasons. I know I am not alone. So here is hoping Punxsutawney Phil predicts an early spring. If he does not, I may find a cave and just sleep until the mercury decides to rise to a livable temperature. Until next time, K.

Winter2

My January Day, Visiting August: Osage County

Osage1aaPaul and I go out to the movies about one time a year. It is all our wallet can handle. We sneak our own soda in and with popcorn up to $6.25 for a small bag, if I am in the mood for a snack, I will sneak a small bag of candy in as well. Pawning a kidney simply to get the ‘big screen’ experience is not an option. We did have free passes, a Logan’s gift card (Christmas gift) and had not been on a ‘date night’  in forever. I felt passable so we opted for “August: Osage County” overlooking that “Walter Mitty” was still showing, albeit at only one early afternoon matinee. Little did I know this ‘black comedy’ was going to have me crying through part of the movie.

Osage3aJulia Roberts is my favorite actress and Meryl Streep is one of my favorites. If Meryl Streep does not win the Oscar, it is a crime! As the daughter of addiction, Ms. Streep did not just nail the part, she had me so engrossed, my Post Traumatic Stress Disorder kicked in and I literally felt I was there….. feeling I was back with my own Mother and reliving her escapades while she was under ‘the influence’. It was almost as if I was watching my life, with the addition of two sisters and an array of eccentric, imperfect extended family to help support me in their own way. I have always maintained if my life were made into a movie, I would want Julia Roberts to play me. Little did I know that in a way, my prophesy was coming true! This led me to think; what if my battle with chronic illness started long before the chicken pox and shingles ever hit me at age 29? What if getting the chicken pox and shingles were just a trigger for the inevitable? Perhaps trying to stay focused on getting the hell out of dodge and staying sane in a house of horrors for so long made me extremely fragile. The first really difficult physical illness that set me up to crumble, physically, like a tired, broken down building just needing that last little push in order to give way. I will maintain that every fellow fibro warrior I have talked to can fill in this sentence, “I was never the same after________”.  Perhaps for me it could and should be amended to “surviving a verbally abusive alcoholic Mom.”

Osage2

This is not a ‘warm and fuzzy’ movie with a ‘happy Hollywood ending’. It is, nonetheless, real and accurate. If the author did not grow up as the child of addiction, they had a whole lot of input from people that grew up in the chaos of addiction. You cannot ‘just’ write this. And every actor and actress did their homework well. I tip my hat to the entire cast. When I feel like my life is being played in front of me, that says it all. There were moments I literally did not see “Violet Weston”, I saw my Mom. The way she swayed back between being kind to nearly evil made my hair literally stand on end. Of course as anyone with PTSD can tell you, we tend to ‘flash back’ to those events that made us who we are. We do NOT live in them. We get PAST them. However, when presented with something that ‘puts us there’, we cannot help but be back in that very moment. It is an element of PTSD that just is what it is.

Osage2aI feel this movie should be mandatory for every Psychology Class and any Class, College or High School, dealing with addiction. The addiction does not matter. The collateral damage is the same. My Mom did a lot of things that I could easily have not forgiven her for. However, I did. They are long forgiven. The only thing I ever asked of her was to get help for her addiction. I told her when she finally reached out for help, I would be her biggest fan and cheer her through the entire way. In the end she died for her addiction and of her addiction and I, still her ‘protector’ or maybe even an ‘enabler’ to a certain extent, out of respect, choose not to disclose the details of her death. I tell only my closest most trusted friends. It is sad. It is pitiful. And it is the most lonely death one could ever imagine.

Do not get me wrong, this is a fantastic movie. I do not want to give the impression that is is a sad, sorrow filled, downer of a movie! It is not that at all and most people will find Streep hilarious especially the ‘Eating the catfish’ scene! I laughed plenty through the movie and Paul enjoyed it very much! This movie did lead me to another train of thought: what if the stress of living in this mess was the true start of this mess I am living with now? I probably will never really know. This I do know: Addiction is a horrible disease that affects not just the user, it affects countless others. The others affected are affected their entire life time. If you have Fibromyalgia, think back: was there trauma in your childhood? Another train of thought: if an imperfect someone in your life is really trying to right a wrong, at least they are trying. The “Violet’s” of the world just carry on their venom and see no wrong in it. I hate spoilers so I am not going to say a word about the ending other than we heard some people around us that were disappointed or wanted it to end another way. Paul and I? We ‘got it’ ; we so, so ‘got it’. Until next time, K.

In this scene (this is not the last scene), I think I would have just kept running!

In this scene (this is not the last scene), I think I would have just kept running! I can so relate to how Barbara was feeling.

 

The Tangible Tales

tangible1

If you look up the word tangible in the online “Merriam-Webster” dictionary, the first thing you will see is the following:

http://www.merriam-webster.com/dictionary/tangible

1tan·gi·ble

adjective \ˈtan-jə-bəl\

: easily seen or recognized

: able to be touched or felt

In the world of chronic pain when we talk about tangible conditions, we are generally referring to those issues that can be seen on scans and images or be detected by other testing. In other words things that can be seen and pointed to. So many of us that have chronic pain…. especially Fibromyalgia…. spend a great deal of time “proving ourselves” as our pain is word of mouth as well as muscle knots that can often be felt. Sometimes, but not always, our blood work is a little “off” but nothing earth shattering.

In my situation I have both tangible issues and issues that cannot be seen by scans. However, it seems as of late, my tangible issues have overtaken my Fibromyalgia in the great “race” for which conditions are wreaking the most havoc at any given moment. Hands down, my neck is the number one culprit.tangible2In the last year and a half, three scans: A regular X ray, an MRI and a CAT Scan all revealed the following: I have 2 disc herniations, degenerative disc disease, osteo-arthritis, severe kyphosis (a reverse curve aka a ‘hump neck’), numerous bone spurs and the worst of all of these, severe stenosis on every level of the C-Spine as well as T-1. I was sent to one of the two best orthopedic doctors in the area. He said he would not touch my neck, but sent me to the other one (who was in a different practice; a rival), and this Doctor agreed to take my case. However, I was too afraid to have the surgery a year ago. I still am but fear that I have declined to a point to where I am going to be left with no choice soon.

