Hi, my name is Lisa, & I have AS. Before I tell you all my story, I’d like to thank the 534 amazing, beautiful people who bravely told their own AS story, that gave me the courage & strength to tell my own AS story, & a special thank you to Cookie, who inspires me every single day, & who made this all possible. Each one of your stories has touched my heart, & I am grateful for you all.
I was diagnosed in August 2001, but I know that I had it for many years before then. I think in order for you to understand how I came to be diagnosed, I’ll have to take you back to November 15, 1992. That was one of those few days you have in your life, that completely alters your future, & you know things will never be the same, & they wouldn’t be the same, & I would never be the same, ever again.
My life was still quite chaotic, at the time. It had already been a terrible year for me. My fiance, had drowned on a camping trip, with his buddies from college, a friend had committed suicide, & my grandfather has died after a long battle with lung cancer, & I was very depressed, & was having bad anxiety attacks. I had been living with pain in my hands, jaw, back, neck, & hips, but always had tried to ignore it.
After the drowning accident, I went to see a psychiatrist, & mentioned the pain I had, & he told me it was from depression & anxiety, which made no sense, because the pain had started as a teenager. Anyway, that November day started out normal, I was with a couple of friends from college, & we had gone to stay at one of their houses in New Jersey for the weekend. Although my sister & I had never gotten along, my mom had called me, & asked since I was going to be in New Jersey for the weekend, could my friends & I spend that Sunday afternoon at my sister & her husband’s house.
My parents would also be there, & it was sort of on our route back to college, & my sister had made my favorite chocolate cheesecake. I really didn’t want to go, but I reluctantly said, okay. How bad could it be. On the ride, at least an hour or more away, I had this idea that we could stop at this great music store, I’d been to once. My friend happened to know where the store was, I guess it was fate.
The 3 of us went into the store, & started looking around. We were all in different areas of the store. I was in the way back of the store looking for a bootleg video of one of my favorite bands back then. I don’t know where my friends were, but they were in the store somewhere. I was looking up at the concert videos, piled high up, in alphabetical order. I was trying to get to B, but started somewhere in the middle of the alphabet, & worked my way down, L, K, J, I, etc… then within a second, I disappeared.
All I remember was, I took a small step to my left, & there was no floor. I fell a long way, tumbling down over 20 metal steps, & landing in a concrete cellar on my head & back (so I was told). My friends didn’t see or hear me, apparently, I didn’t scream, & my friends couldn’t find me. I was unconscious, & in pretty bad shape. My friends eventually looked down into a trap door, that had been mistakenly left opened, & after walking down the metal steps, they found me. They said I looked dead, & my body was in a contorted position, as I had land on my head & back, so I was soft of upside down (they told me).
I was told the whole story many weeks later, after I was out of the hospital. I don’t remember being in the cellar, or being taken out of the cellar by paramedics, as I was unconscious, & I still was inside the ambulance, but even though I was unconscious in the ambulance, & non responsive, I heard the EMS workers voices, one said, “I was going into shock, & I had no pulse.” Was I dead? I don’t know. I heard a different voice saying, “C’mon, Lisa, stay with us” over & over.
I don’t know how I heard this, but I did, & it still is weird to think about it. I remained unconscious for a long time, & was later told I almost didn’t make it to the hospital. My friends had called my family, & everyone was at the hospital. I don’t know what happened when I got to the hospital, or how long my family & friends waited, but maybe it’s better that I don’t know. I had been strapped to a backboard & neck plate contraption.
I couldn’t move, or feel my back or my legs. I was soft of waking up, I was really out of it & confused & my whole head felt broken, my whole body felt broken. I couldn’t really focus my eyes, everything was so blurry, & people were moving so fast all around me. I was moved off of the backboard thing, into a bed, I think, I still had the neck contraption on, I can remember someone taking my hand & holding it, I looked to see, it was my mom with tears in her eyes. I tried to say Mommy, but I don’t know what or if I said anything. My mom was now crying, she said I fell into a trap door, that had been left opened, & I was at the hospital. She asked me to wiggle my toes, I did, & I could see the relief on her face. They her away, as she told me she loved me, & I was still so confused.
The doctors were doing all sorts of things, & wires were all over me. The doctors were asking me questions that I couldn’t answer. I was so scared. I felt as if every bone in my body was broken. I stayed at the hospital for what seemed like forever, I had a feeling of dread, that something was seriously wrong with me, but what I didn’t know at the time was that this accident was going to change my life, in ways I could have never imagined.
