I enjoy curling up in my recliner, okay that is a stretch but I do “enjoy” being very uncomfortable in my recliner sipping on my coffee watching Dr. Phil.

He constantly remarks that “You cannot change what you do not acknowledge.”

Today that quote resonated in me in a way that it never has before and I have decided to step out on a limb today, hell what do I mean a limb, I intend to jump off a cliff feet first.

Now please remember this post is my thoughts and beliefs and not meant to be disrespectful to your thoughts and beliefs.

One thing life has taught me is that my perception is not someone else’s reality and someone else’s reality is not my perception. But my perception is my reality and their reality is their perception.

Confusing enough for you?

I have written some post in the past that I have included a disclaimer and a word of warning, maybe I should this time but I won’t, because it’s too important.

I’m not good with words or expressing myself but I hope that you will read this with an open mind and accept it for what it really is, my perception of my reality.

The older generation in my family was always saying, “It’s time to wake up and smell the coffee.”

So get you a cup, and settle back or leave while you still can.

“You cannot change what you do not acknowledge, what does that really mean? What does it mean to you?

I lived with an illness silently and alone for almost 32 years before being diagnosed with a disease only to discover the S.O.B. was an INVISIBLE DISEASE, WHAT THE HELL DOES THAT MEAN?

How the hell can any disease or illness honestly be invisible? Lucky me, right!

I was diagnosed with Ankylosing Spondylitis in 2002; it would take five years or so before I had the courage or was so desperate that I would seek out others with this disease. You know how it is, Misery loves company, and there is strength in numbers. I didn’t want to do anything but blend in and see how others coped with something I could no longer cope with. I didn’t want to feel alone anymore.

Looking back now, I will admit there are times that I wished I had not taken the advice of my doctor and seeked out the AS community, but the truth is, this community has given me myself back, taught me what unconditional love means and has given me an opportunity to take back what this damn disease has taken from me, my self-worth.

This isn’t a game or past time with me, the people and the need of support for and from others and the need to bring awareness is more important to me than most of you will ever understand. I have never wanted or been the type of person who felt comfortable “being out in the spotlight” I am more of the behind the scenes kind of person.

So I made a list of all the things I felt I needed to and wanted to do in the AS community for me to be able to be at peace with my life with Ankylosing Spondylitis.

I have only two more things to finish and I will be able to say, you did it girl.

What I had naively hoped for has been exceeded a million fold, and healing beyond words.

There are no words to express my appreciation or emotions when it comes to this, but I know the truth of what it means to me and that’s all that matters when sitting in the dark alone with my own company.

This subject has weighed heavy on my mind for many years and I have kept silent or invisible as my disease is about it. I have offered tidbits here and there but have never stepped up to the plate to offer my thoughts about it till today.

Sometimes it doesn’t feel worth it or it’s just too hard to express your thoughts on a subject especially one as important and controversial as this is. As the result of being labeled as a scare monger, drama queen, attention seeking   &)(*#(* and many more, I allowed these words to keep me silent and not follow my heart, but I am running out of things on my list to accomplish in the AS community.

It’s speak now or forever hold my peace, sort of deal for me.

So think what you want, say what you want, do what you want, this subject is too important to not talk about honestly and maturely. I have had some tell me that we shouldn’t speak of such things because of the newly diagnosed or the youth of this community because it may scare them.

Aren’t we here to share, educate inspire and support one another? When is it too early to try to save someone’s life or quality of life, and when does it become too late? I mean isn’t better to inform, educate and make aware so people can make smart choices about the quality of life they want. I lived in the life of ignorance and silence and denial and the regret that I have that I didn’t ask more questions, demand answers or the fact that someone along the way didn’t give a shit about me enough to offer me the real facts or convey the seriousness of this situation I found myself in. I have no one to blame, I can’t be angry or upset because I should have cared more about myself. I can’t change this for myself, but I can damn well try to for those I care about or who will follow the same path in their lives.

I am a realist, I believe in being real about something, and dealing with it head on, and believe me I do not take this lightly due to family circumstances that left me no choice but to be this way.

I am not sure how long this will take, one cup, two cup, or maybe a whole dang pot of coffee!

So let’s begin.

Ankylosing Spondylitis according to the Arthritis Society is an auto immune disease.

Ankylosing Spondylitis according to the Arthritis Foundation is a form of arthritis.

Do we agree so far?

In case you don’t know or may not understand let me share with you the definition of these.