tangible3Nearly all of the time I have little to no feeling in both my hands. Most of the time my legs and feet are at best ‘pins and needles’. The scariest part comes when my right foot ‘contorts’ or goes into a painful and uncontrollable ‘Charley Horse’ like spasm that I have to just ride out. Paul comes and rubs my foot as it contorts without anything I can do but just let it go. Sometimes the spasm is done inside one minute, other times it goes for over five minutes. The major downside to this spasm is I fall. And when I say fall, I mean I am down like a 5 ft 8 in rag-doll. I have fallen in all kinds of places but since I am home most of the time, I usually am able to catch my falls someplace within my own home. A few of the falls have been hard, including the pavement and cement stairs. Paul has witnessed at least one fall first hand and as he said, it scared him senseless. I feel like the “Elephant Man” much of the time. If you are reading this and you remember that movie (I am showing my age), The Elephant Man or Joseph Merrick of the United Kingdom could not sleep laying down because the weight of his head would suffocate him. Now I am blessed not to have such a tragic condition as Mr. Merrick, God rest his soul, however, I do get the not being able to lay down scenario. I have not slept laying down in a bed all eight hours of a night since 2011. The stenosis in my neck causes such an enormous feeling or pressure on my head that I would end up with a raging headache if I dare try to sleep laying down. There is no way around it. It just sucks. tangible4There is one thing I have been assured of: It will only get worse. I also have arthritis throughout my lower back. This has been detected in the last few months. The one area I never actually had a lot of problems was lower back. The key word being, was. Now it is sore most all of the time,  and at its worse if I have been on my feet for any length of time….. even ten minutes.  Yet I still fight for my disability after three years (stay tuned for a later post on the subject of how miserable and broken our disability system really is). I still put on my ‘happy, happy’ game face as to not dare be a “Debbie Downer” for all the world to see. Dare I actually open up and be honest about my life and the struggles face on a day to day basis? That is what this little spot on the internet is for as well as the occasional ‘bad day’ on Facebook.

This is one of 100's of views of my MRI, a 'soft tissue', very detailed 'magnetic view' of my cervical spine. One does not have to be a health care professional to see about 1/2 way up it looks like a multi-car pile up or hot mess. The pressing on the spinal chord is clearly visible. This in turn compresses all signals and feelings to all other areas of the body.

This is one of 100’s of views of my MRI, a ‘soft tissue’, very detailed ‘magnetic view’ of my cervical spine. One does not have to be a health care professional to see about 1/2 way up it looks like a multi-car pile up or hot mess. The pressing on the spinal chord is clearly visible. This in turn compresses all signals and feelings to all other areas of the body.

These are four of 100's of 'slices' from my CAT Scan of my Cervical Spine; a very extensive nuclear image which is like an x-ray, except much more detailed. Again, like the MRI, one does not have to be a health care professional to see this is one messed up neck. Very visible here is the severe kyphosis (reverse curve); the *worse* the first orthopedic Doctor (who is considered one of the best in the area) said he has ever seen. He refused my case because my neck is so bad. Also visible is one of many bone spurs. This is a very wicked one, hooking over about midway. It is not hard to miss. The degeneration is visible and one of the herniation's is visible (C1/ C2) because that actually herniated so long ago, those two vertebrae fused themselves together. They are at the top and look like a little 'hat' tipping to the side.

These are four of 100’s of ‘slices’ from my CAT Scan of my Cervical Spine; a very extensive nuclear image which is like an x-ray, except much more detailed. Again, like the MRI, one does not have to be a health care professional to see this is one messed up neck. Very visible here is the severe kyphosis (reverse curve); the *worse* the first orthopedic Doctor (who is considered one of the best in the area) said he has ever seen. He refused my case because my neck is so bad. Also visible is one of many bone spurs. This is a very wicked one, hooking over about midway. It is not hard to miss. The degeneration is visible and one of the herniation’s is visible (especially in the lower left picture, C1/ C2) because that actually herniated so long ago, those two vertebrae fused themselves together. They are at the top and look like a little ‘hat’ tipping to the side.

 

 

Fibromyalgia on its own is a struggle enough. Along with pain and fatigue as well as the array of collateral damage that bombards our body, many of us have tangible issues to deal with such as arthritis, disc herniations, stenosis, etc. It is like piling more on an already weak structure. Pretty soon it gives way , cannot bear anymore and collapses. The only ‘up side’ to having tangible medical conditions is that no one can accuse you of ‘making up’ your condition. If they dare to all you have to do is pull out your scan and report and point them to your troubled spots. Pictures do not lie. I was tempted, upon receiving the radiologist reports, to have the edges of the report gold tilted and special delivered to all those in my life who accused me of ’embellishing’ the truth of my pain. Then I realized Karma would take care of all that and it was not worth my time or concern. Until next time, K.tangible_large

The Quest For Perfection

Perfection3

If you stumble in this life, you will spend the rest of it ‘proving’ to those you stumbled in front of that you can now ‘walk’. Trust me, I know where of I speak. It does not matter how sorry you are for the stumble you took and how hard you work on molding your life into something that you are proud of; someone will be there always whispering in your ear what a dismal disappointment you are or what a colossal failure you have turned out to be for one reason or the other. If that someone has a person or persons that resent you constantly jabbing their side with snide comments about you, it will be as if you steal groceries from a little old ladies. The saying the ‘punishment does not fit the crime’ was never more true in this particular instance. Sadly, the people doing the snide jabbing usually are ones that think their hypothetical ‘poo’ does not stink. I say, “whatever”. Karma will set them straight soon enough and in fact from my birds eye view, it already is in some instances. But what about you…. what about your efforts? What about all the time and work you put in to being a better you; a more improved you? If you have Fibromyalgia and/or Chronic Fatigue Syndrome…. something these ‘snide giving, jab givers’ like to chime in is ‘not real’ or simply in ‘her/his head’ (still stuck in barbaric thinking, again, “whatever”… Karma and all that), what can you do? You can completely undo a nerve block that should have lasted about two to three times as long. You can sit up all night and cry and worry. You can let it eat on you until you are physically sick. Or, you can let it be. People are going to think what they think. I should know, I was in a totally different mindset even as little as a decade or two ago than I am right now. Oh to have had the wisdom at twenty or thirty years that I have now! How wonderful that would have been. Now all I have is one MOTHER of a painful condition, the natural aging process on top of that, General Anxiety Disorder and a bunch of people that just do not get it. So I continue to strive to be perfect. perfection1Having a medical condition that most people at best, think is a product of not ‘pushing through it’, is a challenge enough. Can a car push ‘through it’ when it is out of gas? Tell your car that the next time you are on the side of the road because you thought you could just make it ‘one more mile’ to the gas station. That big pile of metal is not going anywhere until it has gasoline in it. Fuel. Petrol. Whatever you want to call it. It has to have the energy to make it ‘go’. We with Fibro/CFS/ME/Lupus/MS and the whole other spectrum  of connective tissue/auto-immune illnesses know too well what it is like to ‘run out of gas’. My husband Paul had seen it too many time. He also knows, when we are out, reassuring me that foot and shoulder rubs are awaiting me in my near future. When all I can focus on is getting through my door and into my PJ’S to flop down on my couch…. he is cheering me on like a coach would cheer a crumbling team down by 30 points to just get them through the rest of the game. But still, I try to be perfect.

perfection4I know I sent Santa my Christmas List but I need to add one more thing to that. Please Santa, I really need this one!

