A.S. Face 2135: Sara Bjoin

A.S. Face 2135: Sara Bjoin



My name is Sara Bjoin and I was diagnosed with AS in 2018. This group has been an incredible blessing for me since I was officially diagnosed. I have had symptoms for almost ten years now. About 5 years ago I had what I thought was an answer. My doctor at the time had done an xray and sent me to a neurologist who had diagnosed me with sway back and slight deterioration. Numbness in my arms upon awakening and having an increasingly hard time standing when I wake up over the next 5 years along with horrible back and hip pain made me seek different medical advice after moving. My new doctor was was quick to do a new xray where sclerosis was found in my hips, bone spurs were found clear down my spine, and fusion was found at my s1. I was immediately recommended to a wonderful rheumatologist who explained to me what AS is, what bamboo spine is, and she started me on humera right away. I’ve also been on prednisone which had helped a bit with the bone spurs in my feet. But due to job changes my insurance has lapsed and now I have been off of all meds for a month and all symptoms are back full force. I never once thought any of this could happen to me. I am a mother of 3 and this could not be any more of a sad challenge.

A.S. Face 2109: Susie

A.S. Face 2109: Susie

A.S. Face 1978: Suzanne Evans

A.S. Face 1978: Suzanne Evans






My name is Suzanne Evans, I’m a 45 y/o mother, wife, grandmother and Veteran (Afghanistan OEF 2011-2012, Combat Medic)
I was very athletic growing up, playing basketball, volleyball, track etc. I am tall, 5’11”. As I went through growth spurts in my early teens, I suffered growing pains in my legs…some times they felt so heavy I could barely run. Both of my knees would swell occasionally and I once had to get my Rt. Knee drained as it ballooned up huge. I’ve always had knees that would crunch when going up stairs (my childhood doctor told me I just had rough knee caps).

I had fainting spells starting in my late teens and they were attributed to low blood pressure and anemia. In my early 20’s I began to have strange heart palpitations that still come and go today.

In my late 20’s I got seriously into running and was training for the Hood-to-Coast relay. I woke up one morning couldn’t step on my left foot (fell to the ground). It was determined I had a pinched sciatic nerve. Physical therapy and chiropractic care.

In my mid 30’s I joined the Military as a combat Medic. Soon after training began, I ended up getting horrible swelling in both ankles. They were so big, I was required to lay in bed for a week with them elevated. From that time on, I began having swelling on a regular basis. Flying is the worst.
I also ended with a stress fracture in my left femoral neck, no fun.

After I completed training, I injured my lower back while doing PT. I went to physical therapy, but my back never got better and I just learned to live with the pain and medicated with ibuprofen.

While on tour in Afghanistan, I was very busy and I wore a full combat load of about 80lbs on my shoulder, pretty much every day for a year. After I came home, my neck, middle back, lower back were a complete mess. I also began having painful and tingling feeling in both my forearms, hands and wrists as well as pain going down both legs and a painful and tingling feeling in my shins and feet.

I had seen many doctors over the course of the past 10yrs (Military, Civilian and finally the VA). Finally, last year (2017) I ended up seeing an amazing Rheumatologist through the VA in my home state, and after running lab work, x-Ray and MRI…it was determined that I have AS (HLA B27 +) as well as fibromyalgia.

I am relieved to finally know what is wrong with me and now have a treatment plan in place. Humira and meloxicam, as well as regular yoga and ZERO alcohol. I was self medicating for yrs using alcohol.

I am a Warrior ❤️

Suzanne Evans

A.S. Face 1666: Ron Bissonette

A.S. Face 1666: Ron Bissonette

McMinnville,Or
43. Diagnosed 10 yrs ago.
Oregon, United States of America

A.S. Face 1626: Bree Trejo

A.S. Face 1626: Bree Trejo

My name is Bree Trejo. I have been battling pain since the age 16. I was always told growing pains or scoliosis. As I got older more symptoms started popping up. I was told I couldn’t have children but thet could not tell me why. I now have 4 children. In my 20’s my teeth literally crumbled in my mouth. Still no answer why it was happening. On the outside I looked healthy but on the inside a storm was brewing.  In my late 20’s the pain in my joints became worse. I was told it was caused by depression and was put on an anti-depressant. In 2012 I was a full-time mom and student. But my health took a turn for the worse and I was in and out of the hospital a lot. Still no answers. Couldn’t figure out what was happening. My body was just in overload. Was checked for Cancer due to enlarged lymphnods. After seeing a great number of doctors ALL telling me nothing was wrong with me and maybe I should seek mental health. Or that I was an F3- Female, fat and forty. Not explaining to me how I gained 40 pounds in a matter of weeks when I was not over eating or eating unhealthy. I was on gluten free diet due to inflammation in my gut.  I was finally diagnosed with Epstein-Barr. Which is what they think might have triggered the silent HLA-B27 into active status. I was finally diagnosed with Ankylosing Spondylitis in Nov 2014. Since then they have added a couple more autoimmune diseases to my list. It has been a long hard process but I never gave up. Even when I wanted too. I still have a lot of symptoms but have hope for help with finally getting to see a Rheumatologist in August and try out some biologics. I had never heard of AS or knew what it was. I did so much research and became a member to so many support groups. I had a hard time understanding it myself let alone explain it to friends and family. Some understand it now and some will just never get it. There were so many times I wanted to just give up and end it all but my AS family wouldn’t allow it. They were there for me with late night calls, sobbing phone calls and irate text and emails. They always responded and talked me away from the edge. For them I am thankful to still be here. I have accepted my roll with AS and am committed to bringing awareness to this nasty disease. I am a part of Walk AS One and Have a walking team called Perseverance Warriors. We walk the Walk Your AS Off walk each year. We also walk in parades to bring awareness.  Thank you for taking the time to read my story.

A.S. Face 1571: KaCe Freeman

A.S. Face 1571: KaCe Freeman

Let me start by saying my whole family has AS.
It’s an exaggeration, but it’s also not.
I am the third generation in a row with it.
I firmly believe that knowing what is happening to me is a blessing.
But with modern medicine’s view of our disease. It’s also a curse.
That being said I still haven’t gotten to ANY specialist.
I desperately need to but my disabilities are keeping me from it. I need an advocate, and a support system that I don’t have.

