A.S. Face 2198: Gwendolyn Bahun

A.S. Face 2198: Gwendolyn Bahun







My name is Gwendolyn Bahun, I live in Loveland Colorado. I have AS (and a number of other chronic disorders). I was diagnosed in 2013, after my dad was diagnosed too. I’ve always struggled with back pain and endometriosis pain. It’s been tough, but I try to remain positive.

A.S. Face 2193: Jenny Neese

A.S. Face 2193: Jenny Neese







Hi y’all my name is Jenny Neese! I have AS, Fibro, Saccorilytis and Endometriosis. After suffering for 20+ years. I finally got diagnosed and started treatment 4 years ago.
Thanks for doing this Cookie! I wish I didn’t have to be a warrior, but since I am, I’m grateful to be a part of this group of amazing, awesome, warriors! Thanks for welcoming me with open arms gentle hugs, and keeping me going on the days I feel I really just can’t! Not sure what I would do without y’all!
XO
Jenny

A.S. Face 2015: Carrie Wilcox

A.S. Face 2015: Carrie Wilcox



My name is Carrie Wilcox. This is 2018 and I am 40 years old. I was diagnosed with ankylosing spondylitis in 2015.

‘Don’t baby your hips. Wait until you get to be my age. Everybody has back pain’, sound familiar?  This pain started intermittently for me at 17 years old.

Like many others with ankylosing spondylitis years passed before I sought answers.  Because of dismissive comments such as ‘everybody’s back hurts’ and back pain runs in the family.  Why was I intolerant when it came to this pain and stiffness? Why was everyone else so much stronger towards pain than I was? How are they functioning so normally? Why am I such a baby?  These were questions I would ask myself.  So I would hide my pain and push through.

During a particularly rough time in my early 30’s I sought answers from my primary care physician for the, now, all over body pain.  At one visit, without imaging or blood tests, I was diagnosed with sciatica. Ice and rest.

When ice and rest failed I visited several specialists, reluctantly referred to by my primary care physician. There was a brain MRI, offered anti-depressants, was told nothing is wrong, you can’t be in that much pain, it would hurt anyone to be pressed like this. During that time I received a clinical diagnosis of endometriosis and was prescribed birth control. The doctor blamed endometriosis causing the pain in my legs, ‘I don’t know about your arms’, she says.  Wanting relief I pursued an exploratory laparoscopy. I had a few small patches of endometriosis removed and diagnosed with adenomyosis.  After the laparoscopy I went back to my primary care and she callously stated,  ‘that small amount of endometriosis wouldn’t cause that much pain. This is something you need to learn to live with.’  Then she added infertile to my chart. Later, miscarriages would prove that to be true.

Worse than living with a chronic illness is living with an undiagnosed chronic illness. Physicians and specialists that don’t find anything, vocally doubt you. That doubt is contagious and spreads to your loved ones.

Through the years I tried many at-home remedies; milk thistle, turmeric, Himalayan salt, hot Epsom salt baths, heat, ice, stretches, chiropractor, cinnamon & honey, aerobics, yoga, oils.  None of those remedies helped me sleep past the 4 hour mark at night. By my mid-30’s the back and hip pain was relentless, every single day and night. The pain and stiffness kept me up at night; most nights sobbing quietly in another room. Hiding a painful limp and pushing through life every single day.  I hid how much it hurt. I had to hide it because ‘nothing was wrong’. I feared being called a hypochondriac, again.

I was 38 years old when my leg began to swell.  So much swelling I couldn’t bend my leg.  Along with the stiffness in my back and hips, I also couldn’t turn my head.  Over the course of a few weeks the pain and stiffness consumed my entire body.  I could only manage a hunched over shuffle clinging to a crutch.  My regular doctor ordered blood tests and advised I try gluten and sugar free. I also received a rheumatologist referral.  As I waited the 6 weeks for the rheumatologist appointment a friend suggested it was gout. Searching for any type of relief I headed to urgent care. The attending doctor felt the heat coming from the swollen joints and ordered a parvo virus blood test.  A few days later the results were ‘positive for the parvo virus.’ She says that I needed to let it ‘run it’s course’ and I ‘no longer needed to see the rheumatologist’.  I was excited to have an answer, but I chose to ignore her advice keep the rheumatologist appointment.  I was scheduled to see the same rheumatologist that almost 10 years before told me during a pressure point examination that, ‘It would hurt anybody to be pressed like this.’ I had outward symptoms this time, swollen joints. He couldn’t dismiss me again.

The parvo blood test was read backwards, said the rheumatologist. I showed antibodies for the parvo virus, but not an active illness.  After an examination, blood tests, x-ray’s and an MRI I was quick to receive a diagnosis. The CRP blood test, which measures inflammation, was 10 x’s over the normal lab range at 104. The ESR, another inflammatory test, was 3 x’s over the range, at 48. HLA-B27 positive, which I don’t put much stock into as it is only a test for the gene. The x-ray and MRI revealed the hallmarks of AS with bilateral sacroiliitis, among other inflammatory results and permanent damage. What is so easy for me to see now and isn’t generally found in a quick google search is not only does AS cause back and hip pain, but inflammation of tendons, ligaments and large joints. That explains the un-diagnosable all over body pain I was experiencing all these years. I often wonder, how can so many doctors get everything so wrong? And be so confident?

Despite living with AS for this long I am still learning. I am also learning to slow down when I need to and pushing back the gnawing guilt for doing so. I am learning what medication regime works best so I can function, because living with untreated AS caused irreversible damage (bone spurs, erosion, sclerosis, scoliosis, bulging discs)  and a constant state of inflammation.  I am lucky. I am lucky that I am not fused in a hunched position. I keep active and keep my spine straight, so when I finish fusing at least it will be straight. I have a diagnosis, but that doesn’t put an end to people doubting the type of pain that comes with AS, comparison to injuries that heal, and dismissiveness. What a diagnosis does put an end to is holding my head up in the face of this cruel world.

To not have your suffering recognized is an almost unbearable form of violence. – Andrei  Lankov

Colorado, United States of America

A.S. Face 1890: Mary

A.S. Face 1890: Mary


Diagnosed at 53 after hip surgery.  SI was fused and new bone growing on outside of hip.  Just thought I was getting old!!  Have bone spurs and recent surgery to remove one that tore rotator cup.  AS does many things that people are not even aware of.

