PHOTOGRAPH BY PAUL D. GLOVER: ALL RIGHTS RESERVED BY PAUL D. GLOVER PHOTOGRAPHY

Yes! “The Sensory Overload” AKA, “The Sunburned Senses Of Fibromyalgia” is coming soon! I am busy researching and preparing for this exciting, upcoming post. This particular subject is cutting edge and very new ground in the world of fibromyalgia. I am on a time crunch finishing my Certified Paranormal Investigation course and need to finish it in the next three days, so I am taking this opportunity to share a poem I wrote about two years ago. This poem is very close to my heart and is very personal…. and powerful.

PHOTOGRAPH BY PAUL D. GLOVER: ALL RIGHTS RESERVED BY PAUL D. GLOVER PHOTOGRAPHY

One of the most difficult things fibro patients can face is insomnia. Hopefully the words of this poem can tell the story in a way

The Early Morning Hours Of The Night

By: Kelli Coleman Glover

It’s so quiet in the early morning hours of the night
As I sit with my pain and worry in the dark, waiting for the light
They say stay positive and it will be alright
But they who say that, know not my plight
So I sit, in the early morning hours of the night; waiting, worrying, wondering; will everything be alright?

The smallest sounds are so amplified during these minutes of the night
The hum of a machine, the rhythmic breathing of another human being
Every small sound, made so big; every single worry set out before me
Every thought, every fear, every notion; nothing is made clear
In these early morning hours of the night, as I sit in the dark, waiting for the light
They say stay positive and it will be alright
But they who say this know not my plight
So I sit, in the early morning hours of the night: waiting, worrying, wondering; will everything be alright?

I do not apologize, for I have a right, to feel whether others think it is wrong or right
As I sit in the early morning hours of the night; waiting; worrying; wondering; will everything be alright?
They say stay positive and it will be alright
But they who say this know not my plight
Some judge harsh, for it is true, these that judge like this have never known true doom
They judge every word you say, every thing you do; never knowing you or the intention of your ways
They make themselves the victims, the ‘whoa is me’; they have never known real pain and I truly hope for them it continues to be
Do not judge my plight, for you haven’t a clue
You do not know what real pain is; but believe me, I do
In the early morning hours of the night
I sit and wait, will it be alright?
I walk humped over, the Doctor calls it a gait
It is noted on my files, at least it is official and not just hearsay
In the early morning hours of the night
It is so quiet, will it ever be alright?
I limp around in pain, as quiet as can be, waiting for the darkest hour
For the dawn follows closely
The light of day and I can move about
I will not be alone, but my pain will still shout! Anger! Throb! Burn! Knotted up! Pound! Pound!

In the early morning hours of the night
When it hurts so badly, I cannot bring slumber to my eyes
I sit in the room, all alone in my pain
While others sleep, oblivious to my strain
Do they not know the horror of my life
The horror that I face, night after night
For sleep rarely comes but pain comes always
Will I ever sleep again? Oh wait, yes, I will sleep when I am dead

In the early morning hours of the night.
I sit alone, my pain and I
I know there are others, their stories like mine
They do not judge me, they know my plight
In the early morning hours of the night
As the tears roll down, I type and type.
Chronic pain is a torture, horrendous to bare
Remember next time you meet someone, somewhere
who is at mercy to this cross that we bear
In the early morning hours of night
I sit alone; alone with my plight’
Pain is strong, the night is long
No end in sight, so I will try to be strong.

Until next time: K.

PHOTOGRAPH BY: PAUL D. GLOVER : ALL RIGHTS RESERVED BY PAUL D. GLOVER PHOTOGRAPHY

Nearly a decade ago, while my husband and I were engaged, he was sent an e mail saying I would be costly and run up endless dollars of Doctors bills because of all my health challenges. He was warned  I was an ‘expensive undertaking’ because I always had appointments and was on a number of drugs. Of course my drugs are really medications prescribed to me by my various Doctors of Medicine. They are needed for my body to properly function and stay as healthy and pain free as possible. Would the author of the e-mail rather have me wither away and die? Perhaps. However, I have no intention of going anywhere and the ‘who and reason’ behind that very hateful e-mail are not important. As a writer with the highest integrity, it is not relevant to say who wrote my husband that e-mail or how I knew the person who wrote it. Who it was is of no importance….. how it relates to this post is what matters.

