A.S. Face 0062: Cookie Hopper

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Cookie Hopper being interviewed by Dan Reynolds

for This AS Life Live!

Banding Together With Cookie and The SAA

My name is Cookie, and I am a “Face of Ankylosing Spondylitis.”

My diagnoses came in 2002 when I was forty-three. I started showing symptoms when I was about twelve and began seeking answers when I was around twenty. I don’t remember a time in my life that I was well or without pain. It’s all I have ever known.

My first memory of showing symptoms was when I was around twelve. I was in gymnastics and having difficulty touching my toes and doing sit ups. My instructor wasn’t kind to the young girl who was too lazy to put any effort into the activities. I ended up failing because I could never do those two things required and it’s something that I’ve never been able to do. During that time my sister was active in cheerleading and I spent a lot of time trying to learn the cheers. My coordination and balance was always off and many of the moves were painful for me to do, from that time on I was known as the klutzy one. I remember one time that my sister and several friends were doing gymnastic tricks and I wanted to join in. It was amazing to watch them do back bends. I tried, they tried to help me. They put me in every imaginable position, pushing, pulling, and tugging to get my back to bend. Thinking back now I’m amazed we didn’t break my back. I have never been able to lean backwards.

When I was about thirteen my mother noticed I was slouching all the time, she was forever saying sit up straight, don’t slouch, straighten your back, over and over, I never managed to not “slouch.” In her desperation to keep me from slouching and becoming humpback, she bought me a back brace; I wore it for almost a year with no improvement. It was decided then and there I was just a slouch. I’ve always had trouble sitting up straight or “standing tall”. My mom and granny Irene used to make me walk with books on my head so I would stand perfectly straight. Well let’s just say in my case books are for reading. Later on that year I began having odd pains in my hip region and a terrible ache. It was decided the pains were due to the joys of becoming a woman. I’ve always had a constant ache in my pelvis area; even today at the age of fifty-two I still suffer from it.

During the year I turned fourteen, I became involved in volley ball and cheerleading. I managed not to get kicked off the team, but I had to work twice as hard to be half as good as everyone. I struggled trying to keep up with my peers, I was always too tired, hurting too badly, or just not able to do everything they could. That was the beginning of my isolation in life and struggling with feeling different. During this time I began having stomach aches and cramps, it didn’t matter what I ate or didn’t eat, the pain would always come. I would go for days with severe diarrhea or a week with no bowel movement. The pain was constant and severe. There were times I would double over in pain unable to bear it, most of the time I just kept quiet. One evening while at my uncle’s house, the pain became so unbearable that I collapsed to the ground doubled over and unable to straighten myself up. After many failed attempts to straighten me up. I was rushed to the hospital where I stayed for several days; the diagnosis was epilepsy of the stomach it wasn’t until I was thirty-nine that I was told I had Irritable Bowel Syndrome. It has always been a difficult thing to live with, but after taking remicade for two years the pain became manageable, but it’s still a constant problem in my life.

During the next few years I struggled with severe stomach pains, taking medicine for epilepsy until I became pregnant at the age of sixteen. I stopped taking every medication I was on, in order to protect the baby. I began suffering from headaches that became so bad that I was hospitalized. The doctor said it was also caused by the epilepsy in my stomach. The pain in my head, stomach and hips were becoming too much for me to hide, but I did my best. The doctor I had at this time sat me down and explained that more than likely I was going to be just like my mother, she suffered with rheumatoid arthritis and manic depression. The doctor explained to me that mental illness was the likely culprit for our pain. That was the last time I ever spoke to him. I took all kinds of medicines and finally one day just stopped it all. I figured why bother it didn’t help. In 1984 my doctors assured me the cause of my health problems were depression and the stress in my life, my father had just had a massive stroke leaving him paralyzed on the right side of his body. In 1984 at the age of 24, it was discovered that I had a small tumor located in the area of the pituitary gland.

One day when I was twenty-two, I climbed out of bed only to scream out in pain, unable to put my right foot on the floor. It went on for months and then one day I stepped out of the car and screamed out in pain from my left foot. Today I’m fifty-two years old and for thirty years of my life I haven’t gone barefooted. I step out of bed into shoes. I climb out of the tub into shoes. Never do my feet touch the ground without support to ease the pain. As time went on the back of my heels grew with inflammation and I was unable to wear shoes unless they were three sizes too big or backless. In 2001 my foot doctor said  he read an article about Ankylosing Spondylitis, and wondered  if that was what I had. He suggested I see a rheumatoligist, and I just kept putting it off, I was tired of the medical field treating me as if I was a nut case. Then he finally said I won’t see you again if you don’t see a rheumatologist. I owe my foot doctor everything for caring enough to keep pushing me to go. In 2005 after two years of remicade I was finally able to wear my normal size shoe again. I wear a size 6 and had worn a size 9 for thirty years. I’m still unable to go barefoot due to pain but at least my feet don’t look bigger than me!

When I was twenty-three, I began experiencing pain in my neck and shoulders. I worked as a telephone operator and assumed it was work related. I tried everything imaginable, heat packs, ice packs, icy hot, and massages but no relief was ever achieved. I went to doctor after doctor concerned about the pain in my neck, always being told nothing was wrong with me, it was work related. The pain in my body was becoming unbearable and a doctor I was seeing at the time said it was alright to take Advil in any quantity needed to help with pain, because they were over the counter.  My Advil habit started out at about ten pills a day, as the pain became stronger the more I would take. Over the years I averaged taking around ten to forty Advil a day. When a new doctor finally became aware of how many I was taking and how long I had been doing this, he put me in the hospital immediately to check my liver functions. I was very blessed that I didn’t have any liver damage. When I was released from the hospital I visited the doctor who said that I could do this to my body, only to realize he wasn’t concerned over what could have happened or may still happen to me. I have been monitored closely for any signs of liver damage over the past ten years.