A.S. Face 1655: Amy

A.S. Face 1655: Amy

Hello my name is Amy. I’m almost 42 and almost a year into my diagnosis. Professionally I was very active and spend most of my time on my feet. That was until 2014 when I started working from home my daily step count went from a few thousand to a few hundred. I knew that something was wrong when getting up was almost impossible. I only slept a few hours at a time, and my body felt like someone was dumping cement into my joints….. I discussed this with my primary care Dr who just told me it was stress.
In November 2015 I decided I needed more. So I found a new primary care physician. I went in on day one and said “I’m 40 there is no reason I shouldn’t be able to move, or cross my legs anymore”. We went through my family history and I expressed that my Mom, Dad, and Brother all see the same rheumatologist for various issues but my brother has been going since his early teens…. The wonderful Dr agreed that this was not normal, and that I didn’t have to live life this way and ordered a series of blood test. One of which was HLA B27 which I was positive for.
Thankfully, the rest of my family had the same doctor, so getting in was easy, and they already had 20 years of “family history”. After some X-Rays and MRI I am suffering from some fusion in my right SI joint, but so far not the left. Come to find out my brother and I are both dealing with the same issue (mom most likely as well)…. They have been treated for so long that they have never been tested for HLA B27 before.
I refuse to let AS get the best of me. For fun, I drag race my car. In 2015 I was the 2015 Sportsman Champion for the Mountain States VW Racing Association. I’m the only female who did the VW races in my area (CO, NM, UT), and to have young girls come up to you and say how you are their idol is a honor. I am stronger than AS. With my Dr’s help, exercise, PT, and my medications I can do everything I did before, except cross my legs. I have had to make a minor change to support my hobby, I had to upgrade my car from a Volkswagen Bug to a Firebird because it is easier to get in and out of and driving it at high speeds is easier on my body. But I refuse to give up on my dreams, or myself.

A.S. Face 1636: Kim Pelham

A.S. Face 1636: Kim Pelham

My name is Kim Pelham and I am 41 years old. I live in Southern Colorado and I have AS. I was diagnosed in 2012 after an attempted knee replacement surgery. I have had low back pain since high school but I was a “farm girl” who hauled hay and grain for livestock so always thought the pain was related to the physical activity.
In 2010, I twisted my knee and the pain would get better for a few months, then the pain and swelling would come back. By fall 2011, I was referred to an orthopedic surgeon who gave me a knee brace and told me to use a cane. I used the brace and cane for about six months with no improvement.
I started favoring the knee with the brace, which caused all kinds of problems. I saw a physical therapist who recommended massage therapy. I started getting a 30 min massage every week. The massage therapist kept focusing on a spot right above my knee. She kept telling me “this doesn’t feel right”. Turns out, the brace had actually damaged the muscle in my upper thigh and she could feel the damage.
In August 2012, I checked into the hospital for a total knee replacement. As sad as it sounds, I was so excited. I was only 37 years old, but I was so tired of walking like I was 87. I woke up in the recovery room and was told that I still had my knee. The surgeon went on to say that once he opened my knee, he saw a lot of stagnant fluid that looked infected so he could not do the surgery. He said they used 7 liters of saline to flush all the gunk out and sewed me back up. He also said that he removed a section of my thigh muscle that had atrophied. I asked from where and he pointed to the exact spot my massage therapist always focused on.
I was discharged two days later and was told to make an appointment with a rheumatologist. The crazy thing is, my knee felt so much better.
I finally got to see a rheumy in November 2012. He sent orders for MRIs and blood work before the appointment, so the first thing he said was, “You have Ankylosing Spondylitis.” He gave me some pamphlets to take home and recommended I start on biologic right away. He said that my MRI showed inflammation in the SI joints and I was HLA-B27 positive.
I started Humira that next month and have been on it since. It has been a lifesaver. I still work 40 hours a week. I have an amazing boyfriend who is very supportive. He officiates football, basketball and baseball for the local schools and the City leagues. I am an amateur photographer, so I go with him and take pictures.
I know there may come a time when I can’t be this active, but I am not there yet.
Right now, I am kicking AS.

A.S. Face 1634: Katie Hunt

A.S. Face 1634: Katie Hunt

My name is Katie and I live in Colorado with my four children, which include boy and girl twin toddlers. I was diagnosed when I was 26 years old. In 2014, I woke up with nerve pain that traveled from my hip to my toes. I thought I had slept wrong and thought nothing more of it. But the nerve pain turned into foot drop and I began tripping over nothing and falling because my right foot was perpetually in a ‘dropped’ position and wouldn’t bend right to allow me to walk correctly. Still I thought this was a pinched nerve and only decided to schedule an appointment once the pain in my low back became severe enough that even sneezing would make me cry. I was first diagnosed with a pinched nerve and was told to take NSAIDs for the inflammation surrounding the nerve. But I still couldn’t walk well because my foot wouldn’t function properly. I asked for a referral to an Orthopedic Specialist, and, after my MRI, was told I have lesions in my sacroiliac joint and required a PET scan to rule out cancer. Alongside this, my new diagnosis was a herniated disc, foraminal stenosis, degenerative disc disease, and drop foot from an ‘unknown cause’. My PET scan was negative as was the EMG. It had been almost a year since the initial pain began and I was no closer to a diagnosis. I lived daily with lidocaine patches and my TENS unit. I was given an SI joint injection but found no relief. In between the constant follow up appointments with my PCP and the “what diagnosis can we look at now” appointments with my Orthopedic surgeon, I was still in tremendous pain and wore an SI belt daily. Due to the ongoing limp, I was diagnosed with Piriformis Syndrome and received an injection in the same location with no relief. My pain became so severe that I needed help getting dressed and getting out of bed. Multiple trips to the ER made me feel like I was crazy because no one knew what was wrong with me. Frustrated with my PCP, I requested a to change to a DO. In a conversation with my new doctor about a potential diagnosis, he said I could have Ankylosing Spondylitis but he hoped I didn’t because “that’d be a terrible diagnosis. ” My new doctor immediately requested lab work and I found out I was HLA-B27 positive. The latest MRI showed excessive, abnormal bone marrow swelling and sacroiliitis. I was then diagnosed with AS. Since I was told about my AS, I have also been diagnosed with Raynaud’s syndrome and thoracic herniated discs at T3 and T8, along with spinal straightening (which is a precursor to spinal curvature).