My husband loves me. I sometimes do not understand why. I am costly. I am high maintenance…. not in material  possessions, still, in Doctors bills, scans, surgeries both past and pending and medications. My husband entered in, fully aware. What the person that wrote my husband that e-mail did not step ‘outside the box’ and realize was, the vows say, ‘in sickness and in health’

.

Fast forward to just a few weeks ago. Someone who is now, sadly, a former friend, insisted that one of my examples from my last post…..of people that tell me they have pain but have no choice but to  ‘push through it’….. was referring to her? Excuse me? I assured over and over that  this simply was not the case. I let her know I had twenty years of experience to draw on and of all the people I have dealt with over twenty years, she did not once enter my mind. A lot of other things were said….. things I will not mention here because as I told her, I am a writer with probity. I am also a person with integrity.  I asked for an example but she refused until finally, upon several requests,  she pointed to a vague paragraph (above mentioned). I tried and tried to explain to her, even swearing to the Lord above that did not once creep into my mind (really, why did it have to be about her?…. it simply was not ). I crossed a point where it did not matter if she knew the ‘truth’ or not. I told her still, she was simply not the person referenced and in fact there was not one certain person in mind but rather a number of people. She was not one of them. It was a lost cause and honestly I think a cop out.  The bottom line is this: for us….. people with fibro and chronic pain…… friends either stick by our side through thick and thin (like our wedding vows in sickness and in health), or they scatter like mice on a sinking ship. She has a lot of stress in her life and I understand and respect that, but she stated that the sadness of the subject matter was more than she could take. I do not accept that. Again….. if a friend is to get, God forbid, a terrible disease such as cancer, is it just too much sadness? Unfortunately, in many cases, yes. I have seen this happen too. I have seen people left high and dry by friends and even family with every condition or disease ranging from fibromyalgia to something as serious as cancer. When I was twelve years old, I recall a young man who was a neighbor of mine getting terminal cancer. His parents lived across the street from me and his baby sister and I were good friends. He moved back in with his parents his last few months on earth. He was only in his early twenties. As sad as this is, his wife left him when she found out he was dying. Some people cannot take watching others hurt. While I certainly try to stay as upbeat, informative and as much of a crusader as possible, the truth is not always positive and happy. The truth, at times, hurts. The truth, at times, is painful, soul-crushing and lonely. I am here to try to maintain a balance……. keep things upbeat but also let my sisters and brothers in pain know: it is OK to be down and feel alone when you hurt twenty four hours a day, seven days a week. My sisters and brothers in pain: you are not alone!

Fibromyalgia is a lonely condition. There is a group on Facebook Called, “Stop Whining Fibromyalgia is A Joke”…. I hate even giving it space here, but please report this group as often as you can as “Should not be on Facebook” followed by, “Hate speech against a group with a disability”. If you need to, join, “Close Down Stop Whining Fibromyalgia Is A Joke”  on Facebook……. which has more followers than the troll page it is trying to get stopped. Free speech is one thing; hate speech is another. For that is exactly what it is. Do you want to know what the owner really is? He is a hypo-therapist trying to get clients! He is going to hypnotize that pain away. And do not try and reason with the man or he will call you ‘dumb ass’ and ‘moron’ and block you ….. for a day. So mature! Would really trust him putting me in an altered state of consciousness? I don’t think so! My husband Paul…. who is extremely refined and restrained tried writing a very mature and educated post. The post got deleted and Paul got ‘banned’. He simply ‘questioned’ the way he approached getting business and ‘poof’ he was gone.  There is no reasoning with hateful trolls. Anyone that would be so cruel does not deserve any sort of credibility. I have no problem with anyone trying to promote a business. Be that as it may, why would someone try and and promote it from such a hateful stance? Imagine if you inserted “Stop Whining Cancer is a Joke” or  “Stop Whining Autism is a Joke”. Do I have your attention? I hope so because both of those issues fall very close to my heart and I would take great issue if that same person left fibro out of it and did the same thing with either one of those subjects. Somehow,  because it is fibromyalgia, it gets swept under the rug. We are the ‘negative’ ones. No, we are warriors. Yet so many of us with this condition are left lonely…. feeling as if ‘we have done something wrong‘. Some of the bravest and strongest people I know are people with chronic pain. I have a friend in Canada that I will call “E”. “E” is amazing! She has made hero in my book…. a very difficult thing to achieve. “E” is taking on the Canadian Government! Because I respect her privacy, I will not elaborate, but I just have to say she is beautiful, smart, driven and one of the strongest people I know. She is not a whiner or a ‘negative nellie’ in any way, shape or form! Chronic pain survivors are strong…. not weak and ‘sad’.