Santa, I need people to quit holding me up to unrealistic standards. This goes for normal things. I am not always going to say or do the exact ‘right’ thing. Who does? Is every single person perfect? No. That includes me. Physically: I cannot do what the ‘average’ person can do. I cannot do much of anything. On most days I am doing good to shower, get a load of laundry done and a simple dinner. I can only stand in 30-45 min increments. I am so glad Kroger has gift cards now for every store under the roof, that means I do not have to try and venture out to this store and that store. But what about me? What I want does not cost money. I just want people to understand my plight. Understanding does not mean someone expecting me to travel to where they live when they have a fraction of the medical problems I do, a confined area of chronic pain as opposed to pain everywhere and as far as I know no severe (as in out of my head, in tears, in a ball in the couch) pain from the spine. Yet their pain prevents them from traveling the same distance? It is OK. I will never question someone in pain. I know too well what that is like and you will never find me going there. So where have I failed in explaining how grave my situation is, here? And yes, there are other issues but other issues aside, if there were no other problems to contend with, my physical state would still be the one thing that would prevent me from traveling that distance. Obviously I am failing to communicate.

perfection1a

So Santa, please, can you make me perfect in the eyes of those who want me to be? And if you can’t, can you sprinkle some understanding, a few doses of empathy and a large dose of holding me to the same standards as any other human being?  Because one thing I know in talking to literally hundreds of people, of the many mistakes I have made, I am not the only one to have made them… and many have made worse. The key is, my heart and my effort. That should speak volumes. A kinder, more loving heart you will not find; even in a body that never, ever feels good.

Happy Holidays to all. May your Holidays be peaceful and loving and may your New Year be blessed. I think I will give myself the gift of allowing myself to be human. If people truly love me, they will finally see I am doing my best, I am trying my hardest and I live in agony everyday. But I put on one heck of a game face. Fibromites and fellow chronic pain warriors, I know you do too! Love and soft hugs to all. Until next time. K.

FibroDontJudgeMe

Dear Santa: A Fibromite’s Christmas Wish

Letter_to_Santa1Dear Mr. Claus,

Do you remember me? I did not live here in Virginia as a child. I lived in the foot of the great San Joaquin Valley about 100 miles north of Los Angeles. I was a cute dark haired little girl with lots of red highlights and I loved Barbie Dolls. Oh yes, in my prime toy years, it was all about Barbie….. a house, car, Motor Home, swimming pool and even an airplane. Oh how I loved that airplane for I wanted to be a flight attendant one day and see all the places I could see! Yeah, now you remember! I was usually good, not too naughty. Feisty maybe, but I never naughty. I always left you two cookies and milk.  There you go, now you got it! You remember!

I am grown up now and in fact I am a Mammo! I still feel so young inside. And in fact today 50 is young! I am not asking for things. I am not asking for possessions. But Santa, I need some help and I am hoping you are the man that can do it! I do have a Christmas list this year and I am calling it the “Fibromite’s Christmas List

I don’t need things, I need some sleep: Could you add some clarity too. My brain is working overtime and it forgets and gets mixed up and I don’t know what to do. Could you sprinkle some understanding on those who I love and hold so dear. For they get so short with me and it makes me so anxious that I resort to tears. I hear not a word lest I mess up. Then swift comes the ax of strife. Why can’t I get a good word of encouragement, it would so light up my sad and dreary life. And let me harbor on that thought for it is not dreary but for this: this illness that rules every thing I do from going to church to forgetting a small shopping list. I love with abound and do for others without judgement of their beliefs. Yet an illness that renders my brain to embers sends in the judgement police. It is a dangerous game when your heart is on a string and your life is has so little to gain and you feel your love is in vain. So Mr. Claus I implore, a miracle or perhaps more. I need your help and I am out of time, please do this for me and I won’t ask anything else for all time.

Loved ones dote on other people. They hold them in role model esteem. While I try so hard to be perfect. But fall flat on my face at everything. Dearest Santa, I need motivation, for my life is dismal at best. I hurt all the time, I need a new spine and my gut feels like it is having a fit. The smallest of things like cleaning the kitchen, are big triumphs to me, so don’t you see? Dearest Santa my list is quite simple. But I will list it one at a time anyway. And yes, I do realize the list repeats itself in a few places. It is my way of saying, “I REALLY need this!”:

  • Love, Understanding and Empathy From My Loved Ones (especially when I ‘mess up’)
  • To Quit Having To ‘Prove’ my Fibromyalgia at every turn. I cannot believe this is still happening in this day and age after nearly twenty years!
  •  A LOT Less Headaches
  • Resolution or at least Treatment of my “Gut Issues” that hold me hostage many times
  • Normal Sleep Patterns
  • A better memory
  • Once in a while could the people that only comment on my Face Book when I make a mistake press the “Like” button or make a positive / nice comment. Just once in a while.
  • More Understanding of when I get mixed up; acknowledging the good as well as the bad. I am a human being too! I need love too! I need thought and caring too! Sometimes I feel like a problem and this is a very dangerous thought process for a fibromite. 🙁
  • Normal and Restful Sleep Patterns
  • My disability to finally be out of appeals. Mr Claus, you know the story. 🙁
  • Some much needed rest for Paul
  • Did I mention, a better memory?
  • People that only comment on mistakes or to debate me on Facebook actually occasionally “Like” or have positive feedback….. it is heartbreaking to only get negative.
  • Did I mention more understanding? I think I might have

And of course, The Biggie: LESS PAIN

Oh and this is for society as a whole, and not so much as a personal, but I want to throw it in: more forgiveness and less grudge holding. This is the most unforgiving, “I will debate you until dawn because I am right”, unforgiving society in existence. And it is sad. We all have passions, opinions, voices and ways we approach things. That is the beauty of living in a free society. If we all expect the next person to agree with ‘our train of thought’ then we would all be mindless drones. So Santa, more empathy there too, if you would kind sir.

Letter_to_Santa

Mr Claus I appreciate your time and trouble and sure hope you can make your magic work. I know the list is stacked and the goals set high. And moving others’ hearts is a tall order to comply. If anyone can do it, you are the one who can. Letting others know of our plight and the reality of our walk is a difficult thing to do. I call Fibromyalgia the leprosy of modern times because it has such a cruel stigma, so Santa, please, 1 dash of help for me and a whole bucket load of empathy and understanding on those in our lives that just quite do not get how bad it really is for us. We hide it well. You see, I love them all so much it hurts and I have worked so hard to become a woman I like but fear no one sees it under the layers of the Fibro, spine injuries/disease in my neck and lower back and list that is far too long to take up your time with.

Letter_to_Santa2I will leave it with this song that is one of my favorites. I think it says it all. It may not be about having a chronic illness that is not just pain…. but so much more. But the point is pretty much the same. Thank you Mr Claus and we all love you and the spirit you represent. You still, at age 50, make this girl smile! Merry Christmas! And a Happy New year! Until next time, K.

http://www.youtube.com/watch?v=h1TTnPdZOZI

 

Off The Wall: The Wow’s And The Whoa’s Of Social Media

socialmed1This post I am going “Off The Wall”, to some degree, and posting about our life as we know it now: Social Media. I say to some degree because I suffer with General Anxiety Disorder and anxiety is greatly increased by Fibromyalgia and CFS/ME. My anxiety levels soar when a social media drama unfolds so in a way, I guess I am still ‘hitting the wall’.

