I just had a ‘big’ birthday. It is a number I have been dreading for some time now. Alas, no matter how much we dread, time marches on. So I decided to embrace it and be glad that I am here, rejoice the 5th,6th and 10th times I heard , “Wow! You do not look anywhere near……” and  help my poor husband who was attempting to throw me a small party. Paul had never been in charge of any such task in his entire life. My husband is an amazing follower, but an organizer of an event…… um, not so much. Hey, we can’t all be the “Chief’s”, right? I, however, being a woman and having four children (and lots of other experience organizing ‘events’) was happy to ‘guide’ him. I was actually excited about the party! We gathered pictures from my walk on this earth. My time does fly! I told him when each one was taken and what it represented. He carved my soon to be age out of Styrofoam board and we made a picture collage. I made a couple of CD’S, one of a few of my favorite EVPS I had captured since I started ‘investigating’ and one was the ‘soundtrack of my life’. It was fun. Other than a few people who could not make it being missed, it was a great and wonderful couple of hours. Just pure fun. But I was not prepared for the next three weeks and what it had in store for me. It started with a flare. We, with fibro, all have them. On my birthday it was my gut that got hit. And it hit for days. I had to take lots of ‘gut meds’ and I won’t elaborate but the gut situation went on for at least a week and a half and overlapped with the neck situation.  I had two nerve blocks done on my actual birthday (bad booking on the Doctor Office’s part, too hard to change once booked because of the way they prescribe the medication). Now I still love this new Pain Management Doctor I am seeing. He listens. He respects and cares for me and his other patients. He *wants* to help. He is not there to just collect a paycheck. His office is not overflowing with people to rattle in and out like cattle. Nonetheless, something in my neck got irritated during this block and by about Monday (the day after the party), my right side was in spasm hell and I was hurting in the worst way. I would end up in the ER getting my usual ‘mix’ that does *not* include any narcotic meds (as to not break my pain contract in any way). In fact the first words out of my mouth are, “I am not here for narcotic medication.” By doing this, they take me seriously. I know what works, this particular PA agreed, and we went with that protocol (they have a fast track that allows you to see a Physician Assistant for Non “Super” Emergency).

So, I had the gut thing going on and then the overlap of the neck spasm / irritation from my nerve blocks. Of course I was getting very little to at some points no sleep and the sleep I was getting was sitting in the corner of my couch sitting up, curled in a ball. It got to the point where I had gone night after night and had not gotten into bed at all or maybe got on top of the covers with a blanket (could not see ‘unmaking’ the bed for just over an hour’s worth of sleep). If you are a ‘well person’ reading this: take note, because this is not just me, I represent what so many with fibro and chronic pain live with. We just want awareness.

After days and days of this I was not prepared for what I was about to encounter, the debilitating fatigue I would experience. It had been a long time since I had this sort of fatigue and even then it was just usually a day or two. However, this went on and on day after day. That is when I remembered, I did not just have Fibromyalgia, I have Chronic Fatigue Syndrome. I think I mentioned this in previous posts, but my official diagnosis is: Fibromyalgia Syndrome Chronic Fatigue Immune Deficiency Syndrome. That is a mouthful! That does not cover the tangible issues in both my neck and now my lower back (tangible being things that you can see on scans; things that you can point to and physically look at). These are added issues upon the fibro issues.  This is easy to forget when your medications, your diet, your sleep patterns, etc are in a relatively good place and while you are not going to be on “Dancing with the Stars”… or would that be, “Dancing with the Average People”, you certainly can appreciate what ‘functioning at a low level of normalcy’ is and praise God for what a gift even that is!It persisted. Day after day. It was all I could do to get up, shower and do the bare minimum…. and doing the bare minimum meant doing it in five minute spurts. Of course then, depression sinks in. It is depressing to hurt all the time. It is depressing to be a “So Cal girl” living in a four season state and you *live* for the summer months only to have your summer be the cloudiest and rainiest that even the ‘old timers’ can “ever remember”. “Weird.”, they will way, “It has just been a weird summer.” I say more like sheer robbery. We were robbed of our summer. 🙁 Because of my ancestry I only need about 8 hours of sun to get a pretty decent tan. Eight hours of sun is about what I think I got this year. So you have pain, sheer, utter, indescribable fatigue and then depression. It goes on day after day until that turns into a week and then it is two weeks. Finally you start to question yourself; “Is there an end to this flare?” Or, “When do I reach for help or am I just being silly?” We with fibromyalgia and Chronic Fatigue Syndrome get doubted and told there is ‘nothing wrong’ or we are ‘making it up’ or even worse, ‘ we are attention seeking’ so much, we get to the point where we are afraid to ask for help. We also get labeled as ‘pill seekers’ which if well people would get educated they would know the DEA has become so malicious there are people in horrific pain that are actually committing suicide because the DEA have become zealots about pain and anxiety medications. There is a time in which one can swing too far in either direction. I have a friend who shall remain nameless. I have over 1,000 friends on Facebook about 80% of those are chronic pain warriors so my friend’s anonymous state should remain pretty safe. She/ he has three major pain inducing chronic illnesses. Three. I have one of the three they have and it is about all I can do to exist. This person told me the DEA in their state was starting to crack down and their Doctor was having to tighten their medications. I was speechless. With what this person has to fight on a daily basis; basically Fibromyalgia times three (only worse because one of the disorders attacks the tissues of the body), I do not understand how any agency can think they are doing ‘good’ by refusing someone in so, so, so much pain medications that keep them sane. I am not talking about someone who breaks their arm and gets hooked on Lortab here, I am talking about someone whose life is a living hell and the only way they make it through each day is medications that dull their pain enough to ‘deal’. I feel blessed because I have found a treatment plan that I think (fingers and toes crossed) is going to ‘work for me as well as anything can’ aka I will still hurt like hell but will manage. I finally have a Doctor that cares and ‘has a clue’ and my meds seem to be at the ‘sweetest spot’ they have been at in years. The bone in all this is, I just found out a lot of ‘not such good stuff’ about my lower back and of course as most know my neck aka C-Spine is basically wrecked. I would not go quite that far with my lumbar; it is not ‘wrecked’ but it is well on its way. Hey, there is always the Thoracic Spine… Oh, wait, T-1 has stenosis. Darn! In any event, to all ‘well’ people, while I am sure there are ‘pill seekers’, we in chronic pain are seeking some, any sort of relief, not a ‘high’. I can assure you that! I wish I could say there was some happy resolution to this fatigue episode. I am slowly getting back to the ‘normal fatigued me’. It does serve a purpose. When trying to explain to someone why I am disabled….. not that I have to explain to anyone….. this last three weeks is a perfect example. It has been all I could do to exist! I about had a fit when someone in my family apologized to me for ‘forgetting my birthday because they are in so much pain’…. yet this same person can go on vacation at least once a year to a place that is a good three hour airplane flight. My last vacation was my Honeymoon in 2005. I don’t even know what a vacation feels like anymore! If you forgot my birthday, I am a big girl, I will survive! Just tell me you forgot my birthday, but don’t start ‘one-upping me’ on pain because I guarantee you, I will win each time. I sent that person a detailed list of every single thing wrong with just my neck. Not the Fibromyalgia, not the latest diagnosis, my back which I am still learning what is wrong including a cyst that I am quite concerned about. I am not even telling anyone (except Paul) what is going on with my back, because I don’t know enough about this condition (except there are “Institutes” and “Clinics” that offer “Hope” and “Encouragement” for people with my lower lumbar condition; I do have, as suspected, a disc issue, but that would appear is the least of my worries).  I did not get a response from this person. I really don’t care if someone forgets my birthday. I had so many well wishes, as hard as I tried, I was not even able to thank each one personally and issued a ‘mass thank you’. So plenty…. 100’s to be exact… remembered, so I am plenty blessed with people who remembered! Now how blessed is that? Awesome!

So, as I slowly get myself out of this tailspin of utter, immobilizing fatigue, if for no other reason, I need to be ready to hit the ground running when my Grandson decides to greet us at any moment, I wish I could give some brave, wonderful, wisdom filled words. I really cannot. I can say this: if finding yourself in this bad of a flare, rest, rest and rest some more. Eat well, pamper yourself. Bathe daily and get on fresh clothing…. nothing feels better than being freshly showered or bathed and having clean clothing on. Stay away from negative people. One Uppers; deflect what they are saying or just avoid them. I am at a critical time with faith/church. I am considering returning to my Catholic roots. I feel forgotten and deserted by my ‘new church’. My husband works 2+ jobs but still goes there to volunteer on camera. I have missed more Sundays than I have gone and it is not because I have wanted to miss going. The soul: willing, The body: well, you know. I won’t elaborate, but it was my understanding …. especially in this church…. they are supposed to ‘check on you’ if you don’t show up. Well I can assure you, no one has ‘checked on me’. So who has let me down here? People or God? In fact listening to the Gilbert O’Sullivan song “Alone Again, Naturally”, it was just the song I needed to hear. These lyrics especially:

Talk about God in His mercy
For if He really does exist
Why did He desert me
In my hour of need?….. and…

It seems to me that
There are more hearts
Broken in the world
That can’t be mended
Left unattended
What do we do? What do we do?

So for those of you who are having difficulties with fatigue. I feel your pain. This last three weeks has really jolted me back into the reality that I do not just have Fibromyalgia, I have Chronic Fatigue Syndrome, and that it is not a force I can reckon with. The best I can do is rest, eat right, drink a lot of (non soda) liquids,  take my medications and vitamins and try to not push myself too hard. Oh and stress: avoid negative / toxic people and avoid as much stress as possible. Hey, I am saying what we are supposed to do to help things, I did not say it would be easy. 😉 Until next time, K. This post and song is dedicated to all my sisters and brothers with Fibromyalgia, CFS/ ME and Fibromyalgia Syndrome Chronic Fatigue Immune Deficiency Syndrome (my technical diagnosis) as well as all sisters and brothers of any chronic pain and / or connective tissue disorder. CARRY ON!