I had many injuries from the fall, but I was very lucky to be alive. Many of the injuries healed, & many did not. My jaw, neck, back, & hips were injured badly. It took a long time to be able to walk, & chewing food became such a chore, that I barely ate anything, & opted to drink my meals, which I still do. My neck, back & hips had always been messed up, but the fall made the pain that I already had so much worse, & my jaw was hurting more & more, I couldn’t chew, it hurt to talk, it was impossible to get any good sleep, which I still can’t seem to do.
I went back to college for a bit, but I had already missed the rest of the fall semester, & the spring semester, too. I started seeing dentists who referred me to oral surgeons, about my jaw, & a chiropractor for my back, neck, shoulders, & hips. They took x-rays, & told me I had 3 herniated discs in my back, & the bones in my neck were abnormal, & my neck bones were also backwards, & my spine was crooked, & my hip bones were abnormal, too. They sent me to an orthopedist, who wanted to to send me to an orthopedic surgeon, & I was too scared to go.
I went to so many different doctors for the rest of 1993, & much of 1994. I also went to physical therapy 3-5 times a week. I was 22 by then, & I had enough of all of these doctors giving me bad news, with no solution. I couldn’t stand it anymore. I gave up on the doctors, & tried to accept the chronic pain as a part of my life. These doctors had put me on every kind of pain killer, tranquilizer, antidepressant, sedative, I hated it all, & I wasn’t going to do it anymore. I thought I’d rater be dead than be like this, on all of this medicine that does nothing, but make you more depressed. I just wanted a normal life. I stopped taking all of the medications, I was back at school, & I was self-medicating with marijuana, which was much safer than the medications I had been prescribed. I was still seeing one oral surgeon who did my 1st of 6 jaw surgeries in May, 1994. I still had all of mu pain issues, & the jaw surgery only seemed to make my jaw worse. I had all of these different bite plate, mouth guards, jaw-exercisers, it just got worse, & so did my back, neck, shoulders, hips, & hands. I was making a lot of jewelry, & I assumed my hands hurt from overuse. My wrists also hurt, & my elbows, but I still thought t was from the fall, & I was always making jewelry or something crafty. My jaw was really unbearable, you don’t realize all of the things you use it for, & I don’t mean dirty things, but that, too. I mean talking, eating, yawning, coughing, sneezing, sleeping, etc… I managed the best that I could without any medication.
I lived with the chronic pain, & in 1995-1997, I went back to school, & got my degree in jewelry design & also became a graduate gemologist. I had 4 more jaw surgeries by 2000, each surgery just made my worse. My hands were hurting more & more, so was my hips, back, neck, wrists, & shoulders. I had worked so hard to get my degrees, & I even graduated 1st in my class. 🙂 My hands were hurting all the time, & my jaw was literally falling apart. I couldn’t stand the amount of pain I was in.
When I had my 4th jaw surgery in October 1999, I was assistant manager & head gemologist of a large jewelry store, & we were moving to a larger location, where I would be moved up to manager. I had been put back on prescription pain killers, right before the surgery, & the timing of the surgery could not have been any worse, with the move of the store, & the Holidays being our busiest time, I had a very small window to recover. I had got a blood clot in my leg, & was back in the hospital for another surgery.
The jaw surgery couldn’t have gone any worse, I thought my jaw was at it’s max on the pain scale, but I was wrong, why was this happening? I had physical therapy 5 days a week, constant doctors appointments, for trigger point injections for my jaw. I had terrible muscle spasms, nerve damage in my face, & I had been on the liquid diet for years, & my jaw was still deteriorating. I was let go from my job, & I was so depressed.
I had my 5th jaw surgery in 2000, at Montefiore Hospital, in the Bronx, NY, another big mistake, & a disaster. Now the nerve damage was much worse, & I also had massive tissue damage from all of the surgeries. I was referred to a top dentist on Madison Ave. named Dr. Gelb. He was going to look at my jaw, & make me a new bite plate. He was another jaw specialist.
I had very little, if any hope left for my jaw. It was now half way through 2001, & Dr. Gelb took a bunch of new x-rays, sent me for an MRI, & took molds for a new bite plate. I would have to go back to see him in a couple of weeks to pick up my new bite plate. A few days before my appointment, Dr. Gelb called me personally, & asked me if I could bring my parents with me to my next appointment.
I thought something must be really wrong, why would he want me to bring my parents with me? He sounded so serious on the phone, but when I asked him why, he said we would talk when I came in. I was very scared. What could it be? Well, it’s got to be about my jaw, maybe I need another surgery? What else could it be? I asked both of my parents, & my boyfriend, John to come with me to the appointment, & they all said they would.
