Archive for the The Blogs By Cookie Category

How Do You Say By Cookie

Posted in The Blogs By Cookie, Week 20: Nurses on November 28, 2011 by Cookie Has A.S.

Cookie           and       Genie

August 2, 2011

How do you say …

Thank you to someone

who is your infusion nurse.

How do you say…

Thank you to someone

who is your confidant.

How do you say…

Thank you to someone

who is your friend.

How do you say…

Thank you to someone

who makes you feel

less alone in the world.

How do you say…

Thank you to someone

who loves you unconditionally.

How do you say…

Thank you to someone

who has seen your darkest hour.

How do you say…

Thank you to someone

who’s there for you no matter what.

How do you say…

Thank you to someone

who helps you to be strong.

How do you say…

Thank you to someone

who allows you to be weak.

How do you say…

Thank you to someone

who listens to your fears.

How do you say…

Thank you to someone

who gives you courage.

How do you say…

Thank you to someone

who sits beside you

while you sob quietly,

filled with despair.

How do you say…

Thank you to someone

who cares enough to ask.

How do you say…

Thank you to someone

who not only listens to you

but hears your words.

How do you say…

Thank you to someone

who hears what you don’t say.

How do you say…

Thank you to someone

who knows everything about you.

How do you say…

Thank you to someone

who doesn’t judge you.

How do you say…

Thank you to someone

who understands.

How do you say…

Thank you to someone

who cares.

How do you say…

Thank you to someone

who holds your hand,

pats your back,


wipes away your tears.

How do you say…

Thank you to someone

who has never left you alone.

How do you say…

Thank you to someone

who helps you smile.

How do you say…

Thank you to someone

who helps you forgive yourself.

How do you say …

Thank you to someone

you know will sit with you

when you leave this earth.

How do you say…

Thank you to someone

who cares for you physically.

How do you say…

Thank you to someone

who heals your heart.

How do you say…

Thank you to someone

who protects you soul.

How do you say…

Thank you to someone

who has been



everyone to you.

How do you say…

Thank you.

Dedicated to Genie Hayward

Who has been by my side

since 2002.

She is the one that cared

for me during my first

Remicade infusion


still does.

Lean On Me     By Al Green



I Know I Don’t Look Sick By Cookie

Posted in The Blogs By Cookie, Week 19: Doctors on November 21, 2011 by Cookie Has A.S.

The names have been changed to protect the innocent, or the guilty in this case.

My name is Cookie and I have seen almost every kind of doctor that you can imagine over the past forty years.

Dr. H. was my doctor during my teen years. I remember him as a kind man with limited knowledge to understand what was wrong with me.

He was also a victim of his time.

I say victim because we are all victims of society. He believed that my problems were all due to mental issues. My mother suffered from manic depression so there for I must also. All the pain I suffered from was caused and always would be in my head.

Dr. A was my doctor during my young adulthood. She was a wonderful and kind lady; I felt that I would be her patient till my life ended or hers. I was her patient for twenty-three years and when it became apparent that Ankylosing Spondylistis was going to change my life drastically and challenge her medical knowledge. She decided to do something.

I went in for a visit and was struggling with pneumonia, she sat across from me the same way she had for twenty-three years and said…… I can no longer be your physician. I can not deal with the challenges I (her) will have to face.

I just want to finish my career quietly, and smoothly. I don’t want the responsibility and work that it would require of me to be your physician. What Ankylosing Spondylitis hadn’t managed to destroy of me, she did in that fifteen minute conversation. I told her that I didn’t get this disease on purpose to make her life hard. I told her that I would pray every day for her to be in my shoes at this very moment.

I was forever changed as a human being that day.

Dr. D was my next physician a young man who led me in the right direction. A wonderful bright young man who listened to every word I said, most of all he heard every word I said. I came to him when Ankylosing Spondylitis started my journey of hell.

I struggled with so much pain and confusion about what was going on. I will never forget this man who touched me in a way that I am able to face anything this disease has in store for me. He told me that I would make him the best doctor in the world, because I was going to teach him compassion and empathy for his patients. Once in his office I was in excruciating pain and he gave me an injection in my hip to help me. When we were finished I turned to look at him and he had tears in his eyes. Several months later he was killed in a car wreck.

Dr. W is one of the best known surgeons in our area. He almost cost me my life. I had come to a point in my life that suicide seemed to be my only option. It consumed me.

He was recommended to me by Dr. D. I took my films and test results to him.

I stood in the door way watching him observe my films. He didn’t realize that I could see him and I watched him closely. You could tell that it was serious and you could tell the amazement and confusion in his expression. He grabbed the films turned and came to greet me. He leaned against the wall and folded his arms and looked at me dead in the eyes. Then he calmly said, “I am not a pill pusher.” I stood there for several minutes trying to comprehend what he said; my brain couldn’t register his words.

Then it hit me, he thought I was there only to get drugs. I became Enraged. I was so hurt that he wouldn’t even introduce himself, before he passed his judgment on me. I was humiliated to the core. I felt so hopeless thinking maybe just maybe I would find some relief and regain my life back. I finally said to him, “That’s good because I am not a pill taker. You could at least wait for me to ask for the drugs before you judge me.” After about five minutes of my tirade I grabbed my films and walked out of his office. I was walking out the door and the lady behind me said, “Ma’am, you need to pay your bill.”

I turned around and pointed to Dr. W and said, “God is going to pay for it himself!” I left and spent several years trying to learn to live with the pain. Suicide was always on my mind. That is until I met Dr. P.