“But I like to think I can cheat it all
To make up for the times I’ve been cheated on.
And it’s nice to know when I was left for dead
I was found and now I don’t roam these streets,
I am not the ghost you are to me.” (“Carry On”) ~ FUN

http://www.youtube.com/watch?v=q7yCLn-O-Y0

The life of chronic pain and invisible illness is not easy. Often being labeled as exaggerating our symptoms or even faking our illnesses to get attention or even disabled out of work, nearly every single fellow warrior on this journey follows the same path I do: a lonely, quiet, hidden and dark life of pain and co-conditions that we rarely let on. I can be the most bubbly girl in the room and be talking and laughing but on the inside I am in horrible pain. I should win an Oscar at times, I can act that well. I recently was having a discussion with my husband Paul about how every month is now clogged with “awareness”. Before I proceed, I am not ashamed to admit I am a moderate liberal. I am a ‘tree-hugger’ and make no apologies. I have an open mind and a diverse soul. So having ‘awareness’ for things is good. On the other hand, after looking at the list from, citing credit to this site http://www.disabled-world.com/disability/awareness/awareness-dates.php I think we have gone too far. I am, nonetheless,  shocked and saddened that there is no chronic pain month. There is no invisible illness month. What is wrong with this picture, besides everything!

Lets start with just a few examples from each month: In January there is Constipation Awareness Month, Get Organized Month, Glaucoma Awareness Month, National Clown College Month (Yikes! clowns are just creepy!), Oatmeal Month, Bird Feeding Month, Radon Action Month and Clean Up Your Computer MonthHere are a few examples for February there is Bake for Family Fun Month, Great American Pies Month, National Grapefruit Month, National Bird Feeding Month, National Sweet Potato Month, Typewriter Appreciation Month and my personal favorite, Return Shopping Carts to the Supermarket Month.

Here we go for March, some of my favorite choices are: Black Hole Awareness Month, National Frozen Food Month, National Noodle Month, National Caffeine Awareness Month, National Flour Month, National Frozen Food Month and the best one for this month, of course, National Text your Neighbor Month!On to April. Some of April’s stand-outs are:  National Food Month, National Pecan Month, National Garden Month, Fresh Florida Tomato Month, Records Management Month; National; Association of Records Management Professionals (ARMA), Huh? Records Management Month and National Financial Literacy Month.

For May: National Zombie Awareness Month (as a paranormal enthusiast, I can dig this!), Asian Pacific American Heritage Month, National Salsa Month, National Don’t Eat Cheese Before Noon Month (What?), National Hamburger Month, National Chocolate Custard Month,  National Share A Story month and May is the Month of Man. May is also Uranus Awareness Month… the planet of course! Why don’t the other planets get an awareness month?

Salsa is delicious, but a month to raise  ‘awareness’ of salsa while there is no month to raise awareness about the plight of chronic pain? Or did they mean the other Salsa….

Sorry… Could Not Resist!

This Big, Blue Ball Of Gas, Uranus gets an Awareness Day… Why Not The Other Planets?

Moving to the lovely month of June: We have, Audiobook Month, National Flag Month, National Fresh Fruit and Vegetables Month, National Iced Tea Month, National Papaya Month? (or September) …. that is how the site listed it! National Seafood Month, Turkey Lover’s Month (shouldn’t that be in November?) and National Candy Month

Everyone Loves Candy, But Awareness Would Be Better Served On Those With Chronic Pain and Invisible Illness!

Moving to the dog days of summer in the great month of July: Lasagna Awareness Month (as someone who is part Italian on my Mom’s side and makes a wicked good lasagna, I can appreciate!), National Baked Beans Month, National Blueberries Month, National Ice Cream Month, National Hot Dog Month, National Picnic Month, National Pickle Month, National Tickling Month and my favorite,
National Hat Month. The hat gets a month but not chronic pain and invisible illness. What is wrong with this picture?

August is a great month! So let’s see what we have to appreciate during this month: Catfish Month, National, Dragon appreciation month, Panini Month, National Peach Month, Dirty Harry month, National (Really?), and my favorite, Don’t be a Bully Month (This is a good one! Bullying is awful!)

While I Feel We Have Gone Way Too Far With “Awareness” While Leaving True Issues Out, Some Are Very Important, Like Awareness About Bullying

Let’s move to September: Some things we are made aware of in September are, National Sewing Month, Hug a Texas Chef Month, National Preparedness Month (Sheldon Cooper would appreciate this one!), National Bourbon Heritage Month, All American Breakfast Month, National Chicken Month and my favorite National Library Card Sign-up Month

There Is A Month To Raise Awareness About Getting A Library Card, But The Hundreds Of Thousands Of People Affected By Chronic Pain And Invisible Illness Have No Voice

What have we got in October? Here are a few examples: Cook Book Month, Gourmet Adventures Month, National Car Care Month, Caramel Month, National Pickled Peppers Month, National Pizza Month, National Squirrel Awareness Month (Squirrel awareness?), National Stamp Collecting Month and my favorite, National Toilet Tank Repair Month.

In November we have: National Peanut Butter Lover’s Month, National Raisin Bread Month, No Shave November (also Noshember), Good Nutrition Month and my favorite, Vegan Awareness Month

There Are So Many Months That Have Awareness Raised About Food, Including Vegan. Where Is The Voice Of Chronic Pain And Invisible Illness?

I am going to cite some numbers to give an idea of what the multitude of people suffering from chronic pain. I am then going to take it one step further. It is estimated that (per) http://www.nfra.net/nfra-dr.bennett-brochure.html that up to 11 million people in the USA alone have Fibromyalgia. I have cited the number of 5 million on many occasions, but in all honesty, any way you cut it, it is still a huge number of people. Just to give you an idea, at a small get-together for my birthday recently out of 7 adults, 3 of us (women) had Fibromyalgia. And no, we were not ‘brought together’ by our fibro, one is a neighbor and one is extended family (by marriage). According to http://www.fibromyalgiasyndrome.co.uk/how-many-people-have-fms.html 3-6% of the world’s population have Fibromyalgia! That means somewhere around 200 million to 400 million people worldwide have Fibromyalgia Syndrome. If you put all the people worldwide that have Fibromyalgia, it would fill up the entire USA! There is a “Fibro Awareness Day” on May 12th. A day. Just a day. For upwards of 400 million people worldwide, we get a day. According to the initial page I cited (getting the awareness months), it cites May as Fibromyalgia Awareness Month, but I have been dancing this dance for twenty years, and I know like I know that it is not a ‘month’. May 12th is ‘our’ day that we get to make people ‘aware’. Wikipedia backs this up by not listing May as Fibromyalgia Awareness Month. May 12th is the one day that I guarantee I probably got ‘well’ people to read this blog post. I hope if you are reading it now, at least some of the people reading it are not plagued by any sort of chronic illness. That is my hope and prayer. We need people who do not have this plight to at least have some empathy. Remember, we do not want pity, we want understanding.

There Is A Fibro Awareness DAY on May 12th. But Where Is Our Month? While the Site Lists May As Fibro Awareness Month, I Have Been Dancing The Fibro Dance Long Enough To Know That is a Good Gesture At Best

Moving on to Lupus, this illness is a mean, horrible and unforgiving illness. Two of my closest friends in the world… two strong and amazing women have this condition. Did I mention how brave they are? I don’t know that I could be as brave as they are given what they face. One has fibro along with Lupus and Raynaud’s. There are approximately 1.5 million Americans with Lupus and as many as 5 million and worldwide with about 16,000 new reported across the USA each year. So if you put all the people in the world together with Lupus, they would approximately fill the city of Miami, Florida. There is a World Lupus Day on May 10, but not a Lupus Awareness Month. With all these dates given to food and meaningless objects, this debilitating condition…… like Fibromyalgia…… only warrants a ‘day’?

MS is another sister illness that causes great pain, co-symptoms and is a sister illness to fibro and Lupus. No one knows exactly how many people have MS. Experts think there are currently 250,000 to 350,000 people in the United States diagnosed with MS. This estimate suggests that approximately 200 new cases are diagnosed every week. (Source) http://www.ninds.nih.gov/disorders/multiple_sclerosis/detail_multiple_sclerosis.htm Worldwide, MS affects more than more than 2.1 million  people. So if you put everyone in the world affected by MS in a city, it would fill the city of Paris, France.

There are plenty of other chronic conditions that bring on pain such as rheumatoid arthritis and osteoarthritis, Chrons Disease, chronic migraines (now there is something we need awareness for: migraine headaches!) and so many other things. Let’s go one step further and talk about people that do not have chronic health conditions. For instance one of the top reasons that people go to the Doctor, per Sunny FM Radio in Roanoke, VA and http://www.fool.com/investing/general/2013/08/11/the-10-most-common-reasons-people-visit-their-doct.aspx is back problems. The web site I credit also sites headaches and migraines as being in the top ten reasons people go to the Doctor. As many know besides having Fibromyalgia I have a severely ‘sick’ neck and more recently it was confirmed that I have arthritis through all the joints in my lower back. Since I take frequent falls (and my Doctor is afraid I will break a hip if this keeps happening), a pinched nerve and possible disc/s herniation in the lower lumbar reason is suspected and I am awaiting an appointment for an MRI scan of the lower back. Therefore, even if I did not have fibro, I would still be in a lot of pain. In other words, chronic pain is far from being just a ‘chronic condition’ issue. Someone who is otherwise healthy can have a back, neck or issue in another area of their body. My Uncle is a perfect example of this. Knocking on the door of seventy years old, he is in great condition as far as his heart and overall health. He does have a lot of pain, however, in most part due to a not so successful back surgery. He also has a lot of nerve pain (nueropathy which can also affect diabetics). There are people that have been hurt in accidents and have chronic pain for the rest of their lives. I could keep listing instances of chronic pain, but I am confident I have made my point.

We have become a politically correct society that puts importance on many things. I am not saying that many of the subject cited are not important. However, I do believe many of them are a bit overkill. I feel the many voices of chronic pain and invisible illness, as always, goes unheard. Many people that have never experienced this first-hand assume people that live in pain are just wanting attention, drugs or to not have to work. While I am sure there is a small percentage that fall into that description, the several hundred fibromites I have and warriors on this long, painful road we travel are anything but this sad and unfair description. It is time we get an awareness month for our voice. I hope it happens soon. Until next time, K.   This post is Dedicated To The Memory Of Helen Winstanley whose walk on this earth ended August 2013, But whose Soul Will Forever Dance In Our Hearts And Who Will Forever Watch Us In Heaven. Rest Sweet Angel, for you have So Earned those wings!

When we live a live with a chronic health condition, especially chronic pain, life throws enough challenges at us. From finding a Doctor that will champion for us to facing people that think we are ’embellishing our symptoms’ or even faking it to get sympathy, life with fibromyalgia or any of her sister conditions is a day to day battle. One big piece of advice I can give: Avoid all things toxic, especially toxic people!