My story is long.
People always find interest in it.
My life wasn’t normal.
I still am trying to figure out what normal is.

I am going to try to keep this short.
It’s always a problem knowing where to start my story.

My grandmother has borderline personality disorder. She also has AS. She suffered extreme abuse as a child from her father. It extended to sexual abuse as well. She had to be strong and take all of the abuse to help her sister. My nana. My nana got rheumatic fever when she was 9. She was bedridden for a year. And she was not abused during that year. My grandmother hardened to protect my nana.
It turned out to be a shell that never stopped thickening. Like a pokemon using harden.
She developed a need for control.
A hate for herself.
And a lot of pain she refuses to show anyone.
That includes her ankylosing sponylitis.
She hides it. She hides it like she hid her pregnancy at Christian college with my mother. Starving herself. My mother was born 5 lbs. Full term.
My grandmother lost her virginity and got pregnant with my mother.
I should mention my grandmother is a triple Capricorn.
She’s obsessed with success.
And my mother ruined it by even being conceived.
She lorded over my mother as her own personal scapegoat.
She annihilated my mom.
She’s cracked mentally. She was recently diagnosed with delusional disorder. She has had PTSD my whole life.
So have I.
Our family has a way of doing that.
Fracturing each other’s psyche.
It hurts us physically, our PTSD.
So. My grandmother has a sick need to control my mother.
And I forgot to mention. But my nana, the one who was bedridden for a year at 9, developed a need to gain attention from sickness. It protected her from abuse at a young age and her personality formed wrong.

At 28 years old my mother got pregnant with my sister.
My grandmother drove her to abortion clinics. Demanding she get one.
Then she kicked her out of the family when she refused.

At 28 she still felt like she was entitled to power over her daughter.
That never changed.
She took my sister and I away.
We needed to be taken away.
But she didn’t do it because of that.
She used us for control and played games with my mother from the get go.
She dangled us in front of my mother our whole lives.
She wasn’t allowed to have friends, or a boyfriend under threat of never getting to see us again.

We saw our mother crack.
Living isolated and hurting.
Watching 4 televisions at one time.
I can’t imagine what she went through.
It’s my worst fear.
One that I don’t think will pass until until my grandmother is gone.
For now. I’m 2000 miles away from her. And so is my mother.
Even children get older.

My mother’s case of AS is our family’s worst so far.
I have known of her disease my whole life, as it was discovered when my mother attempted a natural birth with my sister, but her hips had already achieved total fusion by 28.
I blame my grandmother for that.
I know it’s not totally logical,
But I do.
And even if she isn’t to blame.
She still deserves the blame.
Because even if she didn’t cause it,
She tormented her her whole life while she was experiencing it.

She did the same to me.
This is where I’ll start my story.
Sorry the backstory is long.

I don’t ever remember a time when I didn’t have this spine pain.
I remember it always being there.
Progressively worsening.
I still did cartwheels and stuff
But by 13 I lost the ability to do those really anymore.

Okay. So from the beginning.
Let me start by telling you that I don’t have an official diagnosis.
I am confirmed HLA B27 Positive.
I’m 22. And my symptoms are keeping me from getting to the doctor

I was raised by my nana.
She is the one with Muchausen byproxy.
She took me and used me for attention.
She didn’t watch me.
I was 13 months old when she got me
She had taught me to swallow pills by 2.
She gave me sudafed every night.
It jacked me up
Made me pass out right before school started
Then she’d scream at me as I was having problems waking up.
Then she’d get attention from the fact that I couldn’t wake up for school.
Like I was being a bad kid or something.
I was being drugged.
I woke up nauseous every day
I’d vomit as she screamed at me.
While on the phone.
Talking about what a hypochondriac I am.
Bitch.
She’s a bitch.
But I love her.
She’d dead now
And I’d do anything to bring her back
But I know she’s not healthy for me.
She thrived on that codependence.
Luckily she also taught me what codependence is.
So I can’t be too mad.
But I am.
I am because I had so many medical symptoms as a kid I was mocked for.
Called a hypochondriac for.
They only got worse.
Now she’s gone, I’m alone and the symptoms have gotten the best of me.
They are to great. And there are too many. And I can’t talk about them without crying.
Recently I realized I’ve been dissociating.
I dissociate from my medical symptoms.
Then I forget them once they pass.
I have PTSD from my doctor’s being told I was a hypochondriac.
I was never listened to.
And I slipped through the cracks.
Paperwork is a huge trigger for me from a the new doctors I was dragged to.
I’m agoraphobic.
I feel undeserving to be honest because I don’t have a diagnosis.
But I’ve seen this disease.
And I know it.
I know I have it.
And it sucks
It’s great knowing. Because you don’t feel as crazy. Because you understand it.
It’s also a huge curse knowing that I have it.
Idk if I got my message of my story across.
My childhood swims in my head causing flashbacks anytime I describe my pain.

Just if you take anything from this story.
Please let it be to not let your pain ever make you harden.
Do not let it make you see others pain as invalid.
Do not take your pain out on weaker people than you.
It is better to be weak than to be hard.

And if you see a child like me.
Report it.
Because I was waiting for someone to report it my whole life but I didn’t know what was happening.
I was told I wouldn’t be believed.
I was moved every year
So no one ever caught on.

If you see a child like me.
Please help them.

A.S. Face 1528: Andy Satalich

A.S. Face 1528: Andy Satalich

My story shares many similarities to many others diagnosed with AS. A time that stands out clearly in my memory of when I first felt the symptoms, a significant time lag between onset of symptoms and getting a diagnosis, and a couple missed diagnosis and off target treatments.

So here I am twenty some years later wishing that I had known back then what I know now. I look at people who appear to be perfectly healthy and hope that they don’t take that health for granted. A chronic disease like this can truly turn your world upside down. Physically, mentally, emotionally, psychologically, and spiritually, it can and does affect all aspects of your being.