Dr. P was the turning point of my life. A few days after meeting Dr. P I was in the hospital to have a cervical fusion done. On my last visit with Dr. P he stated that I had DISH, when I asked about it he said it was nothing to worry about. It would be years later that I read on his report stating: Told patient she has Ankylosing Spondylitis. No cure. No treatment, advised patient to learn to deal with it. Assessment: terminal.

I finally met Dr. A, who is still my doctor to this day. He is close to my age and a wonderful man. After about a year of visiting with Dr. A I could tell something was bothering him terribly. After a lengthy discussion I learned that it was me that was bothering him, and the fact that he was never going to fix me. I told him, I am not looking for someone to fix me. I am looking for someone to treat me with respect, kindness, acceptance, compassion, sympathy, and understanding. That day I learned not only was it hard to be a patient it was hard to be a doctor.

Dr. A suggested that I talk to Dr. S a psychiatrist, a man who taught me the meaning of acceptance and forgiveness. A true gift from God.

I met Dr. C when it became too difficult to walk. He suggested countless times I should meet with Dr. L. Dr. C teased me once saying, “I am not going to treat you anymore till you see Dr. L.”

Finally I made a call to Dr. L and asked him, “Do you know anything about Ankylosing Spondylitis?” He laughed and said, “A little.” His name is Doctor Martin Lidsky.

He is the man who gave me my life back. He gave me truth. He gave me hope. He gave me compassion. He gave me love. He gave me strength. He gave me tough love.

He gave me Cookie.

My last doctor is Dr. C. She is an angel. She is wise enough and compassionate enough to allow me to make my decisions on the way I wish to handle this disease. She offers me advice and direction but is compassionate enough to understand it is my battle, my fight and my life.

There are more doctors that I could mention but they are not worth the pain or energy to write about.

May God bless each and everyone for your sacrifice and dedication in becoming a doctor.

Thank you.

Life’s Little Challenges By Cookie

Posted in The Blogs By Cookie, Week 18: Challenges on November 7, 2011 by Cookie Has A.S.

Don’t you just love life’s little challenges?

Like trying to stand up when sitting on the couch.

Like trying to turn your head to see if a car is coming.

Like bending down to pick something off the floor.

Like trying to clip your toenails or paint them.

Like trying to look down when you sign a check.

Like trying to swallow a pill.

Like trying to wash your hair.

Like curling up on the couch to read a book.

Like trying to sit on a toilet.

Like trying to take a deep breath.

Like trying to dress your self.

Like trying to put on socks.

Like trying to tie your shoes.

Like trying to get something off the shelf.

Like trying to walk barefoot through the house.

Like trying to open your mouth for the doctor.

Like trying to chew your food.

Like trying to cross your legs.

Like trying to roll over in bed.

Like trying to walk up the stairs.

Like trying to relax on a lounge chair.

Like trying to open a jar.

Like trying to hug someone close.

Like trying to look up in the sky.

Like trying to cook a meal.

Like trying to wash out a tub.

Like trying to hang up your clothes.

Like trying to have a day with friends.

Like trying to wash dishes.

Like trying to clean house.

Like trying to carry in groceries.

Like trying to feed a baby in your arms.

Like trying to be intimate with your partner.

Like trying to fit into a normal world.

Like trying to pretend everything is all right.

People think it’s the difficult challenges

that break down a person’s spirit

It’s not

It ’s  life’s little challenges that destroy you.

Stolen Moments By Cookie

Posted in The Blogs By Cookie, Week 17: Missing on October 31, 2011 by Cookie Has A.S.

Sometimes I feel as if I should stand in the middle of the street and scream at the top of my lungs, OH MY GOD! Call 911 I’VE BEEN ROBBED! Ankylosing Spondylitis has robbed me of so much. People honestly have no clue, my self included, to how much has been stolen from me. My self-esteem, my usefulness, my independence and my value. This disease has even brought me to a point in my life that I feel gender less. I think people would really be shocked to know that deep inside I am a girly girl. I enjoy jewelry, dresses, heels and makeup, I love being a woman. I have always wanted to live in the fifty’s when women wore those beautiful full skirts and dresses. I have not been able to go barefoot since 1984, without excruciating  pain. I was never without shoes, even when I got out of a bathtub I stepped into shoes. I hate shopping for shoes, because I love gorgeous heels. AS has stolen the woman deep inside of me. I find my self too tired to even try to put makeup on or dress up. I wear simple clothes because of the pain that it causes when trying on shirts or buttoning up my clothing, you can forget zippers. It has come to a point that clothes have become extremely painful for me to wear, the weight of the pants hurt my hips. I feel like a burn victim because the clothes causes my skin to hurt and feel raw. I don’t know how long it would take to explain all the things that AS has stolen from me.

Anklylosing Spondylitis is like a silent thief in the night and when I awake, I realize my quality of life had been stolen from me.

The simple  joy of laying on a couch to watch television has been stolen from me.

The simple joy of soaking in a bathtub has been stolen from me.

The simple joy of tying my own shoes has been stolen from me.

The simple joy of wearing heels has been stolen from me.

The simple pleasure of relaxing in a lawn chair has been stolen from me.

The  simple joy of mixing up a cake to bake has been stolen from me.

The simple joy of looking up in the trees to see the birds has been stolen from me.

The simple joy of being a wife has been stolen from me.

The simple  joy of being a mother has been stolen from me.

The simple joy of being a grandmother has been stolen from me.