I immediately became angry and bitter and resentful. Towards everyone and everything. For two years I had this pain that I thought would subside with the right treatment. I never expected to have an auto-immune disease that would never go away, despite treatment. Some days I literally couldn’t get out of bed. Some days the fatigue was so bad I could barely stay awake through dinner. And every day, my pain was there. Each and every day, I felt like I had a knife in my hips that made it tremendously painful to walk, sit, and even sleep. And at 26 years old, I bought a cane.

I have tried and failed several biologics. I fought through the nausea, injection site swelling, constant fear of germs causing a fatal infection and even the leukemia scares, too. I wanted so badly to slow my disease progression and feel some type of pain relief but I have accepted that immunosuppressant medications aren’t a good fit for me.

I currently take around 20 vitamins and supplements a day in an effort to combat each symptom of AS- from the low grade fever and fatigue and inflammation in my hips to the nerve pain in my legs. I know that there is a possibility of me needing a wheelchair, or being permanently disabled. I understand that auto-immune diseases can be fatal and are at the very least life altering.

I still have trouble getting out of bed. I still need assistance getting dressed on bad days. The difference now is that my perspective has changed. I have learned that while I have an autoimmune disease, it doesn’t have me. And as hard as my body is fighting itself, I will fight harder. I have the unconditional love and support of my family: my children are exceptional and pray with and for me frequently. My perseverance to not be defeated keeps me motivated in all things. Above all, I have an amazing God who reminds me that I’m not fighting alone. None of us are.

“Your pain has a purpose”

-Philippians 1:29

My name is Katie Hunt and I am the Face of Ankylosing Spondylitis

Colorado, United States of America

A.S. Face 1488: Chris

A.S. Face 1488: Chris

Colorado, United States of America

A.S. Face 1412: Christine

A.S. Face 1412: Christine

My name is Christine  from Littleton Colorado.
My symptoms became noticeable enough to be concerned at age 17.  I went to a doctor who prescribed me physical therapy and a constant, heavy dose of Vicodin for my condition for the better part of the year.  My memory of that year is shotty because of the effects of so much Vicodin and I came out of the experience pregnant and trying desperately to overcome my new addiction to opiates.  I lived in pain, the single mother of a newborn six more years after that until finally my new husband insisted we tackle to problem, no matter how long it took.  I started off with an orthopedic surgeon who played “quarterback” after a few tests (SI injections, MRI’s, and bone density scans) send me to a different specialist.
The first rheumatologist I met asked a few general questions and dismissed me with a new prescription of  muscle relaxers. Dead end.  Horrible doctor.  Shortly after I had a terrible episode that landed me in the hospital, frozen in pain.  They did more MRI’s and found inflammation all over my spine.  Their first reaction was to call infectious disease and perform a spinal tap.  Once I was cleared of meningitis, I was sent to get a biopsy of my spinal column.  I was cleared there too. My “quarterbacks last resort was to send me to the only specialist in Colorado who performs SI fusions, an hour an a half away.  He looked at my charts and instructed I go to a rheumatologist.  I was frustrated, defeated, and after being told to go back where I started, utterly hopeless.  I burst into tears and explained I’d been there and all is been through since.  He strongly urged I try another one, and if that failed, he would perform the procedure.  The next rheumatologist I saw performed a simple blood test and diagnosed me within minutes.  This was in 2010.  I’m so happy to have such effective treatment.  Now that it’s been identified and treated, I’m not the same person.  Being able to hold my babies, walk up the stairs, SLEEP, has been life changing.  Bad flare up days are still tough, but I’m glad I don’t have to live with the unknown anymore!

I look forward to keeping in touch with the community you’ve created with this site!

Colorado, United States of America

A.S. Face 1368: Tanya Amstutz

A.S. Face 1368: Tanya Amstutz

Passed away May, 17, 2016

My name is Tanya Amstutz, I’m 34 and I was just recently diagnosed after struggling for 2 years.
My story begins with the conception of me and my husbands first child.
2 months into my pregnancy, I woke up with excoriating pain in my left butt cheek. I couldn’t bend my leg or weight bear. I was so scared because the pain literally came out of no where, I had no prior problem and no accident had occurred. My husband took me to the emergency room and of course since I was pregnant, no one could do anything and the recommended seeing a neurologist and to contact my OBGYN.
While I waited for my neurologist appt, I saw my OBGYN who assured me that this was all pregnancy related. Too much relaxin being produced was causing my SI joint to spread and that it would go away after delivery.
I saw the neurologist who told me the same thing. She thought it was the baby pushing on my sciatic nerve which I thought was insane because at that point, he was no bigger than a walnut. She recommended PT until I delivered and then told me if 3 months after I had my son I was still in pain to come back.
2nd trimester rolled around and I was in so much pain I couldn’t walk or drive, I couldn’t sit for very long and had to quite my job. I went to PT every week. Tried dry needling and stretches but nothing worked and I just got worse. Besides the pain in my butt cheek, the pregnancy was great and I gave birth to a beautiful little red headed son in 2013. Unfortunately, I had back labor and due to all my pain and SI joint issues they gave me an epidural higher up and it still worked, thank goodness.
After I had my son, I continued with PT, got acupuncture, massage therapy and nothing was working. In fact it was getting worse.
I went to the neurologist again and had a MRI which showed a massive amount of inflammation in my left SI joint. She said, oh well, you have arthritis and there is nothing we can do but send you to pain management. I kept saying, how could I have arthritis at 32 with no prior issues. This just came out of no where.
So, I went to pain management while still doing PT…we are now over a year of weekly PT. We tried steroid injections and got me on meds. I had tried a bunch of anti inflammatories that didn’t work and just made me sick. Now, at this point, my pain spread from the left SI joint to my right SI joint and up my lower back. So, nerve blocks here we come and after that a full RF bilaterally L5-S1.
I was still in terrible pain. I got a second MRI that showed the inflammation had spread into the right SI joint up into the facet joints of L5-S1.
I saw a spine specialist and they found nothing wrong. My GP ordered blood work, no inflammatory markers or indicators of lupus. At this point I am so frustrated. I can’t walk, play with my son, drive…it was horrible.
So I finally saw a rheumatologist. She drew blood and I came back positive for HLA-B27 and she said she thought I had AS and wanted to start me on biologics right away. She was very unfriendly and rude so I decided to get a second opinion.
I met with a rheumatologist who specializes in auto immune disorders, specifically AS. After reviewing all the notes from every doctor and all my MRIs and X-rays, he officially diagnosed me with AS and I’m due to start humeria this Friday.
To say the least, this freaked me out because I actually knew what this was. I studied forensic anthropology focusing on paleopathology and one of my skeletons had AS. I knew the potential damage of having this disease.
While I was waiting for my second opinion, I joined your support group and another so I could ask questions and vent to people who understand and it has helped me a lot…just knowing I’m not alone.
I’m terrified of what my future may hold especially since my pain and swelling as spread to my knees, thumbs and wrists but I’m trying to stay positive for my husband and son.
I just wanted to share my story and get an official Faces number and a bracelet so I can help spread awareness and show my support.
Colorado, United States of America