Fortunately, we live in a time of great discovery and rapid and abundant information flow. Sites like this and other ankylosing spondylitis sites and forums serve as great tools for people experiencing this disease. I know I have learned a lot and been inspired from them.

Andy Satalich

Oregon, United States of America

 

A.S. Face 1508: Marnie Morris-Mitchell

A.S. Face 1508: Marnie Morris-Mitchell

My name is Marnie Morris-Mitchell and I’ve been diagnosed with AS for about 12 years. The first pain I had been when I was in high school and it took 10 years and many many doctors to get diagnosed correctly. I am lucky enough to have a wonderful husband who takes care of me when I need help and we have been married for 12 years. Thank you for this opportunity to share with the world that we all have AS.

A.S. Face 1401: R

A.S. Face 1401: R

A.S. Face 1286: Amie Shaffer-Moreno

A.S. Face 1286: Amie Shaffer-Moreno

Oregon, United States of America

A.S. Face 1278: Ross

A.S. Face 1278: Ross

A.S. Face 1131: Wendy Hamilton

A.S. Face 1131: Wendy Hamilton

Hello my name is Wendy and I live in Portland Oregon. I was diagnosed 14 years ago when I was 22 with ankylosing spondylitis. I was scared because I had never heard of it. I had pains in my spine and knew something was wrong besides just a sore back. My spine felt like it was almost scraping when I would bend. My Rheumatologist put me on pain pills and methotrexate. I had a hard time giving myself shots in the leg…. so I stopped. I dealt with it for about 2 years with nothing and it got worse. I went back in and I had began to progress with every year that went by. I used to be a 8 to 10 mile extreme trail hiker about 1 time a week and short hikes daily hikes daily on insane terrain. I fought to keep doing it but had to slow down… then stop all together. I used to run 5 to 10 miles a day… I was very upset when all this was stripped away from me.
After all these years I am and have been in very intensive physical therapy 3 times a week and on pain pills, gabepentin and a muscle relaxer. Nothing works. Nothing. I try to do anything I can now but it just keeps getting worse. It now has affected my shoulders, hips, SI joints and my left knee and ankle.
I am a fighter with this. You have to be with this condition. I don’t let it run my life, I work around it. I stay as active as I can with walks and now going to join a gym to start using the machines, hot tub and heated pool. The last 2 of those will be my favorite lol. I won’t give up. If you give up, you’re giving away your life to this disease, and yourself. I make sure I get out everyday! You have to keep moving even tho it is hard sometimes.
I am soooo happy I found people with AS. I have made some friends on another Facebook page about AS and it’s nice to talk to people who know what you’re going through. I am a face…. One that won’t give up. If you would like to keep in contact… I am on Facebook.  Just look up Wendy Elsey. It will say Hamilton next to it (maiden name was Elsey). I would love to keep in contact. Thank you for having this page to help people. Very cool.  
Oregon, United States of America

A.S. Face 0998: Linda Fenton-Mendenhall

A.S. Face 0998: Linda Fenton-Mendenhall

My name is Linda Fenton-Mendenhall and I am 49 years old. My husband and I live on the north coast of Oregon. I was diagnosed with Ankylosing Spondylitis in 1992, at the age of 28.  The first indication that something may have been wrong, was at the age of six or seven when I had severe leg pain after running. The pain would stop me in my tracks. My memories are very clear of hobbling around and dealing with the effects of sharp stabbing pains in my upper leg. Although my complaints were taken seriously, it was assumed to be growing pains. I understand completely that in the late 1960′s it would have been next to impossible to determine what was wrong.
Somehow, my symptoms eased for most of my teens and early twenties. I was very active in school and seemed to function without any problems.  Fast forward to age 24…  while practicing a dance routine for an upcoming performance, I landed on my right leg and was convinced that I had broken my hip. Although the pain was the worst I had ever experienced, it finally eased up enough to walk.  I treated it like a sports injury and eventually it improved. At that time, I had no idea what inflammation felt like or why my hip joint had the feeling of being stabbed with a red hot poker. From that incident on, the same sensation became more frequent. I began limping and favoring the leg with the most pain until my muscle visibly reduced in size.
The pain seemed to increase with stress, over exertion, weather changes, sitting for long periods and sitting on hard surfaces. Since I wasn’t a big fan of going to the doctor at that time, I dealt with it as much as I could with Tylenol. It barely touched it. The breaking point was one day  I froze like a statue, unable to move and pain radiating from my hip, down the back of my leg. I couldn’t walk forward, couldn’t sit down….just frozen in pain.  My husband carried me to the car and straight to the emergency room.  X-rays showed no broken bones, so I was given some pills and sent home. The next stop was a Physician that did take notice of my shrinking muscle but only prescribed pain pills.  It didn’t take too long to realize that this was not something that was going to heal itself.  So, back to another doctor and then another. I was finally referred to a muscle specialist, who ordered a biopsy, suspecting that it was a muscle disease.  Of course the test came back fine and we moved on to yet another doctor.  My symptoms at this point had spread to all of my ribs, tailbone and both hips.  I had electrodes put on my legs to see if my nerves were the problem, along with countless other “maybe’s”. One doctor pulled my husband into the next room and asked him if I tend to make things up or exaggerate. He informed him that It was quite the opposite and we left, disgusted. Needless to say, we were beyond frustrated at this point.  I think I stopped counting after about twelve doctors.
Finally, after four years of revolving doors, I was referred to a Rheumatologist.  I named off every symptom and what life was like living with this unpredictable, painful and often scary problem.  He listened carefully and said, “I’m fairly certain that I know what’s wrong with you and a blood test will confirm it.”  He couldn’t believe that a blood test had not been done up to this point.  By the end of the day, it was discovered that I was HLA-b27  positive for the gene carrying AS.  This nightmare now had a name,…….Ankylosing Spondylitis. I studied it thoroughly after that day and found that I had many textbook symptoms.  The biggest roadblock to getting the diagnosis was that it occurs mostly in men. Years went by without proper treatment and bone damage was done in the process.  More education and less stereotyping would have saved me from an unnecessary surgery and several years of un-controlled pain.
After trying countless prescriptions, I have found one that seems to work for me. Fortunately, my AS is managed with only anti-inflammatory pills and no pain pills. The symptoms still flare up and new ones like; blurry vision, eye pain and inflammation have been added to the list. For the most part, it is manageable and was much worse in my 20′s and 30′s. I refused to let it slow me down and until I retired two years ago, I worked every day on my feet for more than twenty years ( most days in high heels ).  I will continue to fight it every step of the way.
I have lived with this disease now for 24 years. Most friends and many relatives are unaware that I have it.  This is mostly because I don’t want to be defined by it.  It’s something I have but it’s not what I am.  I decided to take part in this project to bring awareness to AS, so that hopefully, someone in the future won’t have to go through this long process of getting a proper diagnosis. I recently watched my Dad head down a similar road, in attempt to get a doctor to recognize that his symptoms were possibly AS related.  Knowing the hereditary factors involved, doctors still hesitated to consider the possibility.   It is now confirmed that he does indeed have it,  along with my brother.
I can only hope that all those with AS can find ways to cope and get the support they need.
Sincerely, Linda
Oregon, United States of America