The simple joy of being a friend has been stolen from me.

The simple  joy of living has been stolen from me.

The most precious thing that Ankylosing Spondylitis has stolen from me is me.

Someone please call 911 I’ve been robbed!

“Your value does not lie in what you DO but in who you ARE.”

I’ll Take A Large, Please By Cookie

Posted in The Blogs By Cookie, Week 16: Transportation on October 24, 2011 by Cookie Has A.S.

In September 2004, my family and I were the victims of road rage. We were traveling on highway two ninety which is six lanes and the speed limit is seventy miles per hour. I had just purchased a brand new Chevrolet pick up three weeks prior, which meant I hadn’t made any payments yet. The pick up with equipped with running lights, so when you turned on the headlights they automatically came on also. The young lady later told police she was mad because I was driving with my bright lights on. She ran into the side of my pick up at an excessive speed right into the front  passenger wheel, which caused it to turn to the left and at that moment she became stuck with my truck and wheel. I ended up loosing control of my vehicle slamming into a concrete barrier that divided the highway. The force of her vehicle and the speed we were moving at and the fact that there was no time for reaction caused my vehicle to drive up on the concrete wall and slide on top of that wall for about a hundred feet. Her vehicle finally shot off to the right becoming detached from my pick up then causing my vehicle to lose balance and shoot off the wall straight into oncoming traffic. This is a ride and time in my life that I will never forget. Believe me I learned the importance and value of a second during that ride down the freeway with trucks, cars and headlights coming toward me at seventy miles per hour. I decided that I wouldn’t try to dodge anyone but keep my car straight and moving forward, praying they would see me in time to dodge out-of-the-way. That decision is what saved my daughter Christy, and grandchildren, Hunter, Austin, Taylor and my life. The song Jesus Take The Wheel has great meaning to me in so many ways now. My truck was totaled and my insurance provided me with a rental car. I have driven a pick up for more years than I can remember due to problems that Ankylosing Spondylitis has created for me.

This is where the real story about Ankylosing Spondylitis and me begins….

I went into Hertz rent a car to rent a vehicle to drive for a few days while my pick up was being repaired or replaced. I walked into the rental office and the young lady says may I help you and I tell her I need a car. She says do you want a compact, mid size, full size, or a large car, I was like uh? I need something to drive. Finally after much confusion I stated that I wanted a mid size car, seems now a days large doesn’t really mean large. When I was young and driving cars you could fit a family of five in a mid size car. Well let me tell you that is no longer true. I had no idea about cars or sizes I haven’t paid attention to them for years. So the nice young lady hands me my keys to my mid size car and off I go. My husband said that he would wait for me in the parking lot in his car, I told him it would probably take a long time. With keys in hand I go in the direction she pointed to. I later come up on a very small MID size car; thinking to my self how ironic in a society of over weight people, mid size sure looks small. I was trying to decide if I should swallow my pride and embarrassment and go back inside to the young lady and explain my dilemma. I knew there was no way I would be able to get into that car easily. I weighed the pros and cons of this for a few minutes and came to the conclusion I was just too embarrassed to go back in and explain that I wasn’t able to get into that car easily. I decided to deal with it; I mean, it was for only a few days after all. I opened the door and realized it was worse than I thought it was going to be, but my shame and pride wouldn’t allow me to go back in. I decided to lay the seat back as far as it would go and then lay down as far as I could and try to slide in. It only took maybe ten minutes to manage this slick maneuver. So there I was in a parking garage in a strange car lying down in the front seat struggling to close the door.

Please stay tuned for your Public Announcement:

Always put the keys into the ignition of a vehicle you are unfamiliar with, before getting in to drive.

So anyway there I am lying down in the front seat of the car, I struggle to sit up and close the door, which I finally managed to do. So far so good, easier than I thought, yeah right.

I then leaned back in the seat to grab the handle that brings the seat forward, all this time still holding the keys in my hand; bad idea let me tell you. I struggled with the handle and then finally POP goes the seat, flying a hundred miles per hour to the upright position, slamming me against the steering wheel and in my shock and surprise I accidentally drop the keys.

I can hear you saying big deal what is the problem?

So there I am with my face against the steering wheel and the keys on the floor and the button out of my reach, my arms per portioned correctly to my body of course ,are still too short to reach the button or the keys. It would have been easier if Ankylosing Spondylitis hadn’t fused my spine into a bamboo spine that doesn’t bend or turn. I see the light going off in your head now! Exactly. I can’t bend or twist to reach the button or get the keys.

Hey! I can honk the horn. I am full-figured so it shouldn’t be hard to push the horn, only that my extra padding takes up room and room is not a luxury in a mid size car. I can’t lean back or forward enough to push the horn. So there I am, stuck in a car, in the middle of a parking garage, door closed, windows up and no air conditioning. It won’t be long till Ronnie misses me and comes looking, or will it?

Tick tock, I can’t even watch the clock! You ever wonder just how long a minute really is? Well let me tell you a long time! I began to wonder how long does the oxygen last in a mid size car. How long can I last in a hot car in the middle of a parking garage in hundred-degree weather? Finally after hours, actually around twenty minutes the door of my car opens and I hear, what are you doing? If I hadn’t been so happy and relieved to see him, I would have said, relaxing in the sauna. He was visibly upset when he realized what had happened, we laugh about it now, and then also, but it was a serious situation or could have been. Well he made me go in the rental office to tell the lady my dilemma, which was humiliating to say the least.

There are times the rage I feel toward Ankylosing Spondylitis is shocking to me.