A.S. Face 1265: Erin Thatcher

A.S. Face 1265: Erin Thatcher

I am 30 and have had AS for the past 10 years. It took me 8 to get a proper diagnosis. As a child I had been inflexible, but from my late teenage years I began having issues like chronic tendinitis, bouts of inflammation and pain, and several fractures.
No provider could help me. I saw countless doctors and physical therapists but everyone was stumped. I was diagnosed with celiac disease, several vitamin deficiencies (D, B12, iron, etc) that I still struggle with today. We hoped that resolving those problems would fix my inflammation and joint issues but it did not.
Eventually in research I found out about enthesitis, the inflammation of tendons and ligaments where they attach to bones. This was a major issue of mine and I asked my rheumatologist. She agreed to test me for HLA-B27 which she said would come back negative because it is an indicator for a “Man’s Arthritis”. It was positive and I switched providers following the results – my new Rheumatologist did more testing and I was diagnosed with AS promptly.
Today I have twin toddlers who were born micro-preemies. They make my life so worth it – though it is a challenge to physically care for them at times. I work full time and also run a non-profit  organization. Enbrel, Mobic, and Lorzone along with a consistent sleep & work schedule help me manage my AS.
Our story: LittleDragons626.blogspot.con
Colorado, United States of America

A.S. Face 1217: Victoria Herzberg Toler

A.S. Face 1217: Victoria Herzberg Toler

Our family has a very long history of AS It’s actually destroying my eldest child worse than it has attacked me in it’s physical fashion.
I, as a young woman began showing signs of Heart Valve issues, then Graves Disease.  Of course these are tell tale signs that go hand in hand with AS and it’s diagnosis.
VictoriaT

A.S. Face 1051: Jerrie Hall

A.S. Face 1051: Jerrie Hall

Hi my name is Jerrie Hall. I live in Colorado. I’m 46, happily married mother of three amazing kids.
I was diagnosed with A.S. October 8, 2013 after many years of unexplained pain. It all started in my 20s when I had low back pain. As a hairdresser, I would think my back pain was due to my job, being on my feet all day and leaning over the shampoo bowls. After I had my kids it got worse. I had a MRI on low back and said I had a small issue with my L5-S1 disk. Then tendonitis on my left thumb(non-cutting hand) and tennis elbow. Major female pain and problems that lead to a hysterectomy. Both knees scoped due to meniscus tears not knowing how it happened. I always had neck pain that eventually generated into right arm pain, tingling and numbness in thumb & index finger. I had a MRI that resulted in two disks removed and fused with a titanium plate with 6 screws. After that it was a downward spiral. Multiple ER trips with excruciating pain. All the doctors would say nothing is wrong. I felt like I was CRAZY. I could no longer hold a job and I was extremely depressed. I received a steroid shot in my SI joint in May that was amazing. That is when my new doctor ordered some blood tests. They came back with high inflammatory levels and HLA-B27 positive. I was then sent to a rheumatologist that knew exactly what was wrong.. That was a little over a week ago. He has put me on Meloxicam 7.5mg twice a day and Enbrel once a week which I just started two days ago. I’m hopeful that the Enbrel will help. The meloxicam has helped with the inflammation. I still have quite a bit of pain. I don’t know any body with this disease and I feel all alone. I am some what relieved to know I’m NOT crazy, but at the same time, I’m very scared. I would love to be able to correspond with someone that understands what I’m going through. Thanks for reading (listening).
Colorado, United States of America

A.S. Face 1007: Nicholas J.

A.S. Face 1007: Nicholas J.

My name is Nicholas J. and I am a face of Ankylosing Spondylitis, the invisible and incurable auto-immune disease that plagues me on a daily basis.

I have been actively suffering from its painfully debilitating symptoms for more than a decade. During my early college years from 1999-2003, I had convinced myself that taking naps on a shoddy couch in between classes was the cause of pain and aching in my back and hips. While this thinking was slightly karmic in nature, flare-ups were minor and sporadic so the need to investigate what was going on internally never crossed my mind much.

After finishing my undergraduate degree, I spent time traveling extensively to do some soul-searching around the globe.  Overnight train and bus rides often left me unable to do simple things like enjoy sports and an active lifestyle that was a part of me. Upon returning to the USA, I noticed that the pain was slowly beginning to creep into other areas of my upper back and neck. Over the next 4 years, I visited a variety of chiropractors and other doctors who were shockingly amazed at how stiff my back was yet they offered no viable treatment.

In 2006 the effects began to intensify greatly as if someone had been injecting me with a turkey baster sized syringe filled with concrete into my spine every night.  Doing simple things caused such immense pain that I began to forget what living a pain-free life felt like. I dreaded just getting out of bed every morning and starting a new day. Anytime I had to sneeze, I was forced to grab a hold of a doorknob or other sturdy object to keep myself from being knocked over by the throbbing pain and spasms. Driving a car became troublesome and dangerous as I couldn’t glance over my shoulder to see cars in neighboring lanes or oncoming traffic. The stiffness and pain reduced sideways mobility in my head and neck to only a few inches.

A year later my body felt like it was shutting down completely. A summer of frisbee golf left my right arm swollen and throbbing as if it had been slammed in a car door. As a high school state tennis champion, I couldn’t even play one game of ping pong to save my life. My left foot was next to fall victim and off to another physician I went to receive a cortizone shot that would result in little affect on anything. After another string of doctor’s visits, I finally landed a reputable rheumatologist who properly diagnosed me with AS after extensive MRI’s and x-rays. A genetic DNA analysis confirmed that HLA-B27 was present in my genes.

