Subjects For The Masquerade Word Ankylosing Spondylitis Blog

Subject: Meet The Blogger Cookie

Subject: Patient Activist 

Subject: Guilt

Subject: Regret

Subject: Hope

Subject: Significant Other

Subject: Weathering The Storm

Subject: Sleep

Subject: Friendship

Subject: Social Outings

Subject: Symptoms

Subject: Need

Subject: Self Esteem

Subject: Fears

Subject: Coping

Subject: Making Others Understand

Subject: Transportation

Subject: Missing

Subject: Challenges

Subject: Doctors

Subject: Nurses

Subject: Blogging

Cookie And Masquerade Of Words Blog Carnival

Masquerade Of Words

Meet The Bloggers

We are a small group of people who suffer from Ankylosing Spondylitis who have been brought together through the Internet to join forces in bringing awareness to this silent disease. We have all agreed to write a weekly blog on different subjects to share with you, our struggles, fears, our hopes and our lives.

We appreciate your interest.

Our hope is that you will leave with a better 

understanding of Ankylosing Spondylitis

Hello world, my name is Cookie. I am a born and raised Texan, please don’t hold that against me. July 21 2011, I will be turning fifty-two years old.

I have struggled with many illnesses over the years; to be truthful I don’t remember a time in my life I was ever well. I have had symptoms of Ankylosing Spondylitis since I was around ten years old, but was not diagnosed until 2002 when I was forty-three years old. I am currently on remicade for treatment of pain. I have been taking remicade since 2003. Unfortunately due to lack of knowledge, lack of understanding and not being my own advocate, the diagnosis and treatment came to late for me. I am completely fused from my neck to my tailbone, which means my head doesn’t turn or bend, nor does my body. Having Ankylosing  Spondylitis is very challenging, because you honestly have no clue from day-to-day, how this disease is going to affect you, honestly sometimes from hour to hour. It is a vicious cycle of ups and downs, flares, bad days, good days, happiness, and depression; to say the least it keeps you on your toes.

In 2009, I met Dr. Reville in Houston to participate in the studies, and the Spondylitis Association of America was introduced to me. I became a member and was introduced to a world of Aser’s just like me. It was wonderful to find a place that I was considered the “norm”. I have made a lot of wonderful friendships during the past few years, and have developed a special bond (fusing) with Kelly who is the author of Hurting But Hopeful, she is such a wonderful inspiration to others and me. I decided after reading her blog that I would take a chance and write one. Being able to express myself concerning my life with this disease has been one of the most healing things I have ever done. I have always enjoyed being creative in arts and crafts and painting but they have become difficult to do, so this fills that emptiness inside my soul. I’ve been reading such amazing stories that are so inspiring and touching. I was so mesmerized how could I not wish to be a part of this. I started my blogs in May 2011, and have committed a part of every day to writing; it has been very rewarding to me.

I confided in a close friend about the new adventure I was embarking on. She sat there quietly for a moment and then said, “Cookie, do you HONESTLY believe people are going to read this or care?” I replied, “ It isn’t important to me if anyone reads it, it is important to me to write it.”

My goal is to bring awareness, and understanding to people who have no clue about Ankylosing Spondylitis.

My desire is to make people who suffer with Ankylosing Spondylitis to know they are not alone, we do understand, we do care, and we will be here till our fingers are to stiff to type anymore.

My hope is that my family and friends will care enough to one day sit down and read every word that I struggled to type and learn about my life with Ankylosing Spondylitis.

My reward is that this brings peace and healing to my heart and soul,  and maybe yours too.

Thank you and God bless you all.

My Voice:        Cookie Has A. S.

Masquerade Of Words

We are a small group of people who suffer from Ankylosing Spondylitis who have been brought together through the Internet to join forces in bringing awareness to this silent disease. We have all agreed to write a weekly blog on different subjects to share with you, our struggles, fears, our hopes and our lives.
We appreciate your interest.

Our hope is that you will leave with a better understanding of Ankylosing Spondylitis.

I will be sharing each of the post on the subjects we are asked to write about. The original published dates will be changed so they will go in order. 

The Power Of One Voice

Week 01: Subject: Patient Activist

What is a patient activist you ask? Fortunately more people have no idea of the meaning of that phrase than those who actually do, and for that we can be thankful.

There are many causes (no pun intended) for people to become activists, the majority of the time it is because something has happened to them personally or to someone dear to them. People try to make sense of tragic things in their lives by making something positive come from it. Sometimes when people become affected by something they want to bring awareness and a make a difference. Some people it is the need to make people understand that drives them, some it is to educate and for some it is to validate their self or the suffering they go through. Then you have those who choose to gain from people’s suffering for their own recognition.

Which kind of activist are you?

You have many activists who have suffered tragedies over the years and set out on a mission to make a difference by bringing awareness. One person who comes to mind that is very recognizable to society would be John Walsh: America’s Most Wanted. He never sought out being a victim’s advocate or activist, but it is a role that has become his very soul and his life since July 27, 1981, the day his only child, Adam, was abducted from a mall near his home in Hollywood. Florida. Adam was found murdered two weeks later. The case remained unsolved for 27 years. But in December 2008, after a long investigation that was re-opened by the Hollywood Police Department and with the assistance from dedicated active and retired criminal justice professionals, Adam’s case was finally closed. Ottis Toole who’d always been the main suspect was undeniably named the killer of Adam Walsh. This one man, lost in the midst of his own personal tragedy accomplished so many triumphs over the years in saving lives, there for saving himself. The power of one voice. What kind of activist are you?