My friends with fibromyalgia, you have done nothing wrong! Remember, depression is one of the most common (of many) side-effects of fibro so already you have one thing stacked against you. Also bear in mind, approximately 5 million Americans ages 18 and older have this condition so as alone as we can feel, we are not alone! Reach out to others. I am a member of various groups via Facebook and, as I have mentioned in the past, have made numerous friends all over the world! I would not trade these friendships and the bonds I have formed for anything. I cannot count the times I have had someone to ‘catch me’ at 2 AM when I am unable to sleep because of pain.  As sad as this sounds, people that do not have fibro or do not have a loved one with fibro in many cases maintain the attitude of that man who runs that Facebook page, ‘you hurt, so just shut up and live with it!’. I have said this many times: Fibromyalgia is 50% pain and 50% so much more. It is not just pain. If it were just pain, I think I could almost deal with it! However, I am not saying people that do not have fibro or have someone close to them with chronic pain are incapable of being sensitive to the walk we walk. I have met many sympathetic to our plight and many who have stopped to talk to me for several minutes to soak in as much information as they can. “What is that? I have heard of that?” to be followed by, “You poor thing” or “Bless your heart” to which I reply, “Thank you! But don’t feel bad for me. I have accepted this. Now I just try to educate and raise awareness. I also hold out hope for a cure or a really good treatment.”

I cannot let this go by without mentioning a few who have been with me through the long run. “N” who I would classify as my best girl friend. We are polar opposite when it comes to politics, but, we respect each others rights to have our own opinions. Isn’t that why we have a Constitution and live in the Land of the Free? We have these rights so we can each have an opinion. “N” and I respect this about each other and that is why our friendship works so beautifully. The same can be said for “S” a friend literally since age three and separated by 2,500 miles. We have many beliefs (such as religion) that are spot on, but politically are polar opposite. We have always steered clear of this subject. Both of these friends have stood by my side……. in sickness, health and everything in between. That is the foundation for which a real, true friendship is built on. If it is ‘too sad’  then there was never a friendship at all. If I am too costly because of my health as was stated in the e mails to my husband a decade ago, why not just execute me? If sick people are considered, to this person, to be such a burden, well maybe movies about getting rid of  people that are no longer considered ‘valuable’ or are over a certain age are a little too close to home. Two examples would be “Logans Run”  http://en.wikipedia.org/wiki/Logan%27s_Run and “Soylent Green” http://en.wikipedia.org/wiki/Soylent_Green

The bottom line is simple. I am who I am. I am far from perfect but I have a good heart. I am passionate about writing and I am passionate about fibromyalgia awareness. I make good use of this hand I have been dealt.  This beast has robbed me of my quality of life. I am going to do the best I can do to be as productive as I can within the very limited confines that my body allows. Rather than zoning out in the wasteland of daytime TV, I choose to keep my mind…… muddled in brain-fog…… as active as possible. I choose to educate, inform and comfort. My goal is not to be a ‘downer’ or start a petty argument about something that someone insists is ‘about them’ when it just simply is not the case. Not to burst anyone’s proverbial bubble, but the people I am concerned with when I write about life with fibromyalgia are people with fibromyalgia and their loved ones. I am also here to educated anyone who in simply interested in this never-ending, never-ceasing cycle of pain, emotional upheaval and the overall assault it plays on ones body. I know I am helping people. That is what is important. For the people that insist life has to be a constant ‘positive party‘, I make no apologies, because I am writing about the reality that is fibromyalgia.  Additionally, life is not always ‘happy, happy!‘. You do not have to like my writing. I will, on the other hand, not have my integrity questioned. My integrity is front and center with every word I type. Most of all, my Lord and Savior Jesus Christ is with me every step of the way. For that, I am truly blessed. Until next time, K.