A.S. Face 0972: Carrie Andrews

A.S. Face 0972: Carrie Andrews

At the ripe old age of 38, I was a mom, a teacher, a sister, a mother, and a friend. I loved everything about teaching.  It was something that came naturally to me.  It didn’t matter if it was a corporate training session for new computer systems, trade school speech classes, or online math courses.  I loved it so much, that it wasn’t unusual for me to work 60+ hours a week. Walking away from all of that was the hardest thing I’ve had to do in my life.  2008 was the year I could no longer keep up with the life I’d created for myself.
Let’s start at the beginning. I was one of those kids that got sick all of the time.  If someone on the other side of the room had a cough, I’d have bronchitis within a week.  Their sore throats would be my strep throat. I have been sick most of my life.  It didn’t get better when I got older. My twenties were spent fighting an uphill battle against Ulcerative Colitis.  In 2003, I lost that battle, and had to make peace with losing my colon at age 33. The problem didn’t end there. I woke up from a colectomy to unbelievable sciatic pain.  The nurses and doctors chalked it up to going through a dozen hours of major surgery.
It took 3 years and 3 doctors to finally diagnose the A.S.  I didn’t know what it was, or the impact it would have on the rest of my life.  We started the treatment roller coaster right away.  NSAIDS, Methotrexate, Sulfasalazine, Pain Clinics, Massage, Acupuncture, Acupressure, Stretching, and Exercising – nothing brought any long-term relief.  Unfortunately, it looked like I’d have the same struggles that I had with Colitis – no remission.
In 2007, I found what I thought would be the miracle drug; HUMIRA!  By month 4, I was feeling fantastic!  I was walking without a cane or walker for the first time in a long time.  I had energy at work, and was ready to proclaim VICTORY! Unfortunately, the celebration was short lived.  One side-effect of wonder biologic drugs is a sketchy immune system.  By mid-2008, I had a nasty case of pneumonia. I stopped Humira, and focused on working while fighting this lung infection.  Three rounds of antibiotics, and it was still there.  Breathing became more difficult, and my energy waned.
September rolled around, and I was still was unable to shake the pneumonia.  The doctor suggested I take a break from work and focus full time on getting my health back on track. It took 6 months more to shake the infection.  By then, all of the Humira was out of my system, and the disease had been ravaging my body.  Joints were fusing, and connective tissue swelling.  Some of my organ walls were thickening and hardening.  It was becoming clear that the disease was not going to be slowed in the short term.  The doctor suggested permanent disability, and I grudgingly agreed.
Since then, I’ve struggled with iritis, uveitis, costocondritis, and many other lesser known issues that come along with active AS.  Not working has afforded me the ability to take each day as it comes.  I’m no longer pushing so hard.  I don’t get sick as often, but I still have a sensitive immune system.  The disease has progressed further than I ever thought it could, but I refuse to give up. On good days, I volunteer and blog (http://musingsfromthebubble.wordpress.com/).  On challenging days, I give my body time to rest.
I know in my heart that I will one day see a remission!
Oregon, United States of America

