Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project.
We’d love your story as well! Send it to us at firstname.lastname@example.org
Thursday, August 03, 2017
My name is Char and I’m a mom of two of the most amazing daughters on the planet, a wife to my best friend and soul mate, a dancer, a personal trainer, a group fitness instructor and a motivator. I’m also the owner of a fitness company and a dance-fitness studio, where I teach several weekly dance & fitness classes. What many may not know about me is that I have an autoimmune disease known as Ankylosing Spondylitis. I was born with the gene HLA-B27 and like many who suffer from AS, I came in contact with the right environmental pathogen to ignite the full blown disease. Medically AS falls into the rheumatic disease category of seronegative spondyloarthropathies, many also refer to it as a reactive arthritis. Either way people with AS suffer as a result of having their immune system’s attack their spine and sacroiliac joints, the result is chronic pain and inflammation which also effects the joints, tendons and ligaments. AS sufferers can also have “flare-ups” in other areas of the body such as the chest wall, and any area where ligaments and tendons attach to the bone. AS effects everyone differently and I am living proof that this disease can effect anyone at any age.
When I was a young child and a teen I was an athlete who played all kinds of sports, I ran track, I played basketball, softball, baseball, volleyball, even football, I was a competitive gymnasts and I also danced. I was very hyper and never sat still in spite of being anemic and asthmatic, so staying physically active was quite necessary for me and it also kept my parents sane. I experienced my first bout with spontaneous swelling at 8. Needless to say, that when I would experience what I can only now identify as flare-ups, life was challenging. It meant not running a track meet, or competing in a gymnastics meet, nor dancing or playing a sport and it also nixed any chances of going to the Olympics for gymnastics which was my goal, as it something that I aspired to through many hours of training. It was also incredibly frustrating to have no name for the condition that plagued me, nor a way to treat it. This in spite of being tested for every imaginable disease matching my symptoms, except of course for AS. During these times my knees and or ankles would spontaneously swell and I would be out of commission for several days, if not weeks. I would also endure tremendous discomfort during growth spurts, when every single joint in my body was afflicted with excruciating pain, this on occasion lead to late night visits to the ER. Because of having a nameless condition and only symptoms, I had no course of treatment and aside from an OTC pain medication, I would simply have to wait out the flare-ups. However, because I was young and very active I would quickly bounce back.
Several years would pass before the dreadful flare-ups would appear again as a young adult. Being older and more aware of my body, I begin to notice that my “flare-ups” were lasting up to 6 or more weeks. Becoming more and more frustrated with my symptoms and with my General Practitioner’s lack of answers, I began seeing an Orthopedic Surgeon who diagnosed my condition as being sickle cell trait related, he also prescribed an anti-inflammatory medication to help me. I finally had some relief, but still no answers. This was also during the time that I began to realize that my immune system was compromised.Doctors were at a loss because they were only treating my symptoms, sick and tired of being sick tired and so fed up with taking medications, that I began to take control of my health. I began researching holistic medicine and natural alternatives for my chronic bladder and kidney infections, chronic strep throat, tonsillitis, food intolerance, insomnia and depression. Further educating myself about herbs, processed foods, diary, healthy eating and the benefits of exercise. Outside of my corporate life I became a personal trainer and began competing in figure competition. I also modeled for a living and I helped others with achieving their fitness goals. I began to feel empowered and I stopped looking for confirmation and validation from doctors. I knew that I had a chronic health condition and I figured if I could simply stay fit, eat right and maintain a healthy immune system that I would be fine. I was also pretty confident that I would one day find answers. I just had no idea that it would take 20 years.
Attending College was also a challenge and anytime I was faced with stressful situations I noticed that I would experience symptoms. By this time I’d given up on team sports, since my body was unreliable. I felt that returning to dance would be a better option, so I danced for several dance troupes, but had to resort to simply being a choreographer for the same reasons. In spite of still having the occasional flare-up in my knees and ankles, my AS symptoms were only occasional at this point in my life. I attribute this to a strict daily workout regimen and healthy eating.
Looking back now I can confidently attribute my first pregnancy and a potential miscarriage to having AS. Especially with research supporting the fact that women with AS are at higher risk for miscarriage and c-sections. I was so incredibly excited about my pregnancy and so looking forward to meeting my first child, until waking up one morning and discovering every pregnant woman’s worst nightmare….bleeding. I was rushed to the hospital where doctors confirmed that I was in the process of miscarrying, only to send me home for prescribed bed rest and to basically wait out the completion of my miscarriage, since there was essentially nothing that they could do with me being only weeks into my pregnancy. Devastated and feeling quite helpless. I called home, turning to my best friend’s mother who was a health care practitioner who used herbs and homeopathic remedies. She gave me a list of specific herbs to take, in which I ran out and purchased immediately. The natural remedies stopped my bleeding, my morning sickness, strengthened my uterus to the point that in spite of being prepared to have a c-section, I delivered via natural child birth.
After having my daughter, I felt happy and healthy and my symptoms were few and far between. It wasn’t until after having my second daughter that my world was completely turned upside down. During my second pregnancy and my third trimester my hips would give out, making it impossible for me to walk up or down stairs. My husband and I would attribute these moments to the relaxin hormone being released, which cause women’s hips to expand for delivery and so did my Obstetrician. Labor was tricky 22 hours to be exact and during a time where a women’s body will naturally kick in and do exactly what its designed to do, my body worked against me with incredible pain and very little dilation. However in spite of the doctors continual reference to a potential c-section, with the help of (as crazy as it sounds) flower remedies and essential oils, I had another successful natural delivery.