I have been wanting to do this post for some time. While I would like to say there was one straw that broke the camel’s proverbial back, I am sad to report that there are too many straws to know exactly which one made “Hump, The Camel” finally fall. I will state this now and repeat it again in a moment and at the end. This is about no one in particular and everyone. Yes, I have used specific examples, but named no specific person. If ‘you’ (when I use the word you, it is always going to be in the general sense) think my story or example is about ‘you’, please read again because everything I cite has happened to me more than once…… everything. No one is called out, no one is labeled and no one is called bad. We all fall into the frenzy of social media madness. So chill. I am just writing a blog post. socialmen2Let’s do this again properly. Before I get started, I am making a disclaimer: This is not about anyone in particular but it is about a whole lot of people together. I am not exempt. If ‘you’ think I am talking about ‘you’, I am not. I am talking about ‘general sorts’ of people that fall into a group. On the other hand, ‘you’ also may want to examine why ‘you’ are having such a personal reaction to a statement I am making that is about ‘general types of issues’. These are things I see as being sad, judgmental, smug, arrogant, hypocritical or otherwise harmful to the flow of a peaceful and respectful co-existence. On top of that, this blog is my little place on the internet to say what I want. If you are upset with me after reading this post, I probably have proven my point. But again, it is about a whole lot of people with no one in particular being singled out, and that would include myself as I have been sucked into this madness too. socialmed3

I will start with the “Wow’s” or good side of social networking because there are good things about it and when used as it should be it is a very effective product of the times we live in.

  • FAMILY AND FRIENDS: We live in the most mobile, movable society in history. Though I call it one of the ‘greatest mistakes of my life’, I myself am a California native residing in Virginia and moved just around the time most homes even knew what the internet was. Remember AOL? Social media, more specifically Facebook allows us to get in touch and keep in touch with family and friends we would either not otherwise keep in touch with or lose touch with altogether. For those who are close or who you do keep in contact with it is also a handy tool. I can text my awesome neighbor just feet away or chat with my amazing friend in Florida anytime, anywhere. If my neighbor and I have plans, we can text each other to set a time or let each other know one of us is running late.
  • MAKING NEW FRIENDS/BONDING WITH OTHERS WHO ARE ‘IN YOUR SHOES’: Facebook groups are fantastic for finding people who understand your ‘thing’, passion or problem. Some of the people I would call my closest friends in the world I met in a Facebook chronic pain group.  I have so many Facebook friends who ‘get it’ when I say I am in a bad flare or I ‘hit the wall’ after only going to run a couple errands. Bonding with people who are ‘where we are at’ in life is paramount in getting through our current situation whether it is a fabulous and wonderful thing such as raising children or a horrible thing such as living with a chronic illness. Before the internet I belonged to a play group and another church-organized group called Mothers Of Pre-Schoolers (MOPS) which was a structured group for Christian Moms to put their kids in the care of other Moms while we heard a lesson from an ‘older’ Mom (her kids were adults) and did a craft. Now these things still exist, the difference is you read about them on Facebook.
  • Expanding Our Horizons: Whether we Facebook, Twitter, Instagram, Flickr, Tumble, YouTube, Etc. Great quotes, lessons, recipes, information and wonderful journeys abound. Want to show off your kids or Grandchildren? Or if you are out and you see a beautiful sunset, the snap of a camera and it is up in an instant.  If you come across an amazing quote you can share. If cooking is your thing, you can share your latest recipe. You can tweet and hashtag your life for everyone to see. In my case, as a chronic pain and chronic fatigue patient, I too can share my blog and get it out into the eyes of fellow chronic patients, as well as hopefully our friends and family who I can only hope are educating themselves on our plight.

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With good, however, comes the bad. There are many “Whoa’s” of Social Media. Things our Parents and Grandparents never would have imagined take place and much of it is just ugly.