Sometimes we are so wrapped up or involved in a situation, we cannot see the forest for the trees. That person who makes fun of us for perhaps being clumsy (as a result of our condition, or tangible illness such as happened in my case), is slowly spewing the toxin in. Like the scenario of the frog slowly boiling and it is boiling so slow it does not know it is getting cooked, one can be getting a low level of ‘human toxins’ and not even know it! If you are laughing on the outside but upset or even holding back tears, RUN!We protect our children and grandchildren by keeping hazardous chemicals locked up. We keep our medications on high shelves or locked in a safe. I myself go through my house like a blood-hound when I know my three year old granddaughter is going to be visiting. I leave no stone unturned. As much as it hurts my arthritic knees, I even get down at the level of a three year old to see what may be ‘tempting’ and make sure all things hazardous are safely out of reach. Yet as patients with compromised immune systems who are already wracked with physical pain, do we take this kind of guard and care with our spirit? We should.

WE GUARD OUR CHILDREN AND GRANDCHILDREN AGAINST HARM. WE PULL OUT ALL THE STOPS TO ASSURE THEIR SAFETY. YET DO WE DO THE SAME WITH OUR OWN SPIRIT? IF WE DO NOT, WE REALLY SHOULD!

Remember, if someone is talking about others behind their backs and spewing venom, they are doing or will do the same to you! Trust me, I have age and wisdom on my side and though I can be naive, I have seen this time and time again. The person that spills their guts to you like a hormonal teenager, he/she is going to say things to others about you. Now this may not be your situation, but whatever toxic situation you are in, get out! Trust me, you and your health do not need it! You can try and warn others, but they will have to find out in their own time and space if they choose not to believe the specifics you give them. Sadly, most will learn the hard way when it all comes crashing down like a pile of bricks. Toxic. No, we who have chronic health conditions, we need peace, love and harmony. We do not need people that mock us and make fun of us. We need people that understand us and uplift us. Remember, God, Karma, whatever you choose to believe as the higher power, always takes care of all, in their time. So go and live well for that is the best ‘revenge’. In order to live the most pain free life we can, we have to have the least stress we can. This includes avoiding toxins including toxic people. Listen to your gut! It is the best indicator of who is pure and who is toxic. I normally listen to mine but sometimes (and we all do this) we get so excited about a situation, we ignore our gut and over-ride the alarms it is sending us! Every time I have done this, I have regretted it. When you get stressed, you end up in a flare and that is really not good. So zen and peace to you. Remember, you are worthy of good. You are worthy of love! Until next time, K.

Most people think of bullying as a grade school problem. Trust me, bullying in the adult world is alive and well. I have just went through my first out right direct discrimination/bullying towards my disability and it left me flat on my rear for about one day but I got up, brushed myself off, researched my rights and after realizing the things this person said, I did not see the forest for the trees. Remember this, when someone talks about others behind their back, he/she is also going to be talking about you too!

I am not sure how many people reading this have had anyone ‘make fun’ of their condition but as many of my regular readers know, one of my tangible conditions is severe cervical stenosis (pressure on the spine) on every level of the c spine (c-1 through T-1). Like a garden hose with running water, my spine is that garden hose and it has ‘kinks’ in it. When the kinks get even worse for bits my hands give ‘out’ and I drop things; a lot. This person made fun of that all the time. They would go on and on about how I dropped things. I explained it was from the stenosis and not something I could help. Thank God I never took one of my famous ‘down with no warning’ falls. I am quite sure I would have never heard the end of that. And then there was my eyes. Now I realize this has nothing to do with my fibro but this person also talked over and over about what ‘crazy’ eyes I have. I have steel green eyes. Jet black hair and steel green eyes are an unusual combination, I admit. However, one cannot help their DNA. Alas, discrimination and bullying is alive and well in the ‘grown up’ world. Here is a poem regarding my experience. This is dedicated to anyone and everyone that has been discriminated against and/or bullied. You are worthy and wonderful! Do not let anyone ever make you feel less than the beautiful, wonderful unique creation that God made:

The Hero Is Dead, A Bully Was All Along

It takes a lot to become a hero in my eyes
Not a small thing, for this is true
One must be extraordinary, kind and gentle of soul
Respectful and Caring, too

When a person in my life is promoted from friend to hero
It is a compliment of the highest regard
It says that person is upstanding and honorable, thinks of others before their own self
They do not act with disregard

Sadness befalls when a hero dies
It means something went terribly wrong
How could I not see this person for who he really is?
How could I not see underneath that pretend charm?

This is no hero, but a bully
A child is more mature
A grown up who cannot handle an honest question?
It was not even intended as an insult but something I wanted to improve

True colors come bursting like lightning
When the bully comes showing through the rage
Cannot act like a grown up
Cannot talk like a man
Has to act like we are in the first grade

The hero came tumbling like a house of cards
Over something so small, so obscure
Something any adult should be able to talk about
Most children would have had this issue resolved and be on the path of renew

The hero is gone, the bully arrived
Now games he is playing like a child of five
So sad, so pathetic, so far from who I knew
No hero, just a bully; I should have seen it coming through

He made fun of my eyes, said they were weird and wild, He made fun of the fact that I dropped things from my hands, hardly something I can help

My eyes are the result of DNA, something I cannot help and would not change if I could

The things I drop? Pressure on my spine;  what kind of person makes fun of a disability? When he laughed, I cried, inside
I should have seen it coming
But as a trusting person, I tried to give way
The bully was there
I just would not admit it
Until the day I saw his rage

Paranoia abounds! But it is not I the bully should fear If he only knew it is those he does not know that must be feared
Cut off from the world, so afraid of everyone
Gonna take on the world with an attitude and a gun
The bully emerges and pushes everyone and if you don’t behave, you will be PUSHED! To the ground!

It is sad but true because this person I knew
Was a friend a hero too but is only a sad bully I once knew
I tried to ask a question, like any grown up can do
And took the wrath of the inner bully’s hack
And was shot down, by the inner child’s frown
Now watch out, or the bully will cut you down
And the hero, there never was, because the bully was just waiting to emerge.

This post is dedicated to all victims of bullying: ages one to one hundred and one. Remember, NEVER let ANYONE tell you that you are *anything* less that ‘____’ perfect! The bullies of this world will get their pay in due time. Karma takes care of everyone in time and everyone has to answer to God or what you believe to the the Higher power in due time.

****Because sometimes it just ‘fits’, the following version of Pink’s “Perfect” is *NOT* the clean version. If the ‘f’ word offends you, you may want to skip watching this video. I love Pink and what she has done for people (be who you are!) and music! This song is *perfect* …. no pun intended…. for those who have suffered at the hands of a bully! Remember, you… are…. perfect. Do not let the “Scott Farkus’s” (“A Christmas Story”) of this world get you down because we all know what little Ralphie finally did when he ‘had enough’ 😉  http://www.youtube.com/watch?v=cSDZCK3PKKw

And I found this little British doozie… very good, probably attended more for younger people getting bullied, BUT when the older act like the younger … it is all so clear now! How could I not have seen it!

Some lyrics……

(Hey Jessica, you’re so funny
You’ve got teeth just like Bugs Bunny)…. insert, “Hey, Kelli, you have the weirdest, strangest eyes I have ever seen! They are wild eyes… wild.” and “You always drop stuff… you keep dropping your ____from your hands”  (please note I cannot help my DNA … eye color… the I drop things constantly from the pressure on my spine from severe stenosis, so it is making fun of someone with a physical impairment…. and at times I had to hold back tears!).

More lyrics……

But thank you for the pain
It made me raise my game
And I’m still rising, I’m still rising….

So make your jokes
Go for broke
Blow your smoke
You’re not alone
But who’s laughing now
But who’s laughing now

Song:

http://www.youtube.com/watch?v=mH6z98n83WI

Until next time, K.

I am as ‘girly girl’ as they come. You will not find me at the store without make up and you sure will not find me at Wal Mart with my latest pair of pajama bottoms on! Because I am now fully disabled, I do not get out much. All the same, when I do go out, I want to look nice. I am making an assumption it is for this reason that is why, on more than one occasion, I have been approached by someone telling me I am parking in a disabled zone. My response, “Yes, I am aware of that and if you look, you can see my place card” (as I try to contain the urge to give them a mouthful about how not all disabilities are able to be seen with one’s eyes). Each and every time there has been an embarrassed shuffle of, “Oh… um, er… I did not see it… sorry…..”. The last time this happened, as I walked toward the store (gait intact!), I looked back and did indeed state, “Not all disabilities are visible!” That would be our world, the world of Fibromyalgia as well as Lupus, MS and a host of like invisible illnesses.

I LOVE THIS DRAWING. IT CAPTURES WHAT FIBRO “FEELS LIKE” SO WELL. THOUGH WE MAY “LOOK” FINE, INSIDE, THIS IS HOW WE FEEL.

So what makes Fibromyalgia so invisible? How does this affect the fibro patient? What are some of the things we…. the fibro patient go through in silence, game face smile, ear to ear….. as we face the world where everything we do takes us twice as long, is twice as hard for us and we usually either are not believed or at the very least are judged/questioned about our condition. The following are some things I consider very important regarding the invisible part of Fibromyalgia:

1. WE DO NOT LOOK SICK/CANNOT TAKE A BLOOD TEST/SCAN TO ‘SHOW’ WE HAVE FIBRO:  Most fibro patients look just like everyone else. Unless it is first thing in the morning (when we are getting out of bed and having morning stiffness) or those of us…. myself a two decade veteran with a gait that can be quite detectable at times…there is no way to ‘see’ fibromyalgia. Many posts ago, I wrote a post about “The Faces Of Fibromyalgia”. In that I used random pictures from the internet, and even included a picture of myself. The people were women and a man. All were different ages and races. While women are the biggest population to get fibro, they are by no means the only people out of the general population to get Fibromyalgia. Men and even children can and do get this condition. A few weeks ago I was speaking to a fellow fibromite and found out a relative of hers was diagnosed as a child. He is now a young man but he is both male and diagnosed approximately around the age of nine with Fibromyalgia and other sister conditions. This condition knows no limits or boundaries and does not wear a sign that shows the world “This person is one of the faces of Fibromyalgia”.