You have activists who have friends or family members that suffer from a serious illness causing them to have a strong need to bring awareness and make a difference. Often times when people loose a loved one due to an illness it creates the need to fill a void left by that person, to validate the suffering they went through and make a difference by doing things that bring awareness. Nancy Brinker founded Susan G. Komen for the Cure in honor of her sister Susan G. Komen, who died of breast cancer in 1980. Lovely and vibrant, Suzy wasn't just her sister -- she was her best friend and role model. She was only 36, with two young children and everything to live for when she received the worst news of her life. For three years she fought courageously, but ultimately lost her battle. Since then, Nancy Brinker has made it her life's work to fulfill the promise she made to Suzy to find a cure for this disease. This one activist has turned her sister’s tragic death into a global Race For The Cure: The Power Of Pink. The power of one voice. What kind of activist are you?

You have activists who are making a tremendous effort to making a difference because they themselves suffer from a serious illness. Kelly Christal Johnston suffers from Ankylosing Spondylitis. At one time she was a schoolteacher on a mission to educate and make futures brighter. During one of our many conversations she confided in me that she missed being a teacher more than anything. She said she was born to be a teacher, and an educator. I told her that I couldn’t agree more. I told her that she is and will always be a teacher no matter what Ankylosing Spondylitis or life in general brings her way. I told Kelly you are still a teacher, only the subject and classroom have been changed. I said maybe you are the one that is supposed to educate the world about Ankylosing Spondylitis. She laughed softly at me and said, “Cookie, you are so silly.” Which is a phrase she often uses with me.

I was right though; this one young courageous human being with a sincere and genuine heart full of passion has created Hurting But Hopeful, and Masquerade Of Words. She is also the cofounder of A.S.A.P and Hope and Apples.  She has made it her life’s goal to be the best activist that Ankylosing Spondylitis has ever seen, and she will be. I have been a part of the A. S. World for two years. I have seen a dramatic change in the past year, which I contribute to her, and her ability to motivate and inspire others.  It is easy to see the sincerity in her and the hope she feels and the desperation to make a difference to bringing awareness to this silent disease in order to make a difference in her children’s future and yours also.  The power of one voice. What kind of activist are you?

Then you have activists such as myself, who have a need to fill the void that is deep within their soul because of this illness.  I want to bring awareness and help people to understand what Ankylosing Spondylitis means to all of us, yourself included.

My goal is to bring awareness to the community, accountability to the medical field, and hope to the Ankylosing Spondylitis sufferers, and validation to my own suffering. The power of one voice. What kind of activist are you?

Then you have the activists who would gain from your pain. The ones I call the wolf in sheep's clothing. The ones who are committed to using your cause to bring awareness to them selves for personal gain, be it their egos that need feeding, or their talents being discovered, or their careers being furthered, or their pockets being lined. This type of activist is easy to see through, just because they suffer from an invisible illness doesn’t mean the reasons behind their actions are invisible to others. They miss opportunities to bring awareness to “their cause “ because they are using that opportunity to promote awareness to themselves. This type of activist reminds me of the quote: Talk is cheap; it is your actions that speak. A sincere activist never misses a chance to bring awareness to their cause. A sincere activist will take advantage of every opportunity they are given and not waste a single one, because each and every one of them are precious to a person who is suffering. The power of one voice. What kind of activist are you?

An activist is a person who has the ability to be empathetic, compassionate and understanding of other people’s needs above themselves. It is a person who is committed with a pure heart that their only goal is to bring awareness and change to a cause that has touched them. It is a person who reaches out to a person by letter, email, blogs, Facebook, twitter, phone, television, webcamming, or to each other to bring awareness and understanding. It is a person who is passionate and sincere in their mission. The power of one voice. What kind of activist are you?

I tell people all the time it only takes one person to make a difference in this world.Everything you have in this world is the result of one man’s thought.
Today, when you see something that needs change, comment about it to one person, eventually the right person will hear and the difference will be made.

Dedicated to all of us, who are committed for whatever reason to making a difference.

The power of one voice. What kind of activist are you?

A Heart Bursting With Guilt

Week 02: Subject: Guilt

Guilt. How can a word that only consist of five letters, have such an impact on lives. This one word has had such devastating consequences on many people and their lives. Most of the time we have no idea how much impact this little word has on someone’s life, even our loved ones. There are times I am shocked when I look in the mirror there isn’t a scarlet letter G tattooed on my forehead, to show the world I am carrying the burden of blame. I know in my mind, it’s irrational that I should feel guilty about a lot of things; but I am unable to convince my heart otherwise.

I wasn’t sure exactly what I was going to write about on the subject of Guilt. I was just going to do a generic one, but this is to be a soul-searching experience. So soul-searching I went.

I have carried the burden of guilt for as long as I can remember. My mother suffered from manic depression, which in turn kept her in turmoil. Thankfully as an adult I was able to come to terms and understanding about her and her illness and the effects that it had on my life. I remember feeling guilty as a small child, because I was always sickly. I came into this world an extremely premature baby weighing 2 pounds and 1 ounce. I spent months in the hospital causing extreme emotional strain on my parents along with financial burdens. I felt guilty for the financial burden my birth had placed on them. I felt guilty for surviving when my twin brothers had died three years prior to me. I felt guilty for being born a girl. This guilt was placed on my shoulders un-intentionally but placed there just the same. My health caused many burdens for my family for many years.

In my early teens I began suffering from severe stomach pains, most the time it was considered to be a way to get attention or because I was a sensitive child. I was and still am a very tender-hearted and sensitive person. This for me was the defining moment in my life that would carry until today. Suffer in silence, don’t make waves, don’t trouble anyone with what is bothering you, and deal with it your self, because no one is going to believe you any way.