  • TROLLS: If you have ever posted anywhere on anything or in any group, we all know what the dreaded troll is. A troll is a person with no life whose greatest pleasure is to bombard groups and just make a sloppy, word attack. They may not even be ‘against’ what they are attacking. They may be neutral or even positive about the subject. However, they get in there and bash, cuss and name call thereby stirring up strife and conflict. People bite. I have ‘fed’ plenty of trolls. It is human to defend your cause. If you see people type “Don’t feed the troll” it means don’t react because a reaction is what they want! troll
  • Pick Your Battles/Attack Mode/Get a life: My therapist is a tough cookie. She is also the most effective therapist I have ever had. One thing she hates is Facebook. Why? Because she knows how easy it is to say cruel and hurtful things with the safety of a monitor between you and your ‘target’.  She also knows that people can, will and do take anything and turn it around to start a confrontation. I literally could say, “It is a beautiful day, the sun is shining, the birds are singing and the air is crisp” and I could offend someone by that upbeat, harmless statement. This is different than a troll, this is a person you ‘know’ to some capacity, turning on you for even one or two words. Trust me, they will use one sentence and go to the mattresses on that one sentence and fight it to the death!  I am not an Angelina Jolie fan. I just am not. I do not need to say why and I make no apologies. However, when she had a elective mastectomy and was setting to have her ovaries removed because of the cancer history and genetic screening she did, I commented on her courage and the difficult decision she made. Someone actually attacked me for ‘commenting on her bravery for a decision other women make everyday’. A debate ensued. My point was this: perhaps she could serve as a model for other women if nothing else, to at least be fervent about yearly screens and be proactive about getting more in depth tests if there is a history of certain cancers in their family. I could list so many times something like this has happened when a celebrity raised awareness to a situation such as this one. The ridiculous things people get upset over is mind boggling. We live in the most overly sensitive, over reactive society in the history of man. I will admit, I too have been offended by things people say and post. I rarely comment and the few times I have, it rarely ends well. Everyone is talking and no one is listening, So many people get wrapped up in the exact wording, take one sentence and beat you over the head with it. Even if you apologize and/or explain, they continue. Why? What good is it doing? I have apologized for the love of God. What do they want, my signature in blood?  I comment much less and sit on my hands much more than I used to. I have even joined groups for things that strike a nerve, so I can vent in the group rather than risk saying something to a friend that may start a debate. I recently had a friend lash out at me for something I cannot even recall. I stood my ground on the issue, and explained. Her response was a very passive aggressive, “Ok, you win Kelli”. There is no win/lose. The person attacking me really needed to learn to pick their battles. I truly feel people are spoiling for a fight at times.
  • POLITICS: Most people have strong political views. Both politics and religion especially have been the underlying cause of wars over centuries gone by. The USA, the country I am so proud to be a citizen of, was founded on freedom. One would think for this reason that we would respect each other and our choice to both vote and worship as we wish. Sadly, I find this to be the farthest thing from the truth. The very thing I taught my children…… we vote, the person with the most votes wins and if it is not the person we voted for, we still respect that elected official because they are, after all, serving us. The quickest way to lose my respect is to politically beat a dead horse. OK, we get it, you don’t like the President, the Speaker, your Senator, etc. However, constant jabs as to what a baboon ‘we have in office’ does what good exactly? Other than making the person that posted it look like a child who did not get their way, it serves no purpose . Why even have the voting system if ‘your’ way is the only way? If that is the case, we should live only under one party and have a Monarchy in which ‘your’ party rules the roost. If ‘my’ opinion is garbage, why should I be allowed to vote? This is one of the two worst things social networking has brought about: making otherwise mature, smart and likable grown men and women resort to the antics of grade school children. In fact we teach our children to have respect for those in office, yet we cannot muster up enough respect to not spew sour grapes for four to eight years? It is ugly! And it is the quickest way to lose my respect. Being transplanted to the south, especially, it has opened my eyes even more. Our forefathers fought a hard battle and many died giving us the right to freedom and the right to vote as to who our elected officials would be. I am glad they are not here now to see the mud slinging, name calling, sick jokes, disrespect and joke made of the voting process because frankly, the way people act now is childish and embarrassing. socialmed5
  • RELIGION: Religion is an extremely personal decision. Among my closest friends I have some are like me, born again Christians (though these days I consider myself to be a Progressive Christian), but I also have Buddhist, Wiccan, Atheist/Agnostic and even a few Jewish friends. My life is diverse and richer from every one of these people. It does not change my stance on Christianity, but I love my friends and honor their right to believe as they choose. I had a very recent occurrence where someone that I thought was a friend… a good friend at that. He messaged me out of the blue and questioned my Christianity. This person ….. who is into the macabre, graves, cemeteries and general creepy places. He also frequents the paranormal group I used to be a member of (but left for two reasons: I approached the leader about an issue with *me* and asked how I could fix it and he went, well, nuts on me and the other reason, they have become very ‘dark’ and are treading into things I want nothing of…. vampire porn, zombies and demon type pictures on their site). He posts there all the time yet claims to have no ‘real interest’. Then he goes off on me about religion because I am a Christian Paranormal investigator? He is running amuck in this dark zombie fest while thumping his hell, fire and brimstone at me? The truth is, I, Paul and numerous close friends feel he may have been spying to see what I was doing and if I was planning any legal action (because the leader of said group mocked my disability in front of other people on more than one occasion). He knew that would be a deal breaker and used it when he was ready to step back.  Religion is either an explosive subject that never ends well or a mutual respect among each other to worship and coexist. I want to add that as of late, I have been having a very difficult time with a variety of things, but not one thing in particular. Out of the blue, I received a package in the mail a few days ago. I had been waiting and waiting and waiting for a $3 money order for a custom greeting card I made that I fear will never be sent. What I got was far more valuable. It was a book about angels. It was from my friend Tina up in Pennsylvania. Tina and I know each other through Facebook and though we have never met in person, I consider her to be one of my most cherished friends. She is Buddhist, but raised Lutheran for about 6 years and then did not go to church until adulthood but in her letter she conveyed that she still believes in God. This book came just when I needed it the most. I love angels and I rely on them often. I was asked to pass the book on when finished and I plan to. THIS is what ‘religion’ is about. We all have to make our call in the world as to which we pick but in my book as long as it is love, light and goodness, I am going to respect that. Tina is one of the kindest, generous people I know. Yet, I have lost many evangelical friends over my stance on gay rights, etc. Religion: unless among the closest of friends for whom you know there will be mutual respect, it is a topic that should be avoided altogether. socialmed7
  • THE UNFORGIVEN: There is no human being on this earth that is perfect. As perfect as some think they are (and believe me, I know a lot of people that think they are perfect), a person of perfection…. in my belief….. only walked this earth just over 2,000 years ago. In a nutshell, we all screw up, each and everyday. Mistakes are mistakes, sin is sin. It is how we handle our mistakes that count. If If I feel I have done nothing wrong, such as commending a celebrity for making a very difficult decision…. a celebrity I otherwise do not particularly like……I will stand my ground. Choosing to have your breasts and ovaries removed when you are healthy is a bold step. I don’t care who you are. However, if I truly make a mistake, I will own it and apologize and so did one of my closest friends when I recently found myself in the middle of something I did not anticipate. I had an incident where a friend of mine said something to another friend that was inappropriate. I was super stressed to begin with (going back ‘on the wall’ for a moment, and very sleep deprived and in the middle of the worst flare I have ever had so my brain was not at optimum thinking levels). Not wanting to make it a bigger drama than it was, I privately made it clear to my friend that I was not at all happy about what she said while trying to lay low on Facebook until things got sorted. Within an hour an apology was issued. A sincere apology. She still tells me from time to time how bad she feels for the things she said and she herself had had a rough day. This friend and I are sisters by ‘other mothers’. The person that made the comment and whom my friend lashed out at (a knee jerk reaction of protection), I have known  for years and have even helped her family in times of need. That was my pleasure because that is what friends do. I was unfriended and even worse? My husband Paul who had NO part in this situation was unfriended too! My husband is a good and kind person. He did nothing, yet he gets the Facebook guillotine? This is the freshest story I have….. but we have all been victim of the dreaded ‘unfriend/block’ button. It is sad that so many people grab a grudge and hold it like a life raft in the middle of the ocean. It is sad we teach our kids to apologize while we do not accept a true, sincere apology. However the saddest part is when you think you are a real friend to someone and you find out you are simply, a ‘throw away friend’. I think this above and beyond anything is the worst demon of social networking. Drama. It is sad and it is ugly. Socialmed8
  • THE SILENT PARTNER: We all have that friend or friends on Facebook or other social media that we post on their profile, we like their pictures and jokes, their recipes, etc. In fact in many cases, we are their biggest cheerleaders. We post… not too much, but enough to let them know that they are important to us. We certainly are not in stalker mode, but they are our family or friend and they mean something to us. Do we embarrass them? Are they trying to tell us something?   It is deeply hurtful, at times, for the non-silent partner who finds that funny picture to brighten a day…. finds that one special thing we are certain they will like. They like the exact same points that you make on their other friends’ pages and are even huge cheerleaders for other friends. They have posted rebuttals to your posts when they don’t like something you have to say. If it strikes a chord, they will chime out.  So why no positive posts on your profile? Why only speak up if something strikes a hair? Certainly not every single move you make is adverse to their thought process and in fact you know it is not because you find cute little things to brighten their day from time to time, with no response.  You may have even gone an extra step…. helping to deflect attention from yourself (such as not showing up on pages of people that it might be awkward for them), yet nothing. It is hurtful at times. It is hard to try to constantly wonder why the most innocent of sentiments go unnoticed. Perhaps once in a golden moon, when unicorns fly and The Northern Lights are visible on the equator, they may like something on your profile. This one sided posting is very distressing and very mysterious. Heart-break
  • MY WAY OR NO WAY: Having passion for something is great! From child rearing to the type of food we eat to the challenges we face on a day to day basis, we all have ‘our thing’. The problem starts when people become so consumed that they cannot see the forest for the trees. Before I proceed, I want to make this statement and I want all Moms of young children to read it twice: I do not know or know of any BAD Moms. Parenting is not a ‘one size fits all’ skill. Some Moms breastfeed and some bottle feed. Some sleep with their babies in bed, some choose to put their baby in a crib. Some Moms have to go back to work after a few weeks and some  stay at home full time. Some Moms home-school, other Moms public or private school. Some Moms vaccinate, some don’t. I could go on, but you get the drift. The problem starts when the “Mommy Wars” start and Moms who choose a way different to ‘your’ way are told they are ‘bad’ Moms. We are raising children here, not landing on Normandy. I want to quote something from another blog I read not too long ago when the writer was told off, in public, because he and his wife give their twins pacifiers: Many people — mostly parents — seem to have absurdly intense opinions about every single solitary aspect of parenting. They have these dogmas that they attach to the most unremarkable minutia of everyday parenthood and they will defend these orthodoxies ruthlessly. I don’t get it. These zealots get specific — I mean, REALLY specific — about how they think all human beings, everywhere, no matter what, should raise their own kid/kids. http://themattwalshblog.com/2013/06/27/the-great-controversy-of-our-time/
    Who cares? It is not their kid getting a pacifier. Frankly how dare someone give him a lecture for that. It is the business of he and his wife. Full stop. When my kids were growing up and I was in two different Mom groups, we all did things differently. No one judged anyone on the way anyone else was raising their kids. We were a bunch of women with different backgrounds who got along great, as did our diverse children. Also, not every single solitary moment has to be a Kodak moment. Sometimes let the fun just roll. Having 50 pictures a week to put up on Facebook is a lot of work. Yes, pictures are great, but so is spontaneous fun. I have to boast about my oldest daughter who seems to have found such a happy medium. She posts pictures of the most perfect Grandbabies on earth. But she does not post a full on album everyday. It is just enough. Paul and I take a lot of pictures at times because 1. It is one of Paul’s passions and 2. With schedules, etc, we generally only see the kids about once a month (for which I am very thankful for!). 🙂  We only put maybe 1/2 the pics we take at a time to boot! But you see, we get it! We know ‘you’ are a great Mom and so is she, and her, and that lady and the one over there. There are very few ‘not such good Moms’ out there. So relax and enjoy your babies. I took a lot of (film) pictures when my kids were growing up but some of the best memories I have of my kids childhood are the ones that just….. happened.nopicsjustmemories As far as other subjects whatever it is…. and I myself really try to strike a balance with fibromyalgia awareness, it is all about moderation. The problem is, I don’t think anyone (who is ‘well’)  is really interested in learning about fibromyalgia. After all, I am just the ‘grumpy sick girl’ 🙁 That is why I post, almost daily, a fibro awareness statement. My goal is that ‘well’ people will care enough to learn about an illness that plagues approximately 400 million people worldwide.