At the age of twenty-four, I remember a strange feeling coming over me. I felt like I didn’t have the energy to lift my feet enough to put one in front of the other. The feeling is so strong I feel like the blood is draining out of my body, it happened quite frequently and still does. It was said to be caused by stress and depression, funny thing is I never felt depressed, stressed yes, depressed no. The cause of this wouldn’t be determined until I was in my forties.

My mother suffered with manic depression and every doctor I dealt with, was determined to make a history of daughter like mother. I finally went in for evaluation and testing and to this day I have been blessed with no signs of any type of clinical depression. I see a psychiatrist every three months because it comforts my physicians, and it also gives me a place to be honest and understood.

I struggled with shortness of breath ever since I was a young adult; allergies and being premature were always considered the culprit. I got colds constantly, and it didn’t matter what time of the year it was and it almost always developed into pneumonia. Over the years it continued to get worse, doctors later realized that my ribs were fused and causing constriction in breathing and was a contributing factor to my problems with pneumonia. No one bothered trying to find out why my ribs were fused, they said it was from being so premature, my mother carried me less than 7 months and my birth weight was two pounds, three ounces. It was not until 2004 that Ankylosing Spondylitis was determined to be cause of my fused rib cage and pulmonary problems.

The pain in my neck was becoming extreme, and I was losing range of motion. I brought this to the attention of every doctor I visited and they said it was due to me sitting in front of a computer at work for so many years or it was just stress. I was told if I relaxed then I would be able to move it. I decided one evening to get drunk to see if I would relax enough to move my neck. The test resulted in a drunk with a stiff neck. When I told the doctors about this they were just amused.

I continued on, learning how to overlook what was wrong with me, and push it aside. I can’t tell you how many times in my lifetime, I heard you’re just lazy, you’re a klutz, you’re just depressed, you’re imagining it, you’re dramatizing it, you’re trying to get attention, you’re making it up, you’re mentally ill, you’re a drug seeker, you are…you are …you are………I struggled with many things for many years in silence, thinking it was me. Then I finally accepted it was “just me.”

When I was around thirty, I began getting a strange sensation in my chest and my heart would beat rapidly and then slow down, I would become so weak and the old familiar sensation of blood draining out of my body would happen. I went to see a cardiologist and test were done, the results being stress, over weight and high blood pressure. The doctor did tell me that my heart stops beating every third beat and then starts up, saying it must be a birth defect. The cardiologist agreed with the others that my “issues” were stress and depression. I left thinking it must really be all in my head. These problems got worse over the years with no explanation until 2009 my cardiologist determined the cause of my heart problems were due to acute inflammation from Ankylosing Spondylitis. He recommended that I should have a heart pace maker.

As the years continued on, so did the pain. I began having extreme pain in my arms and hands then the numbness came. I explained to the doctors that my hands and arms felt the same way your feet do when they fall asleep, once again I was told its work related or just stress. During my thirties the pain intensified to the point that my life was unbearable, not only was I dealing with the pains in my body, a brain tumor, and surgeries, there were also many tragedies to deal with. Then I began hurting in my lower back, not bad but constant. I chalked it up with trying to favor all the parts of my body that was hurting all the time.

The year I turned thirty-eight, my life changed forever. I was on the couch watching television and went to get up, only to end up on the floor in agony. I had gotten a sharp pain in my lower back as if I had been stabbed. Every time I moved I would get that sharp stabbing pain. Over the next few weeks it had gotten so bad that I couldn’t get out of bed. I did my best to not eat or drink so I wouldn’t have to get out of bed. I ended up becoming seriously ill due to malnutrition and dehydration. This crippling pain continued for two long miserable years. I tried every procedure, and drug you can imagine, nothing helped. My life and body was going downhill, not only was I in extreme pain, I was battling other serious medical issues also, all the while pretending to be “ok.”

During the year of 1999 at the age of thirty-nine, it ended up being the worse year of my life, and that’s saying a lot. In February my mother died unexpectedly (on the day my dad was due to have heart surgery), my father had heart surgery a week later. Then in the month of May, my daughter, husband and myself all ended up having surgery. The pain in my back continued to get worse. One day while at work, I began having trouble breathing I kept going outside to catch my breath, and the pain in my body intensified. I couldn’t leave work due to being on a disciplinary step due to my health, and family health issues. So I continued to work in pain and unable to breath. When I left work I drove my self to the hospital. I ended up spending several days in I.C.U diagnoses was onset of congestive heart failure.

Life continued on, my pain continued on, and my desire to live was leaving me. I couldn’t find the strength to continue, I was miserable, my family was miserable and I couldn’t see beyond the pain. I finally came to a point in my life that I gave up. I wasn’t “depressed” or suicidal. I wanted to live, I just didn’t want to “live” the life I was existing in. I kept the “means” to end my life close by, it was my security blanket and freedom all in one. I didn’t have to do this anymore if I didn’t want to. Then one day about a year later, I woke up and decided I couldn’t live this way another minute. I have known my husband since the summer before first grade. We have been best friends all of our lives. We laugh about being so connected we are Siamese twins. That day my husband came home during the middle of the day, something he never did. He said he had a bad feeling. I had just finished writing him a letter explaining my decision and that I did love him more than life it’s self, just not my life. My “plan” was discovered and after much pain, shame and crying it was decided “WE” would demand an answer to what was wrong with me. So our war on doctors began.

First doctor.. spent the whole time talking “cars” with my husband never once asked me anything. Then he ends the visit by saying, take tums for calcium, vitamin D, and as much Advil you want, they won’t hurt you because they’re over the counter.

Second doctor…after examing my films and mri came in, leaned against the wall and said, “Let’s get one thing straight, I am no pill pusher.” My reply was good I am not a pill taker and you Sir are an ASS and should at least give people the benefit of doubt or wait till they ask for “drugs.” I walked out and the lady asked me if I was going to pay. I turned, pointed to him and said God is paying for it today.

