The Year Of The Roller Coaster By Amanda

Posted in The Blogs By Amanda, Week 18: Challenges on January 19, 2012 by Cookie Has A.S.

 

The Year of The Roller CoasterAs 2011 draws to a close, I can’t help but look back at the past year of my life which was full of so many ups and downs. Ankylosing Spondylitis can be a challenge. Throw in health scares, full schedules, and a pinch of drama and you might as well put on your seat belt and get ready for the bumpy ride. I know it may seem silly to say, but I don’t think I would change any of it. I would of loved to have things modified a bit to protect my loves ones, but each adventure made me a better person. I wish my loved ones never had to experience their hardships, but also know they too were strong enough to handle them. I would say the way I now view my surroundings and the people in it are as  if I am seeing it, experiencing it, for the first time. I now look at things with a different perspective. Those who know me well know I was never a person who loved surprises, good or bad. I liked to be the person in control, and any loss of it could send me into a tailspin of frustration. I always believed in a higher power, but I wasn’t a person who really, truly embraced my faith…that is until this past year.My AS has tested my physical and emotional strength time and time again. It is as if it sits there poking at me asking how much more it can do until I break. Many of us with chronic illnesses can relate to that annoying pain that tries to conquer us. It is up to us to silence it. I am currently on my 4th medicine, Cimzia, to try and control some of the pain and progression of AS. Sadly the pain is still not controlled. I will admit I have days where I wonder if I can really keep going on. The times when even opening my eyes or lifting my head from the pillow is a chore due to pain. Days when my hands, legs and feet are an embarrassment because I can barely use them. Sitting up straight is definitely out of the question most of the time and if I need a lot of energy, well, it just isn’t going to happen. After all of these “downs” I look “up” and realize there is a reason I was chosen to have these hurdles. God must truly believe in me, so who am I to disregard his faith in me? I instantly remind myself that I can push forward. It may take longer than a healthy person, but I will get there and in a positive way.

From the outside looking in my past year would really seem to test a person’s mental well-being. People seem amazed at how I approach the situations so positive. They see it as remarkable. I see it as the only way. The pattern of the year for me seemed to be good news, bad news, and repeat. I began secretly dreading good news because it meant shortly following bad news would arrive. Between my AS adventures with pain and medicine working and not working, my mother’s deterioration of health, my daughter’s cancer, misdiagnosis of cancer, and then a final diagnosis of indeed a malignant cancer for her, even the strongest person would break. I cried only a few times through all of this. I will admit there were days I wanted to, but feared if I did, I wouldn’t stop so I pushed forward. I have learned I cannot control what God has planned for us and must accept, or at least respect, the outcome he chooses. I believe life and faith go hand in hand. It is okay not always knowing the answers. Please know you are never alone in your battle, no matter what you’re facing.

To all of the people that either helped me through this ride with their amazing support or to anyone who has had a roller coaster year themselves, you don’t realize how positive, strong, and hopeful you can be until the only choice you have is to approach life in this way. I cherish the support of family. I have found extreme comfort in old and new friends. I have had amazing past friendships renewed and am absolutely grateful to have these people back in my life. I look forward to not only the year ahead, but to making many, many more happy memories with the people I love.

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2011 – My First Year Blogging By Ricky

Posted in The Blogs By Rick, Week 21: Blogging on January 19, 2012 by Cookie Has A.S.

There seems to have been a theme throughout this year with how I start my posts. So why would this one be different? In keeping with ‘tradition’ I’d like to firstly apologise for not have written my end of year summary, at the actual end of year. Hopefully you can forgive me being too busy to write, given my recent addition to my family. This of course was the perfect end to my year. :)

In April 2011 I made the decision to blog. Thinking back I can’t seem to remember the exact point in which I made this decision, but I somehow came to the conclusion it was a great idea. I must say I haven’t looked back since. With each post I grow more and more fond of not only blogging, but of writing in general. I’d also like to thank all those that have supported me in the last year, especially those that have given me very positive feedback and encouragement. It really did inspire me to continue my efforts.

Writing about my Ankylosing Spondylitis has also taught me things not only about my own condition, but also about other chronic illness’ that I would not have otherwise learnt. We all strive for awareness about our conditions, and I have had my eyes opened, and I hope I have managed to do the same through my efforts.

What better way to sum up my year blogging than than to show you my Top Five viewed posts of 2011. I hope you enjoy reading them.

1 – Understanding – An Individual Barrier

2 – Hope – Just a dream? Or achievable?

3 – Mind, Body….. and Soul?

4 – Regret

5 – How do you plee? Guilty or Not Guilty?

Flabbergasted, Dumbfounded, Baffled And Hurt By Jeannette

Posted in The Blogs By Jeannette, Week 19: Doctors on December 5, 2011 by Cookie Has A.S.

I had an early appointment with my PCP this morning. She’s been a very good doc and also has Ankylosing Spondylitis to boot. A very mild case, but still, it’s always good when a doc can relate, and rare too!

She told me that yesterday was crazy busy, and I guess my complicated case set her off. She told me I should schedule separate visits for each issue and that seeing her 1-2 times a year wasn’t enough. I pointed out that I’ve been seeing her at least every 3 months for 5 years and that today was my 6th visit this year. When she realized her reprimand was misdirected towards me she became even more upset and told me I should see her every month because she only has a max of 10 minutes to spend with each patient if she’s going to make any money. I was rather dumbfounded at this point and told her that I couldn’t afford to see her every month, not with the cost of seeing my specialists and paying for 34 prescriptions without insurance.

Despite how I felt inside I remained calm and understanding. I truly sympathize with her predicament. It’s obvious she feels like her hands are tied because of insurance companies, drug manufacturers, etc. I somehow took on the role of psychologist with my doc … or perhaps a pounding board. She told me that the small amount of time she can afford to spend with me isn’t enough and as a result she can’t be a good, thorough doc. She said all of this in a raised, angry voice and walked out, leaving me with the nurse who looked embarrassed because of the outburst. The nurse further explained how bad the previous day had been for them … never looked me in the eyes.

I remained calm and kind through the whole ordeal, and didn’t react in a negative manner. After some silence I said in a raised whisper to the nurse, “What did I do? That was so unprofessional. I’m never coming back. You can note that in my file.”

They forgot to treat my ear, pneumonia shot and medical records release form, and I didn’t remind them. I just paid my bill and left. As soon as I walked out the door tears streamed down my face. It was tough holding them in until I was alone.

Stress is a major trigger for bad health and Dr. S knows this. THIS is the last thing I needed. In my current state of mind I feel like finding a new PCP but I don’t want to make any important decisions when I’m upset. So … I’m thinking I should sleep on this first before making a decision … and I should pray for Dr. S. It also occurred to me that most docs don’t even care enough about their patients to have an outburst, and clearly Dr. S does care.

Any comments, suggestions, and words of wisdom are very welcome.

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,

and

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

everything

and

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

and

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.

http://cookiehasas.files.wordpress.com/2011/06/christmas2006_066.jpg

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.”