A perfect song…. for all the lonely people….. may your days be full of comfort ,friendship and most of all……unconditional acceptance!

http://www.youtube.com/watch?v=k9Itt02QOO0

Just a few days after writing my post explaining that there is, indeed, an art to having fibromyalgia, I found this picture:

Coincidence? Fate? Kismet? All of those put together? Perhaps God led me to the picture. Either way, it validated the very concept I came up with on my own; you can refine the art to living with a painful, chronic and often disabling condition. When mastering any art, you will have trial and error and a lot of experimentation. People will criticize. Forget people that have nothing better to do than trash talk those whose walk they will hopefully never have to experience. I do hope and pray, nonetheless, these mean, heartless people learn the art of empathy and compassion. To read “The Art Of Fibromyalgia”…. the post I am referring to….. just continue reading. Until next time. K.

I have written about the balancing act that comes with fibromyalgia and chronic pain. There is also an art to fibromyalgia. The great composers such as Bach, Beethoven, Mozart, Handel and Chopin all had one thing in common; their never-ending quest for excellence and perfection. The great impressionists also had the same qualities. Dot by dot, stroke by stroke, each painting was not a half baked undertaking. All their great works were completed after much preparation, study, trial and error, experimentation and ability to learn what works and what does not work. As ‘outside the box’ as it sounds, there truly is an art to master living with fibromyalgia.

MY HUSBAND IS AN AMAZING ARTIST OF BLACK AND WHITE FILM PHOTOGRAPHY. HE STARTED OUT WITH A FILM CAMERA THAT WAS GIVEN TO HIM AND STUMBLED INTO THE WORLD OF BLACK AND WHITE. WHILE ALWAYS HAVING A ‘GIFT’, HIS TALENT HAS GOTTEN MORE AMAZING AS TIME GOES ON. ALL ARTIST ARE SIMILAR. THE MORE WE PRACTICE, THE BETTER WE MASTER OUR CRAFT. *****PHOTOGRAPH BY PAUL D. GLOVER

The biggest conquest for anyone with fibro is learning how to manage day to day pain. For every patient there is a different answer. You will see me write this many times: my pain is not your pain or ‘her’ pain or ‘his’ pain or the pain of the person that lives down the street from me.  My pain is not the same of the many people I talk to at the store. I am my fathers daughter! I can talk to anyone. I was in Wal Mart a few weeks ago looking for shampoo. I knew what I was looking for but it was like that book the kids and I used to have fun with, “Where’s Waldo?” Trying to find the “Hold and Lift” version of my brand along with the 500 other brands was about ready to make me scream. A very sweet, elderly lady next to me started talking to me. She asked me if I saw the shampoo she was looking for. We began a conversation that would last a good, full, five minutes.  Dad would be proud of his girl. We compared hair notes. I complained about my thick, unruly wavy locks. She complained about her straight, silky hair. I love straight, silky hair. My best friend in my childhood Tammy J.  had long, black, silky hair. I loved her hair. I have my mothers Mediterranean locks; thick and wavy. The lady told me that the very next week she was paying a lot of money to have what nature gave me, a permanent wave put in her hair.  I told the lady my husband would enjoy this conversation stating he quipped often about how ‘us women were never happy with our hair’. In the end her shampoo was two feet in front of her. She thanked me for the good conversation and laugh, I did so likewise and walked off with a smile. My hair is not her hair….. her hair is not mine and as much as I can try and ‘get’ why on earth she would want to have the very thing I fight….. wavy curl…… I am sure she was left that day trying to get why on earth I would want straight silky hair. The same is true for pain. No one will ever understand my pain and I will never understand the pain of another person. Empathize? Yes. Sympathize? Of course? Completely understand? Impossible.  Since 2009 I have been on the best ‘cocktail’ I have ever taken since starting treatment in 1996. It is not the golden ticket…. far from it. However, it fights my pain as well as anything and being that it is not an opiate, it does not leave me loopy. I like that a great deal!  My pain levels never get below a six. Ever. A six for me is a good day and I get one of those maybe three to five times a year. Out of 365 days, I get maybe 5 good days. 7-8 is tolerable and that is where I sit about 75% of the time. 8 1/2-  9 is bad and 10 is miserable. Bad and  miserable are the days that take the wind out of my sails. The art here is to not be labeled a complainer but rather a crusader. If I only make one person a day aware of fibromyalgia, I have achieved my goal.