Life continued on, the pain becoming worse, I tried everything doctors could think of. Then when I was forty, I woke up feeling “weird.” I still had the numbness and pain in my hands and arms, the pain in my neck and lack of mobility, that I had for years, but this morning I couldn’t feel my face. When I went to the bathroom, I was shocked, my face was turned and my mouth appeared drooped. I had a slight slur. I thought I was having a stroke, like my father did, in 1984 leaving him paralyzed on his right side. I called my doctor immediately and was sent to the hospital. Test were done and I was sent to a neurosurgeon. I ended up in emergency surgery to have a cervical fusion.

The surgeon suggested the anesthesiologist do a fiber optic intubation for this surgery, the anesthesiologist had an ego bigger than his common sense. Without going into great detail I will tell you that the recovery time for the damage of this was more than eight months, and still have pain caused from the intubation of this surgery.

When I woke up I couldn’t feel the pain in my hands, arms or neck. While drugged induced I panicked thinking they had cut my arms off, everyone assured me that wasnt the case. When I finally woke up, I realized  the pain I had for over fifteen years was gone. The doctor came in and said, I have good news and lots of bad news. I wasn’t sure how it could be bad news since the pain was gone and I felt like a new person. I said well I want the bad news first. He says, you have D.I.S.H. (Diffuse Idiopathic Skeletal Hyperostosis). I said what is that? He says it’s where you have a little extra bone growth, nothing you can do about it, they can’t treat it and have no clue what causes it, but it isn’t a big deal. I had to believe him, after all he was a neurosurgeon, the best in our area. He says you also have thyroid tumor, I suggest you get that treated as soon as possible. The good news is your neck is stable and you aren’t going to be paralyzed. I was sent home wearing a neck  brace and wore it for ten months, twenty-four hours a day. The day I had it removed, he became agitated with me, because I was unable to bend my neck. He cursed under his breath, and then said to me sarcastically, “everyone I do this to, THINKS they can’t bend their neck.” I sat there in tears and said I haven’t been able to bend my neck since my late twenties. He says to this, oh that’s right you are the one with DISH, and sent me on my way.

Only one problem remained, the crippling pain in my back.  The pain got so bad that I was unable to lay down in bed. I slept in chairs or didn’t sleep at all. I asked my doctor for something to help me sleep, and was given Ambien. When I asked about staying on it permanently the doctor said no. When I asked why he said because I would become addicted. I said are you serious? You will give  me narcotics, medicines that could kill me and you are worried I will become addicted to a sleeping pill. I take the smallest dose and divide that in half. I have no trouble “sleeping” it is the pain that causes the issue. Thankfully he listened to me.

Trying to walk so that I wouldn’t hurt my back began causing extreme pain in my feet again. I went back to my foot doctor and he decided I should wear walking cast on both feet for a couple of months. While I was there he noticed my distress over my back pain. He sat down and said, “talk to me.”  So I did for almost two hours. He told me, he believed with all his heart that I have Ankylosing Spondylitis, and he had just read an article about it. When I came back to him  to have my feet checked, he asked if I had gone to see a rheumatologist, I admitted I hadn’t. He says I won’t see you again till you do.

The  first doctor said, well I don’t have any idea what DISH is, but do as they said  to do, tums, Advil and vitamin D. She told me there was no need to come back because she had no clue what to do. So I didn’t. When I went back to my foot doctor and told him about what happened, he was shocked. He said I have a doctor I read about, and want you to see him. So I called this new doctor’s number. A man answered the phone, saying Dr. L. I said Dr. L do you know anything about Ankylosing Spondylitis, and he chuckled and said yes I do, in fact I specialize in it. So I made an appointment and he spent four hours on my first visit with me. After test and examination it was confirmed I didn’t have DISH, but I had Ankylosing Spondylitis. The day he gave me my diagnoses, he hugged me as I cried. He says, Honey it will be ok, and I told him it was already ok, because now I had a diagnoses and I wasn’t crazy. He promised he would do his best to make my life better in any way possible.

I was placed on remicade and other medications. For the first four months I thought I was going to die, the remicade was difficult for me, he encouraged me to hang in there, give it time to work.  I trusted him and gave him the time he needed. Then one day I woke up and felt “normal.” I felt new. I ached, but I didn’t hurt. I have been under his care from 2002 until last year, he retired and I still keep up with him and his family. I call him on his cell often. I will forever owe this man my life, my love and my respect till the day I die.

A few years after being in his care I noticed I couldn’t cross my legs. It was determined I needed a left hip replacement. I went to a surgeon to discuss the surgery, after discussing my trouble with the intubation of my last surgery, he suggested I see an anesthesiologist. They decided to do cat scans to see if normal intubation was possible, it was discovered the surgical plate left in from my cervical fusion surgery was now encased in bone. This changed the dynamics of my surgery and made it a more difficult and dangerous surgery.  It was decided that I would have to have another cervical spinal surgery to remove the plate and try to remove the bones that was causing my difficulty in swallowing. After many months of detailed discussion about the surgery, what the outcome may be  and the fear of what happened during the last surgery. I told the doctor I needed time to decide what I should do.

At this time I have  elected not to move forward with any surgeries. I have decided to get my life in order. I am working on making wonderful memories, righting wrongs and coming to peace with my self. The remicade for the most part keeps my pain under control.

I am thankful that my husband was able to stop me from taking my life.

I am thankful I am still able to be a mother and grandmother.

I am thankful my foot doctor cared enough to persist I see a rhuematoligist.

I am thankful Dr. L was kind enough to honestly “listen” to me and was committed to giving me a life I would want to live.

I am thankful to be a part of the A.S. community which is made up of wonderful and strong human beings.

I am thankful that A.S. has taught me to stop, slow down, enjoy the simple things in life.

I am thankful Sean reminded me, ” Happiness is forgiving my self for being human.”

I am thankful Kelly encouraged me to  “blog.”

I am thankful for this opportunity to do a story about my life with Ankylosing Spondylitis.

My name is Cookie and I am a “face” of Ankylosing Spondylitis.

Spondylitis Plus Winter 2012

Cookie Has Ankylosing Spondylitis

Texas United States of America

A Beautiful Gift from Thomas

A Beautiful Gift from Lucy

A Beautiful Gift From Lucy

“No work is insignificant. All labor that uplifts humanity has dignity and importance and should be undertaken with painstaking excellence.” – Dr. Martin Luther King, Jr.