Upon hearing the news I felt shattered as if this was some sort of terminal death sentence and that was the end. While learning more about my disease I stumbled upon a symptom which predicted what an untreated skeletal system will become over time called “bamboo spine”. Imagine a spine appearing as a bamboo stick with zero flexibility or movement and all of the joints fused together in between the vertebrae. In my mind that image resonated with intense fear and the thought continues to haunt me still to this day. The only light at the end of the tunnel was the possibility of treatment through intravenous medication that would help my body fight the vicious attack that was underway inside of me.

The next few months were horrendous as the pain continued to increase while I waited to begin my IV infusion treatments. Severe depression, anxiety and overall worthlessness set in from the minute I woke up in the morning. A light in my dark tunnel finally appeared in December of 2007. I anxiously received my first infusion of Remicade, an extremely powerful medicine that works by tricking by body into not attacking me and ruining my joints, bones and limbs. Within a few weeks the pains in my extremities began to heal and my bones literally started to feel as if they were unlocking.

I was finally healthy enough physically and mentally to begin enjoying life and I slowly returned to a more normal routine. Under the advice of a well-educated sister who had experience with Remicade and rheumatoid arthritis, I began a practice of advanced yoga and healthier living. I currently exercise or engage in some sort of physical activity almost every day, with skiing be my absolute favorite thing. I work with a personal trainer who specializes in treatment through MAT (Muscle Activation Techniques), a dynamic muscular assessment system that analyzes and corrects muscular imbalances caused by the my disease’s desire to fuse my bones and joints.

This past week I received my 50th infusion of Remicade of what will likely be dozens more for the rest of my existence. Every 6 weeks I spend a handful of hours sitting patiently with a needle planted into my arm as a bio-technological marvel and life-altering medicine slips into my bloodstream drop by drop. The experience is bittersweet but provides me with strength and hope to avoid using painkillers or any other treatment that would render my life zombie-like and non-productive.

Currently my body still hurts daily in my back and neck but I am accustomed to the persistent abuse by now. There are moments where I wish I could just shake my body like a wet dog on a hot summer day and magically my whole body would magically unlock. It seems to be getting a little worse each day, but I try not to let that get me down. The reality of living a pain-free life evaporated in the last decade, but that detriment isn’t going to prevent me from accomplishing my goals and living to the fullest. Don’t ever give up and set your dreams high in life, because it feels that much better when you crush them with joy in the end.

Colorado, United States of America

A.S. Face 0947: Karolyn Ellis

A.S. Face 0947: Karolyn Ellis

I  was diagnosed with AS in 1982.  .  This year I celebrate  20 years with REplaced Hips (1993). I am 100% Fused in Spine and Neck;  and  have Shoulder Limitations.  Yes.  I have had to replace several activities with “low Impact”(as much as possible) options through the years.  My favorite is still Bicycles and  Scooters.  I agree with Dale,,”Never give up your Dreams”….

 I  also fused before  the major (autoimmune depression) medications.  I have not really talked to any folks that liked taking them.     I have adjusted my diet a lot.