When you hurt all the time there comes a time when you do need to vent. How do you master the art of venting without being labeled a whiner? In spite of a society that says “Push through it” or “No pain, no gain”, the same people that say these things are not in your body feeling your pain. If someone who is also hurting chooses to be a martyr, that is their choice. I have heard more than once, “I am hurting too, I just have to deal with it and go on.” If I could ‘deal with it and go on’ I would. I did for years. I worked ‘through it’ and ‘went on’ as long as I could. My Doctor stopped me before I killed myself on the road or collapsed at work and had to be hauled away by an ambulance (between my asthma and fibro, I was actually almost taken away by ambulance more times than I can count). In the same sense hurting when there are Doctors and medicines available to help is a choice that each makes him or her self. If a person has a condition that causes pain and decides to push him/ her self, that is their decision to make.  It is not the fault of myself or any other chronic pain patient who finally has had the courage to say, “I am calling it a day” to blame us because we have listened to our health care providers recommendations on how we should live our lives. I get criticized for speaking raising awareness, notwithstanding, at least I am doing something productive. I am writing, not drowning in daytime TV. The fact that I choose to educate on fibromyalgia awareness does not mean I am asking for pity. I love to write. It is my passion. It is great therapy.  There are still ignorant trolls who think this condition is not real. There are newly diagnosed people everyday; women, men and children. Fibromyalgia affects over 5 million Americans with about one in six of those being under eighteen years old! People need education available them. Who better to educate than a twenty year veteran of the condition?