One evening I was found on the floor curled up in a ball, in so much pain that no one was able to straighten me out. I was crying and trying not to show any emotion because I didn’t want to upset anyone. I was told that I shouldn’t go to such extreme to get attention. I was in the hospital for several days, they weren’t able to find out the cause of my pain, but said it was some form of epilepsy. It would be years before I was diagnosed with Irritable Bowel Syndrome due to Ankylosing Spondylitis. I carried that burden of guilt for a long time among many others.

I was a young teenager when I got pregnant and married, another burden of guilt I carried for bringing shame upon my family. I struggled being a teen mother and taking on adult responsibilities while secretly dealing with my aches and pains. It would be thirty-two very difficult years of struggling with health issues that no one could make sense of before I would be diagnosed with Ankylosing Spondylitis. I felt guilty for not being the happy young girl my husband fell in love with. I felt guilty that I wasn’t able to be more involved in my daughter’s activities.

I did the best that I could during that time. I am remorseful knowing it wasn’t enough. I am still struggling to forgive myself. I know that it couldn’t be helped but it doesn’t change the fact deep inside I feel that I am a failure when it comes to being a mother and a wife. There were times when I couldn’t so much as get out of bed for days with no explanation except that I was just lazy. I used to tell people I feel as if I have been unplugged and blood should be draining out of my body.

I feel guilty because my husband didn’t sign up for this, he married a happy, vibrant young girl who turned into a woman who looks four times her age and he has to wonder every time he looks at her, what is she mad about. I didn’t even realize that I always look mad. Just yesterday we went to the doctor and he joined me. We were discussing some serious medical issues I am dealing with at this time; the fear in his eyes was easy to see. I mentioned to him that I hoped he forgives me for everything I have put him through over the years, he said honey I know you are sick and it’s not your fault. I told him I was sorry and I hated the person I had become. He told me it isn’t that hard and I understand why you are bitchy most the time. My heart broke at that very moment not because he said it but because it was true. I stood up and said I wanted to leave, not that I was angry but because I was devastated and heart-broken. He got upset and asked me to forgive him, which I told him you can’t ask forgiveness for speaking the truth. I told him why are we bothering trying to keep me alive, why do I bother going to the doctors, all we are doing is prolonging the Ankylosing Spondylitis Monster. I said why? He said because I love you, I will die without you and I need you, you are my life. I sat there quietly crying waiting for the doctor to come in. The guilt of the burdens that my disease has placed on a person I love more than life it’s self may be a guilt that I never recover from.

When we decided on the topic of guilt I was unsure what I would write about, but there was one memory that kept coming back and haunting me. I was unsure if I would share it here in this blog. I have decided to for several reasons, one to remind us all that life is precious and fragile and we are not guaranteed tomorrow. To remember to take advantage of every second of our lives, even during the worst of times. One day even those moments will become a precious memory to you.

A long time ago my nephew and his wife were expecting a baby, a little boy they planned to name Jesse James. Seems my nephew was a big fan of out laws. In our family each new life that comes into our group, is blessed with a mob of over happy people waiting to say Howdy! Welcome home! This occasion would be no different, we always meet at the hospital all waiting for our turns to kiss and hug and rock the newest member of the clan. I was running late to the hospital and when I arrived it was not to joys and laughter but to silence and tears. I stood there quietly at the door trying to make sense of what was happening. There was my nephew and his wife in tears hugging each other. Finally Jesse James grandmother noticed me and walked over to me and said,He died. He didn’t make it, Cookie.

Emotions ran rapid through my mind, how could an innocent child die. Why are cruel people allowed to live? How in God’s name could I have wished so much of my life away? I walked over to the young parents who were grieved stricken and in fear of the unknown and asked them where the baby was. They pointed to the bassinet in the corner and I walked slowly over to him. I stood there looking down at a small lifeless body of a dark-haired baby boy. I reached out and gently stroked his temple with my fingertip, so sad that I couldn’t even react.

After a long time standing there I finally asked them if I could hold him.  I could tell they were shocked, appalled and grateful. I smiled and said in broken tears every baby that has come into our family has had to suffer hearing my singing as I rock them and welcome them to our family, and Jesse was no exception.  That is exactly what I did. I sat in a rocking chair in the corner and softly sang and rocked Jesse James and welcomed him to our hearts. When I was finished, I placed him in his mother’s arms and we began loving this little soul we would never have the honor of getting to know. Days later I was asked why I rocked him and sang to him. I said because I didn’t want him to tell God when he got to Heaven, that we didn’t love him while he was here.

I struggled with the guilt of knowing that more times than not, I didn’t wish to live the life I was blessed with. I carry the burden of guilt knowing that I struggled with thoughts of suicide. I struggle now with guilt, that I was given the gift of life and failed to appreciate it properly.

Every day since Jesse was born I carry him inside my heart, reminding myself you must appreciate your life and live it to the best ability you can.

I am not a perfect person. I am not a perfect wife. I am not a perfect mother. I am not a perfect grandmother and that is a burden of guilt, I will have to learn to forgive myself for.

I tell myself every morning and every evening the key to Happiness is forgiving yourself for being human.

I Regret

Week 03: Subject: Regret

I regret… taking my life for granted.

I regret… not making a difference in this world.

I regret… not thinking I was worth it.

I regret… not oil painting.

I regret… wasting opportunities.

I regret… missing moments to make memories.

I regret… not saying I love you more.

I regret… not challenging doctors.

I regret… not taking an active role in my own health care.

I regret… not appreciating my time on earth more.