    “Caring about the welfare of children and shaming parents are mutually exclusive endeavors.” ― Brené Brown

    “Caring about the welfare of children and shaming parents are mutually exclusive endeavors.”
    ― Brené Brown

    I cannot think of a better time to be in existence than today. I am blessed to have gone from remembering the moon walk like it was yesterday, to an age where we can talk to anyone, anywhere via social media, e-mail, Twitter, Skype, etc. in seconds. The social media revolution has brought many good things with it however, with the good there is the bad. Amid the convenience of speaking to family and friends, speaking out for your cause, learning about anything while going down Wikipedia ‘rabbit holes’ and watching endless hours of YouTube, there are things that sting like poison oak. The instant gratification of the send button sometimes causes us to say the wrong thing. When we apologize we find out who our real friends are and who they are not when that person decides that they are going to block us out of their life for making a mistake. We tiptoe around politics while watching people who we used to see as near perfection beat the horse until it is not just dead, but a carcass decaying and down to the bone. We sometimes get that person who infringes on our spiritual space and tries to ‘save’ us when they are committing one of the biggest sins in Christianity…….. judgement. We have people judge and not like us before they even meet the real ‘us’. I had this happen a few years ago with a family member by marriage. She decided (cultural differences? I did not respond to something that someone did ‘for us’ the way ‘she thought I should’…. though the person who completed the tasks was going to complete that task with or without us coming…. Who knows?) This much I do know: it was apparent from about 2 minutes off the airplane that I was being ‘tolerated’ by this person who eventually unfriended me on Facebook. I don’t really think she knows the full potential of the damage that was done by her snobbery. But it all started with social media and someone not getting that sometimes people are not ‘the same as we are’.  We have people in our lives that see us and appear to love us in the real world but virtually ignore us on Social Media even when we send them something that is cool, harmless, neutral and even something that they are really passionate about. Then there is the ‘my way or no way’. How did we ever get by in this world before the dawn of the raw food diet, pacifier vs no pacifier, helicopter parenting vs letting kids learn from their own freedom and growth. Frankly, the only thing I wanted from my parents was love and for my Mom to quit drinking. Even the divorce, though hard, was manageable. I was born in a hospital, my Mother had an epidural and though she tried to breastfeed, I ended up on the bottle. And until the age of 10 they were my “Wonder Years”. Nearly perfect. I was bright, happy and well adjusted  What caused my biggest bump in life? It was my Mother’s alcoholism that was the single most destructive thing to my existence and who I am today. And I am still trying to deal with it. So my view is this: Social Media is great! However, it is like driving a car. You have to be careful, drive with care, watch for road signs (others’ feelings, others’ hearts…. hearts are breakable, after all), storms, snow, ice and all kinds of things that driving out in the world can hurl at you. Some people are good drivers while others are really lousy drivers. Some fall somewhere in between. A good analogy? Maybe not, but it is the best one I have. As I finish this I want to again emphasize, NO NAMES were used, no PERSON was singled out and ALL these things have happened and most with much more than just one person. If you are ‘upset’ after reading this, it is not my fault. I am not saying anything anyone else has not said or thought. I am just writing about it….. on a blog…. which may or may not be considered social media. Until next time when we go back to “hitting the wall” and talk about the strain on caregivers, K.

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Something Exciting!

Fibro Care & Fibro Share

Have you ever wanted to send a note of encouragement to a fellow Fibromite? Have you ever wanted to ‘gently’ teach someone you care about …. family, friend, co-worker, etc about Fibromyalgia. Well, I may have just the answer. I make homemade greeting cards and a while back I came up with the concept of doing just that very thing with my “Fibro Care & Fibro Share:.

Tell a FIbromite you care with a beautiful, handmade, custom card, that includes a purple ribbon. The inside is blank for you to write an uplifting message.

Tell a Fibromite you care with a beautiful “Care” card, handmade, that includes a purple ribbon. The inside is blank for you to write an uplifting message.