Along with the art of fibromyalgia comes the art of knowing when to reach out to other people. People, as a rule, reach out for a lot of reasons. We reach out for prayers, comfort and help. We reach out to other people going through the same types of things we are going through. I have seen mothers reach out who are overwhelmed. They are tired from only getting a few hours sleep. I had four children in eight years. I understand this frustration. At least they have a cute face and a warm cuddle at the end of the day. On my ‘Sleepless in Salem’ nights, the clock just ticks away as the early morning hours march on. I feel so alone. Mothers want their children. I did not ask for this illness. As a Christian, I have found great solace reaching out through to my church family. Recently, however, I had an experience that made me guarded to say the least. Bearing in mind I am careful to try to make it clear I am not being negative. I accepted long ago my fibromyalgia and the fact that I have to live with progressive, chronic pain. I recently went through a three week bout where I had a tooth abscess followed by a cold which was then followed by a three day migraine headache. Because viruses and other illnesses hit me so much harder, even a mild cold is very difficult to fight and extremely uncomfortable. I was miserable for three weeks straight at a pain level ten. Most…. 90% of my church brothers and sisters…. are wonderful, caring people. There are, on the other hand, the ones who look for a deep, longing mystery in everything. Sometimes it is just about a virus. Sometimes it is just about a broken tooth allowing infection in. I recently reached out to my church on Facebook and asked only for prayers. I did not ask for anything else, just prayers. I have been so sick for so long that it has been months since I sat in and worshiped. The message is available online and that is great. It is very appreciated. It is, however, not the same as being there. It is not the same as being there for the music, the dancers, the group prayer, laying of hands and the warmth of a touch. Nothing replaces what being with your ‘family’ in worship brings to your soul. After putting this out, I was not pleased to get a ‘sermon’ about how I should seek God’s will in my sickness and not what I WANT. What?  Excuse me? OK, first, I had spent nearly three weeks in miserable mode. WHY was I getting this? I was not asking for prayers for my fibro and made that abundantly clear. I was very restrained, knowing the young man that posted the response was half my age, knowing he likely did not know anything about fibromyalgia and making it very clear I just wanted prayers for the secondary virus, tooth issues, etc that occurred. I don’t think wanting to feel better was being unreasonable. The person who wrote this apologized and and said he meant no harm. I don’t think he did but why did this have to have some big, huge, deep meaning? I just wanted prayers. It was just about a virus, a toothache and a headache. Even our Senior Pastor has preached on more than one occasion that sometimes things happen not because God has a reason or the enemy is out to ‘get us’ but because sometimes we have dumb, bad luck. Sometimes we just have a hubby that picks up a cold bug and gives it to us which is not his fault either. So a few more people offered up prayers and all was good and even helpful because I was improving the next morning. Out of nowhere someone comes and starts hurling Bible passages at me like a horrible sinner that needed to ‘reeee-pent!!!!’. I was dumbfounded. Did he not read the previous exchanges? Did he not ‘get it’? The quickest way a very evangelical Christian can lose me is to start hitting me with ‘hell, fire and brimstone’. I own five Bibles and have a computer that can pull any verse I want up in seconds. I know how to read. I asked for prayers, not preaching! I am a moderate- liberal Christian. I believe God is loving. I believe he is compassionate. I do not believe everything is evil. I do not believe in preaching that if you are sick or if you have a problem it is because God is trying to teach you some grand lesson, or worse, trying to punish you. I also believe before you belong to any church with a building and preacher, you have to have a personal relationship with Jesus. The sad part is, I am not sure if I am ever going to walk through the doors of that church again. The first person shell-shocked me; the second person scared me off. The saddest part? Some of the best of the best people I know belong to that church. They are hurting financially, in part because a drove of people left. Well they may have just lost me. All of this because I reached out for one thing. I reached out for prayer and only prayer.  I need to refine the art of reaching out I suppose. I am still a work of progress in this area.

Two other good coping mechanisms are various support groups and finding friends that share your pain: whether it is online through such mediums as Facebook or through your Doctors office or other local medium. The art of mastering support groups is avoiding drama! Online especially, drama can be a real problem. I have seen numerous issues blown out of huge proportion and people getting into gigantic fights. I have seen back-stabbing, name calling and have had it done to me as well. There have been dramas that I have watched from afar and have been no part of. I have had a fellow sister in pain tell me to ‘push through it’ or ‘suck it up’ when if I had said that to the same person, she would have ‘had me for lunch and spit me back out’. Talk about double standards! I have had the saddest thing happen on my husbands side of the family with a family member of whom I have tried for years to be cordial towards only to find my efforts met with lukewarm to even cold results. Both my husband as well as myself finally gave up. The sad part is, this person pushed us away and set the stage now for a gaping hole. Because of her / his (not specifying) treatment of me, my husband wants, at best, arms length and basic human courtesy to this person. There will be no real relationship…. unless someday this person sees that I did indeed try to build a foundation for a family relationship only to have effort after effort go rebuked. Now I am not naming any names of any person in this situation, I am not naming any groups, I am not naming names PERIOD. I do not want to hear through the grapevine that “Kelli was talking about this or that group” , “Kelli was talking about _____” or “Kelli was talking about ‘me’ “. Kelli is not saying who or what she is talking about….. Kelli is not naming names of any person or any group. I am making one thing clear: I am writing a story. I am telling a tale and using examples. If I wanted to name names, I would. However, I am not. Case closed. The actual point I am trying to get across is simply: Beware of drama!