I regret… that I didn’t take better care of my self.

I regret… ever hurting anyone’s feelings.

I regret… not fighting harder for relationships that were important to me.

I regret… not having the courage to stand up for my self.

I regret… not being able to accept imperfections and do more things.

I regret… quitting school.

I regret… not being a better person.

I regret… not being a better friend.

I regret… not being a better sister.

I regret… not being a better daughter.

I regret… not being a better grandmother.

I regret… not being a better mother.

I regret… not being a better wife.

I regret… that I didn’t love myself more.

H.O.P.E.

Week 04: Subject: Hope

I HOPE: You enjoy Hearing Our Personal Experiences

I HOPE: When people read these blogs we have written, they will do so with a loving heart, compassionate soul and an open mind.
I HOPE: That Ankylosing Spondylitis becomes as familiar as the word arthritis.

I HOPE: That for whatever reason each of us began this journey it’s accomplished for you.
I HOPE: One day people will remember how determined we were to making a difference.
I HOPE: The medical field will be able to find a cure for Ankylosing Spondylitis.

I HOPE: The medical field will become familiar with the symptoms of Ankylosing Spondylitis.
I HOPE: That each of us achieve all of our goals and dreams and succeed in our challenge to raise Ankylosing Spondylitis awareness.
I HOPE: That one day people will say Ankylosing what? Due to the fact it is a disease that is on it’s way out.

I HOPE: That one day I will hear commercials about Ankylosing Spondylitis.
I HOPE: That I am the only one in my family to ever get Ankylosing Spondylitis.
I HOPE: That one day you will be able to say I made a difference in your life.

I HOPE: That one day we all reach that point in Ankylosing Spondylitis where the pain is minimal.
I HOPE: That one day I will be able to meet my Ankylosing Spondylitis friends and family.
I HOPE: That one day my family will care enough to read my blogs concerning my struggles and fears with Ankylosing Spondylitis.

I HOPE:  When people read our stories they will for that moment of time, walk in our shoes.
I HOPE: One day spell check will include the words ANKYLOSING SPONDYLITIS. I am getting tired of clicking ignore!
I HOPE: That one day each of us, will look in the mirror and love who we are.
I HOPE: That we STAND TALL, FUSE TOGETHER and KICK AS!

Take A Number Please

Week 05: Subject: Significant Other

May I help  number 33,000,001 please?

Customer: Hello

Clerk: How may I help you?

Customer: I would like to return this please.

Clerk: Would you tell me what is wrong with it?

Customer: Well it doesn't work anymore. It doesn't function the same as it did when I got it. It is very expensive to operate now. The repair bills are costly. It is in the repair shop at least once a month. It doesn't look the same as when I got it. It isn't pleasant to be around any more. It is not as enjoyable to use as it used to be. I am no longer happy with this product.

Clerk: I see. What is it exactly that you want us to do?

Customer: I would like a newer model or my money back.

Clerk: Well you will need to make a formal complaint with the Ankylosing Spondylitis Wife Department, the number is 1-800- AS- Sucks

Sometimes I wonder if there was such a thing would my husband look for my receipt to return me or get his money back. I know that  I am making light of a serious situation but humor has always been my way of dealing with things that bother me. Lets be honest here, in 1976 at the age of sixteen and nineteen, we had no idea just how hard it would be in the days to come to honor our wedding vows.

Does anyone really understand the true meaning of those words spoken on that special day. "Ronnie, do you take Cookie to be your wedded wife to live together in marriage? Do you promise to love, comfort, honor and keep her for better or worse, for richer or poorer, in sickness and in health, and forsaking all others, be faithful only to her so long as you both shall live?" I mean he wasn't thinking in the back of his mind, about Ankylosing Spondylitis, medical bills, medicines, surgeries, grouchy wife, wife with chronic pain, crying wife, depressed wife, disfigured wife, stress, worry, and grief till death do we part. I wouldn't blame him if his nightly prayer ends with please end my suffering and hers, and let it be over tomorrow. I assure you he didn't have any idea his life would be this way when he signed up for the job of being my husband thirty-five years ago.

My heart is burdened with guilt for causing his life to be so stressful and unhappy. It breaks my heart to know that had he met me during this time of my life, he would not be attracted to me physically or emotionally, due to no fault of his. Oh he will deny it wholeheartedly when I say this but deep down inside I know it is the truth. Sometimes I wonder if the kindest thing for me to do is to give him a divorce and relieve him of his duties as my husband. I would, except I love him too much to let him go. I try my best not to let Ankylosing Spondylitis change who I am inside but sometimes the monster comes out. I can't do anything about the changes that Ankylosing Spondylitis is doing to my body. I am thankful there has never been a time he has made me feel as if he truly doesn't love me. One of the most genuine acts of love he ever showed me, was during one day when I was crying about a huge surgery scar I had and how horrible it looked, the first of many to come. I was sitting on the bed crying, he came and knelt beside me and lifted my head up and said you stop that crying. I couldn't it was just too much, I mean I am not pretty to begin with and everything added takes that much more away from me. He bent down and kissed the 9 inch scar that runs sideways on my tummy and said Cookie I love that scar. I gasped and said how can you? He said I love this scar and any scars to come, because it makes you well and lets me keep you one day longer.

I pray every night that tomorrow he will still love me enough to think I am worth the trouble and I pray every day that love really is blind.

I'm Singing In The Rain

Week 06: Subject: Weathering The Storm



This topic has been such a struggle for me, I have thought about it for a couple of weeks.