This beautiful apple was created especially for Cookie  by Jenna Dye Visscher

Cookie was nominated by Joy Last & Lindsay Cairns

Joy said, “I would love for an apple to go to Cookie Hopper who does a great job caring for all of us who have AS. She hasn’t been feeling well lately and a blue apple would cheer up.”

Lindsay said, “I second an apple for Cookie Hopper!!!! :)”

You can find other Apples For A Cure on The Feeding Edge Com or Apples For A Cure On Facebook both created By Jenna


Spondy Plus Page 1 Spondy Plus Page 2






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96 Responses to “A.S. Face 0062: Cookie Hopper”

  1. First, I love you, Cookie! You are so brave. You are beautiful!!! You may not “look like you do”, but you stand so tall!!! You stand so tall, we all have to look up to you! There is so much we all can learn from your story. Also, there is so much, all of us have in common with you. I hate that good people have to suffer. I hate that we have gone thru all this already, and yet, still there are people just now beginning this painful journey. I am hopeful tho that there will be better ways to diagnose it and faster ways with our stories out there. People will know what to tell their docs and to go sooner with earlier signs and symptoms. Thank you for putting the faces of a.s. together. It was a heroic, selfless thing that you did.

    Blessings and healing, Dana

    • Dear Dana,
      I love you too, you are one of the most bravest and courageous person I’ve ever had the honor of meeting and calling my friend. Thank you so much for the kind words. It was difficult to write my story and especially to add my face to it. But I am who I am and that is ok. Thank you so much for everything. With much love and respect Cookie

    • Cookie your story is more horrific than most and at the same time more similar to me myI would give any thing to talk to you and I also wish to purchase some extra bands if possible hope to hear from you soon my biggest goal after diagnosis is awarness you top and exceed all expections fullfilling one of my own goals thank you and everybody affected

  2. Your story made me cry. I can’t thank you enough for sharing. Because I felt like I was reading my own story. Years and years of you are fine. Me saying no I am not. Well then you are depressed. I was told eat more fiber and drink more water for my bowel problems. I felt ignored like I was talking to the wall. What a relief to finally know what is wrong with me. I can’t wait to have my doc diagnosis me and send me to a rhermy.
    Last week she finally sent me for a back xray and said I have back arthritis and a curved spine. Then for the past two days my chest felt so inflamed. And now sharp chest pain.
    So I started doing my own research. Everything you described age by age happened exactly the same way for me.
    I am 38 and I can feel me just getting worse. I keep telling my husband to adopt my middle son so he doesn’t go to his ass of a dad because I don’t how much longer I will last. He just looks at me like I am crazy.
    Nobody and I mean not one person understands my pain. Feels very lonely and I feel like a fraud like somehow I failed them. I knew my pain was real now maybe others will too. Thank you, you are a life savor.

    • Dear Jenny,
      Believe me I am no life savor, but I am someone you can count on if you need someone to talk to. I was so excited about doing this site until my husband reminded me that I would have to include myself. I struggled hitting that publish button to expose my self to the world. Thank you for making it worth every difficult letter I typed. Please hang in there. We are here if you need us. One day at a time and one battle at a time.
      Best of luck to you,
      Sincerely Cookie

      • Thank you again for being so couragous. I know its not easy exposing your true self to everyone. I keep how feel to myself and thank god I don’t have to anymore. It really does bring some peace of mind to find others to share with.

      • Dear Jenny,
        I hope this site does bring a lot of us peace, acceptance, and understanging. I want it to be a safe haven for us to know we are never alone.
        Thank you so much. I look forward to adding your story to the site.
        Sincerely Cookie

  3. Thank you so much for sharing your story Cookie. It brought tears to my eyes. You are a strong and kind person. I am so glad I know you and consider you a friend. Thank you for putting the Faces of AS up. Thank you for being you. ~ Kate

    • Dear Kate,
      Now I have tears. Thank you so much for your kind words. I am glad to be able to call you my friend and also think you are an amazingly strong women. I am thankful that I did start the “Faces Of AS” because it creates a bond and safe haven for all of us who feel alone. Thank you for being you!
      Sincerely Cookie

  4. Your experiences have made me realize how much more I can do. Thank you for sharing. And your foot doctor sounds like a wise man!

    • Thank you, you can do whatever you set your mind on, it may not be the same way you imagined. Thank you for reading my story. Yes he is and so caring.
      Sincerely Cookie

  5. Thanks Cookie for your story and this site! You help more than you know – the isolation, self doubt and pain scare me to death. I am only 40 and like Jenny – crying out for someone to help me with my youngest boy – just not sure how to go on with all the pain – but you are inspriation Cookie and I thank you for taking the time to write your story!

    • Dear Valerie,
      My favorite song is Valerie by Amy Winehouse. 🙂 Thank you so much for your kind words. I hope that I do help people in some small way. I know that I find comfort in knowing I am surrounded by wonderful people that have the same disease I do. I look for them for comfort, acceptance, guidance, understanding and knowledge.
      We are here if you ever need us. It has been an honor and privelege to do this site, and I look forward to adding you soon.
      Sincerely Cookie

  6. Well Cookie my dear friend what can I say such a long story and you still missed loads out. You have been through a lot in your life more than any one should have to yet you still look great in your photos I’m pleased about that I was frightened you would look like me and that I wish on no one especially a woman. You are a very special person Cookie there are not many in the world like you so supportive of others and having such a big heart. I am proud to have you as a friend xxxxx.

    • Dear Kevin.