Dr. Gelb said he had 2 very important things to talk to us about. TWO things??? Oh god, how could it be 2 things. First thing, was my jaw was literally crumbling, totally falling apart, & there was hardly any bone holding it together. I would need a total joint replacement as soon as possible. He knew of a surgeon at Staten Island University Hospital that was doing a clinical trial, with a new titanium & plastic implant that this surgeon had created with a scientist, & he had already done about 50 of the implants, & I might be a candidate. The implant was not FDA approved, but I didn’t have many options.
The problem with jaw implants is that the jaw is the most complex joint in the body, because it moves both up & down & side to side. The implants that were on the market in mid-late 2001, were very few, & most, if not all had major problems. Not much was known about this one, but what do you do in that situation? I would at least go to see the surgeon, & hear more about it.
Okay, that was kind what I had expected, but what was the 2nd thing he wanted to discuss? The second thing he said was he wanted a complete family history. He said I needed to see a rheumatologist right away. He said the way my jaw joint deteriorated wasn’t normal. He asked me a lot of questions about the other joints in my body. He said the way I walked, moved, stood, the way my back & neck looked were all abnormal.
He examined my arms, at the elbow joint, my wrists, my hands, my fingers, all abnormal. Nothing about you is normal. WHAT? Me, abnormal, no I’m not abnormal, a little different, but not abnormal. I was shocked & confused. I told the doctor that my hands had hurt for years, but I’m not abnormal. Just hearing that word, ABNORMAL, about yourself so many times, over & over, me, no I’m normal.
I looked back at my mother, & I never saw her look that way before. She was as pale as a ghost. She wouldn’t make eye contact with me. Why? What, did she know about this? I knew I was very thin, from the years of liquid diets, that must be why he thinks I look abnormal. My father asked the doctor how many of his patients does he refer to a rheumatologist? The doctor said, in 20 something years, just Lisa.
He said he never refers patients to see a rheumatologist, but he was sure that I had some form of degenerative arthritis. He asked my parents for a family history. My maternal grandmother had died from Crohn’s Disease, my aunts, uncles, on both sides of my family all had terrible arthritis, RA, PA. My great grandparents on both sides of the family, arthritis. My father has gout. It just went on & on.
It was rampant on both sides of my family. This couldn’t be true, not me. He referred me to NYU Langone Hospital for Joint Diseases, Center for Arthritis & Autoimmunity. He called the doctor as we all sat there in shock. I cried, I couldn’t stop, this can’t be happening. The rheumatologist was the director of rheumatology, & specialized in AS, PA, & RA. I had no clue about what any of that meant. I assumed there were only a few kinds of arthritis.
This doctor was a dentist, he had to be wrong, but my family history, my head was spinning, & poor John, what would he think? He would leave me, for sure. Who could blame him, he didn’t deserve a defective, abnormal girlfriend. We all left Dr. Gelb’s office in a fog, no one said a word the whole way back to drop me & John off at my place.
Could this really be possible? It would answer so many weird things, but I just couldn’t accept this. I hadn’t even seen the rheumatologist yet. About a week later, I had my appointment, since Dr. Gelb called for me, I didn’t have to wait the normal 3-4 months for an appointment with this big shot rheumatologist. Again, my parents, John, & I all went to The Hospital for Joint Diseases, near Gramercy Park, to see if I was “abnormal.”
I had already gone for the MRI, blood tests, & x-rays. We met with the rheumatologist, it was August, 2001 & I was scared to death, but inside I already knew what he would say. It just all fit together, like a puzzle I’d been trying to solve for so many years. The doctor did a full examination of every one of my joints, checked my range of motion, asked me a ton of questions, then he called in my parents & John.
The doctor had the MRI, blood test results, & x-rays all there. He spoke for a while about some of the different forms of arthritis, he put a couple of my x-rays up on a glass light on the
wall, I had no idea of what he was saying, it was like blah, blah, blah, blah, blah… Or how the parents talk in the Peanuts cartoons. Then, he said I have a diagnosis, & I sure heard that loud & clear. Lisa, you have both Ankylosing Spondylitis & Psoriatic Arthritis, & I think you may also have fibromyalgia.
Was I dying? How can this be? The worst I thought would be 1 kind of arthritis, but 2, & this other thing, too. I’m supposed to have my 6th jaw surgery in less than 6 months. Now this, it was too much. I just cried silently, just continuous tears, no sound at all. I couldn’t speak, what would I say. I guess I am abnormal. My father asked questions about treatments, my mother was silent, pale, but this time she looked at me, she said, we’ll go for a 2nd opinion, so we did, & a 3rd, then 4th opinion, all the same, except doctors, 2 & 3 didn’t think I had fibromyalgia. They all agreed on the AS & PA diagnosis, so I went back to the 1st rheumatologist, & he said, I knew you’d be back.