What would I write about? I was approached two years ago with the idea of writing a blog, and felt stupid when I asked what a blog was. I told them I would think about it and never again brought it up. Then while reading Kelly’s blog I was touched beyond words and inspired to try. I honestly do not believe that my words will ever inspire anyone or make the best blogger award, but they do bring me a sense of peace, hope and self-worth. I am able to express my self without reservation. Sometimes when you try to tell someone how you feel the emotions or the fears keep the words locked up inside of you. I have struggled with this subject; I even spoke to Kelly on the phone about it. She told me you don’t have to write a blog on every topic, but the thing is I do. She said write about one thing you have gone through, she makes it seem so easy when it comes to writing blogs. Still nothing. Oh I had cute ideas and thoughts to put down but nothing that touched me. I almost decided that I would sit this one out. I wouldn’t be able to weather the storm of challenging topics. I laughed at myself and thought girl, all the things you have weathered and survived you are going to let one little blog on a difficult topic get you. Yes, I was. Every day I tossed thoughts in my head about what I should write about and here I am writing now and not one idea do I have to make this a wonderful, touching or inspiring blog. Maybe that isn’t the reason we are supposed to be doing this. Life isn’t always wonderful and stories shared about our lives are not always inspiring and some people that we do come into contact will never be touched by our words. So what? I write for myself. I write because I need to. We all have our reasons, some we can share and some we can’t. So I plan to weather this blog, letter by letter. In the beginning I was going to be cute and say wouldn’t it be  cool, if you could put your dna code into a computer and it would give you, your weekly forecast. Monday you will be mildly flaring. Tuesday you will be depressed. Wednesday you will have severe back pain. Thursday and Friday look to be the same. Saturday will be mildly aching and Sunday you will feel normal. Now that would be one hell of an application for your Iphone. Then I thought I would share with you how weather affects me. I always know when it's going to rain, my hips will ache, and I feel like the pressure in my chest is going to explode. I spoke to my doctor about it thinking I was losing my mind. He told me the barometer changes in the weather affect people with Ankylosing Spondylistis. I am almost as accurate as our local weatherman is, maybe that will be my new job in the future. Then I was going to share with you the storms of Ankylosing Spondylitis that I have weathered in my life. I remember at the age of twenty-one stepping out of bed, and a shooting pain in my left heel. I couldn’t walk the pain was so unbearable. I wore shoes that were 3 sizes to large for me for years, because I had a 2 to 3 inch knot on my heel in the back of my foot. Was horrible to look at. It was hot to touch and so tender I couldn’t stand to touch it. I suffered with this for many years. After about three years of remicade treatment I was able to wear my normal size shoe again. I wear a size six and it was wonderful to get rid of all the size nines. To this day I am still unable to walk barefoot even on carpet. I step out of the tub, into shoes. I get out of bed into shoes. I am never without a pair of sandals at my side. I can only wear sandals, because the pain in my feet is so unbearable. Then I was going to tell you about the pain in my neck and arms that I suffered with for years. Doctors told me it was tension. My hands were always tingling and had sharp pains it was like when your feet fall asleep. I suffered with that pain for four years. One morning I woke up and couldn’t speak, or feel my face. I went into the restroom and my face was turned to the side. I appeared to have had a stroke. My father had one in 1984 that left him paralyzed and unable to speak, so I was terrified and frightened about my future and how I would care for my family. I ended up in the hospital and had to have an emergency cervical fusion on my neck. I was sitting in the room waiting for them to take me back to surgery when the nurse came in carrying my chart. She said all right Judy are you ready for your back surgery? Fear, fear that I had never felt before shot through me, and up off the bed and down the hall I went. It was not easy  convincing me to go back and have the surgery. The reason for my absolute terror was the fact that my twenty-year-old cousin had gone in as an outpatient to have her tubes tied, she was gassed accidentally and died. I was fifteen at the time and that fear has consumed me every time I have been put to sleep, as of today that is 31 times. The intubation done on me during this surgery was so difficult that to this day my fear is so strong that I have put off a life or death surgery for over two years. I thought maybe I would share with you the storms I have weathered in life, but was unsure of what to share. I worry if my husband will be able to weather the storms of Ankylosing Spondylitis wife and marriage. I came across a picture of Eeyore, with his little head down, walking with a cloud of rain over his head and thought he should be the poster child for Ankylosing Spondylitis. He shuffles slowly where ever he goes with a touch of sadness about him no matter what the occasion is in his life.

That is how I feel, no matter what I am doing or who I am with, there is always a touch of sadness in me. This disease has taken a part of me away, causing my loved ones to never know who I might of been. This disease changes you, not only your body, but your mind, heart, and soul. I wonder sometimes who would I have been had it not been for this disease. Would I still be a compassionate person?  Would I still be a person who does kind deeds?  Would I be someone I can be proud of? I may not be proud of what Ankylosing Spondylitis has done to my body, but I am proud of the person I am. I am thankful that Ankylosing Spondylitis has taught me to sing in the rain.
I may not be able to stand tall,  but I will stand beside you.
I may not always be able to spend time with you,  but there will never be a time you aren't inside my heart.
Today when I signed on face book there was a link to a story. I clicked on it and thought this is what the topic of weathering the storm is really about.  I struggled to write this blog and never needed to, it had already been written for me.
Nick Vujicic talks about going through the storms in life. The thing that touched me the most is when he speaks about not having hands to hold his wife’s hand, but says when the times comes he will hold her heart.
http://www.youtube.com/watch?v=Gc4HGQHgeFE&feature=player_embedded
http://www.lifewithoutlimbs.org/
Life is about living it, to the best ability that you are able to. It's  about getting through the storms of life the best way you can.
It's about looking back one day on your past, realizing just how strong you really are,  by seeing what you had the strength to get through.
It is about weathering the storm called life waiting for that rainbow to come through once again.
Weathering the storm for me is about having the courage to get through any challenge life brings my way and having the faith in my self to do so and the hope that I will.
My friend,  it is not what they take away from you that counts;
it is what you do with what you have left.  By Hubert Humphrey
If you think you are beaten, you are,
If you think you dare not, you don't.
If you like to win, but you think you can't, It is almost certain you won't.
If you think you'll lose, you're lost,
For out in the world we find, Success begins with a fellow's will.
It's all in the state of mind.
If you think you are outclassed, you are,
You've got to think high to rise,
You've got to be sure of yourself before You can ever win a prize.
Life's battles don't always go To the stronger or faster man.
But sooner or later the man who wins, Is the man who thinks he can.
~ C. W. Longenecker ~
This blog is dedicated to me for weathering the storm of challenging topics.
This blog is written in honor of my daughter, Christy. I pray one day while looking in the mirror, she will see herself through my eyes.
Have You Ever Seen The Rain
http://www.youtube.com/watch?v=Gu2pVPWGYMQ