      I know it was horribly long, but I figured this may be my only chance to ever get to share the “highlights” of my life with A.S. You are right I did leave loads out concerning my life, and the tragedies I’ve deal with, but it was about Ankylosing Spondylitis. None of us should have to go through rough times or suffering but it does make you appreciate your blessings more. You learn not to take anything for granted. You are kind to say I look great in my photos, I tease that I would scare the dead. It is harder I think sometimes on women, because society demands we look a certain way. But it takes a real ” person” to stop and see the real beauty inside a person. Thank you for calling me special and for your kind words. It means a lot to me. I am thankful that this horrible disease has brought me so many blessings, one of them being you my friend. I am honored and proud to call you my friend.
      Sincerely Cookie

  7. When I first met you Cookie, I was coming off a really difficult time that inspired me to write my story. I was writing it to get it all off my chest. I left so much out but I felt I had to keep some things back. It takes so much courage to open ourselves up to the world.
    For me, writing it changed my life. I have met so many wonderful people like you, who help me to know I am no longer alone.
    In 2009 and 2010, I was keeping myself very isolated – I was in so much pain emotionally, mentally and physically. I just hated to go anywhere or let anyone into my life. I had only a few close friends I interacted with and it was rarely.
    This past January, my husband introduced me to a free movie website that had chat room running on the side. I watched movies, mostly comedy and upbeat ones, I started to feel better and I started chatting. Then I found a channel that showed only Stephen King movies. I soon realized that many of us up in the middle of the night, were living with physical pain. We started to talk about it. We supported each other and encouraged each other, always asking how we were doing. One day the Broadcaster made me a Moderator for the chat room and I got a lot of my confidence back and was really encouraged. I met many very nice, very real people from that site who I have a lot in common with. I had a community with common interests and experiences. I made two very close and wonderful friends from that site. I may have never met them in person but I feel as close to them as I would if I had.
    I felt my confidence coming back and I started making and putting videos on my Youtube page, I was strong enough to take a risk again. I even gave out free hugs at an event here in Winnipeg. The videos are on Youtube. That experience really changed my life.
    It as only a few months ago that I started looking for AS pages on facebook and I made two more wonderful friends that I correspond with regularly and care so much about. Early in October, I expanded my reach out on the AS pages to see more of what people were talking about. I got to know you on October 8, the day I saw your call for Faces. I had just written my story about 24 hours or so before.
    Everything happens for a reason. We have been brought together to give each other strength and encouragement. To have a connection with others who understand. Thank you so much for being a facilitator for us in our journey with AS, Cookie. I appreciate all the hard work you do to make this such a wonderful site. I am grateful and blessed for meeting you and so many others.
    Our journey is not an easy one, but now we have each other.

    • Dear Diane,
      I dont think I will ever forget meeting you the way I did. You were my first Face that I got on my own! 🙂 Such an amazing and gentle spirit. I have felt so blessed to be among such wonderul people. I was amazed anyone would want to be a part of this. It has been life changing for me. I hope that one day when we have our 1000 people and we are making a huge differance in people’s perception of our disease. We all can sit back and say Yep I had a part in that!
      Thank you all so much, Thank you Diane for all you help and encouragement!
      Sincerely Cookie

  8. hi cookie,
    Wow !! youve been through so much .Me am just getting to grips with my illness i am still finding my limets and although am in the earlie stages they still say i may not have AS but are treating me for the symptoms because i am LHA B27 positive which they say covers a wide range of inflammation deases x today am on sick this is my 3 rd week i can honestly say am not coping too well but after reading your Story am even more determine to raise awareness and help fellow sufferers your all amazing xx love DNA

    • Dear Sharon,
      Thank you so much. We all have our limits and moments of not coping to well. I have been at the lowest point possible, but with being oen and honest I was able to get to a place in my life that I am more content. I am a positive person and always try to look for the best in everythings, sometimes it isn’t possible to, but you make the best with what you have. I am excited you will be raising awareness we are all amazing and you are too!
      Sincerely Cookie

  9. You are so brave – thanks for sharing your story. I feel like am just beginning this journey yet so many of the things you experienced in your youth and 20’s are things I faced and am facing now. You are an inspiration to all of us with this and the contributions to our community.

    • Dear Erin,
      We are all brave people. I try to make a differance and let people learn from our mistakes. Remember none of us are alone, we have each other.
      Sincerely Cookie

    • Dear Erin,
      Thank you so much, it was hard to do it but I am glad I did. Thank you for your kind words, we all work hard to make a differance. Remember you are never alone, none of us are.
      Sincerely Cookie

  10. Thank you, Cookie, for being courageous and honest enough to share your story. Thank you for starting ‘faces’. Reading yours and others stories, helps us all know we are not alone. We can relate to parts of so many stories. May God bless you. hugs,

    • Dear Elizabeth,
      That is one thing I know for sure, I am the most blessed person you will ever meet. Thank you so much for your kind words. It is with so much pleasure and honor that is given to me by everyone trusting me to do the Faces Of AS. It has been simply amazing.
      Sincerely Cookie

  11. Cookie your story is an inspiration to me. You are an amazing woman who’s bravery astounds me. Your story, and your work putting Faces together have given me so much hope for my future, hope that has dwindled these past few years. I’ve never quite lost hope, that seems like an impossibility to me, but because of you and all of these amazing people who’ve shared their stories, my hope has been rekindled. Your unbelievable story, courage, and amazing outlook on life have made me feel alive once more, not just merely living, but alive. Thank you, from the bottom of my heart, thank you 🙂

    • Dear Nicole,
      Your words made me cry and knowing that it affected you and others this way. Made it worth what it took to write it. There is so many amazing people on here. I want people to know that they need to be their own best friend and fight for that quality of life they deserve. We are here for you all. Live Laugh and Love.
      Sincerely Cookie

  12. Cookie you are champion,and i do look up to you,your story brought tears to my eyes.

  13. Hey gorgeous!! loved seeing your photo after all this time! I have read your story, and even though I knew most of it, I had a tear in my eye for my dear friend. I will have another read later. For the moment, well done honey pie, you have suffered so much and you have also achieved so much. You are a shining light in the AS world, and I am so honoured to be able to call you my friend. **hugs** and love xxx