I didn’t want to accept this, I had a great career ahead of me. I worked so hard, & I was such a good gemologist & jewelry designer, & now, I couldn’t even hold the tweezers without dropping the gemstones. I couldn’t design, because I couldn’t hold the pencil still enough, or the tiny water color brushes to paint the designs to scale. I was devastated! Why was this happening to me now?
Over the next few months, I was put on a few different kinds of arthritis medications, it only seemed to get worse. My rheumatologist said that I was having a flare up due to all the stress & anxiety from my upcoming surgery, & my multiple diagnoses. I really wanted to die. The medications weren’t working, I was getting worse, my surgery was getting closer. My rheumatologist thought I had to postpone my total joint replacement jaw surgery, & my jaw surgeon said, if I lost even a couple more millimeters of bone, I couldn’t have the jaw surgery, because there had to be at least a tiny portion of bone left, to attach the implant to. I didn’t know what to do.
It was definitely done out of fear, but I opted to have the jaw surgery as scheduled for February 2002. My rheumatologist was furious, he said I would regret it, but I didn’t know at the time that he was right, & that the total joint replacement surgery, was the biggest mistake of my life. About a month before I had the surgery, my rheumatologist had put me on Methotrexate injections, once a week at home, & gave me a referral to see a pain management doctor, another huge mistake.
I never even knew they had doctors that specialized in pain management. More doctors, more medicines, & the surgery was a few weeks away. If I could only go back in time, & change my mind, but I had the surgery, & I was in the hospital for almost a month. I begged the jaw surgeon to fix my implant, something was wrong with it. He refused, & told me that I wasn’t going to ruin his clinical trial, & his chance of getting his jaw implant FDA approved. He kept me on such high levels of morphine, that I thought for sure, I would die at the hospital.
Every time I told him, he made my pain worse with his implant, he dismissed me as being crazy & a complainer. He kicked me out of his clinical trial, & 10 1/2 years later, he still doesn’t have FDA approval, but he is still putting these terribly dangerous implants into patients, preying on their desperation & pain level, not telling them that his implant will break, as mine did, & the bolts that attach it to my skull have loosened, & caused the implant to move, & collapse. He never told me hat most of the implants he has put into patients, have been taken out within 2-3 years, at best, & every day I have to worry that my jaw will collapse. It caused nerve damage to my face, head, neck, & behind my ear. I live with this implant every day, terrified what will happen when it does collapse.
My rheumatologist still tells me every time I see him, that having nothing in there is better than what you do have, & every day it’s doing more & more damage. My jaw specialist agrees. So, my arthritis. I’ve been through all the combinations of Methotrexate with Enbrel, Methotrexate with Humira, & many more combinations, too. Almost 11 years since my diagnosis, I still see the same rheumatologist, & now I’m on Methotrexate twice a week, with Remicade, every 6 weeks. He fought my insurance company since last January to get me switched from every 8 weeks to every 6 weeks, which I was just approved for, & will start my every 6 weeks of Remicade on August 23, 2012.
My last appointment with my rheumatologist was on May 21, 2012, & it was a terrible appointment. I was having a bad flare up, & he was very unhappy with how I was doing. I will see him again at the end of August, & I can only hope that I have a better appointment. It’s been very long roller-coaster ride, that I can’t get off. I have good days on occasion, which I cherish, I have bad days often, which is hard to deal with, I have very bad days, which I dread so much, but I never have very good days, but it doesn’t mean that I’ve lost hope.
Sometimes, hope is all you have, & I hold onto it very tightly. I miss my career, but I haven’t given up hope that some day, I’ll be on that right medication, the one I dream of, on the nights that I can sleep well enough to dream. Hopes & dreams are what keep me going, giving up is not an option. 🙂
Thank you all!
Love & Hope – Lisa
New Jersey United States of America
This beautiful apple was created especially for Lisa Thierman by Jenna Dye Visscher
Lisa was nominated by….Dave Wukusick: Dave said, “I feel a friend of mine, whom I met by chance on FB, Lisa Thierman should get One of your special Apples. She does have AS and maybe seeing it everyday would bring a bigger ray of SUNSHINE into her life. I think about all the post and information she is sharing with others but seldom complaining about her own problems. Please select her for one of these. thanks!!! 🙂