2. TWICE AS LONG / TWICE AS HARD: It takes someone with Fibromyalgia twice as long to complete any task. It does not matter how mundane the task, it does not matter how simple the task. If I do not have Paul to help me get out of bed for instance, from first morning it can take me up to five minutes just to get out of bed. I will not list every routine, but even showering and getting ‘ready to go out’ (meaning a Doctor appointment or quick errand) can take up to two hours. Any little errand, even going to the store to pick up a can of soup, seems to be such a huge, overwhelming undertaking! That is why people that quip, “I have to deal with my pain and just push through it“, do not realize how their words hurt and sting. Your pain is not my pain. IF you can push through it, I can tell you right now, you are not where I am. Sure, I can push… maybe one or two days. But I will ‘crash and burn’ and ‘hit the wall’ and be in bed for two or three days or worse, just collapse. If you take away no other words from this section please take these words under your hat: Everything I do, from getting up, to showering to blending my morning smoothie to even hobbling around the house at times takes a tremendous effort. Because I refuse to just sit and watch TV (and I took heat for allowing myself a one hour break a day for my one guilty pleasure, my one show I watch a day, unbelievable!), I push in the way I can without bringing injury to myself. I try to stay busy to the best of my ability. Sometimes busy is sitting at my computer and writing. When someone pays me to do this, I will gladly turn in my disability card. Until that happens, there is nothing else I can do. This thing has me, but I don’t wallow in self pity, I really do try to balance what I can do with what I know is too much. Being told we are not trying enough or just need to push through it only makes us feel worse about the hand we have been dealt than we already feel.

REMEMBER FELLOW FIBRO FRIENDS: YOU ARE NEVER ALONE!

3. The Co-illnesses You Do Not See: It saddens me how much my gut dictates my life to me. I have almost become a shut-in due to this. IBS is one of the most common co-conditions of Fibromyalgia. Nausea and other stomach issues do not rank far behind. As much as I hate to, if I have something planned either at my house or away, you will usually find me packing away 4-6 Imodium the night before as a precaution. Phenergan (promethazine) has become one of my favorite meds (and no, it does not make me drowsy, likely because I have built up a resistance to this common side effect). Sometimes I have to back it up with Dramamine (OTC)! Stomach issues abound! Senses in overdrive are also not seen. Sights, sounds and smells all overwhelm me! I am misunderstood! Recently at a baby shower, where used clothes in good condition were stated to be welcomed on the invitation, I told the Mother to be, “The little sleepers I got with the tags… from Target… were from Goodwill!” The tone in my voice must have been misunderstood, because I meant it to be in a “isn’t that super cool! New Target sleepers at Goodwill price… meaning I could get the Mom-to-be MORE because I had more in my budget!” She said, “It’s alright!” as if to calm me. I feel so misunderstood because that is not what I meant and with my senses so out of balance I feel like I cannot get my bearings, especially in large groups. The best way to describe this: Everything is AMPLIFIED for us: sights, smells, sounds (crowds sound like they are turned up to a super high volume on a speaker), tactile, etc. However, we say nothing. We suffer in silence because we know if we try to explain this we will either be seen as ‘weird’ or some kind of ‘attention seeker’. This is one of the worst things that remains invisible for us. It is also the most misunderstood. 

IMAGINE YOUR SENSE OF SIGHT, SMELL, HEARING, TOUCH, ETC ALL IN SUPER OVERDRIVE. NOW IMAGINE NOBODY UNDERSTOOD, OR WORSE, IF YOU CONFIDED IN THE PEOPLE YOU LOVED MOST THEY WOULD RIDICULE OR MISUNDERSTAND YOU. IT IS A HORRIBLE ISSUE TO HAVE TO REMAIN QUIET ABOUT. IT MAKES THE PERSON WITH FIBRO FEEL SO ALONE.

4. Fibro-Fog: This is one we fibromites try to hide but it is difficult at best. People try to blame it on our medications (remember, I have hearing like Superman and no matter how much your talking behind someone’s back is meant not to get back to them, it always does. Remember too, karma exists and is alive and well). For the record, I am less medicated than I have been in years but the fibro-fog is worse than ever. A good example is Paul and I watching a movie the other night. Now even Paul will admit this movie was a bit hard to follow. Nonetheless, we had to stop this movie probably every twenty minutes so he could explain things to me. I have to rely on him a lot to explain things to me from news articles to things people post to me on social media. Like the person that stutters but can sing, I seem not to suffer when it comes to writing. I feel blessed beyond words regarding this and pray this stays intact. It hurts when people jump to conclusions regarding fibro/brain fog. Perhaps they would be better suited researching it before they make judgements.

5. Anxiety & Depression: If you are not a fibro patient or do not suffer from anxiety or depression, try to imagine hurting, 24 hours a day 7 days a week. Now try to imagine that even the most simple of things take you twice as long to complete as a person without this issue. Now imagine your mind is full of cobwebs because of fibro fog. Now imagine everything was turned up the the highest volume. You would be anxious and depressed too! I guarantee it! The stigma attached to both of these conditions alone is not exactly great. Add Fibromyalgia and its assorted co-conditions and I really do not need to elaborate.

5. Game Face / Putting On An Act : I think the best thing to sum up everything is to say ….. speaking for myself as well as basically every fellow fibro friend I have known…. we put on our best game face. Sure there are some “Whiny Winifred’s / Walter’s” in the crowd, but you get that in the general population. I have made many friends online with fibro and many with co-conditions such as MS, Lupus and other connective tissue and auto immune disorders and these friends are the bravest warriors I have ever met in my life. Two of my closest friends….. friends I truly believe God led me to….. are amazing when it comes to being supportive. Yet these two ladies have every reason to actually need support. Yet they give and give and keep on giving. I too find that by writing and supporting others it helps deflect and take my attention away from the monster within that creates this overwhelming pain and fatigue. For those that do not suffer from chronic pain and fatigue, when you see a friend who does that person is smiling and laughing, inside we probably are hurting very bad. But we do not want to be a “Debbie or Donny Downer” so we carry on.

Having Fibromyalgia and Chronic Fatigue Syndrome is difficult….. that being an understatement. Many of us have other issues to also contend with. Everyday our body dictates what kind of day we are going to have. Our day can vary from sleeping all day to being fairly productive and organized. Sadly, for those of us to the point of being disabled by this (and possibly other conditions), we never know what kind of day we are going to have and even if we have a good day we know we can not sustain this kind of day on a regular basis. What we can do is find a good Doctor and follow their protocol. I recently switched Doctors and have some hope. I will remain disabled, but I have hope of getting my pain levels down to a more tolerable level now. We can eat a healthy diet of as many unprocessed foods as possible, try to get as much regular sleep as possible and try to exercise within our capabilities. For those who do not have fibro, you can simply have compassion and try to understand what our world is like. Oh and one more thing, with Fibromyalgia and Chronic Fatigue Syndrome, there is never a “One Size Fits All” treatment, outlook or ability level for anyone. Until Next time, K.

I promise, I promise, a full length post is coming! Look for “Fibromyalgia, What Makes It Invisible?” in the next week or so! As a writer sometimes we get a moment of such inspiration at times it almost overcomes us. That is exactly what happened to me 4th of July weekend when Paul took a few days off for our version of a mini ‘staycation’. We were going on a gentle ‘outing’ and I was getting ready. I grabbed my notebook and started scribbling the words down so fast and furious they looked as if they were in Chinese or some exotic language. So that would forever be how this poem hit me. It hit me like a truck, just a bit gentler. It came out of nowhere but like a rock falling from a tree. And it stuck. For days the words would play in my head. Over and over I would play with the words and when I got them down on the computer it did not take much, but I sculpted it until it was finely polished and my proudest poem yet…. with a close second being “Freckle Faced Girl” (ALL PICTURES: COPYRIGHT: PAUL GLOVER PHOTOGRAPHY, All Rights Reserved).

How many of us have been shunned and forgotten by family and friends for our illness? I know there are many! I know! Albeit, I confess I have another situation I am also touching in this this poem….. something a decade old…. something you will have to wait for my book to read about. Yes, I will be baring all so any publisher that wants the most unbelievable story they will ever hear, hint, hint. 🙂 All the same, that is not the motive of this poem. The poem says it all. For those who have a chronic illness and have been left by ‘loved ones’ ….. an oxymoron in my opinion. Or even prejudged…. this happened to me with a (then) new, soon to be relative and imploded a certain relationship on my husband’s side of the family. All the same, my husband knows the depths of the kindness of my heart. He knows my illness. It warms my heart that my husband, who sees how hard it is to just get through a day, saw how I was treated by this person. I was ill and hiding it while I was there and yet because I did not ‘act’ the way this person thought I should, I was suddenly the ‘bad guy’. My husband saw right through it. Sad. However, one of the many ways the stigma of fibromyalgia affects those with this cruel and unforgiving condition.  This poem does go outside just my issues with fibro. My counselor says displaced families is an epidemic! So for all those who have been made fun of, doubted, lectured, pre-judged, called negative, not believed or shunned because of their Fibromyalgia or other hidden illness or those who have made a mistake and not given the grace of forgiveness even though you have made every attempt at reconciliation, this is for you:

DO NOT WEEP
BY: Kelli Coleman Glover

Someday in the future, when the time has come
Do not weep at my grave, you know me not anymore
Do you remember my name?
Do you remember my soul?
Your tears are a lie, an act at best
They are better spent on a bad movie script

Someday in the future, when the time has come
Do not weep at my grave, hypocrisy is sour
I made many mistakes but my heart overflowed with sorrow
Amends? I have made them
Sincere from deep within
Your heart would not accept it
You shunned every attempt to forgive

When I leave this earth do not pretend to be saddened
It is all an act as if you are on a stage
Your love left long ago when you were a young child
Before bitterness turned the glass into a gray and ugly haze

Any emotion you are showing is just for show
The years I reached out to try and mend
Your rejection once stung like nettles from a thorn
Until the nettles sting turned into numbness
So, please do not pretend

Time? It has run out
There is no second chance
Regrets? I have them
But I made my peace
For I made my atonement
Forgiveness? I received it from the Highest Power who gave the Ultimate Sacrifice
I also received mercy from those whose love is unequivocal

Someday in the future, when the time has come
Do not weep at my grave
Your tears are not wanted
The years spent on bitterness
Would have been better spent on forgiveness
You would have none of that
Your heart turned its back
Could you comprehend that hurt people, hurt?
It is not something set to do
Not a deliberate act
So please, no hypocrisy

Someday, somewhere in a time in your life
Maybe tomorrow, next week, next year or ten years gone by
You will need someone to forgive you
Believe me the hour will come to pass
Their heart will close off and be silent and bitter
They will not listen and give you a chance
Then you will know the nettles sting of a soul that turns its back

Mistakes? I made many
For life is a never ending journey
Perfection is not bestowed on any human soul
Only regret
Learning from our wrongs
Reaching out to extend our sorrow
Compassion from our fellow traveler
For we all are imperfect
Someday in the future, when the time has come
Do not weep at my grave
For you knew I carried pain
My body so ridden with distress
It was hard to face the world

You mocked my condition as others did
Though it was always there
You turned your head
I never knew a day that did not have pain
Nights that were sleepless with the raging monster within
You did not ever inquire
You did not even care
So go find a soul who needs a sympathetic tear

Find a long lost baby
Find a paupers tomb
Find a rock that is used as a marker
Find stone with only a name
No dates or information
I know there are souls out there who could use some compassion

For when the day comes
There are plenty of people who loved me for the person I am
They forgave my wrongs and opened their arms
They saw the woman who wasn’t perfect
However, a woman who tried her best
A woman who loved with all she had
A woman who lived in pain and hardship
And always gave a smile to her fellow man

If I had to do over
There are many things I would change
The list is very long
And not worth dredging the pain
The one thing I would keep the same
And this I know is true
Even though your soul has turned cold
I do not regret you

I love you but you love me not
Your tears are in vain, so please
When the time comes someday
Do not weep at my grave

A perfect song to go with the perfect poem? http://www.youtube.com/watch?v=hW8J4fWCeaY  ….. it just…. is.