Thank you, Cookie, for putting this all together…

Fitness Concepts

Karolyn Ellis

Canon city, Colorado, United States of America

A.S. Face 0869: Suzann Geisler

A.S. Face 0869: Suzann Geisler

Hi, my name is Suzann Geisler and I have AS. I am 49 years old now (July 2013). I was diagnosed in September 2012.
First, it is important to me to say thank you to Cookie and recognize the great work she has done putting this site together. I have read the first 543 stories and plan to read every single one of them! I thought I should write my story before the site was full.
Next, I want to point out that I have been active, healthy, and fairly athletic all my life. I was on the track team in middle school and rowed crew in high school. I have always enjoyed skiing, hiking, biking, and camping. I love being outdoors! Also, I am not a whiner. I gave birth to 2 children with no painkillers and no whining. All of the physical issues I will mention here are the things that, when I look back, could all be attributed to or associated with Ankylosing Spondylitis and/or other auto-immune issues.
When I was a teenager, I had some jaw problems that were not bad enough to complain about – some popping, stiffness, locking up, but they went away after a while. In college I had some heart problems, went to a cardiologist and was diagnosed with AV Node Re-entry, a conduction issue. My first daughter (pictured above with me) was born when I was 26 with no problems or complications. Soon after that I was getting my Masters degree and working full time in a daycare setting. I began experiencing back pain and neck stiffness. Going to a chiropractor, getting massages, and doing yoga usually helped and the pain was not too bad. The doctor said my pain was probably due to bending over and picking up babies and toddlers all day long. He noticed that I had kyphosis (shoulder slump) and an unlevel pelvis. But I was young and healthy and active so I thought nothing of it.
A few years later, I was teaching kindergarten and did a forward roll with the kids. I experienced such horrible back pain during and after the roll that I had trouble walking. I had to take pain killers and stay home from work the next day! When I was 31 years old, after a spring ski trip, I experienced severe pain in my tailbone/sacrum area. I had terrible pain when sitting. For many years after that I was a regular visitor to the chiropractor, and tried (painfully) to have my tailbone adjusted with no success. I sat on a “doughnut” pillow for probably 15 years.
When I was 37, I married my second husband and a few months later my hair started falling out in clumps. The doctor said it was Alopecia Areata, an auto-immune condition. Soon after that, while pregnant with my second daughter, I was bending over to feed the dogs and suddenly experienced a SEVERE burning pain in my lumbar spine. The doctor thought I had bulged or ruptured a disc, but she couldn’t take any x-rays or give me any prescription pain meds because I was pregnant. Any time I tried to sit up, the pain was so bad I would throw up. So I spent the next 4 weeks laying on the couch. I had morning sickness and had to empty my bladder often, but when I tried to get up and walk to the bathroom, it would take too long and be too painful. I literally could not put one foot in front of the other. My feet shuffled about 2-3 inches at a time. I would start to sweat and shake from the effort and the pain. Soon, I just put a 5 gallon bucket next to the couch to receive my waste. My poor husband and daughter had to deal with that! After a month I could get up and walk by myself. After two more months I went back to work, but I wore a back brace for the rest of the pregnancy. During the final trimester, I had pretty bad pain in my right hip, which was diagnosed as bursitis.
Another auto-immune condition reared its ugly head (and I mean ugly) in the summer of 2007, when I was 42. I had a SEVERE case of eczema on my back, shoulders, and thighs. After trying creams and lotions, I started eating Paleo (no grains, dairy or processed foods; only meat, vegetables, fruits, nuts, and seeds) and the eczema cleared up. That winter, I “pulled a muscle” while shoveling the driveway. The doctor put me on Vicodin and Flexeril and it calmed down.
Between the ages of 44 and 47 I was in the best health of my life! I was eating the Paleo diet and I had joined a Crossfit gym. I could deadlift 197#, bench press 132#, back squat 155# and shoulder press 90#. I could do 17 pull-ups in a row and a “Murph” in under 50 minutes (that’s a one mile run, then 100 pull-ups, 200 push-ups, 300 squats, then run another mile). I was so happy and healthy and proud of myself! All of that came crashing down when I went through a divorce and a year later my ex-husband died suddenly. Under such stressful circumstances the eczema came back, and I ruptured my meniscus and had to have surgery. I was on crutches for 6 weeks because the doctor found bone damage in my knee during the surgery.
In December 2011, a few weeks after getting off crutches I was anxious to get back to full strength and so I went back to the gym. The day after a workout that involved a lot of squats, I experienced really bad pain in my upper hamstrings, where they attach to the sit bones. My tailbone hadn’t bothered me in years, but once again sitting for more than 10 minutes was excruciating! Back to the doctor I went. He thought it was a hamstring injury and sent me to physical therapy. After a few months of PT, the pain wasn’t showing much improvement, plus I started waking up very achy in my neck, shoulders, low back, hips, and knees. This pain was worse in the mornings and got a little better during the day, but it was always there. Friends started to notice me limping and walking around like I had done a Murph every day. And that’s what it felt like! I had never experienced this much pain before in my life! I couldn’t reach down to put on socks and shoes. I couldn’t reach over head to put on a shirt. It took me a full 3 minutes to get down on the floor to stretch at night, and then a full 3 minutes to get back up because the pain slowed me down so much. Sadly, I had to quit Crossfit.
I went to my local clinic where I saw my favorite FNP Dale Yokum. I will be forever grateful to him because he listened to me. I had known him for a few years and he realized that this amount of pain was not normal for me. He ran a few blood tests for inflammation and rheumatoid factor and referred me to a rheumatologist. My first appointment was in July of 2012. She thought it was reactive arthritis, did blood tests and x-rays, and put me on Prednisone for immediate pain relief. Later, she sent my lab results to me in the mail where I found the positive HLA-b27 result in black and white. At my next visit in September we discussed AS symptoms and prognosis, and she put me on Sulfasalazine, which seemed to work as long as I was still taking the Prednisone, too.
Over the next 6 months my pain was relatively controlled, but I started to experience extreme brain fog and fatigue. I did a lot of research on the Internet and joined the SAA. After I weaned off the Prednisone the pain in my hips and low back got worse so at my next rheumy visit I started Indomethacin. It helped with the inflammation, but I knew that something else was going on. In March of 2013, just after I turned 49 I went to a local MD who, thankfully, has some rather alternative ideas. He ran some different tests and found out that I had insufficient adrenal function, nocturnal hypoxia and was hypothyroid. My body was not getting enough oxygen at night and was not producing enough hormones to function properly. He also gave me an MMJ prescription, which I hardly use, but it’s nice to have.
By the spring of this year, I was on 6 different prescription meds and 7 different supplements, plus sleeping with an oxygen machine at night. And I was still having pain and fatigue issues. I was seriously thinking about Enbrel and talked to my doctor about it at my visit in June. But then I ordered Carol Sinclair’s book, The IBS Low-Starch Diet from Amazon after reading about it during my hours of internet research. I thought I’d try the diet before going on biologics. I had read over 500 of the stories on Cookie’s Faces of AS and I knew that many fellow ASers had tried biologics. It seemed like in most of the stories, the biologics worked great at first, but after a few months or sometimes years something changed and it didn’t work so well. Or sometimes the person with AS started having complications or infections because of the biologic. Even people who were happy with the meds would say things like, “Enbrel (or another) works well, but I still have some flare-ups and get tired easily”. So, in an effort to stay on medication with the lowest side-effects for as long as possible, I started the LSD (low starch diet).
Now I’ve only been on the LSD for a few months, but so far – I LOVE IT! I can say the same things that biologic users do – I still have a little pain and fatigue, but overall the LSD has made a huge difference! My brain fog has all but disappeared; my range of motion is better in all joints; I can do yoga again; sometimes I still have to take an afternoon nap, but my energy levels are higher than before; I can sit for hours (if I need to, like on long car trips) without pain. I am still taking my prescriptions, but I am not going to start Enbrel until/unless the diet stops working. I am so happy to have a more natural/healthy choice available.
Last spring I had to cancel a trip to my 30 high school reunion. I was so excited about going and was very sad that I had to cancel because of the pain I was in. Before starting the diet, my younger daughter and I went to Florida with family and I had to get a wheelchair when we went to the Universal theme park. This summer, after starting the diet, I took my younger daughter on a 2 week trip to visit family in the Midwest with no problems. In July, we went to my older daughter’s wedding in San Antonio. We walked up and down the Riverwalk and even went to Sea World one day. I walked for hours with NO wheelchair!
Anyone who is reading this and is at the end of their rope with pain: the book costs a lot less than your prescriptions do! It can’t hurt to try! Here’s what I eat: all kinds of meat (except sausage), all kinds of fruit (except bananas), any raw vegetables (like in salads), dairy (some LSD people can’t tolerate dairy), a few nuts like almonds and macadamias, and natural sweeteners like honey, stevia, and maple syrup. Oh, and chocolate! And I’m OK with that.
When people ask, “How can you give up bread, pasta, pastries, potatoes, etc?” I tell them, “I’m not giving up food, I’m giving up PAIN!” When I went to Costa Rica last year with my best friend, I had to sit on the beach and watch while she took surfing lessons because I was in too much pain (even with Vicodin) to try surfing. If you ask me what I would rather do: eat a donut or go surfing in Costa Rica, my answer is SURFING! With no pain!
That’s all for now. Keep on moving, searching, and trying new things. Never give up!
Written July 16, 2013.
Ridgway, Colorado, United States of America