    • Dear Jackie,
      Gorgeous? You must be sipping the cooking sherry! You are such a wonderful friend and I am so blessed and honored to have you as a friend.
      I don’t think anyone has ever called me a shining light in anything. Thank you so much, I want so bad for this site to collect the 1000 faces. So the AS community, the world and medical field will have to stand up and take notice. Thank you so much for being there when I need a shoulder, Thank you so much for encouraging me and for believing in me.
      With much love and respect Cookie “hugs”

  14. Dear Jackie,
    Gorgeous? You must be sipping the cooking sherry! You are such a wonderful friend and I am so blessed and honored to have you as a friend.
    I don’t think anyone has ever called me a shining light in anything. Thank you so much, I want so bad for this site to collect the 1000 faces. So the AS community, the world and medical field will have to stand up and take notice. Thank you so much for being there when I need a shoulder, Thank you so much for encouraging me and for believing in me.
    With much love and respect Cookie “hugs”

  15. Spondylitis Association of America Dear Cookie, thank you so much for sharing your story with us. What you have endured and survived is a testament to your strength, your amazing spirit, and the power of having a loving family. Thank you for being so honest in telling your story. It is an inspiration.

    Dear SAA,
    Thank you so much that means the world to me.
    Sincerely Cookie

  16. Wow Cookie. You are one tough lady. Thanks for sharing your story with us, and for all that you do to support the AS community.

  17. Dear Sean,
    Laughs it’s a good thing we only did a site about A.S. or you would find out how strong I really am. It’s my faith, my gratitude and appreciation for life that helps me to be strong. Believe me, I wish I could do more to raise awareness, but I do the best I can do.
    Thank you for your kind words.
    Sincerely Cookie

  18. Hello Cookie,
    Finally there is a beautiful picture of the woman behind the blog that is bringing everyone who suffers from AS together! You are inspiring to all of us, and as we all know we all have a different story but with the same diagnosis of AS. Some of us get it when they’re very young, some middle aged, and some older. Some have been misdiagnosed for years, and looked at as if we’re “druggies” when we arrive at an emergency room for help. Thank you so much for sharing your story, you are a brave woman, and inspiring to all of us, AS has not gotten to you who you are! Thank you for starting this amazing blog with all our personal stories.
    **Gentle Hugs**
    Hedy Francois

  19. Dear Hedy,
    I am not sure what picture you looked at, but thank you for the compliment. This site has been such a humbling and honor to do. I never expected the response to it to be like this. The out poor of letters is amazing. I can’t wait till the day we have reached our goal of 1000 faces. You are so welcome, it is me that is grateful!
    Sincerely Cookie

  20. Thank you Cookie for your story. I watched my Dad with AS and never thought I would have to deal with it. I do have the typical back pain and exhaustion but my hands are the hardest part for me to deal with bcause what don’t you do with your hands. You are the first person that I have learned that has had the horrific hand pain. I don’t feel so alone. Thank you

    • Hello Dear Pat,
      Thank you so much for your kind words. That is my goal for this site is for us to learn from each other and to also know we are never alone.
      I hope that you will consider submitting your story and one also for your father.
      Sincerely Cookie

  21. Unfortunately my Dad, my hero, is gone. If they had the medicine they have now he would never have had to go throught what he did. I might do my story. Thanks.

    • Dear Pat,

      I undertsand but we do have a section called A Face To Remember… to honor our loved ones who had A.S. Our goal is to make it where no one ever has to suffer. I would be honored if you did yours and your father’s.

      Sincerely Cookie

  22. Thanks, I will look for the site.

  23. Thank you for going into so much detail – especially about the stroke/tumour stuff. Just had a brain MRI yesterday – turns out they were looking for tumours or clots. I am still waiting for the results but it is interesting to see it could be caused by the AS.

  24. Cookie you are truly an amazing women, an inspiration and a modern day hero for so many. After being diagnosed for 12 years, and having multiple doctors confirm AS I find some part of me still believing the doctors that had me convinced I was crazy. Just this past August I saw a new eye doctor and in her words “Of course I know what AS is! I AM a DOCTOR after all.” and “right here in my book it’s list under a mans disease. I’ve never heard of a woman having AS”. My only come back was maybe it’s time for some new books. By the time I left, and after all these years one idiot could still feel so defeated. After reading the stories on this site it has given me the courage I needed. I have started compiling a collecting of pamphlets and article to educate this doctor so that she can’t do that to the next AS patient. I would like to include this webpage if that’s ok?
    I am sure I am not alone but I know that your courage and Kevin courage have inspired the change that needs to happen in me. I just can’t thank you enough.

    • Dear Carrie,
      I am at a loss for words, which is not often. Those words honestly do not apply to me, but I appreciate them more than you know. Your comment brought me to tears, and affected me in a way I never thought possible. I think it is time to make a difference in how the medical world views Ankylosing Spondylitis in general, but most of all how they associate it with a man’s disease. We will make a difference one day. Sincerely Cookie

  25. Thank you for sharing.

  26. Cookie you are amazing! Thanks for sharing your story and thanks for giving us an opportunity to share our AS stories. Thanks for giving Ankylosing Spondylitis a name and a “Face.” Happy 2012, may it bring you peace, love, joy & happiness!

  27. Your nomination details:

    Award: Rookie of the Year Award (http://info.wegohealth.com/ha-rookie-2011)

    Link: http://www.thefacesofas.com and http://www.cookiehasas.wordpress.com

    Reason: A month ago Cookie started a project called “The Faces of Ankylosing Spondylitis” She began by telling the AS community that she wanted a place for everyone with AS to be able to tell their story of diagnosis and living with the disease, and she wanted it to include a picture of themselves. Since then she has recieved over 150 stories and pictures of ASers, and has had over 30 THOUSAND views of the website. She is determined to reach her goal of 1000 Faces with AS…and her resolve and ability to reach this community is amazing and needs to be praised.