Until next time, K.

PICTURE COPYRIGHT OF PAUL GLOVER PHOTOGRAPHY: ALL RIGHTS RESERVED

Where is that girl inside of me?
That colorful girl I used to be
The bohemian artist so full of life,
who could sing and write the day away 

Where is that vigor and unstoppable spirit? 
The dreams I had so full of promise
I was going to run wild and free
The world was mine, I had so much time

Where are the days when there was not pain
When energy was pouring out of me
I had so much to do 
I was going to sing and act
I was going to travel
I was going to write and create beautiful things
and read every book I could handle

They are all distant memories of a time long ago
Before pain and muddled thoughts were my reality
I remember a time when I was respected
Not a woman to be rejected
By an illness people do not believe is real
To be mocked and made fun of by those who you love
The stigma is cruel, if they only knew
The hours you weep in the long, lonely night
While you sit so still, not a sound you ignite

Where are my dreams, they have turned so cold
I don't even hope, I don't know how to anymore
I just try to make it through day by day
Hour by hour
Minute by minute
Hoping each moment may bring, less pain
Less ridicule
Compassion

Love that has been lost to a horrible lot
Pain please go away just for a day
I want to have quality of some sort
Dear God, I pray, are you listening?
I sometimes wonder

Instead of judgment, could you give me a hug
Instead of a lecture, an "I love you"
A gift without a catch
For I never get a break 
It would be a kind thing to do
It would make my day and though the pain would not go away
It would ease some stress, nonetheless
Because inside, I am the girl I used to be
For she has never gone away, she is safely tucked away
Perhaps a miracle, perhaps a cure

Perhaps someday, perhaps someday

COPYRIGHT PAUL GLOVER PHOTOGRAPHY. ALL RIGHTS RESERVED

First I want to thank everyone for their patience. I had both software and hardware problems in my already geriatric, very sensitive computer. I want to thank my husband Paul Glover who has so little free time as it is (a few hours some week nights and Sunday) and who basically sacrificed the better part of every single bit of his free time over the course of two weeks to diagnose and fix these problems. I could not ask for a better husband! I love you honey! So we shall carry on……..

There is nothing funny about fibromyalgia but I decided to write a post trying to find some ‘light’ things about fibromyalgia because I keep writing these blog posts and it just gets deeper and heavier. I decided I had to lighten it up a bit. It is not pretty and there is nothing funny about it but it is like the saying, “If I start crying, I won’t stop” so I thought I would throw some tongue and cheek in to break the utter sadness that would be our lives….. the lives of us that have this unforgiving bitch of a condition. So what could possibly be funny or light about fibromyalgia….. besides the fact that spell check squiggles or to put it another way does not recognize the word. Wait, that is not funny, it is sad and appalling. Save that for another post! Let me put it another way, the kind of, “look on the bright side” sort of attitude.

1. NEVER AN EXCUSE TO NOT HAVE YOUR DAILY PRAYERS: On the days Paul is not around to pull me out of bed and I must fall on my knees and push myself into a standing position, the Catholic in me kicks in and often decides to stay there for a few minutes and have some ‘on my knee’ prayer time. I am the type of Christian that prays throughout my day…. doing housework, driving (especially around this area where people cannot drive for anything!), cooking, etc. I have never been from the school of thought that prayer is this formal, pomp and circumstance undertaking but rather a conversation with God. However there is something nice about having occasional formal, on the knee prayer. So what better way to do that than while starting your day, while on your knees because you don’t ‘just get up’; you roll out of bed, on your knees and slowly push yourself to a hunched standing position.

2. IT IS A GOOD WAY TO FIND LOST JEWELRY AND SEE WHAT AREAS NEED SOME GOOD CLEANING:  Another great thing about starting your day in the ‘on the knees’ position is you often find that lost earring, lost bracelet it is a very good way to find those hidden dusty areas and find places that need extra touches in the cleaning department. You would be surprised where dust bunnies gather. Starting your day on your knees gives you a view that you would otherwise not have! So look around and see if you can find that earring and see where you (or likely your cleaning companion) need to reach that feather duster!

3. BRAIN FOG ALLOWS YOU TO KNOW WHAT PEOPLE ARE SAYING BEHIND YOUR BACK: This one can be a bit delicious! For years I have known people think I am a bit… ‘dumb’. My brain fog can be misleading. I worked in two call centers which are mud pits of gossip. I mean MEGA gossip. And it is not just MEGA gossip it is EVIL MEGA gossip. Things got back to me and the people that said them ‘thought’ they were safely tucked away. They were not. I knew. I knew exactly what was said and by whom. The bank was bad but the diabetic call center was like being back in High School. You had the guy with the ego the size of Texas who thought he was a Dr. You had the ‘prom queen’ who was just hateful to me…. and I mean hateful. You had the super diva. There were some *truly* nice people and to this day I remain FB friends with these people and wish them nothing but goodness. I actually did my job and did it well with hand written compliments mailed in by customers. Who does that anymore? And some were actual VIP people (to this day, though not bound by HIPPA, I still respect HIPPA and will abide by it) Because of my gut issues (my IBS was off the charts and dictated my clock to me, not vice versa), I ran out of FMLA time. They did *everything* they could to keep me but the FMLA time was exhausted and my DR. decided it was time to disable me out. I know rumors abound but I had the last laugh because the truth is, I know the petty crap that made that place toxic at times. It certainly did not help the precipitous turn my fibro took…. especially the anxiety. But Karma is a lovely lady and she works well. For all the people who thought I was as ‘dumb as a box of rocks’, little did they know I am aware of every rumor, every bit of gossip, every thing that was said. When you make that kind of horrible, hateful talk about someone with a disability, it comes back on you threefold. So luckily I can just sit back and chuckle. Not to sound like I did not have a friend….. I had many friends and was not the only one who felt the toxic vibes of the gossip that made that place so vile at times. There were many good people too. It is just sad the hateful trouble-makers stand out. Another laugh I got a few weeks ago is at the bank. My aphasia is worse than it has ever been. My comprehension, however, is fine. My writing, intact. I was trying to talk to the ladies that work at the bank I normally go to and having an exceptionally bad day. I apologized and though I know they were trying to be nice, they said, “You are doing very good Mrs. Glover” as if they were talking to a little old lady of 90 years old while patting her on the head. I wanted to just break down and cry. I wanted to scream, “I am fine, inside! I can speak, inside!”  In this mess of “Um, Er, Ummm…..” is a woman that knows exactly what she means, can type it out and think it out just fine. Verbally, however, it just does not always and in fact rarely does it come out as it should. Nonetheless, I can laugh because I always know if I am being talked about…. I always, always know. And to squash talk that I may have been or am ‘over’ medicated? No…. I am LESS medicated now than I have ever been. I am in MORE pain than I can bear, but medicated I am not. I don’t have to ‘prove it’, just setting the record straight…. another one I can just sit back and chuckle about.

4. MY HUSBAND AND I BECOME THE “GREAT AND POWERFUL MR AND MRS G”: It is true! It goes like this: Paul has to help me up many mornings. Paul has to accompany me to a lot of Dr appointments and pretty much anything that requires me to…. well, remember anything. Paul also has to fill in about every 5th word of my sentences. We are a duo, a pair, a set. We don’t do ‘alone’. One would think he is reading my mind but the sad truth is he knows me well enough to just know what it is I am trying to say. He has seen me go from a somewhat ‘moderate’ case of fibro …. someone who had fibro but could function ….. to someone who literally has to plan every single activity of my life around my condition. It dictates my life, not the other way around. While I cannot prove it, I truly feel in my heart and soul, the toxic environment of the last call center (stress as well as the gossip pool) and the day I flipped my car (a tire blew and I did a total flip, as in was on my roof and then back on my tires flip) and followed by one mean mother of a MRSA infection in my leg. Add the death of both my parents within a 3 year period and my fibro went into a tailspin. One other thing: I have tried to be perfect for people in my life. It is impossible. We are human beings and perfection will never exist. I have literally made myself a nervous, sick wreck over this. Paul and a few very good friends all who love me unconditionally have made me realize; people that truly love and care about me will accept me as I am, mistakes and all. Letting this concept that I must be perfect go had eased my stress level by multitudes. 5. IF YOU DO NOT LAUGH, YOU WILL NOT STOP CRYING….. YOU ARE THE STAR “VILLIAGE IDIOT”:   Who has that ‘pain disease where you hurt all the time’ and ‘My friend/ Aunt Ida/ neighbor/ co worker/ distant cousin/ 3rd cousin 25 times removed’ has that! And “I think I have that too because my leg hurts and I get tired after working eight hours (standing on my feet) and oh, I have a rash on my arm…. do you think I could have it too?” Um, yeah. I will just leave that one be. *Insert laugh and if I could I would roll on the floor*.