So I politely asked may I have that in a large please? The young lady was so kind and understanding and compassionate she didn’t even change the cost of the larger car rental, which cut into her commission. Reminding me that there are still kind people in the world.

The pictures below are of an AS friend of mine named Rick, who was generous enough to allow me to use his pictures showing the difficulties that Ankylosing Spondylitis causes for us when dealing with vehicles.

Here is the link to find out more about Rick,  Thank you so much!


Empathy: 101

Posted in The Blogs By Cookie, Week 15: Making Others Understand on October 17, 2011 by Cookie Has A.S.

All right class, please get comfortable and put your nametags on.

Welcome to Empathy 101.  This week’s class will be about making others understand.

My name is Cookie and I will be your teacher.

Lets start with the meaning of the word empathy.

Empathy is the capacity to recognize and, to some extent, share feelings (such as sadness or happiness) that are being experienced by another sentient or semi-sentient being. Empathy is the key cornerstone in genuine human relationships.

Compassion is a virtue — one in which the emotional capacities of empathy and sympathy (for the suffering of others) are regarded as a part of love itself, and a cornerstone of greater social interconnection and humanism — foundational to the highest principles in philosophy, society, and personhood.

Also included in this would be the word sympathy. In order to succeed in this class you must understand the meaning of the word sympathy.

Sympathy is a social affinity in which one person stands with another person, closely understanding his or her feelings.

So now that everyone has a clear meaning of the words, we will begin our class on making others understand.

First we must ask our selves what is the goal of making others understand.

Second we must ask our selves what is the reason of making others understand.

Last but not least we must ask our selves what is gained by making others understand.

The goal of making others understand is to remove the barriers that divide us as human beings. To alleviate some of the burdens placed on the divided sides of humanity, to bring us together spiritually and emotionally; to make it understood that we are all the same, unique unto our selves but equal just the same.

The reason of making others understand is different for each one of us. For some it is about social status, ethnic, spiritual, physical or sexual differences. But today, our class is about health differences. The status of being healthy or having a disease, living without pain or with chronic pain, or being able or disabled.

The last thing one must learn is what they hope to gain by making others understand. Is it about making people aware of your life with this disease, is it about gaining acceptance about what makes you different by having this disease, is it about validation for your self and the struggles you have with this disease. Most of the time when people reach deep into their souls, they will learn the journey about making others understand, was to get acceptance, validation and understanding not only from others but from themselves as well.

In achieving this goal then one defines the true meaning of humanity.

I hope that you will open your mind, and hearts and pay close attention to this class.

Get your pens and paper ready.

I want every one of you to write down the reason that brings you to this class and we will choose the topic and begin our journey of understanding.

The topic chosen is Making Others Understand About Ankylosing Spondylitis.

Before we move forward you will need to know a little about Ankylosing Spondylitis. Ankylosing spondylitis (AS, from Greek ankylos, stiff; spondylos, vertebrae), previously known as Bekhterev’s disease, Bekhterev syndrome, and Marie-Strümpell disease, a form of spondyloarthritis, is a chronic, inflammatory arthritis and autoimmune disease.[1] It mainly affects joints in the spine and the sacroiliac joint in the pelvis, and can cause eventual fusion of the spine.

It is a wide-spread disease that is not understood by those who research it, diagnose it, treat it, advocate about it, suffer from it, or those who know someone who does.

We are all working on ways to change the first five but this topic is about making people understand those who suffer from Ankylosing Spondylitis.

I have been chosen to give this class, because I suffer from Ankylosing Spondylitis, and have since childhood, it took thirty-two long and difficult years before getting my diagnoses and for treatment to begin. I have spent a life time keeping my disease invisible to others as much as possible, but as this disease changes my outside appearance so does the inside change. I have decided that I would be more vocal about what is wrong with me, by helping others with Ankylosing Spondylitis or learning about Ankylosing Spondylitis I find that the person I am helping the most  is myself.

I have a grandson, Hunter who is blind, and suffers from a rare life threatening  illness.  He is my hero, and such an inspiration to me. He has a wonderful spirit and will be an awesome motivational speaker one day. The picture below is the first time we were allowed to get close to him.  He was eight days old. He would end up spending the first four months of his life in the NICU. There would be many more days of suffering and still more to come.

This is Hunter today, thriving and enjoying his life to the best of his ability. He is such a joy and wonder to be with, he has taught me so much and continues to do so. He weathers the storms of his life with such courage, strength and integrity he makes mine seem like a small breeze in the wind.

I spent some time with Michael Ann who was his visual aide teacher for many years, a wonderful young woman who was passionate about her goal in teaching blind students, who was determined to give them the tools to succeed in life, and has a tremendous amount of compassion for my grandson and his struggles with his health and blindness. I remember a very intimate conversation with her about how she trained for this career. She said that she had to go to the School for the Blind in Austin, Texas. After much discussion on the subject she was told that she would have to live as a blind person. She admitted to me that she thought this would be a breeze, but found out it was one of the most difficult and eye-opening challenges she had ever faced in her life. She spent one week living as a blind person. She said there is nothing better than walking in a man’s shoes to learn empathy, compassion and understanding for what he deals with in his day-to-day life.

So that is how I came up with the idea of teaching Empathy 101: Making Others Understand.  You will be walking in the shoes of a person who suffers from Ankylosing Spondylitis. Welcome To Our World.