If you want to enlighten someone about our plight, send a card that “Shares” a nugget about our daily struggle. Each “Share” card is similar to the “Care” care; over all purple theme and most have a purple ribbon or butterfly and each will share a “Fibro Fact” on the inside. Visit my site for more details on this cutting edge, exciting way to say, “I care” or “I want to share”. Thank you! K.

https://www.facebook.com/media/set/?set=a.541598649229608.1073741829.370229939699814&type=3

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“Share” a Fibro Fact with a family member or friend so they can learn about your condition.

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To Whom It May Concern And Special Post : A Story Of Hope And Triumph!

openletter_blog1Please be aware at the end of my post, I have a video about a story that touched my heart. I was contacted by Cameron Von St James regarding his wife Heather and her journey with a very serious and potentially fatal cancer. I will have a link to a short video. Because my goal is to raise awareness about Fibromyalgia and Chronic Fatigue Syndrome, I feel it is my duty to help other warriors on the battleground of illness to make their voices heard. This story is beyond amazing and so full of hope. So please watch the video both to raise awareness and to learn about this cancer that most of us know little about. Trust me, it will leave you feeling very uplifted and hopeful!

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As for my subject on this blog post, I decided to write an open letter. I had seen this done before in various places and the timing is just right. So please, read with an open mind and a caring heart!

To Whom It May Concern,

My name is Kelli Glover and I want to tell you a little about my life and the challenges I face twenty four hours a day, seven days a week with an invisible and very painful illness. In addition to that I have two areas of my spine that have damage, the lower lumbar is moderate (as far as I know from the report, I may find out it is more severe when I talk to my Doctor about it at my appointment). The cervical spine is critical. These are known as ‘tangible’ issues which means they can be seen on tests, MRI, CAT and other scans. These two issues are not part of my Fibromyalgia, they are separate. I am not lazy, I do not enjoy being unemployed, I never asked for the hand I was dealt and God knows this is not how I envisioned my life. I would like to clear up misconceptions regarding those of us disabled by this unforgiving monster.

If you think I enjoy being disabled and being able to stay at home all the time, you are extremely misinformed. There is nothing fun about not being about to get out very much because you are hurting 24 hours a day, 7 days a week and having an array of other issues: Irritable Bowel Syndrome, Sensory Overload, Migraines (at least five a month), Aphasia, Brain Fog, etc. There is nothing fun about feeling like you are 90 years old upon rising every single morning and walking around the house as if you are walking bare-footed on broken glass. There is nothing whimsical about having a condition that is thought by many to be either exaggerated or by some, not even a real medical condition. This is not the life I had planned for, but this is the hand I have been dealt.

openletter_blog5When I was first diagnosed nearly twenty years ago, many of those that loved me the most either thought I was ‘attention seeking’, a hypochondriac or they just simply did not ‘believe’ Fibromyalgia was a real disorder. Ironically, some of these people were ‘frequent sick people’ with numerous Doctors and numerous health issues of their own. I would have never assumed any of their issues were fake. Even if I felt they exaggerated, I would have never gossiped about their plight. This is my past. Today, I either refuse to be around toxic people or limit my exposure to the bare minimum. If someone does not think the pain I deal with each and every minute of every day is real or has to play the ‘one up’ game, they are at least misguided and at worst, just plain cruel. I know for a fact people have talked behind my back. One thing about talking behind someone’s back: whether it is family, ‘friends’ or co-workers, it always gets back to the person. Always. For those who talk about how this ‘condition that does not exist’, I will be sure and pass that along to the estimated 400 million people worldwide that have Fibromyalgia. The muscle knots in my neck and shoulders can not just be felt but can be seen by both Doctors and my husband Paul. Though I have known for well over a year that my neck is in execrable shape, I have recently found out my lower back is not too far behind and had issues of its own. Having taken six falls inside two months, my Doctor wanted to pinpoint what he feels is a trapped nerve, and the MRI confirmed a condition I am not prepared to disclose at this time, pending discussion of my results (and the protocol / treatment plan for the condition). To be honest, as well read as I am on medical issues regarding chronic pain, I have never heard of the primary issue with my back though arthritis, a disc bulge and Lumbar Degenerative Disc Disease to boot. So if you think it is fun to be disabled, I will gladly trade seats with anyone who is functional and even stressed out at their job!

Openletter_blog7 I have always been an active and busy person. I have never been a ‘couch potato’ and though everyone deserves a lazy day here and there, I do not enjoy days on end of being stuck in the house. I worked at two call centers and did my job well. My reviews were always excellent and my customer compliments were always among the highest of any of the team members. When I worked for Liberty Medical Center, my supervisor received a hand written letter from the wife of a US Congressman on the ‘exceptional customer service’ I provided. Sure, there was stress and it was a bed of gossip (I tried to keep my head below the line of fire) but as for my job, I loved helping people.

It is lonely being home and cut off from the world all the time. On good days I am doing good to shower, do a few light chores and fix dinner. What most people see as small daily tasks, I see as triumphs. On bad days, I shower and do the barest of minimum. I will say this: I only turn the TV on one hour a day and I make no apologies because if I were well and able to work, I would DVR the show and watch it in the evening or on the weekends. I think the most horrendous, evil and horrible thing about this unforgiving condition is the way people forget you exist.

              Pain and all the other 'add on' conditions only tell part of the story of Fibromyalgia and Chronic Fatigue Syndrome. The big 'elephant in the room' that rarely gets a mention is the way you simply get totally and completely forgotten.

Pain and all the other ‘add on’ conditions only tell part of the story of Fibromyalgia and Chronic Fatigue Syndrome. The one thing that rarely gets a mention is the way you simply get totally and completely forgotten.