Auto immune disease: One job of the immune system is to protect the body from viruses, bacteria, and other living organisms. The immune system usually does not react against the body’s own cells. However, sometimes it attacks the cells it is supposed to protect; this response is called autoimmunity.

In simple terms it means your body attacks itself.

Arthritis: The word “arthritis” means “joint inflammation.” Inflammation is one of the body’s natural reactions to disease or injury, and includes swelling, pain, and stiffness.

Did you know that both auto immune diseases and arthritis have the possibilities of contributing to one’s death?

According to the Spondylitis Association, National Ankylosing Spondylitis Society, Arthritis Foundation, Arthritis Society and good ole Wickipedia here are some of the “possible” results or symptoms or effects that Ankylosing Spondylitis MAY have on the body. Please note I said MAY.

Inflammation

Chronic Pain

Chronic Fatigue

Cardiac Manifestations which means it can affect the heart.

Pulmonary Manifestations which means it can affect the lungs.

It can possibly affect the kidneys.

It can possibly cause Neurological Complications.

Sleep apnea

Fusion

Depression

Pharmaceutical complications or side effects from prescribed medicines.

Gastrointestinal Manifestations what means it can affect the stomach and intestines.

I could go on but I listed these not because they are the most common some are but because they are the most recognizable to the majority of society.

Do we agree so far?

You may want to get another coffee or something a little stronger this is where it gets a little difficult.

For those of you, who have difficulty facing reality, or you’re one of those politically correct or terminology addicts, or perfectionist grammar people, now may be the time for you to leave.

I guess this is where I become a sky diver by jumping off the cliff, what the hell, let’s go for it. I mean really what do we have to lose? Not a damn thing. So here we go.

Did you know that auto immune diseases can be fatal, can be doesn’t mean it will be but it could be.

Did you know, that arthritis can be fatal, can be doesn’t mean it will be but it could be.

WHO KNEW?

I know there are some of you saying yeah but…

Before you blow a gasket or have a stroke I said it could be or can be, not will be.

BIG DIFFERENCE! But isn’t that enough to sit up and take notice?

I’m sorry but I am so @(*~&@(*&! Sick of hearing it’s just arthritis, or at least it can’t kill you.

But it isn’t and it can.

Do we agree so far? Probably not but continue on I do…

Let’s talk about the possible results, symptoms or effects, remember I said possible.

Inflammation, Heart, Lung, Neurological, Kidney, and Gastric diseases, complications or manifestations ALL have the ability to be fatal; some have even been labeled silent killers.

Let’s talk about medicines and side effects, serious stuff, necessary but you should educate, pay attention and take this seriously. I mean everyone enjoys playing doctor but now is not the time.

PAY ATTENTION to warnings, side effects, complications, doses, and no mix and matching, this is real folks it’s not a game.

Chronic pain, consistent, uncontrolled pain, man oh man I can’t begin to tell you the living hell those two words can cause you.

Sleep deprivation, hypertension, depression, misuse of medicines, the list goes on, but you get the idea.

Let’s really get real and talk about the Taboo subject, you know the Elephant in the room.

S U I C I D E.

No it’s not being a drama mama or living in fantasy land to think that suicide is REAL in the AS community.

I know it’s a hard subject to talk about but it’s also one of the silent killers of AS.

We need to get real folks, it’s time to stop dancing around these subjects and REAL POSSIBILITIES of AS and hit the subjects head on!

We owe it to ourselves, the newly diagnosed, the younger generation, hell the older generation to start having real and serious discussions about this disease. It’s time to get real, things need to change.

The truth of the matter is we will NEVER change people’s perception of how Ankylosing Spondylitis affects our lives until we accept the reality of what Ankylosing Spondylitis does to our bodies.

Remember Dr. Phil, “You cannot change what you do not acknowledge.”

It’s time for me to acknowledge that I have an INVISIBLE DISEASE that is a SILENT KILLER and it’s called ANKYLOSING SPONDYLITIS.

That’s about as real as it gets folks  well at least for me.

 

The good news is once you acknowledge what is the truth about your situation, any situation you have the ability to change it.

Take charge of your health and quality of your life. Refuse to be invisible and silent.

Remember you are worth what ever it takes to have a life of quality and quantity.

Best to you all.

 

 

Dedicated to Stuart Ray,

To whom Ankylosing Spondylitis was a contributing factor in his suicide.

 

Dedicated to Sara Frankl

To whom Ankylosing Spondylitis was a contributing factor in her death.