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 rheumatologist, 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 itself, 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 t
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 rheumatologist.
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.
A Note from the creator of Faces of AS, Cookie Hopper
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
Creator of Faces of AS, SAA Member, and Face 0062
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