A.S. Face 0784: Amanda Carroll-Glickman

A.S. Face 0784: Amanda Carroll-Glickman

Amanda Carroll-Glickman
Colorado Springs, CO
I am a 24 year old female and was diagnosed with AS in November 2012. My symptoms began about a year before that. They began as some hip pain. I would get sharp pain in my hip and glutes when walking. I thought that I had pulled a muscle, got a ligament caught, or something like that. I went to the doctor, my D.O., and he gave me numerous explanations as to why I was feeling the pain that I was. The first time I went, he said that my hips were out of alignment and were causing my muscles to seize. He gave me an adjustment and I felt much better. I then continued to see him over the course of many months, and my visits started to become more frequent. He stated that I had uneven muscle development in my back and hips. He recommended a specific type of yoga called Iyengar. Iyengar focuses on body alignment and awareness. I continue to practice this yoga regularly and find it to be one of the best treatments for range of mobility and pain prevention.
During this time I was regularly trying out chiropractic adjustments, but I found the adjustments I got from the D.O. were more specific and beneficial for my body. I did get X-rays at one of my chiropractor visits. The X-ray showed that I have an 8 degree curve in my back, or minor scoliosis. My D.O. told me that this was most likely a result of that uneven muscle definition, and that many people have minor scoliosis.
Due to a change in insurance, I began seeing another D.O. in that practice. I told her about what I had been going through and how the pain had become more frequent. She decided that it was time to do physical therapy. I did physical therapy for nearly 4 months. I got most benefit out of the adjustments, needling, and ultrasound, but some stabilizing exercises seem to still help today. I also happened to be lucky enough to have an amazing therapist who cared about my case and was able to identify that my pain was coming from my SI joints, and likely from inflammation in those joints.
When physical therapy did not produce as much progress as my D.O. had hoped, and my flares continued to happen (and got worse), she decided imaging was the next step. I had an MRI of my lumbar spine and my sacrum. I had a bulging disc in my L4 vertebrae, but most concerning was the bilateral inflammation in my SI joints. My pain had been mostly on my left side, so my doctor did not know that both joints were inflamed. She told me that this may be a result of an inflammatory condition and I should get a blood test. Sure enough, I tested positive for HLA-B27. She told me this was consistent with Ankylosing Spondylitis and that I needed to see a Rheumatologist.
My Rheumatologist has been great and was very patient in answering all of my questions. Because my aunt has Crohn’s, he said that I could have a different spondyloarthropathy. Specifically, one that is linked to inflammatory bowel disease. I was prescribed Meloxicam (generic for Mobic) and it has made a huge difference in helping prevent my flares. I had a CT scan, EDG, and colonoscopy. It was determined that I do not have Crohn’s, but that the NSAIDs were already creating small ulcers in my terminal ileum. My GI told me that I should know that NSAIDs are not a long term treatment option. I lowered my dose from 14mg to 7.5 mg and seem to be doing well.
I love to be active, and right now I am trying to use that to my advantage. My Rheumy tells me that range of motion exercises will be the real life saver in battling this disease. I love Iyengar yoga and encourage other AS patients to explore it. I am lucky enough to have an amazing teacher that I work with one on one. I also love to swim, bike, hike, walk my dogs, and enjoy the Colorado mountain air. Most days I wake up stiff and feel extremely tired, but I find that the more I move, the better I feel. I try to take it all one day at a time, but it can get overwhelming to think about losing range of motion or missing out on days due to the intense pain. I refuse to let fear and uncertainty take away from the life I am blessed with today. I am also currently experimenting with an anti-inflammatory and low starch diet.
I have started a blog (carrglick.blogspot.com). Feel free to follow along! Stand tall
Colorado, United States of America