  28. Your nomination details:

    Award: Health Activist Hero (http://info.wegohealth.com/hero-2011)

    Link: https://thefacesofankylosingspondylitis.com/

    Reason: Cookie has quickly become a hero in the world of Ankylosing Spondylitis. Her project “Faces of Ankylosing Spondylitis” based on David Jay’s “The SCAR Project” has changed the lives of many who are living with this auto-immune disease. Giving them the opportunity to share their story, while also putting a “face” on this invisible, debilitating disease. My life was forever changed by participating in her project. I realized that rather than hiding that I was suffering, it was incredibly therapeutic to talk about the horrible disease that has plagued me all of my life. Though there have been similiar projects, Cookie’s “Faces of AS” project had a very positive impact on my life in 2011.

  29. I always wonder where you find the energy to be such an example, to be here for all of us. Thank You for everything Cookie !

    Lilith Eden said this on November 12, 2011 at 8:44 am

  30. The energy comes from everyone of you! Thank you so much for inspiring me and giving me the courage to do this
    Sincerely Cookie

  31. to put it simply cookie you rock!!

  32. Once I stop crying I will tell you how amazing that story is!

    I hope you know your work will help others not have to suffer through this kind of painful cruel life, give them hope, and shine that light at the end of the tunnel.

    You are one inspirational woman Cookie!

    • When I stop crying I will tell you how wonderful you made me feel. We have been blessed to learn that two people have been diagnosed after showing their doctor some of the stories from this site. So it is working to help people get diagnosed earlier. Thank you so much.
      Sincerely Cookie

  33. You’ve been through alot Cookie, bless you for all your good energy !

  34. Doctors seem to be an AS sufferers worst enemy..where is the empathy??? Where is the research?? Why won’t they LISTEN?? Your story along with mine and So many others seems to carry the same theme..Doctors wouldn’t take us seriously!

    • I agree Shanna, their lack of empathy and compassion is the reason we are still in the dark ages of this disease.. I plan to share this site with as many rheumatologist when I reach 1000 Faces of AS, they may not listen to us individaully but they can’t ignore all of us together.. Thank you so much

  35. your site is a wonderful thing, i am very pleased and honoured to be a part of it.

    all the very best matt joy

  36. Cookie you are one remarkable lady and should be so proud of the Awareness you are raising’ Thank you for all your hard work xxx

  37. Hey Cookie , i tought i’d stop by and chat…. Reading you was as pleasant as having a hot coffee with a friend.( well maybe several )
    Maybe we could do that one day!
    Altough my noticeable symptoms came around 35,reading you made me understand a few things i was experiencing at a young age.I can relate to your feelings .
    Even if i was diagnosed in january 2010,i sometimes still think it’s all in my head, since i was told so often in the past.
    When my lowerback kills me and every joints are soar i know it isn’t !
    Sharing what you went trough and how you were able to find somekind of releif, is a precious gift to those seeking for that understanding and releif.
    Awareness is the number one step in to getting better. And you are my dear… a strong and precious voice .

    Take care.

    Frendly Gilles

    • Gilles,

      Thank you so much for your kind words… all of us together one face, one story, one experience and one voice at a time… Here is to making a difference!

      Thank you so much.

      Sincerely Cookie

  38. Cookie, I remember when you told me that you wanted to do something important and good, something that will reach a lot of people and touch the hearts of many…you reached in your soul and found the Faces of AS idea…You would not own up to it as your own idea, but rather it was everyone’s creation…You always told me how much I helped others with my blog, etc…Of course, you began with your blogging before you even felt a tug at your heart of the Faces…Now, I think it is time, Cookie, for you to realize how wonderful YOU are!…YOU did this!…Yes, you need the Faces for it to all fit together, but it is your strength and undying ability to see up ahead of you, your goal; a goal that you feared you would not reach; a goal that I recall telling you each night before you went to bed, the Faces will come!…The Faces came, are coming, and will keep coming (as I said before and will continue to say) because this is a group that has a real purpose of bringing everyone together out of love and a real want for a cure and to end the awful suffering and pain…I love you Oh, Cookie Dear!…I promise you, I will send you my face ASap!!!! Love, Your Dear Friend for Life, Dana

  39. Cookie, You Give Me Hope!
    You give me hope that tomorrow the sun will shine,

    Especially in bad times when I am not feeling fine!

    You give me hope that I am not alone with this disease,

    You help my heart see that I must do things with ease!

    You give me hope and plant a little seed,

    Your caring nature is what I did really need!

    You give me hope that I can live with this illness,

    I feel my soul needed your help to get this willingness.

    You give me hope as one of my life line,

    So I will never give up, I will still shine!

    You give me hope that is ok to have a bad day,

    I am human and to get the rest you say!

    I will wear my wristband with so much pride and love,

    And know you my friend are an angel from above.

    I thank you Cookie, from the bottom of my heart,

    For supporting AS sufferers and being so smart!

    A Gift I received today.. that brought me to tears and healed a hurt in my soul like nothing ever has.

    By Deb

  40. Dear Cookie and the rest of the AS family,
    Jeff and I found each other 7 years ago. We have been so happily married for 5 years. When we said those vows we promised to love each other forever and to always be there for one another. Nearly a month ago he was diagnosed with AS. He was scared. He started to shut down and not talk about his feelings and fear of this chronic disease. Then he found Cookie and the Faces of AS family. You guys have given me my husband back. We are now both educated of the disease and we are doing our part to raise awareness. Everyday we talk about how warm hearted and loving the AS family is. I do not have AS and I do not know your pain but I see it everyday. I would like to thank you ALL for being so strong and for literally being a family! Thank you again. You have really helped us more than you know.
    -Jess Pagel

  41. Great story Cookie.. And thanks for all the great work you do !

  42. Cookie, thank you for sharing your story! I am at a loss for words. I think this will help a lot of people like me that can relate to what you and many as sufferers have been through! : ) John Gibiser

  43. Cookie yoir story is more horrific than most and at the same time more similar to me my #I would give any thing to talk to you and I also wishto purchase some extra bands of possible hope to hear from you soon

  44. Cookie, you are such a source of inspiration for me. This site you have created has been an amazing place for me to go, so I don’t feel alone, & each story I read on here gives me the courage, to one day post my own AS story. I feel like I know the people who’s stories I read, because so many of these stories have similarities to mine. Reading your story made me cry, knowing how much you have been through, & you are so strong, caring, determined, motivated, & you are doing so much for all of us with AS. I want so much to post my story, but it’s so hard for me to open up about what I have been through with AS, & continue to go through every day. I so admire your strength, commitment, & dedication to helping people with AS. You really are amazing! I will be posting my AS story soon, & I have you to thank, as well as all the other 468 courageous people who’s stories have touched my heart. Thank you all, & thank you Cookie! Stay strong & stand tall! – Lisa 🙂

  45. I just love what you have done. I have to say your story brings tears to my eyes… I thought I had it bad, but I was lucky to get my diagnosis at age 18 and good doctors ever since. But you have brought inspiration to so many of our fellow AS sufferers. God bless you!