A.S. Face 0949: Felecia Campbell

A.S. Face 0949: Felecia Campbell

My name is Felecia Campbell – but most folks call me Fee. I am a young gal in Portland, Oregon, with a prehistoric soul that compliments my old bones. I am living with Ankylosing Spondylitis and its many friends – the various disorders and syndromes that come hand in hand with it. My roster of medical conditions is quite overwhelming for anyone who has never experienced chronic illness. I have always been a fighter though – even before my conception.
My mother was told by her doctors that she would never be physically able to have children but I still made it through to this side – she calls me her “magic egg.” When I was born it was determined that I would need rehabilitation for my legs. My feet were born a bit backwards and it was promised that it would greatly impact my ability to walk, but wouldn’t you know it… the magic egg grew to become a ballerina! It is so strange for me to reflect on all of this now because the irony of my strength really came full circle. My initial symptoms of AS began in a dance studio. Movements that were once so familiar to me suddenly became lost with my growing pain and fatigue. I wound up having to quit my dance lessons. Little did I know at the time that I would be leaving my passion for dance only to begin creating my own music for others to dance to. To this day I am so grateful for the opportunity I had to dance and celebrate my body. I have a clear memory of my ballet instructor once bragging to our group of performers about the flexibility I carried in my spine – what a sap this memory turns me into. My practices and postures that ballet taught to me largely slowed down the progression of my bone fusion. Full circle.
I am lucky enough that I had tremendous support when my diagnosis began, both from family and friends. I also picked up a guitar at a crucial age and that quickly became my greatest comfort. I grew up with a mama who had her own illnesses to cope with, so I learned early on from her that chronic illness does not have to take over your productivity or relationships, just so long as you can take good care of yourself and learn to comfortably ask for help when you need it – this is arguably the most difficult factor of being forever sick. The first specialist I saw about my symptoms was an arrogant doctor who stated that I would “grow out of it.” That put a damper on my whole willingness-to-seek-treatment adventure. When I was 14 years old, I began having issues with my eyes. I was at the optometrist’s office once a week being treated for eye inflammation. It became obvious after a while that my symptoms would not go away and that was a clue to my bigger problem. The eye doctor sent me to a rheumatology office where the real diagnosis began. Oh hi, Ankylosing Spondylitis. My name is Felecia and we are going to become very close companions.
I came of age putting steroids into my eyes several times a day while taking copious amounts of medications – including injecting myself with drugs they give to cancer patients and going to the infusion clinic every 6 weeks. Between my medical routines, physical therapy, and regular doctor appointments, my mental health suffered significantly. When I became too sick to go to school, I found a way to graduate early. I started going to college but had a hard time keeping up with the physical aspect of school. Haunted by the prognosis of my disease and how many years I would be able-bodied enough to work, I quit school and became a working class gal. If you are wondering how difficult it was to grow into an adult while facing my mortality every single day, it wasn’t easy. The most brutal impact of my illness was watching my family and close friends cope with it too. Ten years after my diagnosis began, I can still state honestly that it’s the hardest part of living with AS.
In 2008 I found an amazing therapist who specializes in chronic degenerative illnesses. She has saved my life in many ways and I consider her to have been my most precious treatment. I also discovered the Spondylitis Association of America during this time. The organization put a video up on their website of me talking about my experience with the disease and a song I wrote about growing up with it. Because of this, I began to get contacted by other AS patients and developed some true friendships. All of a sudden I wasn’t alone anymore. A miracle. That same year I started a musical project called Felecia and the Dinosaur which still exists and continues to feed my prehistoric soul. The first album I released was called “Music Infusion,” which referred to a personal cure that only Spondies and their loved ones would understand. While my body was broken, my voice never was. I could be lying in a hospital bed, dying and singing my head off, and I would still be perfectly OK. Even with AS, I get to perform and tour often. I have also released 3 official albums in my career – all of which I consider to be my babies. Music and its timeless rhythms, melodies, and energy will always be my preferred medicine.
In recent years I have experienced remission and I’ve also gone through incredibly long and painful flare ups. I have managed to sustain employment and do work that is very dear to me. I have consistently worked part-time and I recently experienced a legal battle with a former employer over FMLA issues. Since that time I have really brushed up on ADA laws and how I am protected because of them. Having to prove my disability to others has been fairly dehumanizing but I am learning how to become my own strongest advocate. At the moment I work at a peer-run mental health program where I get to share my own experiences with mental illness with others and promote wellness to its fullest degree. I truly love my job.
I am a survivor of the medical industry. Ankylosing Spondylitis has affected my eyes, spine, hips, ribs, lungs, shoulders, knees, neck, GI tract, stomach, skin, circulation, sinuses, muscular system, and my ever growing tolerance for pain and debt. It has also prepared me for other diagnosable illnesses – I live with a daunting neurological disease, endometriousis, and the previous said mental illness. Some days I don’t feel so tough but the truth of the matter is, I am an AS warrior and so are 2.7 million other people. My family tree has shed branches due to this illness and yet it still remains standing tall.
In case you were wondering… Yes, I am still a dancing magic egg.
Thanks for reading,
Felecia
( check out my music here: www.feleciaandthedinosaur.com )         Good Friday By Fee and the Dinosaur
Oregon, United States of America

A.S. Face 0786: Michelle Letney

A.S. Face 0786: Michelle Letney

Hello, I am a 34 year old single mother of two.  I started having back pain many years ago.  I went to many doctors, who always brushed me off.  I went through many years of physical therapy with no diagnosis.  In September of 2012 I went and saw my primary again.  She came into the exam room, and without even an examination, she said to me “there is nothing wrong with you, you are too young.”  I told her that is why I was there.  My body felt like I was 90 and I knew that wasn’t right.  Again she tried to blow me off to a pain management doctor.  I told her that I didn’t want to cover up my symptoms with pain pills, I wanted someone to believe me.  I asked her if she thought my pain was all in my head,  She touched my arm with her index finger and said, “that doesn’t hurt me, but it might hurt you.”  I was enraged, “that doesn’t hurt!” I exclaimed.  There is something wrong with me.  I am inflamed, I cannot bend down to empty the dishwasher or put clothes in the dryer.  I would have my 10 and 11 year old children pick things up off the floor for me because I could not reach.  After a days worth of work, I had to go straight to bed.  It was not all in my head.
The doctor finally said in snotty voice, “Ill check your inflammation markers, if they come back normal then you’re fine.”  A couple days later I received a call that my inflammation markers were elevated and she would refer me to a rheumatologist and a physiotherapist. After multiple testing and MRI’s I received the worst news of my life.  It was Tuesday after Thanksgiving of 2012, 5:30pm, the rheumatologist called me and said “please don’t get excited, your results were abnormal, but we don’t believe it is arthritis, we believe you have cancer, multiple myeloma, in every vertebrae of your spine, I can no longer see you and an oncologist will call you next week to schedule an appointment.” I was shocked.  I cried.  I thought all these years I’ve told them I hurt.  All these years they told me it was all in my head.  If they would have believed me, maybe I would have a fighting chance.  All this time wasted.  Maybe it is so progressed they can now do nothing for me. Am I going to die?  Who will care for my kids?  Do I quit my job?  Do I pay my mortgage payment?  Who is going to care for me in my last minutes?
I made an appointment with my primary again.  I balled in the office.  I said they think I have multiple myeloma, a non-curable cancer in every vertebrae of my spine.  My primary cried with me.  I could see how bad she felt for telling me there was nothing wrong with me.  She asked me why I lost 30 pounds in 11 weeks.  I told her I never wanted a doctor to tell me my back hurt because I was 30 pounds over weight.  She said she would have never done that.  I looked at her and said “have you ever told a patient her knee hurt because she was over weight?”  She lowered her head, and softly said yes.  That day my doctor filled me up on pain meds, anti depressants, and anxiety pills.  She told me to speak to an attorney right away and make arrangements for my kids for the day I pass.  I was in such shock, my life was flashing before my eyes.  I would leave my kids motherless.  They would have nothing but memories.
I took this attached picture in hopes they would have the memory I always wanted them to have.  I wanted to take it before I perhaps lost all my hair.  I wanted to take it before I looked sick.  I wanted to take it so they would remember me forever.  This picture was taken December 2012.
It took a while to get into the Oncologist, as my insurance has to get a pre-authorization for everything.  When I saw the doctor, he gave me so much hope.  He said I looked healthy, and most multiple myeloma patients look “sick.”  He wanted a bone marrow biopsy right away.  However, again, we had to wait another week because of insurance pre-authorization.  These pre-authorizations were driving me nuts!!  I wanted to know now my fate and start planning for my children’s futures!!  Finally after the biopsy, I had to wait another week for the results!
“No Cancer cells located in your bone marrow!”  I was free I didn’t have cancer.  My kids would have a mother!  I have never been so grateful for anything in my life.  The Oncologist again referred me back to the rheumatologist, who diagnosed me with Ankylosing Spondylitis in January 2013.  He stated he had never seen an MRI like mine and he was sorry for the scare.  People say I should be angry, I should sue.  I say, people make mistakes and I am so happy the doctors were wrong.  I feel blessed to have AS.  I know it is something I will battle the rest of my life, but I also know this is a battle I can win!
Michelle Letney
Oregon, United States of America