Sleepless In Texas

Week 07: Subject: Sleep

WHY IS SLEEP IMPORTANT TO YOUR HEALTH?

Those seven simple words put into my Internet search brings up about 5,090,000 pages of important information telling us why sleep is important to your health. I have spent years struggling to get a good nights sleep, most of the time the pain was too much to get comfortable to get a full nights sleep. As my Ankylosing Spondylitis progressed so did the amount of pain I endured. It became impossible for me to deal with the pain of lying down on the bed and finding a comfortable way to sleep. Every doctor visit for more years than I can count ended up with me in tears and frustrated and angry. I would always ask for something to help me sleep. The response was always, well it is short-term use only and is addicting so there is really no need to begin it. You will need to find a happy medium that will bring you relief. I became desperate, I drank, and I took over the counter drugs having no clue if they would mix with my prescription drugs. I always meekly listened and followed my doctor’s advice as society and our mothers taught us to. I was only able to become my own advocate out of pure desperation. I was at my pain management doctor, for my once every three-month visit. How are you, where do you hurt, how are you sleeping, what is your pain level and here are your prescriptions and see you in three months. I finally got the courage borne of desperation to question why I couldn’t have a prescribed sleep aid to help me. The response was I (doctor) am afraid you will become addicted to sleeping aids, and we will have to deal with your addictions. I said you are f…, well let me rephrase that, I said you are kidding. I have been given every narcotic drug and procedure you can imagine with no thought of consequences. I mean really? You are afraid I will become addicted to sleeping pills, so what if I do? I have to sleep every night till the day I die. I told him you tell me how important it is to my health and well-being to sleep, yet you won’t help me. I told him that I need to sleep, and I can’t because of the pain. It hurts to lie down, it hurts to have the covers on me, and it hurts to turn over. I finally convinced him, that even if I did become dependant on the sleep aids, it would be worth it because of the benefits of sleep. I have been prescribed the smallest dose of  ambien for the past 4 years and I take a half a dose nightly

I do not have a sleeping problem; I can fall asleep at the drop of a hat. My sleeping dilemma is caused by pain, pain in every fiber of my body and I am not able to lie down in the bed, without crying out in pain. I am thankful that my doctor was willing to listen to my first attempt to be my own medical advocate, and I am thankful I loved my self enough to do so. What that day taught me, was I do have the right to challenge my doctor, I do have the right to present my side of the story, showing the pro and cons. Sleeping is as important to health as are eating properly and getting proper exercise. It is actually damaging to your health to work too hard and not get enough rest. Although most of us have heard we need eight hours of sleep a night to maintain good health, we are seldom reminded that quality of sleep is just as important as quantity. Poor quality sleep can lead to poorer performance at work, accidents, and mood swings. Health problems also begin to develop if poor quality sleep persists for a number of days or weeks.

Remember you have to be your own best friend, both physically, emotionally and in your health care program because you have the most to gain or lose.

I pray each sunset brings you peace and comfort and each new sunrise brings you hope.

Did You Know

Week 08: Subject: Friendship


When friendship was suggested for our Masquerade of Words weekly topic, I knew exactly what I was going to write about. I thought this is going to be the easiest topic I ever do.  I couldn’t have been more wrong. It has turned out to be the most difficult one so far.
My first thought was to share with you the story about my best friend, Diana. I met Diana when I was a young girl, and through a very difficult time we managed to become best friends. I sat beside her for several years watching her battle against bone cancer. I learned the meaning of helplessness, but most of all I learned the true meaning of courage and strength. My best friend Diana died seventeen days after her sweet sixteenth birthday. She has been gone for thirty-five years and the loss is still as deep as it was the day she left us. I find myself not able to find the words to tell you what her friendship meant to me and still does.