A.S. Face 0739: Tom Jump

A.S. Face 0739: Tom Jump

My AS Story

by Tom Jump

Denver, Colorado

May 2013

I have had Ankylosing spondylitis symptoms since I was 25. It started in October of 1979 when on the last segment of a cross-country auto trip, I began to experience severe lower back and sciatic pain. Traveling from Denver to San Fran to LA and back, my wife and I tent-camped and slept on friends’ floors along the route. On the final leg from Las Vegas to Denver, an awful, extreme pain started in my sacrum/sacroiliac and right buttock and zapped me down through my right leg. It marked the start of my AS symptoms and began an 11-year odyssey of appointments and examinations by physicians, orthopedic specialists, chiropractors, physical therapists and finally in 1990, a rheumatologist with the confirmation that I indeed had AS.
In those early days I had no idea that my AS was just beginning. Throughout my life before then I had been healthy and athletic but always had tight ligaments- touching my toes was never possible. Six months before the symptoms started, I badly sprained an ankle and at that time I was unaware that AS activation was thought to be triggered by such injuries. Neither did the medical personnel that I saw in the ensuing months as the disease fixated on my lower back and sacroiliac, and the sciatica moved to both legs.
By early 1980 I started seeing medical people who didn’t have a clue about AS. In those days my job involved drawing architectural and landscape plans while sitting at a drafting board. At least one doctor thought that was creating the back issues. I was prescribed the anti-inflammatory butazolidin alka which was great but could only be taken for short periods of time. The first chiropractor I saw told me if I crawled on the floor, my spine would realign itself. When I tried this, it did nothing to improve my condition but sure threatened our dog! The pain would often wake me up at 4 a.m. and I would sit on the front porch so I didn’t wake up my wife. I was stiff as a board and couldn’t enjoy many of the activities that I used to.
An orthopedist told me that I needed to get in better physical shape or they were going to have to consider back surgery because he thought it was a disc problem. His recommendation was to start swimming and although I had never swum a lap in my life, I decided to try swimming after work. I started with only a few laps a couple times a week but since it seemed to help, I eventually became a decent swimmer. I lost 15-20 pounds and over a couple years in the pool worked up to alternating half-miles and miles every other day.
I also found another chiropractor who was helpful with back alignment and with his direction and some research of my own, I developed a twice-daily stretching plan which I did religiously. This stretching was usually done on a pad in front of the TV in the morning and before bed and that helped to manage some of the pain and stiffness. I also started riding a bicycle which also loosened the sacrum and strengthened lower back muscles.
Eventually the exercise and stretching improved my pain and mental condition from awful to fair. I took OTC meds but still had plenty of pain and stiffness in my low and middle back. The sciatica would return occasionally, but overall I was managing the unknown affliction the best I could. I stayed away from heavy lifting and limited impact exercises like running. I could no longer play golf the way I once did, but for 8 or so years the AS became tolerable. During some of that time I was so obsessed with exercise that I did 10k’s and triathlons, all the while managing the disease daily.
As the 80’s wound down, I was then over 30 and in addition to the daily back pain, I started having more and more stiffness in my neck, shoulders and sternum which made it very painful to ride a bike and swim. At that time I had also started a family and my career became more intensive so I did not have the “self time” to spend on managing my disease through exercise like I once did. Of course it had never been diagnosed but that was about to change.
In 1990 I had a flare-up that was very severe in my neck and left shoulder so the chiropractor referred me to another orthopedic doctor. This guy was totally insensitive and said he couldn’t do anything to help. Panicked, I asked if he could prescribe some physical therapy which thankfully he did and this became the turning point in finding a diagnosis. I went to a physical therapist who was very good and after a month she was concerned that my back, shoulders and neck were still incredibly inflexible. She asked me if I had ever been tested for AS and of course I had never heard of it. She referred me to a rheumatologist who prescribed the blood test to ID the gene and finally at age 37 all this pain had a cause and name!
I was put on daily anti-inflammatories for the first time and felt decent but I was still stiff and had that dull, continuous ache in my back and neck. AS proved to be relentless and in 1994, I experienced iritis for the first time- first in one eye and later in the other. That ended my contact lens-wearing days which resulted in me being even less active than I had recently become.
Iritis is truly awful and the flare ups continue in just the right eye infrequently to this day. My vision has become poor- the left eye can’t be corrected better than 20/70, the right eye has had a detached retina repaired and there is a blind spot in the lower right quadrant. Plus my ophthalmologist says the steroid drops used to treat the iritis are causing cataracts but he wants to put off the surgery as long as possible because it will make the iritis worse!
As I said before, AS is relentless. I know some my symptoms are less severe than those that many others have and for that I am both thankful and sympathetic. However my back and neck are always stiff, my posture gets worse as the years roll on, I have lost almost 2 inches in height and the iritis returns on occasion. I stretch on an exercise ball when I get out of bed every morning and I try walking for at least 30 minutes every other day just to maintain.
I am so glad there are people like Cookie and the support organizations and communities for us and I am really pleased to see that the clinical research into AS is progressing. We have come a long way in the 30+ years that I have been afflicted and that gives me great hope for the next 10 or 20 years! Hopefully my children will not develop symptoms which so far (knock-on-wood) they haven’t.
The “Faces of AS” is so great and I really appreciate reading the stories of all the other AS folks. There are so many courageous people with this disease!
God bless all with AS and those who are supporting them!
Colorado, United States of America

A.S. Face 0636: Gerald Allen

A.S. Face 0636: Gerald Allen

My name is Gerald Allen, age 49, and I live in Denver, Colorado.
Colorado United States of America

A.S. Face 0623: Shawn A.

A.S. Face 0623: Shawn A.

I was diagnosed with A.S. after returning from Iraq at age 25. There was a period over 6yrs of the VA telling me it was a “herniated disc.” They kept trying to just drug me & up on pain killers & make me go away. I know its a hard one to diagnose and so many ailments have similar symptoms. Luckily they had a younger doctor who thought outside the box and had me tested for the HLA-B27 blood precursor.
Sometimes this stuff is genetic, it wasn’t with me, no one in my family had a history of it. The VA took accountability for it & gave me a high disability rating of 90%. Just like the poor Vietnam Vets who didn’t get help for years, my generation of Iraq & Afghanistan Vets are coming down with weird health issues(leuekemia, Krohns, A.S., Rheumatoid & autoimmune diseases). They could possibly be attributed to exposure to burn pits, squaline in the Anthrax vaccines, depleted uranium, high stress, and exposure to other environmental hazards. There is a book on this called “Vaccine-A,” I recommend anyone else who has health issues & served in the military read. I don’t want to sound like a damn conspiracy theorist, but it’s a known fact the Gov’t doesn’t always have your best interests at heart.
Things went from bad to worse, causing me to resign from work. I experienced numerous symptoms of A.S. siatic pain, sleepless nights, blurred vision(I had just bought LASIK!), urinitis, side pain, back pain, etc. The VA took forever to get me started on the HUMIRA injections. I became irritable & disillusioned by everything, I blamed others, felt like an invalid, felt unable to defend myself or my GF at the time if anything bad happened. It really wears on anyone, but especially me being a young man and feeling as though I was “shot down at my prime.”
I did the HUMIRA injections for a few months, finally had relief from sciatica, krohns like symptoms, sides and back hurting that caused me not to sleep for yrs. it was nice to get some normalcy back in my life, but at the same time the shots have side effects and I like a holistic natural approach. I’m no hippy, but these shots have not had that much long-term testing. I know you can’t believe everything you read but I believe carol Sinclair’s “The Low starch diet” books approach. I now eat low starch and I stopped injections. I keep healthy by eating a diet similar to the Paleo/caveman diet. I have had many relapses & it’s hard as all hell not eating starches at times, but well worth it! I feel pain free, exercise regularly, do cross fit, mountain bike, run, and feel damn good! I don’t listen to the doctors and I keep fighting. Last checkup in the rheumetology clinic, the other vets there were walking with canes, and moving slow, I ran up the damn stairs. The doctors were impressed, said I haven’t gotten worse but improved! The doctor told me off the record “keep up what your doing and we don’t need to see you again if you don’t want to come back”. To which I replied “hell yeah I’m out of this depressing place.”. I say do what works for you, stay positive, eat right, exercise, don’t give.up. I went through yrs. of depression and feelings of lost hope. It’s not over, could always be worse.
I struggle with side-effects still & don’t just live in denial that I don’t have anything wrong with me. I take longer to warm up, recover, feelings of fatigue, etc. But at the same time staying positive, eating right, have all helped me out greatly & I don’t feel like I have health issues as much as before.
In the future I hope to find a way I can work for a non-profit. I want to be able to help others and get my mind off myself. I don’t want to sit around but be a productive part of society, not feeling sorry for myself.
I hope by writing this others can use my story as something they can relate to & to motivate them to stay strong!
Colorado Springs, Colorado United States of America