A.S. Face 0737: Jessica Collins

A.S. Face 0737: Jessica Collins

My name is Jessica Collins. I live in Bend, Oregon. I am 22 years old and although I didn’t receive my diagnosis until I was 19,I have had AS since I was 8 years old. At times I struggle but it is up to me to maintain my quality of life and mobility. I am proud to become a face of AS and hope to continue the spread of awareness for this disease.
Oregon, United States of America

A.S. Face 0622: Brooke Cross

A.S. Face 0622: Brooke Cross

My name is Brooke Cross. I am 32 years old and I live in Gresham Oregon, a suburb of Portland. I have been married for 9 years and have a daughter Lily who will be 8 in October and a daughter Vivian who will be 6 in December. I have been diagnosed with Ankylosing Spondylitis for almost 6 years. My AS symptoms started becoming a serious and frequent problem in 2003, a few months before I got married.I went to several doctors but was told nothing was wrong, so I just lived with it. I remember some nights having to sleep part of the night in my living room floor with my legs up on the couch because it I couldn’t get comfortable enough to stay asleep in the bed. In August of 2003 I got married and also started a new job in the loan center at a bank. My husband and I decided to have a baby right away and by January 2004 I was pregnant. My symptoms improved during my pregnancy and I I forgot about the symptoms because I assumed they were gone for good. On October 21 2004 my daughter Lily was born. The pain in my hips and back slowly returned and became worse than ever. I also started to experience bouts of extreme fatigue. I continued to see my primary care doctor on a regular basis, and I went to 2 other doctors during that time to see if they could find the problem. By August 2005 my pc doctor decided that I was a hypochondriac and he told me that since nothing was wrong he would prescribe 30 Vicodin and 30 Flexerall a month and he only wanted to see me yearly because coming in once or twice a month was wasting my time and his. I stopped seeing my pc doctor in January 2006 because he had decided he would not running tests, or sending me to specialists to identify my problem because he said it was not possible that he missed anything. In April 2006 I found out I was pregnant again. Once again my symptoms disappeared, so quickly and completely I again thought the problem had resolved on it’s own. My daughter Vivian was born December 1 2006. Within 2 weeks I was in worse pain than ever before. I finally became desperate enough to try one more doctor. I went to the local urgent care because the doctor there had an excellent reputation. I gave him a list of my symptoms, and a short history of occurrence and what other doctors had told me. Then I mentioned almost as an afterthought that my symptoms disappearing during both my pregnancies and came back worse than before right after the girls were born. As soon as I told him about the pregnancies he stopped me and said “I believe you have an autoimmune disease causing your immune system to attack your joints, women very often have no symptoms during pregnancy and that combined with other symptoms points to RA or AS.” He explained that during pregnancy a woman’s immune system has to become suppressed so that her body won’t reject a pregnancy and that when that happened it also stopped attacking my joints. He referred me to Dr Lee who I started seeing in March 2007, he already had copies of my x-rays and blood work from the urgent care doctor. He told me that Ankylosing Spondylitis usually takes several years of watching degeneration on x-rays and tracking symptoms to diagnose, but that even though he rarely did so, he was giving me a diagnosis of AS on my first visit. I was started on Remicade, but after 5 months of no result he stopped it. By October of 2007 I had been declared permanently disabled by the social security department, and had been forced to quit my job and was receiving social security disability benefits.
Since then I have been on several biological meds. A few have worked , but sometimes I have had to turn to narcotic and non-narcotic pain killers.
AS is painful. Sometimes almost unbearable. There have been periods when I struggled to walk to the bathroom, didn’t sleep for days because of pain and when I have felt hopeless in misery. But the pain ended up not being the worst thing AS did to me.
I was relieved to finally have a diagnosis. Until this point every medical issue I’d ever had had been resolved quickly and completely with medication or surgery. I had learned to deal with pain by remembering it was only temporary, and keeping an eye on the light at the end of the tunnel. I naively assumed that AS would be a short term problem once I was diagnosed and on Remicade. I basically put my life on hold to be resumed when I “felt better”. I told myself and my family that I expected to be better soon, I pretended to feel ok when I didn’t.  But I didn’t get better. It took a long time to face that, and even longer to see that I was wasting my life waiting.
I constantly told myself:  I will organize my house when I “feel better”. I will decorate my house like I want for holidays when I “feel better”. I will be a better friend and go out more when I”feel better”. I will cook more for my family when I”feel better”. I will start taking better care of myself when I”feel better”. I will deal with stressful situations when I”feel better”. I will do more things with my kids and husband when I”feel better”. I will have more patience when I “feel better”.
I slowly noticed that the result of being on “hold” waiting to “feel better” was no longer being present with my family or friends. I was exhausted just trying to “getting through” the day so I could get to the next day I had to “get through”. I couldn’t enjoy holidays, birthdays or even snuggling with my babies. I numbed myself in my mind to avoid pain and sadness, but I sacrificed happiness in order to do it. It was like taking a nap on a plane so you don’t get bored and the flight seems shorter. I was passing time, not enjoying it. I want to give my kids many happy moments that become memories they carry forever. I believe that if I am not actively participating with them in those moments then their memories will not be everything they can be. If I am not there in my mind, it’s like I wasn’t with them at all. It’s ok if sometimes I can’t. I have to remind myself not every moment needs to be memorable neither is every memory made from the big, bright moments. I trust myself to feel when a moment is special and I know I will come through when I need to.
I have to remind myself often to embrace life even through pain.
Oregon United States of America