    • Dear Mark,
      Thank you so much for your kind words. I wanted to make my life with Ankylosing Spondylitis to mean something, and that the difficult years had not been in vain, that something positive could come out of it, most of all I just wanted people to understand, for those who have Ankylosing spondylitis and for those who didn’t.

      Wonderful to see you again.
      Sincerely Cookie

  46. Happy 53rd Cookie, and many, many, many more !!! May God bless you always.

  47. just took a refresher course and shared your story
    Thank you cookie

  48. My mom has A.S. too. She is actually friends with you on Facebook. I am so grateful she has found a friend in you, someone that can relate, someone who feels this pain. For that, I am grateful.

    • Dear Jamie,
      Thank you so much for your kind words. I thought I knew who you were speaking off and didn’t want to make a mistake, so I waited to respond after speaking to whom I thought was your mother! I was RIGHT! 🙂 I love her to death, she is such a wonderful person and I am grateful for having her in my life.

      Sincerely Cookie

  49. Dear Cookie,
    Thank you for sharing your story. I’m really a bit speechless. You have an incredible story and I admire your bravery. I am grateful to have met you (virtually) and look forward to our friendship growing.

    • Richard, thank you so much for your kind words. I am not sure if it was bravery to be honest as much as it was just pure stubborness. 🙂 I am grateful to call you my friend. Blessings always!

  50. LOVE YOU, Cookie! You are eternally in my thoughts & prayers & will remain an awe inspiring source of hope in my own battle with AS. I know that you’ve been burning that candle at both ends for quite some time, now. You’ve given so much of yourself, I worry that you won’t save a little for later. I was hoping to chat with you this morning & left a message on your voice-mail. There comes a time when you have to drop the mouse & step away from the keyboard just to regroup. Please remember our promise to each other during those dark moments & know that no matter what you are doing or where you are headed, I’m at your side in spirit. Give me a call… anytime, day or night… I’ll be there, always!

    GOD Bless & gentle hugs,
    -John & Vinny

  51. Dearest Cookie,
    I am Marge face # 408.. I just need to say after reading your post this a.m., that I’m so glad u persevered..because you are the reason I got help and questioned my docs about the possibility of AS. (All 7 of them!) The work you do to connect us together..to help us “see” beyond the face and into the story, you have touched my life.. and I for one will be forever grateful. Thank you for your dedication to all the “Faces” .

  52. I am 42yrs old. A Nurse and have been fighting AS symptoms for 3yrs. Every Dr discounts my pain and offers one more pill but none are willing to consider AS as the cause. Reading symptoms of AS is reading the pages out of the history of my life for the last few years. My symptoms and complications seem to be growing weekly and I am at my wits end. I live in the Houston/Galveston area and am in despite search of a provider that is open to LISTENING to me and seeing my plight over the last 3yrs form Chiropractor to orthopedic to spinal specialist to pain specialist to rheumatologist and back again. Is there a provider in the area that is recommend?????

  53. I could identify with you during your teenage years. As a child and a teen in P.E. during testing time I could never reach my toes for measurement. The teacher would press on my back and it would hurt so bad. My older step sister was also a cheerleader and I wanted to be like her so badly! I couldn’t do any of it. I was clumsy and off balance. Couldn’t even do a cart wheel. In fact, I ended up breaking an elbow trying. 😦 I’m so glad you finally found something that helps the pain and a dr that would listen to you. You’re an inspiration.

  54. I have tears streaming down my face! I am not alone! There are so many similarities to my life with AS and the misdiagnoses of most of my life, including mental illness. Manic depressive bipolar was what one labeled me as having. I was thankful in an odd way for the diagnosis of AS because I am no longer told by doctors that it’s all in my head. My “little” sister now has the diagnosis of AS as well, and that breaks my heart. Thank you, Cookie, for sharing your story and for your project.

  55. You are a remarkable, caring, loving and gifted individual. Through pain and suffering, you have touched so many lives. I wish you joy, love, peace, happiness and pain-free days if possible~ You have given so many hope and you have certainly lifted me up~ God Bless you Cookie~

  56. you are so strong cookie ! I can relate to so much of your story..thank you for your strength and love

  57. Thank you Cookie. My sister has AS. I have the hls-b27 gene and am waiting to see a rhumatologiest for a proper diagnosis, at age 29. I am in cronic pain all the time and some days its seems unbearable. BUT dispite it all i still try and hobble out of bed and get moving. It hurts, im told its from my jom but thankfully i have the best massage/reflexologiest who stands by my side to help me keep my mobility. I praise her every time i see her, she means the world to me. Together we are trying to win the battle on my pain. Some months we win, some months we lose. Thank you so much for your story of bravey and truth. You are an amazing woman and thank you for not letting AS stop you. 🙂 lots of love

  58. […] Speaking of advocacy, I made sure Zach was aware of just a few opportunities to raise awareness, including World AS Day on the first Saturday of May each year, Spondylitis Awareness Month every April, and Cookie’s Faces of Ankylosing Spondylitis. […]

  59. Hi, thank you for writing your story. It is so encouraging! I have just been diagnosed with AS last month. I’m so happy to have a diagnosis to explain my pain and other symptoms.

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