You will notice at the back of  the room everyone has a large tote with their names on it. Inside are the tools needed for this class, and may be the most important tools you will ever use in your life. Inside you will find, a neck brace, back brace, binder, marbles, pins,  flashlights, and post its. Most of you will each have these items but some will have more or less, and different ones. The reason being is Ankylosing Spondylitis is different for everyone and changes for that person on a daily basis.

Inside the tote that represents me, you will find a neck brace, back brace, binder, two bags of sand, rope, a pair of shoes, marbles, pins, flashlight, knives, and wire. I picked only the significant tools for you to use because of the limited space in the totes.

Let me give you a detail reason for my choice of tools to help you understand what it is like living in my body.

The neck brace that you will be wearing will constrict the movements of your neck. You will only be able to hold your head in one position and slightly move it from side to side. The back brace that you will be wearing will constrict the movements of your back. You will only be able to bend slightly and have limited movement from side to side. You see my spine is completely fused from my neck to the tail bone. I am unable to bend. I am able to move my head from side to side and up and down with very limited movement. Most of the time when a doctor asks me to touch my chin to my chest they miss the movement because to me it feels as if it is moving but they are unable to see it.

The binder you will be wearing will wrap about your rib cage. This will give you that tight feeling along with the difficulties in breathing making you only able to take short shallow breaths. My ribs have fused together and have caused me great difficulty breathing for many years.

The bags of sand weigh approximately twenty pounds each. Which will cause you to slow down in your movements wearing you out by the end of the day. They are designed to represent the fatigue that Ankylosing Spondylitis causes me on a daily basis. Letting you experience the struggles I have with dragging myself through the day. This allows you to understand how weighted down a person suffering from Ankylosing Spondylistis feels.

The rope will be used to limit your range of motion of your limbs, it will be tied loosely around your arms and legs. It will allow you restricted movements. The joints of my shoulders and legs are beginning to fuse, this makes it difficult to raise my arms or open my legs.

The shoes are a plain simple flat heeled, you will notice they are size nine. When my feet are measured for fitting, they are said to be a size six. The reason the shoes are three times larger is to allow room for the knots on the back of my heels. I wear flats because anything higher causes extreme pain in my lower back.

There is a small bag of marbles included in the tote. Each bag will be sewn into the lining of the shoes in the heel section. This is designed to let you experience the pain that I feel every time I make a step. Every time you make a step you will feel an excruciating amount of pain shooting up your heels to your mid calf.

The small pins included will be attached to the palms of your hands. It is designed to make you experience prickly feelings and sharp little pains in your fingers and hands. This allows you to understand the pain I feel when I try to type or write a letter or close my hands up in fist.

The flashlight included will be attached to a device that will fall in front of your head during the times you are in the light or having your picture taken. It will shine directly in your eyes and then moved out-of-the-way, temporally blinding you. This will give you the same experience of what it is like when I have my picture taken or walk into a bright room or outside. It will demonstrate the sensitivity to light I have.

The next tool we have is a small set of knives. Now don’t worry we won’t use these on any of the students. They will be sewn in to the pockets of small jackets and pants that you will be wearing. It is to demonstrate the sharp stabbing pains we sometimes experience unexpectedly during our daily activities. I will warn you now that there will be times that the stabbing sensation is so painful that you feel you should be bleeding to death, but I promise you that won’t be the case.

The wire included is the best available on the market guaranteed not to rust or make one ill. We will be using it to wire you mouth shut for the duration of this class. It is designed to make it difficult for you to open your mouth. We have no way of making it difficult for you to swallow but this will help you to understand how difficult and painful it is to open a mouth when your jaw is fusing. It has gotten to the point that my doctors don’t even say open wide and say ah because my throat will not open up and my mouth won’t open wide enough for them to see inside. This makes intubation  for surgery very difficult and painful. I am no longer able to open my mouth wide enough to take a complete bite of a hamburger.

The last tool you will be given is a stack of sticky post its. On each one of the hundred you receive will have the numbers zero to ten on them. This marks the level of pain you are feeling on the pain scale. You will be able to put them on the places of your body that you are experiencing pain. You will have at least four sets of each number, so you can change them during the day as your pain level changes. This will also allow people to be able to look at you and see the amount of pain you are experiencing. They are designed to help make Ankylosing Spondylitis a visible disease.

Well that covers the explanation of the tools, so lets suit up!

Now that everyone is in their new Ankylosing Spondylitis bodies, and suffering we can begin our mission of making others understand. So let the masquerade ball begin!

I figured the first setting for our experience will be lunch, so if everyone will get ready we will make our way to the cafeteria. You may find your self needing to stop for small breaks. I suggest that when you are descending down the stair ways you use the handrail and walk a little to the side. Often times you will catch yourself leaning forward and may result in you falling down the stairs. It is natural to lean your body forward to look down since you will be unable to move your neck. So please use extreme caution.

For those of you wearing the neck and back braces you will want to find a table that have straight back chairs, since you won’t be able to lean back and get comfortable. You may also want to ask the person across from you at the table if they mind if you place your plate and drink in the middle part of the table so you will be able to view your plate of food, this will be extremely difficult since you are not able to look down. Oh, a friendly reminder those of you who have neck braces remember to get your straws for your drinks, you will not be able to tilt your head back and tilt the glass to drink, so a straw is what you will need. For those of you ordering steaks, you may want to ask that it be cut up for you in small pieces. The pins and stabbing pains you will experience in your hands will make it difficult for you to cut it your self. The wire in your mouth will make it difficult for you to open your mouth and chew your food.  I hope you all enjoy your meals.

