Chronic Pain And Invisible Illness,Where Is Our Month?

awareThe 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 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 MonthNationalMonthHere 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!NationalMonth3On 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....

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!

Sorry… Could Not Resist!

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

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!

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

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

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?

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) 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 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 List May As Fibro Awareness Month, I Have Been Dancing The Fibro Dance Long Enough To Know That is a Good Gesture At Best

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) 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 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!



Avoiding Toxic People

toxic1When 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!toxic4We 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.




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’. toxic5In 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.


Discrimination And The Bully


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’ 😉

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


Until next time, K.