I have made “friends….fellow warriors on this journey” that live as close as five minutes away and as far, as I call my ‘internet bestie” who lives down under in Australia (babe, you know who you are and I love you with all my heart) …… and every place in between in countries such as the UK, Canada, Portugal and many other places. I have a very dear friend in Yellow Knife in the northern territories of Canada…. she is one of the strongest people I know and is doing some amazing things up north! I have a super amazing friend over yonder in Alabama who talked me through some pretty dark times. She is one of about only five people who know everything that crushed my world at the first of the year. I know someone near DC and by goodness if we ever get up that way, we are meeting for lunch!  There is the woman who is probably what I consider to be my best friend and we go back to Jr. High School.  Though she does not have fibro, someone close to her is walking this walk. There are just too many wonderful people to name.  I belong to some wonderful groups that have helped hold me together when no one else could. These groups get it when I am up at 2 AM, 3 AM, 4 AM watching the clock slowly move by as I try as hard as I can to sleep but the sandman gave me a miss for the night.  Alas, where people gather….. whether in person or on in a virtual coffee house, drama can and at times does erupt. Does this mean we avoid groups? Of course not! Do we become hermits because sometimes life is not fair to us or because maybe someone says something rude. No, that would be paralyzing. I think, however, what we do is learn to back away when drama begins to rear its ugly head. I have learned two things: you pick and choose your battles and it takes two to fight. If only one of you is swinging and only one of you has his or her hands raised without throwing a punch, pretty soon the person throwing those punches will stop.

When I was diagnosed with fibromyalgia as a young Mother, I never thought my condition would get this bad. I never imagined the collateral damage that came along with the pain. I think the biggest shock, in any event, is that one becomes an ‘artist’. You master the art of your condition. Just as the great composers and painters, you learn when and how to approach everything from educating to reaching out. You will never be a finished project. You will continue to learn as you go along. Like all great artists, we become better and more skilled the longer we practice. Notwithstanding, you will become quite refined in the art of fibromyalgia. Until next time. K.

THOUGH THE IMPRESSIONISM ART PERIOD IS MY PASSION, “THE KISS” BY GUSTAV KLIMT IS MY FAVORITE ALL TIME PIECE OF ART. SOME CONSIDER THIS WORK SYMBOLIST. I HAVE ALSO SEEN IT REFERRED TO AS POST-IMPRESSIONISM.

One of the biggest frustrations anyone with fibromyalgia can attest to is the balancing act it presents to its sufferer. Fibromyalgia brings a multitude of challenges both physical and emotional…. all of which create a day by day and sometimes minute by minute ‘house of horrors’. Whether these roadblocks are put up by the pain of fibro or the judgement this misunderstood condition often brings, people that walk the ‘fibro walk’ can attest to many of the following experiences:

• FIBRO AWARENESS VS. BEING LABELED A “NEGATIVE NELLIE / NED”: I am a crusader for this condition! I post information on my Facebook page nearly daily. Whether it is inspirational quotes, You Tube spots, research articles or a picture, I am ‘so there’. I will not stop until my brain-fog makes my writing look like gibberish. The very words you are reading are a testimony to my passion for fibro awareness.  I am not negative, I am a warrior. My name means “Warrior Woman” and my parents chose wisely. Part of it may be that there are still people that label this disorder as ‘unreal’. They are trolls! 99.9% of all Doctors are now in agreement…. fibro is *very* real. The .01% of supposed ‘professionals’ that do not believe it is real should not be allowed to practice medicine.

• IT HITS US “TWICE AS HARD/ TWICE AS LONG/  TWICE AS EASY VS. BEING LABELED PARANOID: I am typing this at 4:05 AM through burning, bloodshot eyes and a tired, aching body that is yearning for sleep. I cannot keep my eyes open, but I cannot shut them to make them go to sleep.  I hurt so bad right now, it makes me shudder to itch my arm. The very act of applying light pressure to itch actually is painful.  My neck has a one inch range of motion. I also have a very sore mouth as  I had pretty wicked oral surgery three days ago for an abscessed tooth that had been agonizing me for the prior two weeks . Just when I thought things were getting better….. or  the version of ‘better’ in my world……I picked up a head cold that my husband is just now getting over. So now I have a sore and scratchy throat that is keeping me up, a sore mouth from my tooth extraction and I my pain levels are elevated even higher because I am so exhausted. Fibro makes everything expand. If I get what was a mild head cold to my husband, it is sheer misery for me. If it had been anything other than mild, I know I would end up with a roaring sinus infection and at the Doctor for antibiotics. I am seriously considering getting “Michael Jackson” masks for the next time I hear that dreaded sentence, “Um, honey, you might want to refrain from kissing me…. I think I am coming down with something”…. only to have him go into auto-pilot fifteen minutes later and kiss goodbye for the day despite having stated the fact. The sheer terror. I knew I was screwed. And no, I am not mad. It is what it is…. it is the hell that is my world; the world of a compromised immune system.