Will everyone follow me to the parking lot, there will be an assortment of vehicles for your transportation to our next location for this experiment. Please be careful and try to walk slowly and shuffle your feet, since you won’t be able to see where you are stepping you will need to use extreme caution as not to trip over anything or step in a hole. You will also need to be careful about dropping anything, if you do you will need to use caution when leaning down to pick it up, many times gravity will cause you to fall face first to the ground. Hopefully you will be ably to rely on the kindness of others to pick it up for you, but don’t count on it. I will also take this opportunity to warn you that people will be staring at you, some will point, look, turn away speaking loud enough for you to hear what they are saying but pretending to not notice you can hear, some will even have the nerve to come up to you and ask personal questions about you that are simply none of their business. You are entitled to react in any way you see fit, besides using violence of course. One of the responses that I have used in the past that works quiet well, is that I became this way after asking a little old bent up lady, what did you do to yourself, and letting her know she didn’t look sick. There are also t-shirts available that say on the front of them,


You will have approximately ten minutes to find a vehicle suitable for you, those that are not able to find one, will be left behind. I suggest those with neck and back braces to attempt the trucks first. Since I am completely fused I find it impossible to bend enough to get into small cars, so I ride in trucks most of the time. (Below are pictures of Rick Pokerwinski, who has given me permission to share them with you. Thank you so much, Rick.)!/photo.php?fbid=107119072634551&set=o.209801168268&type=1&theater

Passengers and drivers, please listen carefully. I feel for the safety of innocent patrons and yourselves, I must warn you. Drivers please take a moment to adjust your mirrors to help you. Since you are not able to turn your head, you will rely on your mirrors. Passengers please pay close attention to the road, when you see holes or bumps in the road please brace your self for the stabbing pain you will experience in your back or neck. That pain at times will be so excruciating that you will actually scream out, possibly frightening your driver, and diverting their attention, which may cause an accident. I speak from experience, during one of our weekend outings my husband and I were driving around in his mustang. This mustang was very difficult for me to get in, but I struggled though the pain and difficulty so I could enjoy cruising with my husband. The design of the vehicle caused many blind spots for me. I had seen a motorcycle and wanted a better look, so I tried to turn to look and when I did, I experienced a terrible sharp shooting pain in my back, causing me to scream out. This of course frightened my husband, who then turned to me to check on me, of course taking his eyes off the road, during this episode, he ran a red light. Which was very frightening to know that I could have cost us our lives or innocent people to be hurt. We said our prayer of thanks and at that moment he seen the lights in the mirror. The lady police officer, was no more concerned about the cause of this incident, only that we had run a red light. She stated she couldn’t care less if I was dying, there was never a reason for anyone to run a red light. (I am wondering if I should invite her to this class, now that I think about it.)

Please be extremely careful.

Our next destination in this experiment will be the Moody Gardens Resort in Galveston, Texas. My reasons for choosing Moody Gardens is because it will allow us to cover many scenarios in one place and in a short amount of time. Plus it is such a beautiful place. By surrounding yourself with nature’s beauty,  it makes it easier to over look the ugliness in mankind.

All right load up and let’s go!

Well I see we all made it safely, I did witness four mishaps but considering the circumstances I think we did good, everyone is safe and there is no material damage. I can tell by the expression on your faces, that the stress and struggles are beginning to show. You may consider practicing a poker face, because people will continuously ask you what is wrong or why are you mad. This tends to put strain on relationships causing a lot of  tension, resulting in bickering and arguing which will eventually cause resentment, on both sides.

I need to do roll call. We are missing seven students, but I was informed by text, they were unable to get inside the cars. Oh well, there is always next time.

During this part of the experiment everyone will be assigned to different areas and activities at the resort. Everyone will be doing this part of the experiment alone. I know it’s a little daunting to think you won’t have the support of your classmates, but in the real world there are many times  you will endure this alone, with no one to support you, comfort you or to hold your hand. I know this is frightening for some but it’s the sad truth. Most of us don’t always have the love and support we need to help us get through the difficult times.  I know I have learned the hard way that courage isn’t always a loud roar, sometimes it is a soft whisper in the dark, saying I will try again tomorrow.

I will give you a run down on the activities you will all be attending and offer my best advice and challenges you may face. Everyone was given an envelope when you registered for this class, if you will be so kind to open, you will  see the activity you will be assigned for today. The activities are as follows.

Massage: please make sure to ask for the light massage, because deep tissue massages will sometimes cause extreme pain in the joints and muscles. Those who are unable to move their neck, may want to ask if they have a table with the hole in it so you can put your face down in it. I would suggest taking advil before hand.

Pedicures: make sure that the water is not extremely hot, due to over sensitivity to heat. Make sure you stop them before turning on the massager in the chairs, due to the intense pain it will cause in your back. I suggest taking a pillow with you, because it will be extremely difficult for you to lean back and relax in the chair.

Hair cuts and coloring: Make sure that you check and see if you are able to lay back in the chair where they will rinse your hair, would hate for them not to be able to rinse the dye out of your hair.

Exercise room: make sure if you use the treadmill to do so at a low-speed, you will tend to lose your balance very easily and fall.

Patio: you will need to check out the chairs around the patio. You will want a chair that has a back that is straight up, if you sit in one that leans back the only view you will enjoy is the sky.