6. YOU ARE THE FORGOTTEN, INVISIBLE ONE AND YOU JUST GOTTA ROLL WITH IT: This one may be a bit hard to follow, but work with me. My husband loves me without condition. My Granddaughter loves me, without condition. My Daddy and Grandma loved me, without condition and my Uncle David loves me, without condition. My friend Nickye loves and supports me, without condition and my colleagues and teachers in The Spirit Watchers care about me, without condition. I have numerous family members and friends that love and care about me. I have endless church family that pray for me and support me. I am so, so blessed! The one area, however, I feel a bit overlooked is my fibro. Now bear in mind, I do not expect to be treated like a prima dona super diva. It would be, all the same, nice to have my fibro recognized and acknowledged once in a while. Sometimes it would be nice to be asked, “How is your fibro doing?”  This is one reason I surround myself with other warriors in this condition. I have family / friends that post endless jokes on Facebook and post awareness posts about other health conditions (that affect others close to them, like I thought I was)….. but never fibro. Never. I did ask during my fibro awareness post for a few people to share and they did. I have to laugh……. silly little comics are more important than a condition that is so painful…. that causes so much mental anguish….. that causes so much inner turmoil that the suicide rate is eight to ten times higher than the general population! This is serious here! I am in no way, shape or form laughing at this….. I laugh because grumpy cat trumps pain that is so intense it keeps you awake night after night after night until your body collapses from sheer exhaustion. Silly craic trumps people having zero quality of life…… though these same people will raise awareness for other conditions that affect those they also love. Paul and I have had minor quarrels (he agrees but does not feel he is heard if he raises the subject) because I have questioned this: how can someone say they love me, raise awareness for one condition for one they love but not for mine? I mean I am not asking they stop their life and turn their page into a shrine for fibro but I have laugh a sad laugh when jokes trump the utter hell that would be my life! It would be nice if just once in a while, a fibro awareness message was shared. That is the only way our voice will ever be heard! So it is a ‘laugh’ but a sad laugh. A ‘shake my head’ sort of laugh. Like the title says, if I don’t laugh, I won’t stop crying.

 7. HAVING TO LAUGH OFF ALL THE BONE HEAD, INSENSITIVE COMMENTS AND JUDGMENTS THAT PEOPLE MAKE: “I just push through it”. “I am tired too…. maybe I have it”. “I wish I could take a nap everyday”.  “Wow, it must be nice not to work”. “Just exercise more”. “But you don’t look sick” and on and on and on and on. I even got told by someone that they ‘never ever turned the TV on during the day…. unless there was a bombing, school shooting or natural disaster’ when I posted something about my one hour…. yes, just one hour a day I watch “General Hospital”, my one little guilty pleasure each day. Make note if I were blessed enough to be able to work I would still DVR this show and watch it at night/ on the weekends, etc. I also found it ironic that this person named “Good Morning America” as their favorite show…. a show that comes on during the day! Yeah, people make all kinds of bone head, insensitive comments. None of them have walked in my shoes. Until they do, they can reserve judgment and keep their opinions silent. I know in my heart of hearts what I am capable of and I owe no proof or explanation. I know the hell I live…… having people questions it and degrade it just adds to the anxiety, so I changed my attitude and started laughing at the ignorance people have regarding fibromyalgia.

While there is nothing funny about this horrific condition, being able to laugh at certain aspects of this day to day hell we walk helps us maintain some sense of humor thereby maintain our sanity. When you hurt 24/7, have insomnia, gut issues, chronic migraines, brain fog, sensory overload, stigma and many other issues your life becomes very pigeon holed around your illness because your illness is so magnified, every event from grocery shopping to birthday parties must be planned with the precision of a military operation. To make matters worse very few people in our life seem to fully understand. In fact there are those past and present that have talked behind our backs, made fun of us and even went as far to say our illness is ‘all in our head’ or ‘not real’. Karma is a lovely lady and that is all I will say on that. We have to have humor to have a release and an escape. No, it isn’t funny. Things like this never are. All the same, laughing at times can be good medicine. So we can choose to take aspects of this hand we were dealt, find some of the humor in it and let that serve as a release in the times we need it the most.

One last thing. I would like to take this chance to add that anxiety and depression are two major battles fibromyalgia patients must battle along with our laundry list of other issues. If you have other scars such as troubles from childhood (and yes, I know ‘we all’ have these issues to some degree). All the same, I have some demons that will not be put to print until my book is written. They are that bad. The other demon I battle is the damage from my Mothers alcoholism. Her drinking took a very bad turn about the time I was ten years old. I would like to encourage my “Hitting The Wall” readers to read my latest (and prior) posts regarding the show “Nashville” and my reaction to their incorporation of one of the characters and her Mothers alcoholism. You can read these posts at http://bothsidesnow.paulglover.net/  As always, Thank you so very much and God Bless. Until next time. K.

PICTURE BY: PAUL D GLOVER: ALL RIGHTS RESERVED PAUL D GLOVER PHOTOGRAPHY

I wrote a little poem. After my 5,000+ words post on Fibro awareness and all the research that entailed, my brain…. and all its fog…… needed a little break. So in anticipation of my next full post, “The Lite Side Of Fibro: If You Don’t Laugh, You Won’t Stop Crying”, I decided to let my fingers go to town and write this poem.

PICTURE BY: PAUL D GLOVER: ALL RIGHTS RESERVED PAUL D GLOVER PHOTOGRAPHY

I do dabble in poetry and when I do it is usually pretty heavy. Typically therapeutic, poetry has been a good catalyst for me in many ways to sort out and deal with pitfalls and tragedies in my life. I believe fibromyalgia or the taking of ones ‘spunk’ would count as a ‘tragedy’ so here you go,

THE MONSTER IN ME

BY KELLI GLOVER

The Monster Inside Of Me

What is this monster that lives in me, it steals so much of my life away and causes misery
It comes to me as pain and fatigue, it comes as a stomach crushing with a fit of rage

It plays on my skin like pins and needles, it grabs my head as if it were in a vice grip on a carpenters table
What is this horror story my life has come to be, of nights without sleep but I need sleep more than I ever have, will slumber ever come?
Now I have a repeat nightmare to chase away: Will that ever go away?

What is this light so bright and smell so overwhelming? Every fiber I feel sends shocks up my skin that send me yelling
Sounds and smells, Bright lights and crowds; it is all too much to take, when your senses have no brakes

Many family and friends think I am attention seeking , if they could just be me for a day, they would know the true overwhelming pain and collateral damage this monster is wreaking
Judgment and stigma would be removed, if they only knew what it is really like
To sit up in the long hours of the black of the night; alone and in pain but not a noise I can make

The time I spend curled in a ball with a hot pack as my best friend
My partner in life who shares this hell and carries the weight of life’s responsibilities and demands
This monster dictates my life and I should not have to prove it, but alas! I do, I have this horrible condition and I hope it never finds you!

What is this rasp upon my voice? What are these aches in my fingers and toes? What is this ache? Down my arms they go! Oh No! The dreaded flare!
Now the pain is amplified and the senses multiplied; the pain is horrifying to the point you want to die. No hope left in your soul and you have nowhere to go.
As if the monster wasn’t enough, it flares its ugly head and gets worse
It feels as if you are walking with heavy balls chained to your legs, it feels as if you have been beaten to a pulp

Will this monster ever ease, will the stigma ever stop? Will there be awareness and compassion and a cure, I pray! I hope and pray that someday, someday….. this horrible monster will go far, far away
For inside me is a girl with a colorful, bohemian twirl
I want to frolic in fields of flowers and dance in the sun
I want to hike up great mountains and chase the sun into the night
I want to play in the ocean, running in the tide

If my body could do what my soul is feeling, I would be unstoppable
Unshakable
A firecracker
No one could keep up with me

But the monster wins each battle, each and every time
It is a force I cannot reckon with so I hope in time,
There is cure, a treatment ….. something to help
Because I have a lot of living left to do, the monster may win the battle, but it will not win the war

PICTURE BY: PAUL D GLOVER: ALL RIGHTS RESERVED PAUL D GLOVER PHOTOGRAPHY

Until Next time, K.   

It is here! It is that one day for ‘us’…. those of us with the ‘invisible’ illness… condition…. disease….. however you want to define it; that which would be known as, fibromyalgia. As a near twenty year veteran of this soul-crushing malady, what would I want to choose to make people most ‘aware’ of if I had center stage and full attention of the world? If the world were my audience and I had the biggest bullhorn known to human-kind… what would I make them aware of regarding this…. this….. fibromyalgia! This is the thought I have been kicking around and that is the direction I am taking this blog post. I have the attention of billions of people who did not know much, if anything, about fibromyalgia! Here I go!

• I WOULD CHOOSE TO MAKE PEOPLE AWARE:  24/7,  NON-STOPPING PAIN: Pain is the obvious symptom, forefront of fibromyalgia. My first symptom, many, many moons ago was numbness in my hips. As a new mother of my beautiful, amazing (youngest) infant daughter, I did not realize that the very thing that triggered my fibromyalgia; getting the chicken pox aka the Varicella Zoster Virus, at 18 weeks pregnant, and then getting the shingles (same virus) 4 weeks later would leave me “never feeling the same again”. I have said this before and I will say this again: I in no way, shape or form blame this on the pregnancy. I would have gotten the chicken pox pregnant or not. The fact that I was pregnant only served to worry me sick that I had in some way harmed my unborn daughter. The running joke now… because she is as close to perfect as it gets is…..  If it wasn’t for those testy chicken pox, she would be giving Sheldon Cooper (“The Big Bang Theory”) a run for his money. Instead of a gifted double majoring (College) flute player, she would be a super nuclear scientist in some lab somewhere. Naw, too boring. I will take my delightful, colorful, talented daughter just as she is 😉 (and you all know this is a joke!…not that she is gifted…. that I would take her any other way than just as she is… back to the point). The truth is, I got the pox, I was more worried what they would do to her (nothing), and they are what started the fibromyalgia (I was never the same after getting them). In any event, the pain that we with fibro have it…. it never stops. It sometimes lessens, but it never goes away. If you are a non-fibro patient reading this, imagine having a headache, flu or being sore after exercising. Now imagine that never stopping. Never. Not a day. Not an hour. Not a minute. No relief. Ever. That is the life we lead with our pain. It goes on and on. The medications we take? They do not make the pain go away, they simply dull it….. a little bit.