So I decided I would share with you how Ankylosing Spondylitis has affected my friendships through out my life. I was going to share with you how one of my close friends said, “You know what, your life is such a drag Cookie. You are always sick or hurting or have a tragedy in your life. I just can’t deal with it.” I ended my conversation with her by saying that I am sorry my life is so difficult for you. I hung up the phone and never spoke to her again. I worked beside her for many years never saying a word. She abandoned me during one of the hardest times of my life. I had just lost eleven people I cared for that year. I was battling one of my worst flares of Ankylosing Spondylitis, it ended up being one of the most difficult periods this disease would ever cause for me.  I had just shared with her that the doctors told us that my grandson was going to die, and we should consider him as an organ donor. Hunter was two months old at the time, and that was her response to me, “your life is such a drag.” I am sure Ankylosing Spondylitis has cost all of us dearly, when it comes to our friendships and relationships.
Then I thought I would write about how we should all be our own best friends, how we should be kinder to our selves and forgiving just like we would be to other people, but we know that already. We should be the friends to our self that we want from others.  I’ve learned the hard way just because people didn’t love me the way I needed them to; doesn’t mean they didn’t love me with everything they had.  I have struggled really hard with this blog, because I couldn’t find the right thing I felt I should share with you that you didn’t already know or had experienced yourself.
I have started this blog over more times than I care to admit. Wondering what should I share with you, what experience, wisdom, or understanding could I possibly write about? I have five word documents started at this very moment about friendship; none sharing the right story that I feel is somewhere deep inside my heart.
Yesterday, August 16, 2011 I decided I would search the Internet for inspiration, or at least a cute picture about friendship I could share with you.
Most of the images were of best friends, something I can’t write about. I was just about to give up when I found it. My inspiration.

“ A friend is one to whom one may pour out all the contents of one’s heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keep what is worth keeping and with a breath of kindness blow the rest away.” Arabian Proverb
That hit a chord deep within my soul. I had never seen the meaning of friendship spoken in such truth. Then it hit me, what I would write about. I have that. I have that kind of friendship in my life. In fact we all do. We have it in each other.
I am sure a lot of people would argue about the definition of best friend, I would have also, until I found this quote.
“My best friend(s) is the one(s) who brings out the best in me.” Henry Ford

This is each and every one of you, you allow me the freedom to be myself, and you all bring out the best in me. You have given me the strength and encouragement to look deep within my self and find the person that I was meant to be. I am a better person because I have known you. I am the best that I am able to be, because of you.
I came across another quote that was the deciding factor in what this blog would be about.
“ Do not save your loving speeches, for your friends till they are dead: Do not write them on their tombstones, speak them rather now instead.” Anna Cummins
So I decided I would write to you all about something you didn’t already know. I wanted to share my feelings about my best friend(s).
My best friend(s) are a small group of people who suffer from Ankylosing Spondylitis.
I wanted to share how much each and every one of you means to me, and how important you have all become to me.
Each day I look forward to signing on and seeing what new things you all have posted. I want you to know how much I feel connected to each and every one of you, even over the Internet. It has been life changing for me to know that I have a close group of friends who GET IT. I don’t have to explain my bad day; I simply have to say I am having one. No explanations needed, just acceptance and understanding. I know that in my heart I can count on any of them to be there for me.

“ It is not so much our friend’s help that helps up as the confident knowledge that they will help us’” Epicurus
I know in my heart that when I am struggling there is someone there to offer me encouragement. I know that when I am heart broken there is someone there to offer me compassion. I know when I am unable to find the words to express myself; they are able to hear me. I can’t begin to tell you how much everyone has helped me during this part of my journey. There are times for me, that the only friend I feel I have in the world is you. I don’t have to hide behind a wall; if I do it’s a wall of glass.
You all see inside my soul because you see your self there as well.
I know that when my world becomes dark, that I am never alone, because of you.
I wrote this quote a long time ago.
The eyes are the windows to the soul; if they look they would see.
Only the broken and shattered pieces that are left of  me.
Each of you has had some part of helping me glue myself back together. I may not be perfect but I am whole.
“Walking with a friend in the dark is better than walking alone in the light.” Helen Keller
I know that from this day forward I will never again walk in darkness alone.
I can’t express to you what that means to me, but I don’t have to because you understand.
Ankylosing Spondylitis hasn’t changed the person I am, only my purpose.
I may not make a significant change in this world, but you have made a significant change in mine.
I feel valued, understood, accepted and loved.

“In the end, we will remember not the words of our enemies, but the silence of our friends.” Martin Luther King Jr.

What is a friend? I will tell you. It is a person with whom you dare to be yourself. You do not have to be on your guard. You can say what you think, and be genuine… just you. They understand those contradictions in your nature that lead others to misjudge you. With them, you breathe freely. You can avow your little vanities and envies and hates and vicious sparks, your meanness, and absurdities and, in opening them up to them, they are lost, dissolved, on the white ocean of their loyalty. They understand, as you do not have to be careful with them. Best of all, you can keep still with them. It makes no matter. They love you. They are like fire that purges to the bone. You can weep with them, laugh with them, and pray with them. Through it all – and underneath- they see, know and love you.
Thank God for friends, as they are one of life’s true blessings.
Friendship to me is..........
Finding that
Real person who
Is always by your side and
Eager to help you in your time of
Need, someone who
Doesn’t want anything from you except a
Sincere, loving, giving and
Honest friendship; the kind that you carry
Inside your heart even when they are no longer a
Part of your life.  By Cookie
“ No man is useless while he has a friend.” Robert Louis Stevenson
Thank you, from the bottom of my heart and the depth of my soul.
Dedicated to my Ankylosing Spondylitis Family.

Calendar Girl

Week 09: Subject: Social Outings

Mark your calendars it's a date!

Appointment books, calendars

and

notebooks keep my life on tract.

Doctor appointment: check calendar!

Notebook: remember to call ….

Spend the day with family: check calendar!

Notebook: ask doctor about….

Clean house: check calendar!

Notebook: things to discuss with hubby….

Grocery shop: check calendar!

Notebook: Nanny don’t forget….

Date with hubby: check calendar!

Schedule.    Scheduled!    Scheduled?

Sometimes I feel like I should be covered in ink.

From all the notes I jot down

and the calendars I check off

just to keep my life organized

and my stress level easier to deal with.