A.S. Face 0544: Erin McDermott

A.S. Face 0544: Erin McDermott

My AS Story

My name is Erin McDermott and I am currently 33, living in Oregon and a single mother of an amazing daughter who will soon be 14. I will start my story with what I have gone through medically and end with the effects of AS emotionally and my current standings, as I am considered to be early into the disease.
My story began in 2008 with severe bowel problems that they were sure was chron’s disease but the inflammation found was not severe enough to make the diagnosis although I had all the horrible symptoms. Including the development of 2 fistulas which essentially were two spare holes releasing infection from my bowel. Without the confirmation of Chrons, my primary care Dr. at the time then wrote me off. Since it wasn’t Chron’s disease it had to all be in my head. Although,  blood work was still showing something was wrong & severe pain persisted. At my next appointment he told me he would never write another prescription for pain medication & if I asked, he would have me admitted to an in-patient treatment center as I was causing all of my own problems. At the time I was taking only 2 vicoden a day, boy if he could see me now! I actually would love to see him & show him how wrong HE was!! Needless to say, I found another Dr. After over a year they were able to control the bowel problems through meds but I continued to have an aching lower back that started part way through the bowel problems and was only growing worse.
With my bowel under control the gastro Dr. had to refer me to the pain clinic to figure out what was causing the back pain and how to help it. At this time my Aunt, a massage therapist, repeatedly told me it was my SI joints causing the pain. Once I had made it through the psychiatrist who determined I wasn’t nuts and had real pain I had my first appointment. MRI’s & xrays followed showing the beginning of degeneration and inflammation through the lumbar & hips but no note of the SI joints yet. It also showed 2 tumors in my spine, a synovial cyst & Tarlov tumor. The synovial cyst was a result of the inflammation and the other was small & too dangerous to touch and most likely not a source of pain at the time.
While under the care of the Pain Dr., who is amazing, and promised she wouldn’t stop until I felt better, I went through many pain procedures to try to aid the pain. She described it all as peeling an onion, we had to take one step at a time so as not to do anything unnecessary and to ensure we were getting at all the issues as I had multiple.
First we started with physical therapy which never amounted to much work out due to the increase in pain every time we did. So my typical visit was a half hour of massage and a half hour on a TENS unit. Not seeing results she moved forward with steroid injections into both sides of my lumbar from L2-S1. After a couple weeks it was obvious it didn’t work & even that day with my lumbar numb I still had severe pain, in what I would later learn was my SI joints. Next was a de-nervation procedure of the lumbar which burned the nerve endings coming out of the facet joints on each side from L2-S1. This procedure was pure hell!! You are awake to ensure they are zapping the right nerves so first they dig probes around until the hit the nerve, then turn up low level electricity to make muscles thump to confirm further they have the correct nerve, then a bit higher to make the nerves tingle & zing, once all are confirmed they turn it up high enough to burn & you endure hellish pain for the longest 60 seconds of your life! But, not just once, on each side and on each nerve level!! After 4 days in bed recovering from swollen, sore & bruised muscles & two weeks later, once the nerve endings had died, I finally had relief in my lumbar spine from the extreme nerve pain. But I still had persistent pain in my butt & sides of the lumbar area.
After getting through that, the pain in my SI joints was only getting worse by the week & my ability to walk, sit & stand was getting worse & worse. I went back in & we tried the injections twice and de-nervation of the SI joints. Neither did a thing! At this time it was nearing the end of 2010 & my pain was through the roof and my mobility was next to nothing. Finally, she had the discussion about seeing an orthopedic spine surgeon to see if he could help with the SI joints. But, she strongly advised against any surgery as your body can reject the metal 5-10 years later and you are again in a lot of pain. My response was “if I can have 5-10 years of walking & more mobility rather than sitting in a wheel chair now, I am going to do it.” It was a far better outlook that what was in front of me at the time.
In February of 2011 I saw the surgeon and he was the first to mention Ankylosing Spondylitis (AS). Anky-what??? I would shove that diagnosis aside for awhile and not even look to see what it was. He actually looked at a CT scan from years earlier & saw the beginning of bone spurs forming in my SI joints, which after xrays, they were now full of them and causing the pain. He told me with as many that were there and how big they were my SI joints would eventually fuse on their own but the pain would only increase first and it could take another year or more for it to fuse & get better. Oh, hell no!, was my first thought. There was no way I could survive this pain let alone it getting worse for another year or more. So he then talked about fusing the joints and that it would definitely help me but not be a perfect surgery. I would still have flares, if I over did it I would know and I would have limitations but should be able to control the pain far better and walk with MUCH less pain. I was on board right then & there and cried hearing someone could help me!!
Both sides needed fused so I had the worst side done first in April 2011 and returned to work after a 3 month recovery. At that time I had hoped to wait until the following April for my next surgery but a month in I knew I couldn’t wait that long. Having to wait 6months between surgery, I had my second fusion in October of 2011. The surgeries have been a success. Certainly not perfect and still painful at times but the pain in the joints is nothing as it was!
I ignored the words Ankylosing Spondylitis as long as possible but as other areas of my body became effected, I had further symptoms, the surgeon referred me on to a Rheumatologist to talk about it. That night I went home and researched and found with my blood work, symptoms, and bilateral involvement of the SI joints made it a 99% chance of having the disease. As I read about the disease it scared me horribly! In December 2011 I saw the rheumatologist and he said it is likely to be AS but I am in the early stages so for now it is best to work through it with current meds and await what symptoms would follow. My dad had other symptoms such as psoriasis and he anticipated I would see other joints become effected and the onset of psoriasis. And with the only real treatment being the immune suppressants, it was best not to start them yet due to side effects and being so early into the disease.