• I WOULD CHOOSE TO MAKE PEOPLE AWARE: THAT I HAVE A HEADACHE EVERY SINGLE DAY:  I would say that about one third to one quarter of my month would be labeled as bad headache days. The rest of those days I just get ‘day to day dull headaches’. I do, in any event, always have a headache (note I did not say ‘get’ because there is no get when there is no beginning or end… it is always there). It is rare to find any given moment in time when I do not have some form of headache. Whether it is small or pounding, my head always hurts in some fashion. It does not matter if I have gotten a good amount of sleep or if I am sliding by on just a few hours, my head will be hurting. Most fibro patients have the same problem. Headaches are one of the most common shared problems among those of us with fibro. While I understand headaches are a very common problem in society as a whole, this is a very good common denominator to share with people. Imagine as a normal person struggling with headache you are also aching all over, having issues with your gut, every light is too bright, every smell is overwhelming every single thing you touch is over stimulating and you have to watch everything you eat because even the mildest of spices sends your taste buds into total over-reaction. Now imagine all this is going on and you are nervous and anxious. On top of this you cannot sleep properly. To make matters worse, you are being labeled and judged. This is not just a ‘run of the mill’ headache anymore. This is a headache on top of a roaring, angry volcano. Some of the headache days are migraines (I had an eight day string up until just a few days ago). I average about three to eight migraines a month. Migraines are bad enough alone, but add everything else and…. well, I need no further explanation.
  
• I WOULD CHOOSE TO MAKE PEOPLE AWARE: THAT MY ‘GUT’ IS ALWAYS HAVING ISSUES: Most fibro patients suffer from Irritable Bowel Syndrome. I will try to keep this from being a ‘TMI’ moment, all the same, I would be doing a great disservice if I sugar coated what a messed up middle area I have. Nearly every fellow warrior in this condition of catastrophe can attest. I don’t know that I am acquainted with a single fibro friend that does not have IBS or other stomach/intestinal issues. Many have things that are tangible (show up on scans, blood tests, etc.) such as ulcers, diveriticulitis, Chron’s, etc. Nausea is very common and in fact I take anti-nausea medications on a daily basis. Some symptoms overlap. For instance my nausea can be worsened by headaches or disequilibrium (related to sensory overload) thereby making the nausea coming from more than one source. So along with pain and headaches, the gut gets its share of the attention.           
• I WOULD CHOOSE TO MAKE PEOPLE AWARE:
  THAT MY SLEEP PATTERNS ARE UNSTABLE , MY SLEEP QUALITY IS POOR AND MARKED BY SIGNIFICANT INSOMNIA: I am, at times, a walking zombie. I know years back there are those that thought I was ‘over medicated’ and there were those in my life that talked behind my back regarding this matter (did they really think I was not aware of this?). I was not over medicated then and I am even less medicated (and in much more in pain) now. Then, now: it stinks! I do not go to bed after the 11 PM news and go to sleep for the night like 90% of the population. I do not go to bed and read a good book until I start drifting off to dreamland (I am thinking of every TV show in existence when wife is in bed with her book and husband is talking over their current situation for that episode). No, 99% of the time I fall asleep on the couch. I have an amazing husband who rubs my neck, shoulders, arms (the last several months my arms have really been giving me high pain levels), or he does reflexology on my feet. ‘He’ is by far my most relaxing ‘medication’. At some point I transition to bed. Sometimes my transition is when he is going to bed between about 12 midnight and 1 AM; other times it can be as early as 2 AM and as late as 6 AM. If it is any later than 6 AM, I do not usually bother going to bed or if I do, I just lay on top of the comforter with a throw rather than ‘get into bed’.  I wake up every few hours wherever I slumber. Always. Sometimes, depending on whether my neck is not doing well or if I am getting a headache, I have to come back to the couch and try to finish sleeping the rest of the night in a sitting up position. I never sleep straight through the night laying in a bed. I am going to repeat that. I *never* sleep in a bed for a full night, go to bed, lay down, sleep for several uninterrupted hours and awaken in the morning with maybe one bathroom wake up in the night. Unless I am at the point where I have hit the wall with complete and utter physical exhaustion, going to bed and sleeping the night through does not and has not existed in my world for many, many years. Now, of course I have a pesky recurring nightmare that wakes me; heart racing, adrenaline pumping and very glad to ‘know it was all just a bad dream’. I need to call the “Dream/Nightmare Busters” I reckon. Nonetheless, unstable sleep patterns marked by bouts of insomnia are the rule and not the exception (I am typing this at 5:07 AM and have been awake since 2 AM) . This latest ‘addition’ of my recurring nightmare (most likely due to some repressed memories I am now, well, remembering from my childhood) are making getting quality sleep even worse! I won’t elaborate on this other than to say it just adds insult to injury….. I have a tough enough time attacking the sleeping monsters. Now with this recurring nightmare, it just adds one more obstacle to getting some good zzzzzz’s.
• I WOULD CHOOSE TO MAKE PEOPLE AWARE: WE ARE  ALSO MORE PRONE TO DEPRESSION AND ANXIETY WHICH INCLUDES EXTREMELY ESCALATED SUICIDE RATES:
  I, along with most of my sisters and brothers in this walk known as fibromyalgia, suffer from depression and some of us also suffer anxiety. If you hurt every moment of every day, did not sleep for more than two hours at a stretch, had a stomach that was either upset, cramping or causing some sort of intestinal ‘issue’ aka IBS (meaning you could not be far from your bathroom) and if your senses were totally overloaded meaning everything from light , smells, sound, tactile, etc were turned up to the top, super max ‘volume’……and to top it all off you were labeled as ‘having an invisible illness’ or being ‘negative’ because you choose to inform and raise awareness, I can guarantee, you would be depressed too. I have not even touched on how the serotonin in brain and how that relates to people with fibro…..at least in most people with fibro (because thinking on it is shifting to it being a neurological based condition rather than in the muscles themselves) so that means the serotonin is likely off kilter. If you add all the sensory overload, you also have a greenhouse for anxiety. Most people I know who have advanced fibro have both depression and anxiety. I don’t think it needs further explaining. All the same, it does bear mentioning with the stigma we already have with this condition, having depression and / or anxiety added just makes it all the more bleak. One study I looked at,  on “Reuters” cited, “Danish researchers looking at death rates in women diagnosed with this chronic pain condition found that the risk of death from suicide was ten times higher than in the general population.”
  • http://www.reuters.com/article/2010/07/16/us-fibromyalgia-suicide-idUSTRE66F3JJ20100716  Another study in “Phoenix Rising” http://phoenixrising.me/archives/12027  cited suicide rates as being eight times higher. Though I know I cited this in my last blog, this is sad but while there are a lot of ‘studies’ as in college research papers and fellow bloggers, there are not a lot of real hard core studies like the Danish study and Phoenix Rising. 🙁 We need more studies! People are dying BECAUSE of this…. maybe not FROM IT but they are DYING OF IT in a round about way! WAKE UP! BE AWARE!  And while flattered to have found my own blog hit number 2 in the google search (looking for suicide rates), it is sad that more people are not A*W*A*R*E enough that FIBRO patients are THREE TIMES more LIKELY to COMMIT SUICIDE Than the general population!!!!!!! (*thirdage.com).
  • I WOULD CHOOSE TO MAKE PEOPLE AWARE: BRAINFOG:
    Imagine going about your day. Imagine going to work, cleaning your house, tending to laundry, running errands, cooking dinner and even partaking in things you enjoy…. hobbies, music, etc…. only everything you do is through a dense, soupy fog. Every thought you think is muddled. You cannot find the words… though you consider yourself the luckiest woman alive because you have a husband who understands this so well and can fill in a word for you when you need it on a dime! Imagine everything you do…. from the smallest, most minute task being a challenge. Welcome to the life of BRAINFOG/ FIBROFOG!

  Now I told you I was collecting theories here for a later post so (theory check) in place for later.  First and foremost, NO, WE ARE NOT OVER MEDICATED! I want to nip that one first off the bat. I know a lot of people love to ‘think that’ but sorry to spoil your theory… it just is not the case. In fact my fog is worse than it has ever been and I am less medicated now than I have ever been.  In any case, my Dad was the Post It king! He had post-its everywhere and it worked for him! For true ‘absent minded’ people like my own husband…. things like post-its and other reminders are great! For true brain/fibro fog, it is a totally different world! I can tell you birthdays of three of my closest friends in school….. May 20th and April 5th for two grammar school friends and November 19th for my best friend in High School. My step brother is a Halloween baby and my step sister checking in a few years later and a week or so shy on October 23rd, I believe or very close. And no, I did not go look it up on their Facebook accounts. In fact three out of five of those people do not even have Facebook and / or I have lost track of them. My long term memory is great! Fabulous! Finding a word I need for my next spoken sentence….. finding what I need when I walk in the room! Reading! Oh do not even get me started on reading! I am desperately trying to get back this one thing fibro has taken from me! Fibromyalgia has robbed me blind! It has taken so much from me! I can read online until the cows come home and plow out 3 blogs with new posts every ten days. However, sitting down and opening a…… book…….I do not know what it is about it. I read five, maybe ten pages top and I am asleep or get distracted or…. or…. or…. or________.? Anything, really. I have already typed over 2,300 words for this blog post and I am about 2/3 done. I have hundreds of more words blazing to fire out of these fingers. All the same, you sit me with a gorgeous, wonderful book and …. insert that cheesy Clint Eastwood “Spaghetti Western” music and the book and me having a stand-off at high noon!If fibrofog could just give me reading back, I think I could live with having to have Paul fill in every 5th word to running interference when even the smallest things don’t go right. A perfect example is the Friday night he came home from his 2nd job and found me sound asleep with my dinner, uneaten, on my lap. I was sitting straight up on the couch and my dinner was right there, cold and uneaten. You know when people say, “Just push through it!” Well see, that is what happens to me when I ‘push through it’. I ‘pushed’ too hard and by the grace of God the pot of Mushroom Stroganoff  did not burn up! That is why I cannot push through it! I literally collapse in exhaustion. But see, I am not ‘you’ or ‘you’ or ‘him’ or ‘her’ and this is what people need to be aware of!So fibrofog / brainfog is very frustrating and time consuming. I would estimate I spend a good 2 hours a day just over compensating for the obstacles that brain fog throw at me. In spite of the ‘fog’, I do what I can to maintain and do the things I love. Though I cannot work anymore, I try to remain active in my hobbies. I am trying to find a way to get back to the 70+ books I want to read and I am a very stubborn person so I am sure I will find a way! I am also intent on making people aware about this monster aka as Fibromyalgia and Chronic Fatigue Syndrome.

IN SPITE OF IT ALL, I REALLY DO HAVE A WICKED SENSE OF HUMOR AND DO WHAT I CAN TO MAINTAIN THAT! AFTER ALL LAUGHTER IS THE BEST MEDICINE!