Nap time: you will want to make sure that you get a bed that is close to the ground, none of those beautiful high-rise beds for you. You will need to make sure that your feet are able to touch the ground so you can use the floor to help you get into bed and able to reach the floor quickly when you get out of bed. Those of you who are wearing neck and back braces, make sure you ask for a king size bed, so that you don’t hit anyone when you swing your body into motion to get out of bed. Remember you no longer have any flexibility so you are like a little bowling pin.

Remember every envelope has the activity that you will do, tips on how to minimize your discomfort and warnings to help you escape injury or pain.

Everyone is to be back here in four hours, watch and use your time wisely, and make arrangements prior for unseen issues. Anyone late meeting here will be given a zero for your grade today. Good luck.

Welcome back class, sit down and relax, while I look over your notes on today’s activities. From the notes, I can see you all have realized that living in the body of an Ankylosing Spondylitis person is very challenging, sometimes frightening, and very painful. I am glad to notice that there are notes here indicating some of you experienced anger, frustration, depression, kindness, laughter, compassion, and understanding. Life is never the same from day-to-day for a person suffering with Ankylosing Spondylitis, it teaches most of us to stop and take a moment in the fast lane and enjoy the simple blessings in life. Job well done.

All right everyone class will be adjourned shortly. When you leave please stop by my desk to pick up your homework assignments on Sleepless In The  Spondy World. Tomorrow we will all be going to the Baylor Medical Clinic, for the medical aspect of this class. You will have the pleasure of getting blood test, x-rays, bone scans, mri, trigger shots,  and infusions. Each one of you will be asked around a hundred questions concerning your medical history, your mental state, your pain levels, and how you are feeling today. Please be careful on how much information you share about your struggles, or how depressing this is for you. Wouldn’t want you evaluated for mental incompetency, now would we?

I wish you all a good nights sleep, your trial packages of Ambien are in the top drawer of my desk. Please take some even if you don’t think you’ll need it, you will.

I HOPE to see you all tomorrow, if you have the courage to walk another day in my shoes.  Class dismissed.

Lessons Learned In Life

I think life should be about touching the lives of people around us. Making a difference. Accepting people for who they are, going out of our way to help others, and loving with all that we’ve got. Sometimes all it takes is one simple gesture, and we can put a smile on someone’s face and make them feel less alone. That is what we should live for, because when we’re gone from this world, we can’t take anything with us. All that’s left are the people whose lives you touched, and the difference you’ve made while you were here. So make this life count, because you don’t get a second chance.~Unknown

This Blog is written in honor of Kelly Christal Johnston, who retired as a teacher due to Ankylosing Spondylitis, her dream is to reach out to as many people she possibly can, teaching them about our lives with Ankylosing Spondylitis in HOPE that one day we will all live as one, just Imagine how truly wonderful that would be.

Imagine by John Lennon

This Blog is dedicated to Hunter who has taught me to see the world with a compassionate heart.

“The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart”
Helen Keller

“When an individual feels for another’s pain, as a superior towards an inferior, or feels sorry for a condition one cannot even imagine oneself in – that is the feeling of pity. We pity a blind person, for we don’t know what blindness is. However, when we rise higher, look at the other as an equal, can probably imagine ourselves in his condition, and feel a strong bond with him, then that pity converts itself into sympathy. When, however, we identify so totally with another that he suffers, and we feel the pain; he laughs, and joy suffuses our being; he is excited, and our heart leaps in exhilaration; then we are close to the condition that is called empathy.” Chandrika, author  Atma Siddhi

I would like to thank each and every one of you who cared enough to read this blog in its entirety. It’s the longest  one I’ve written and the most important one to me.

There are millions of people and families, who’ll never understand what it’s like to  live our lives. I hope I was able to help you understand what it’s like to walk in our shoes experiencing  the difficulties we deal with on a day-to-day basis.

I have been blessed with the honor of loving several people who society would consider handicapped or disabled.

I had a cousin who was mentally retarded due to a high fever as an infant, she passed away at the age of eighteen.

I had a cousin who was disfigured by third degree burns he suffered as a toddler, the cause was a pot of boiling water on the stove and a child’s curiosity.

My best friend had one leg amputated at the age of twelve, due to bone cancer, a battle she lost at the age of sixteen.

My mother suffered with rheumatoid arthritis and manic depression.

My father had a massive stroke at the age of fifty-three, leaving him paralyzed on his right side, and unable to speak.

My mother in law suffered with emphysema and wore an oxygen mask all the time.

My grandson was born blind, and suffers from a rare life threatening illness.

Then you have me, the  perfect picture of medical knowledge gone wrong, fused by Ankylosing Spondylitis.

Now you can see why this topic was so dear to my heart.

I hope that in some small way you will walk away a changed person.

Be The Change You Want To See In The World”  

Mathama Gandhi

Would You Change? By Tracy Chapman

Starting With The Man In The Mirror

By Michael Jackson

Is It, Simply A Matter Of Choice? By Cookie

Posted in The Blogs By Cookie, Week 14: Coping on October 10, 2011 by Cookie Has A.S.

The million dollar question today is:

How do we cope?

Is it decided by genetics?

Is it something we learn?

Why are some of us optimistic and some pessimist?

Why are some grateful and some bitter?

What makes us different, but yet the same?

What is it inside of us that determines how we cope with life,  illnesses, tragedies, death or simple every day problems?

Many of us will go through life never knowing the answer to that question, some of us will know the exact moment when we are given the answer.

For as long as I can remember, my mother had a Serenity prayer tapestry that my aunt Judy made especially for her, hanging on the kitchen wall. The sitting arrangements at the dining room table made it visible to me during our meal times. I can’t tell you how many times I read it while living at home; even now a copy of that prayer is never far from me.