Schedule.    Schedule!    Schedule?

I keep a  notebook and calendar

on the counter at all times.

I feel like I should be a calendar girl!

Wouldn’t life be grand if you had a crystal ball?

You could tell the future.

Just think, you would know ahead of time

when days are going to be good or bad.

Then you could plan when you

want to be

SPONTANEOUS!

I miss being spontaneous the most.

I miss living.

I mean Living my life.

Ankylosing Spondylitis has

taken the spontaneity out of my life.

This disease has robbed me of many small freedoms,

that I used to take for granted.

The weight of this disease is unbearable at times.

I miss the freedom of grabbing the telephone.

Calling a friend and saying hey lets meet for lunch!

Ankylosing Spondylitis has to be picture perfect.

Before you are able to run out the door and have fun!

There are so many things we have to make sure of

that “normal” people have no clue about.

One of the things  I can’t be

spontaneous about anymore is bath time!

I am not allowed (hubby’s rule of course)

to get in the tub UNLESS he is home!

Seems he has issues with me falling.

( We won’t go into how this rule was decided!)

Things I  worry about

toes painted,

legs shaved,

hair washed,

and on and on.

THEN

and

only then

am I ready to be

SPONTANEOUS!

One thing I used to take for granted

was clean clothes.

No worry!

There were ALWAYS clean clothes.

Now it’s like world war three

between that washer and me!

Even if you are lucky enough

to have all the clothes washed.

Will you find something

you can be comfortable in

Today?

Clothes for me have become painful.

They feel like they weigh a hundred pounds.

They hurt my raw skin.

They hurt my hips.

Sometimes I struggle to breathe.

Pure torture.

Shoes?

We won’t even discuss that.

My style of shoes

are flip flops.

Heels hurt my back.

Tennis shoes can’t tie them.

Shoes hurt my feet.

Shoes hurt my heels.

So flip-flops

are my new best friend.

and I can’t stand them!

There are so many things

you have to consider

when you go out,

that never cross other people’s minds.

Every day outings are difficult.

Doctor appointments.

Running errands.

Grocery shopping.

Ankylosing Spondylitis causes even

the smallest of outings to

seem like a circus show!

It isn’t a life of simply grab

your keys and run out the door.

Takes planning, tools, and being prepared

before you can adventure out.

First you have to find out:

Where are you going?

Who is driving?

Are you able to

even get in the other person’s car?

Then you have to wonder about

how long  it takes to get there.

Will there be difficulties in your route,

that place you in harm’s way

if you are driving.

Will you be able to ride comfortably

in their car or for that amount of time?

Something to worry about

when dealing with

Ankylosing Spondylitis

is how much pain

will you be in when you get there.

Then you have to

worry about parking.

Will you find a handicap space

or

one at a distance you can manage

after the difficult ride in the car.

People have no idea how far

a hundred  feet can be

for someone who is in pain

every step of the way.

The biggest thing you have to consider

is the social outing it’s self.

Family gathering?

Day with the kids?

Movies?

Is it an activity you can even manage?

Are you in too much pain?

Are you coordinated enough to do it?

Physically able to?

Mentally willing to try?

Too fatigued?

So many questions surround every part of our day.

Living in Texas

our world consists of

Bar Be Ques

family picnics

anything outdoors.

That is the hardest for me.

The heat is difficult for me to deal with.

I worry about the

lawn chairs mostly.

Can I sit in it? Will I hurt sitting in it?

Will I be able to get out of it?

Will I look like fool?

Will there be a place I can sit comfortably and eat?

If there isn’t a table for me to sit at.

I will not eat.

I struggle eating food from a plate on my lap.

I don’t even bother, it’s too much of a hassle.

I’ve always loved picnics.

That is a dream of the past now.

I can’t get up and down off the ground.

I can’t get my legs to work to sit on the ground.

I am unable to sit without back support.

Life is no picnic for people with Ankylosing Spondylitis.

  

One of my biggest challenges with

social outings for me,  beside the car issue,

is the type of seating I will have to deal with.

Movie theatre seats kill me.

I can’t lean back and watch, so I sit straight up.

Restaurants are difficult, booth or chair?

Large table or small table?

Friend’s gatherings are standing room

for me most of the time.

Ankylosing Spondylitis

has caused a lot of obstacles for me

when I leave my home.

Many times when I decline,

my family or friends

I feel like a witch,

because

I don’t have the energy

or I hurt to much to try.

Ankylosing Spondylitis

isolates us from the people in our lives

and from living our lives.

I spend a lot of  my time alone.

On those wonderful occasions when everything is good, and I can mark off things on my mental checklist, and enjoy time with family

or friends or a special treat just for me.

Those are the days of my life that I treasure

and help me through difficult times.

I think people fail to realise

how difficult a simple task can be

for a person with Ankylosing Spondylitis.

How hard, painful and stressful

it can be for us to go on outings.

It takes a toll on us physically, and emotionally

and sometimes the price we pay is very steep.

Some days are so difficult and painful

you wonder why you got out of bed.

My new year’s resolution this year

was to be my own best friend,

to encourage my self to do more things,

to take better care of myself

but most of all to love myself enough

to remember I am worth the extra effort

that it takes to live my life.

To remember

every single outing

every single day

no matter if they’re

good or bad

is still a gift.

A gift I intend to enjoy to the best of my ability.

Success is never final. Failure is never fatal.

It is the courage to continue that matters most.

These beautiful calendar pin-up girls are the work of Gil Elvgren.

 Calendar Girl By Neil Sedaka

 http://www.youtube.com/watch?v=-V03f74P4_o