• I WOULD CHOOSE TO MAKE PEOPLE AWARE: WHEN WE GET AN EVERYDAY VIRUS IT ATTACKS US TWICE AS HARD AND TWICE AS LONG:
  Any cold, flu bug, any little bug that is going around…… if someone with (especially progressed) fibromyalgia. I know people think I am paranoid about ‘germs’ but if they knew…. oh if they knew. My last ‘ordeal’ was front and center of my Facebook in tandem with a blog post as I was having some ‘all-nighters’ due to not being able to sleep because of being so uncomfortable from the cold/flu virus that set in with my husband as a ‘mild, one-day cold’. Mild cold for him = 8 days of utter misery for me. On top of it, I had an abscessed tooth which actually sent me to the Emergency Room one evening.
• I WOULD CHOOSE TO MAKE PEOPLE AWARE: ABOUT FLARES  Probably the worst of the worst thing about having fibromyalgia is when you ‘flare’. All a flare really is is what you already have; AMPLIFIED!!!!!!!! Your body is saying , “Hey there! You over did it!” In any event a flare simply means; we with fibromyalgia pushed ourselves too hard. We over did it. We just plain should not have done whatever it is we did to the extent that we did it…. or at the very least we did do what we knowing good and well we would, well, flare.  Sometimes we make that choice…. because it means we have gotten out and LIVED. Going out once or twice a month for three to four hours (after careful, calculated planning and a lot of resting…. believe me, because when I know I have plans, I do rest and take other measures… no errands or appointments the day before, only THAT activity that day, etc)…. anyway, resuming…. when we go out ONCE for three or four hours, and then flare for a week, it does NOT mean we can work 8 hours a day, 7 days a week. Think about it. We would be in the hospital with exhaustion in a matter of days. When I flare, I usually walk hunched over like a ninety year old woman for the first 1/2 hour of the day. Every inch of my body hurts…. worse than just normal fibro pain; intense throbbing pain. My intestines are in fits and I cannot go far from home because I need to be near my ‘facilities’. My last flare had me in an IBS flare for eight days and feeling like “Cousin Guido” took the brass knuckles and gut punched me a few times.  My head pounds. I generally ‘crash and burn’ (the night Paul found me sitting upright, sleeping sound with my uneaten dinner on my lap is the perfect example). My fingers ache…..I mean ache to the deepest depth of the bone! My arms ache and throb. I swear, my hair hurts! I get hoarse. You can always tell I am flaring if I am hoarse! This has caused me more grief in trying to plan calls to people…. especially my Uncle David in California!…. because I literally have no voice! I have called Uncle David and literally had my voice disappear over the coarse of the phone call! So who says this is ‘all in my head’…. how do you fake that one!? My muscles knot up. You can physically see them….  how do you ‘fake’ muscle knots? Paul is amazing. He just rubs and rubs and rubs them until his fingers are sore. When his fingers get sore, we have a little plastic three prong massage device he uses to apply pressure to the knotted area.
  

  PAUL USES THE AIDE OF “MASSAGERS” TO KNEAD MY MANY MUSCLE KNOTS…. ESPECIALLY IN MY NECK AND BACK: THESE ARE TWO OF MY FAVORITES. HIS HANDS QUICKLY GET SORE SO BY USING THESE TO APPLY PRESSURE, HE CAN HELP BREAK SOME OF MY MANY MUSCLE KNOTS WITHOUT CRAMPING THE MUSCLES IN HIS OVER-WORKED, TIRED HANDS. THE MAN IS A SAINT!

  A lot of people assume ‘we’ are over-medicated at the time of a flare when usually just the opposite is true. I tend to back off my meds as much as possible when I know I am going to go somewhere that requires a little extra ‘physically’, hence, setting me up even more for the dreaded, flare. Assumptions are just as bad as any illness.

• I WOULD CHOOSE TO MAKE PEOPLE AWARE: ABOUT THE JUDGMENT AND STIGMA WE CARRY EVERYDAY AND EVERYWHERE WE GO.
  Having fibromyalgia is so much more than just hurting, chronic headaches, brainfog and depression with anxiety, etc. As if all of that were not enough, we are the “Lepers” of current day! We are the most judged illness and the only illness I know where an actual Facebook page *was* (I say was because we got two… not just one but two name changes for this ignorant troll deeming himself a ‘hypnotherapist’). It took a lot of us sending in numerous reports on a daily basis. I have nearly 400 Facebook friends and I would say nearly 1/3 of those have pain issues! Yet trying to get this page reported was like fighting a lone war (well not true there were over 100 of us ). This man was just mean. Yes! That is sure the way to get my attention! Say my illness is all ‘in my head’ and that I am a ‘whiner’. Good job….. not! No, he just proceeded to piss me off and in the process make me for fervent in my quest with Facebook that if a page existed that said, “Stop the whining, diabetes is all in your head!” or “Stop the whining, cancer is all in your head!” that those pages would be yanked in a nano second. However, Facebook *finally* saw it for what it was, yanked it, the guy had to change it twice and I won’t give him credit, so I will *not* be saying what it is called, but it is not demeaning, though if he were the *only* health care ‘provider’ on earth, I would go without because anyone that is treating someone and they treat their condition in such a disrespectful manner is not ethical in any way, shape or form.      He is just one example, sadly there are thousands more like him! People that think we are ‘lazy’, ‘over-medicated’ , ‘whiners’ who just ‘don’t push through it’ and need to ‘tough it out’. OK, well, you can pay my next round of hospital bills when I ‘push through it’ and collapse. I am busy trying to figure out how to pay the co pays for the over $150K I am still trying to pay off with the emergency surgery and various tests (CT, MRI’s, x rays, etc). I do NOT want pity! I just want fairness and recognition in my illness. I want people to know my pain, shattering fatigue, flares, IBS and other gut issues, headaches, brainfog, sensory overload, etc. are real and are absolutely soul-crushing! People are taking their own lives… in women up to 10 times over the average rate! If that is not real, I do not know what is! The stigma associated with this must stop! It stops here and it stops now! So me and my bullhorn would say all of that and probably a whole lot more. Albeit, if I had the world’s attention….. knowing how people’s attention spans work….. I would want to get in the important things.  Now what can people do, really? One thing hit me the other day, this being graduation season. I was reading about Mayim Bialik (formerly “Blossom” now known as Amy Farrah Fowler on “The Big Bang Theory”, mine and Paul’s favorite comedy… absolutely inspired!). In real life, like her character, she has a PHD in neuroscience. Her dissertation was an investigation of hypothalamic activity in patients with Prader-Willi syndrome. Now what does that have to do with fibro? Nothing. However, dissertation did get my wheels a turning! Why aren’t college kids all over fibromyalgia? It is moving from the school of that that it is a muscle issue (look for a later blog post on this) to a neurological disorder! I searched and found that companies are willing to write a dissertation for you if you pay them. What? I thought the point of the sacred dissertation was to show them “what you’ve got!” Why would you pay someone to write a dissertation for you! I also found a few…. that you could pay to view. Why would I pay $25 to view something containing information I can get on Google for free? I did find one from 2007… and I do not say this to be mean, but I could have written it! Seriously, I thought, “This is the sacred dissertation” ? It was adequate, but it just looked like a ‘term paper’ as we called them back when I was going to college; back when dinosaurs roamed the earth and we walked a mile to school in the 100 degree heat, barefooted. It was also lacked passion, in my opinion. One other thing…. it cited a study: with ten women. The urine of ten women. Really? Ten women? The writer is going to do a study using ten women? Real, true and tried studies involve hundreds of people. As I have said time and time again, while women are the highest percentage of fibromyalgia patients, men, teens and children are not immune. Nonetheless, even if she was choosing to just use women as a control group, no good study can come of just ten women. Then to further add she claims depression as the underlying factor. I am insulted. I propose …. no I plead! We need studies! We need college students to embark on true, from-the-heart dissertations. I would love to Google search in two to three years and find pages and pages of wonderful, informative and well thought out dissertations. So I make a plea to parents of kids embarking on a career in medicine, psychology, physical therapy or anything even remotely related: I challenge you or your rising college student to do their dissertation on fibromyalgia…. in any manner they choose to word or present it. It is with continued studies and awareness that then and only then will a CURE finally be found! And that is the golden ticket all of us with fibro wish for on our wishing star each and every night!May 12th is not just Mothers Day and though Mothers Day is very important (I am a Mom, and I know all too well how precious any contact…. a call, a text….. anything is cherished on that day), it is also a day for us; those suffering from this life-sucking parasite known as Fibromyalgia/ Chronic Fatigue Immune Deficiency Syndrome. Won’t you please take a few moments in the next few days to become enlightened to our lives, or lack thereof. We live life on the sidelines for the most part, plucking bits of happiness where we can find it. Our isolation is compounded when we feel left out, labeled as ‘negative’ (when we just need to vent)…. think of a pressure cooker or boiler needing that valve to release some of that pressure so it does not explode. We need to be the ones to say what we ‘can and cannot do’. Please do not say, ‘Oh, well, you should not be babysitting/ going there/ doing that, etc because of your fibro’. We know what we are capable of and we are our best guides for what is best for us. I feel so alone and isolated more than anyone would know. So give it up and be aware! Take a stand and become informed! You never know when someone you love or worse could end up with a chronic pain disorder. Happy Mothers Day to Moms and to my fellow travelers down this long, grueling and lonely road, Happy Fibromyalgia Awareness Day, 2013! Godspeed to each and everyone of you!  I now implore you; BEG YOU to watch this short ( like 5 minute video), all of it, please. If you do nothing else for me or anyone in your life you may know now or sometime in the future that suffers from Fibromyalgia and/ or Chronic Fatigue Immune Deficiency Syndrome (I suffer from both, to be technical here, something I am not sure I have ever clarified). The singer is quite ‘pitchy’, but it does not matter for this song had me crying within two minutes flat. I don’t mean just a few tears, I mean that deep down sobbing kind of crying that comes from the gut. My nose was running and my face was as wet as if I was in the shower, but I was motionless. My feelings, thoughts, words were captured by someone else! No, this singer isn’t going to be signed on for the next contract at MGM or RCA, but what this song did for me was more powerful than anything Beyonce , Pink and Adele combined could do! Please watch, you will see why! Though the video was made for Fibromyalgia Awareness Day, 2010, it does not matter. Little to nothing has changed since then. Watch and be part of what we live for a few minutes:

http://www.youtube.com/watch?v=1VAB1FI4CpY

Here is one more I found later….. it is also SO worth the watch!  http://www.youtube.com/watch?v=StXhLLiC63k

Until next time, K.