It wouldn’t be until later in my life after many challenges and tragedies that I would come to truly understand the wisdom of those words, this prayer has been instrumental in teaching me how to “live” my life, giving me the strength to cope with whatever fate may bring my way.

One of the most valuable life lessons I experienced was during my youth. I met a young girl named Diana when I was young; she had been diagnosed with cancer when she was 8 years old. She had to have her leg amputated when she was 12 years old. We became best friends, inseparable.

Life was cruel to her, people were cruel to her, and cancer was cruel to her. She touched a place so deep inside of me that I was never the same. My friendship with her taught me compassion, sympathy, understanding and most of all acceptance.

There were times I had  to fight or defend myself because I was her friend. I learned people were prejudice, ignorant and superficial. My friendship with her cost me a lot but was worth more than I had lost. She taught me unconditional love and the value of a person and to find blessings in everything. She was amazing and wise beyond her years.

A few days before her death, she took a turn for the worse and it was horrible to watch. Seizures and convulsions over took her body, and my boyfriend, Ronnie ( my husband)  in his need to protect me took me away from the hospital. After threatening to jump out of the car, he took me back.

When we stepped off the elevator, her father greeted me, saying she is asking for you. I walked into that room to see my best friend close to death, smile at me with love and warmth, and when I took her hand and stood beside her, I bent down and kissed her forehead. She whispered,” you are better than morphine; I feel no pain or fear when you are near.” I had been praying for months for God to heal her, that night I asked for the serenity to accept the things I could not change.

She died the next day. I lost all faith in God and became angry and bitter. I hated those who thought my grieving was an act or that I would get over it. My heart was broken. My soul was shattered. I didn’t have the support system needed to cope with this. I didn’t have the faith to continue to live without bitterness. I hated myself for being alive.

I struggled for months trying to understand, why? I asked my preacher over and over how God could allow her to suffer and die. No answer was forthcoming. I hated the person I was becoming. I was bitter, angry, devastated and lost. No one could comfort or help me to understand.

My granny Irene, came to visit, I adored her. She taught me so many things, to crochet, quilt and do crafts. She sat beside me and asked, “How are you doing child?” I knew what she was asking, and the tears and emotion was so thick I couldn’t speak. We sat there quietly for a long time.

Finally she asked me the question, I will never forget. “Cookie, do you wish Diana had never died?” I whipped my head around so fast and stared at her as if she had grown 3 heads. I said, “You’re kidding, right?”

She stared at me long and hard and whispered no. I was so mad that she would ask such a stupid question and with hatred in my heart, not toward her, but life and everything about it. I screamed, ” YES I WISH SHE HAD NEVER DIED!”

She waited for my pain to ease and quietly said to me, “That’s  a shame child, because that means you would’ve never known her.”

Now that caught my attention.

I said, “What do you mean?”

Then she said the words that would forever change my life.

” For whatever reason or purpose Diana had, she was only meant to live sixteen years. Everyone will leave this earth. Some are here longer than others, but when our time is up, it’s up, unless of course you take your own life. So in order for you not to be hurting over Diana’s death means you would’ve never had her in your life, because that was her destiny.”

I sat there in silence listening to what she was saying.

” Cookie, life is simple; there is a season for everything. If you never have sorrow you will never appreciate joy. If you change the bad things that have happened in your life and wish them away, then your life changes and if your life changes there is no guarantee that the blessings and joys you have had would be the same. Remember always good things sometimes happen to bad people and bad things sometimes happens to good people. It’s the way life is sometimes.”  She got up, kissed me on the top of my head and left me there to think.

I sat there on the back porch for many hours and then finally went inside. Later that night I made a promise to myself at the age of seventeen. That I would ask for courage and faith to help me through the hard times of my life. That I would ask for strength and guidance to change the things I would be able to.  That I would appreciate the beauty in the sunrise and in everything I see. I promised that I would do my best to never question any situation and try to turn it into something positive. I promised I wouldn’t take my blessing for granted and that I would never pray for anyone to live, that I would not question fate.

That promise has been tested over and over, in more tragedies and cruelties than most people will ever see in three lifetimes.

I often say I have the worse luck of anyone you will ever know but I am the most blessed person you will ever meet. It has been a challenge to keep that promise and it’s something that hasn’t come easily. But it’s my way of life and how I raised my daughter. Maybe it’s because of the life that I’ve been blessed with that I can feel this way. I know most would say the life I was cursed with, but I honestly don’t feel that way.

Often time’s people will ask, “Aren’t you bitter, or at least angry?” I’m always quick to say, “How can I be? I was never promised anything.” Honestly how can any of us be bitter about something we were never promised or guaranteed to have? I don’t remember reading a contract when I was born saying that I would be 5 ft 6 inches, 120 pounds, blonde hair, blue eyes and healthy till the day I died. We aren’t promised or guaranteed anything, and everything we have is a blessing.

It’s  sad to watch people waste their lives wishing things were different.

Change what you are able to change.

Accept and make the most out of what you aren’t able to change.

I watch people spend their lives, being bitter and wishing for this and that.

Never paying attention to what they have in their lives at this moment.

I have learned to cope with Ankylosing Spondylitis in the same way.

I am thankful that I didn’t just wake up this way and that it was a gradual process making it easier to adjust to over the years.

Until you make peace with who you are , you will never be content with what  you have.

How do I  cope?

It is, simply a matter of choice.