 I am having issues with my religion right now. I stated religion, not faith. I will never waver on my faith. I have a personal relationship with Jesus Christ first and foremost before religion. However as far as religion…. meaning the church I go to welcomes Paul to volunteer on camera while working two and at times three jobs, the fact I am rarely there is not noticed. I am rarely asked about. I am not on the prayer list. If ever I need to be on a prayer list it is now. I have basically fallen off their radar. We were told when we joined that one of the best things about this ‘family’ is that if you are not in church for a few weeks, you will be checked on. No one has checked on me recently. Why? I am a member. People know I have a chronic illness. People know it has taken a really difficult turn. This is not a ‘pity party’, however I would be lying if I said I was not hurt to some extent. This is my church family, after all.  Having Fibro makes you the ‘red headed step child’ of many things. I often say people with Fibromyalgia are the modern day lepers. We have experienced everything from being left out of immediate family (big/decade) birthdays (things always slip out, and it does not get past me, and it is extremely hurtful to be left out) to friends that maybe get to the area every 3-5 years coming to town and not letting you know. Who wants to be around Kelli? She is defective.  If you are not forgotten, you are, at best, tolerated. I don’t know if people think you are contagious (you are not). I don’t know if people just do not like to be around those who are not ‘happy, happy, happy’ all the time. Being over the top happy is not normal anymore then being super depressed. While I am pretty depressed about all this, I put on one great game face and act. No one would ever really know. I am cheerful and upbeat when we do go to social events. I could be having a level 9 pain day and trust me, I would be “Best actress” Oscar material. I don’t sit and mope at gatherings. In fact that is the farthest from the truth.  I laugh and socialize. If I am feeling super bad, at worst, I might just sit and be a bit quiet.  It is funny how family and friends will flock around someone with a life threatening illness or someone who has been in a horrible accident but if you have Fibromyalgia, a condition in which the suicide rate is 10 times the average percentage, you are shunned like last week’s dinner. I feel like I am an embarrassment. It hurts to the core! Yet I am the first one to help, even if I don’t feel like helping. When friends have been in accidents, had babies, etc, we have been there. Yet when the tables are turned? That is one reason I have not had my neck surgery. I will literally be 100% immobile for a few weeks. My neck has to be reconstructed. Paul has enough on him. Taking care of my every need is more than he can handle.   Openletter_blog8Then there is anxiety and its fraternal twin depression. These two alone can be overwhelming, but just ‘dog pile’ them on all the other things and tell me, if you hurt all the time, every day and had stomach issues; nausea, IBS, migraines, sensory overload, insomnia followed by sleeping for hours on end (crash and burns / super fatigue episodes) and if your muscles burned…. and I mean burned and turned into spasms that radiated pain down your arms and legs like a charlie horse cramp, I believe you would be anxious and depressed. To whom it may concern, when I wake up in the morning I ache to the bone.If I am lucky I was able to sleep flat in bed 6 hours and if I had a bad night I maybe got one hour of bed sleep. I watch the person I love work 50+ hours a week, still do 40%+ of the house work, cook at least 3 nights a week, do the dishes nearly every night and give you a much needed massage every night, without complaint. And this is fun? Oh and to add one more thing: we have not had a vacation in eight years. Eight years. The one and only vacation we have had since getting married was our honeymoon. Again, I am not complaining or asking for pity, I am just trying to give you a view from the inside out.

So for those who think I am lucky not to have to work. For those who make assumptions. For those who hurt from the natural aging process….. bear in mind, I will be having these aches and pains on top of all this and I don’t even let myself go there because it is such a dark and scary place, it consumes me and frightens me beyond words. For those who think my brain fog is because I must be on ‘powerful medications’, I am actually less medicated now than I have ever been. Of the medications I do take, of this I can assure: none of them make me euphoric or doped up. Most of all for those I love and care about whether family, friend or even online buddy, please remember: I am all but house bound. I am typing these words about about 5 30 AM after waking up at 4 AM with a burning neck and a headache. I am so tired, but sleep shuns me because the pain and anxiety I feel trump the fatigue. openletter_blog3I am hopeful yet disappointed at the same time. I am filled with hope that continued progress will be made with Fibro. However, with the condition of my spine, I still have two giant mountains to climb. Having one spine issue is bad….. having two? It is overwhelming. Impossible. Spine surgery is at best a 50/50 success. Two spine surgeries? I won’t even comment.  Nonetheless, I am blessed. I have a husband that there are no words for. He understands and does more than anyone could or should have to do. My oldest daughter is such a wonderful Mother to my Grandchildren and I honestly, truly think, it is my Grandchildren that really keep me going. She blesses me by being able to see the kids often. It lifts my spirits beyond words. It is the desire to see them grow up and see the people they are going to be and the fervent intent that they know me for who I am and not for what they hear from other people. Also, my youngest daughter, who I miss so, so very much as she is away at college. She has always been so loving and compassionate. She is the most focused and driven person I have ever been blessed to know as well as amazing beyond words.

So do you still think I am ‘lucky’? Do you want to live in pain all the time? Do you want to be the subject of endless ‘behind your back’  gossip? Do you want to have constant gut problems? Do you want assumptions and judgements made by people? I *will* tell you this: going through a chronic illness lets you know who your real friends are. It lets you know if it is a true friendship or a ‘friendship of convenience’ (aka: how it benefits the other person vs. how you are doing and when there is the least bit of heat in the kitchen you get dropped like a hot potato).  Do you want to deal with people calling you ‘crazy’ because you are anxious? (Note: your therapist calls you a walking ‘miracle’ given what you have endured in your life) Do you want to be home days on end? Do you want to be forgotten and left out of things? I am not the only Fibromite to have this happen: this is a very common event among not just those with Fibro, but all chronic illnesses that are not life threatening. Do you want to be an embarrassment? If you are healthy and have normal stamina and energy and just think your life sucks because you have to go to work, I will gladly trade you. As Bob Marley said, “Who are you to judge the life I live? I know I’m not perfect
-and I don’t live to be-
but before you start pointing fingers…
make sure you hands are clean!”

If you watch the show “Nashville” then you know the story of Juliette and her Mother who is a on again/off again alcoholic/addict. Most people know that my Mom had been an alcoholic from about the time I was 10 years old. My Mom got mean when she was liquored up so this story line really hit close to home. I don’t want to over shadow my guest bloggers video, so I will not link any scenes from this on this post, however, I do want to make mention of something. Juliette’s Mother Jolene finally got clean. Juliette took her in but kept a ‘wall’ up. She was downright hateful to her at times. Jolene did everything she could under the sun to win back Juliette’s love but it was never quite enough. Finally she took the fall for a ‘sex tape scandal’ and killed the person committing blackmail as well as ending her own life. For several days Juliette thought her Mom had ‘gotten high and had a thing’ with this man that had blackmailed her. However, Juliette got a letter in the mail from her Mom explaining everything. Jolene did not want Juliette’s name to be tarnished and she took the heat including giving her life up to make it look like it was all ‘on her’ (she destroyed the computer disc…. evidence of a sex tape gone forever). Though the storyline is a big 1985ish (who cares about sex tapes anymore, really?), the point was, it took the death of her Mother to finally bring down that wall. It should have never come to that. Things are just too unforgiving and complicated today. We could all use a bit less arrogance and pride and a whole lot more compassion and understanding!

I did not choose this path, but I know what is and is not real. I know who is and is not sincere and that is perhaps why so many fellow chronic pain/illness warriors I have met online are like fellow soldiers in a battle that only ‘we understand’. While we can never fully understand something we are not going through, we can certainly have empathy. This is a very bumpy road, we with chronic pain and illness travel. I know I speak for my fellow warriors when I say, we do not want pity, we just want to be accepted for who we are and remembered …. To Whom It May Concern, Until next time, K.

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Please refocus your awareness to this amazing story about Heather Von St James. Heather defied the odds. When Cameron and Heather Von St James welcomed their baby girl Lily into the world, little did they know that within a few months, Heather would literally be fighting for her life. Heather was diagnosed with malignant pleural mesothelioma when Lily was just 3 1/2 months old. Heather was only 36 years old at this time. Most with this diagnosis only live about 15 months.This short video packs a punch of determination, courage, hope and triumph!  Thank you Cameron Von St. James for contacting me and allowing me to share this amazing story! God Bless you, Heather and Lily….. May God continue to watch over all of you and bless you all with health, happiness and love!

http://www.mesothelioma.com/heather/#.UlVc31MUlL4

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