Now at a point my life where I was busy with two children, my diet and exercise routine suffered and I began to feel less like myself, my right hip bothered me and I had difficulty walking, but felt this was related to the hip issues that I’d experienced during pregnancy. I was also chronically fatigued and once again coping with symptoms relating to a compromised immune system. I battled kidney stones, allergies, chronic coughs and my anemia and asthma were once again an issue. I’d resorted to treating my symptoms via natural remedies and a prescribed inhaler. Until waking up one day to discover that my knees were the size of my thighs and my ankles were the size of my knees. I was debilitated, but at this point I was so frustrated with misdiagnoses that I just resorted to what I’d always done, I took Tylenol or Advil and I waited it out….6 months. Finally one day being completely incapable of walking without a cane or a pair of crutches, I dragged myself to yet another General Practitioner where I was diagnosed and treated for Lyme disease. I was sent home with a 30 day supply ofantibiotics and prescribed bed rest, accompanied by the threat of hospitalization if my symptoms hadn’t improved within one week. I followed doctors orders, only to find myself still inflamed, with an immune system that had completely turned on me. Any ailment that I’d ever experienced had shown up with a vengeance, allergies, severe asthma, anemia, an upper respiratory infection, kidney and bladder issues, fatigue, fever and and new symptoms, including skin outbreaks and hair loss. I was on medication for everything under the sun and at the same time, this is when I yelled at my primary care physician, who was insistent that I had Lyme disease, in spite of my many negative Lyme disease test results, and I demandedthat she send me to a specialist and she did.
This is when the miracle who was Dr. Alan Brenner came into my life. Doctor Brenner was a Rheumatologist who diagnosed me within 5 minutes of sitting in his office, but at my insistence he continued to listen to me ramble on for an hour about my life and my battle withinflammation and a compromised immune system. He confirmed his diagnosis with an X-ray of my sacroiliac joints and a blood test confirming the presence of the gene HLA-B27. Doctor Brenner has sense passed on, but he was an amazing man, who over the 4 years and several hour visits became my friend. He supported my interest in natural & alternative treatments and we could talk about acupuncture and homeopathic remedies just as easily as we could talk about medical treatments. He is dearly missed by not just me, but by many.
After 20 years I finally had answers, I finally had a name for what plagued me all of my life and I finally had a course of treatment that my body would respond to. After months of antibiotics, steroids and an anti-inflammatory, I could finally walk again without a cane. In spite of being a naturally thin person, who was always fit and healthy I was also battling what I now know to be a thyroid deficiency. I was 30 pounds overweight, still toting around my pregnancy gain and I could not yet exercise because the inflammation was strong and stubborn in both knees along with the presence of edema, which only responded to cortisone shots. Now, once again in a very good place taking nothing but a low dosage of an anti-inflammatory, 100% raw vegan, exercising 6-days a week and 30 pounds lighter, I thought all was great once again and it was. Until a distracted driver ran into my car traveling at 50 MPH, completely totaling my vehicle leaving me with a concussion and a year and a half of physically therapy. This is also when I learned that AS was progressive. The many years that I’d gone undiagnosed meant the disease had time to do just that…progress. The car accident also left me with an arm that I could barely move, severe neck and back pain, sacroiliitis and it further upgraded me to a case of severe Ankylosing Spondylitis. I was miserable and after acupuncture, chiropractic treatment and exercise ceased to no longer work, I had no choice but to return to my Rheumatologist for help. Dr. Brenner prescribed and injectable called Enbrel. I had the prescription filled, but after careful consideration I decided against taking the drug after reading the horrible potential side effects.
It was also at this point that I discovered, that when you have one autoimmune disease your at greater risk for developing other autoimmune conditions. After recovering from a stomach infection, which many AS sufferers are prone to, I discovered that I also had IBS, a thyroid deficiency and food allergies. I began educating myself on IBS and its link to AS, I revamped my diet and began eating to control the IBS, which in turn would help me with controlling the AS symptoms. After 6 years of a vegan eating, I abandoned my raw vegan diet and began eating lean protein, still lots of fruits and veggies but limited starch intake. I am once again in control of my health. I’m now completely medication free and my outlook on life and my attitude toward living with AS has changed. Accepting that I’m not super human and as driven as I am, I will not beat AS itself. In addition, I will not only live with this disease for the rest of my life, but there are numerous symptoms of AS that I’ll have to contend with. I’m still learning about this disease and how it effects my body and how that effects my day to day life.
What do I choose to do with this knowledge? It’s pretty ironic, but I’m in the business of keeping people fit, healthy and feeling motivated when on most days I feel quite the opposite. As a result of my business, I’m forced out of my house and to my studio multiple times a day to kick people’s butts into shape and in the process I stay active, even on my worst days when not only the mornings are challenging, due to pain, stiffness and inflammation but an entire rainy day might prove to be a huge obstacle that I just might have to overcome as well. I choose not to feel sorry for myself, Instead I choose a healthy lifestyle and I’m determined to maintain a positive mental attitude. I know that I can not go at this pace forever, but the moment I put down that cane I knew that I would be eternally grateful, appreciative for my small victories and most importantly after regaining my mobility, I would stay active, positive and motivated in spite of my daily challenges. I also made a promise to myself that I would encourage others to do the same. I hope that by sharing my story I can inspire others to take control of their health, stand up and fight their own chronic health conditions or to simply stay active and physically fit. After all, if I can workout daily living with severe symptoms of a physically debilitating condition than those living without physical limitations can too!
Shrewsbury Massachusetts United States of America
“Chronically Happy, Healthy, Fit & Fab”
8/10/2017 1:29 PM
Char, Thank you for sharing!
16360 Roscoe Blvd. Ste. 100Van Nuys, CA 91406
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or (818) 892-1616