It is now almost August of 2012 & so much of my body has changed. I have no flexion in my spine other than at the level of my shoulder blades. Bending backwards now only occurs at the shoulder blades. I can not sit for more than 20 minutes due to pain in my butt, standing is limited to about 10 minutes and walking is very painful in the hips and low butt, often causing spasms. I have developed psoriasis & arthritis in my feet. Thankfully, My current primary care Dr. is also amazing. He specializes in internal medicine and has worked very hard to help me with a med plan to keep me off of the immune suppressants. Although the immune suppressant meds can help with pain, inflammation and slow the disease there are so many scary side effects. The one that makes me say no is that it can activate certain cancer cells if they are in your body. My family, both father and mother’s sides, are full of cancer victims and patients and with my child, I can’t take that risk right now. Maybe when she is an adult and on her own I will but now, I can’t risk leaving her too soon to cancer to avoid pain. I’d much rather hurt and watch her grow into an amazing woman, in pain.
After being so tired of Dr’s and treatments, with my pain increasing severely in early June, I have decided it is time to visit the pain Dr. again and see what my options are. My primary care Dr. is certain I have bursitis in my hips and in the bursa sacs on both sitting bones. We hope injections will help with that pain. My lumbar de-nervation is also wearing off so I will hope to schedule the next one too. I also hope to hear of some other options to help relieve the pain in my back and butt. After these procedures, I will continue with med changes with my primary care Dr. as my blood levels are through the roof and showing the anti-inflammatory aren’t working, although they may after the treatments.
Emotionally and physically I am exhausted due to fighting through the pain every day and for so long. Just as it gets a little better, something happens to throw it off & spike. This disease has already taken so much from my life. I have no social life as I can’t sit or stand for long and with working, I spend my time off recovering so I can hopefully make it to work the next day or on Monday. I often miss one or two days a week of work due to the inability to move and currently have until October to be able to return to work full time again or I will be fired. Every day of work is an exhausting struggle, even with working only 6hrs, I leave in miserable pain, nausea and sweating. My life started with working for the State right after high school and I was pregnant at 18. I have worked so hard to excel and get to where I am with work. After 15 years with the State I have been in the job of my dreams for the past 8 years and fear all my hard work will be gone in a flash, thanks to AS. I am sorry  for not being the mother I want to be. I want to take my daughter on fun adventures but often can’t sit long enough to drive far enough or walk long enough to have an adventure. Of course as a teen, she loves shopping, but I can’t go for long due to the pain. I rely on my mom to help with cleaning the house and my neighbors mow my yard. Doing laundry will flare my pain for three days. Cooking dinner is painful & no longer any fun.  Getting ready every morning is a painful, sweaty process and I have to rest when done to move any further. I must walk to keep from getting too stiff but it hurts so bad. I’m not as stiff after but my back and butt are in spasm, every time. I am single and wonder, why would anyone want to date or love me in this condition? I don’t know that anyone ever will. Good thing I don’t mind being alone! In October I will face either working or applying for disability. At 33, how can I possibly be looking into disability?? Why can an 80yr old blow past me walking down the street? Why can’t I control this pain? Why do some people still think I can control this, or I just want meds, or I can’t possibly hurt that bad, I should be able to work I am only 33. They think it isn’t real or isn’t that bad. I sure wish they were right and I could control it all and live as I used to!! I know not to pray for that as it will never happen but I do pray that those who doubt me will find understanding and compassion rather than disbelief and not care.
Last week I did further research on the progression of AS. I found I am following the path of progression almost to a T.  I also found a medical document that said with a SED rate over 30 (mine is 37 & has been for years), loss of spinal mobility within the first few years & bowel disease, it increases my mortality rate.. What does that mean? Feeling so bad now, I can only question how bad this will get. I am angry, scared and at a loss. Thankfully, I have a supporting family and good friends but, I know they tire hearing that I feel like crap every day and I can’t ever say I feel great or am great, cause I am not and I can’t pretend anymore. I also have found support groups on Facebook who’s members help get you through the toughest of days. They all get it, they all really understand and know what you mean and how you really feel with words as simple as “having a horrible day and hurt like heck”. I am fortunate to have a diagnosis earlier than many others. I hope I am in a generation that will be living when they find a healthier treatment or cure. If not, I hope my struggles find a better treatment or cure for the next. AS is a life long disease and not an answer I ever thought I would get for the reason for all of my problems and pain. My fight goes in waves but I must say had I not fought to get here, I would have no diagnosis and may not be alive. It took weeding through many doctors and being persistent that there had to be help out there for me, somewhere or somehow. Without being persistent I would not have a diagnosis & not know where or how to get help.
My message to those who may hear they have AS one day or don’t feel good and know something is wrong, don’t stop fighting for answers. Only we know our bodies & when something is really wrong. Dr’s are human, they can be wrong and they may not know, so move on and find another. You can get help and you can get answers but sometimes we have to fight a lot harder than others to get it. Once you have an answer it may not be a happy one, it’s scary and you will fear the unknown and what the future holds. But life is important and we live once so make the best of every day and do what makes you happy, no matter how small. It’s ok to be down, sad, depressed and cry but, you can’t stay there! You have to bounce back & fight for a better day. Also, with the support groups, you don’t ever have to fight alone. You have many who will support you and see you through!! We fight this together & will always fight for each other and the future!!!
Oregon United States of America

A.S. Face 0522: Kati Kauffman

A.S. Face 0522: Kati Kauffman

Kati Kauffman -30 years old
Oregon United States of America