• THE ATTEMPT TO HAVE SOME QUALITY OF LIFE VS BEING SHORT ON TIME, HIGH PAIN LEVELS, TIGHT ON MONEY: As I have stated, it is a very rare day, indeed, that I have a good day. I may have a ‘good’ day (meaning pain level 6) two to three times a year. They are essentially non-existent. My days (pain level 7-10) are tolerable, bad or miserable. I have been in miserable mode for nearly three weeks and I am about to claw my eyeballs out! My husband Paul works two jobs. I do not think I have ever met anyone in my life with a better work ethic than Paul. He is devoted beyond words to both of his jobs and we are blessed that he has two good jobs. However,  we do not have much time to actually go out . With week nights racing by at light speed, Saturdays usually tied up in errands, chores and getting him out the door by evening, Sunday is our only day. Then, he volunteers on camera at church (though he did ask for a reduction to one Sunday a month because it is starting to catch up to him at times). Add one phone call every three weeks (that was changed from every other week) a month to his Mom on Sunday afternoons… but of course, as it should be!…. and though I am no math expert that leaves us with about 1-2 Sundays a month to try to do something….. anything. I am not complaining. Some couples have ‘date nights’. We cannot because he works weekend nights. On top of that, money is always a bit tight. Now, factor in that I have to ‘feel good enough’. I think we would have better odds at winning the lottery. It is absolutely soul crushing! 🙁 I will say, the one shining bright light is the Sunday every four to six weeks or so that we see and play with our Granddaughter. Now that is a truly happy, happy, happy time for both of us. It seems no matter where my pain falls that day, her very presence lifts it, if even for a few hours.

• KNOWING WHEN TO EASE UP: One of the biggest misconceptions about people with fibromyalgia is that we are ‘lazy’ and that we can just ‘push through’ our pain. One way to lose my respect….. and I literally mean there have been a few…. not a lot…. but a few people I used to respect. I now do not or hold in a different light because of the crass and insensitive comments I have heard / read over the years. It would be like telling someone without legs to ‘get up and walk’ or a blind person to ‘watch where they are going’. The day I left my last job….the day I exhausted every last minute of my FMLA time…..my Doctor ticked the box that said “NO, MY PATIENT CANNOT WORK”. That day changed my life and was the day I officially became disabled. Every specialist I see backed my Doctors decision up, 150%. My pain is not the same as anyone else. What someone might easily be able to ‘push through’….. possibly something I could have ‘pushed through’ even five years ago…..is something that would now make me collapse. The only person whose pain I am qualified to gauge is my own. And a part of that is knowing how to balance my ‘to do’ or ‘to don’t’ list so I am most efficient for my husband and myself.

Life with fibromyalgia is a day to day, minute to minute balancing act. It is a constant ‘checks and balances’ of the patient to make sure they are in optimum physical, emotional and spiritual well being. Anything from an unwanted cold to an unexpected toothache to a ‘well meaning’ friend trying to tell us how to manage our pain can send that set of balls that are carefully being juggled into a spilled frenzy. As the driver of our vessel, broken it may be, we are still the best person to gauge which side of the scale to set the next weight. And by the way, I am finishing this at approximately 5:30 AM. It will be dawn soon and I am sleepless in Salem. I have been awake for almost 22 hours. Yep. Twice as long, twice as bad…..it just sucks. This condition; it never ceases to amaze me. Until next time. K.