A.S. Face 1987: Dan Reynolds

A.S. Face 1987: Dan Reynolds

A.S. Face 1066: Melissa Levanduski

A.S. Face 1066: Melissa Levanduski

Spondylitis PLUS: (I just received the Fall 2015 issue of ‪#‎SpondylitisPLUS published by the Spondylitis Association of America which features the photo Tyler Levanduski took of me one day when I was in a lot of pain. (How It Feels pp. 14-15) The magazine contacted me this summer because they had seen it in one of my Ankylosing Spondylitis support groups & asked my permission to use it in a issue dedicated to pain in Spondylitis. I was honored that it would be used to help & encourage others as well as spread awareness.)
My name is Melissa Levanduski. I have Ankylosing Spondylitis, Rheumatoid Arthritis, and Fibromyalgia, along with a slew of other ailments that fall in line under them.
I live in the southeastern United States. I was born in New England on Thanksgiving, November 22, 1973 right during dinner time 4:55 p.m. As you can imagine we are always surrounded by friends and family for my birthday and I am sure to be blessed with some pumpkin pie. My high school sweetheart, who is also my best friend, and I have been married for over 25 years – since July 24, 1993. We have one handsome teenage son who is very sweet, intelligent, and a talented nationally ranked archer who cross trains in Brazilian Jujitsu.
I had always been an active child and was an athlete (runner, softball, basketball, and bicycling) and model all the way up through my upper 20’s. I was also active in SCUBA until I became pregnant with my son at 27. I had a very rough pregnancy and delivery, nearly losing my son at five months when I became violently ill and again during delivery because my pelvis was unexpectedly fused so he couldn’t engage or pass through. My bladder also pinched off his umbilical cord. Thank heavens for an emergency caesarean section. After the birth of my son I struggled with abdominal pain and back pain. I had numerous issues: adhesions, endometriosis, adenomyosis, and fibroid tumors. I saw my family physician, gynecologist, as well as a chiropractor seeking relief. After another 7 years of pain, physical therapy, and minor surgery my gynecologist/surgeon, husband and I agreed to a hysterectomy after I refused a chemically induced menopause. That relieved most of my abdominal pain but the back pain continued to get worse. I became more fatigued and depressed. During that time I had a hard time getting my general practitioner to believe me regarding my pain. He implied it was all in my head and that I just needed to be more active. I tried, I really did. I gained a lot of weight even though I stayed active. I cut down my daily caloric intake to the point that my body went into starvation mode and refused to burn calories. I was eating under 800 calories a day, walking anywhere from 30-90 minutes a day, working a full time job, working in the yard, cleaning our home, and tending to my family. I now have also sleep apnea and chronic athesmatic bronchitis. Shortly I was misdiagnosed as bi-polar and manic depressive then put on heavy-duty medications that made it difficult to even function because they made me feel like a space cadet. I knew deep in me that although I did feel depressed that it was something more, something different. After a few more years with increasing pain that became so excruciating that at one point I couldn’t get out of bed because the muscles in my back were spasming so intensely and my hips were constantly hurting. My son was so worried he was calling 911 to help me.
I visited my hometown chiropractor, who I saw regularly in my early 20’s, on a trip to New England to visit family. He said he was confident that I had fibromyalgia and something else serious going on in my back and nerves. He told me to demand that my general practitioner refer me to a rheumatologist. Feeling hopeful because someone finally believed me, I did just that. When I saw my rheumatologist I was floored to have a doctor who listened to everything I had to say, reviewed all the paperwork regarding my family history, about recent tendon and ligament issues, easily broken bones which I had never had before, and the slew of medical issues. He took his time. He examined me and diagnosed me with fibromyalgia. After further talk and questions he said he felt fairly confident that he knew what was going on so he sent me for blood work and x-rays to start. At my next visit he informed me that I was HLA-B27 positive, that I have developed Scoliosis, Sacroiliitis, my pelvis is fused and that I have Ankylosing Spondylitis. As heartbreaking as it felt to learn what I had and what my future would look like as this is an incurable disease to which we can only manage the symptoms and the pain, I felt a huge load lifted off of me because someone believed me, I felt relieved that I really had something going on and it was not all in my head like I had been told by others and that most of my health issues could all be lumped under the diagnosis of Ankylosing Spondylitis.
My Ankylosing Spondylitis is progressing fairly quickly causing additional fusing of my intercostal muscles so  I have lost lung expansion along with inflammation and pain in my neck, back, SI joints, wrists, hands, knees, ankles, and feet. I am also having issues with a low red blood cell count/anemia, low hemoglobin levels, and high liver enzymes.
I pray for relief and remission so I can be more active again. I know I will never be able to run again but I would love to get my athletic body back again, be able to do more without pain with my family, and not be so fatigued and in so much pain all the time. I see my rheumatologist and I get regular blood work ever 8 weeks.
My “baby” sister was tested after I was and she too was diagnosed positive with HLA-B27 and with Ankylosing Spondylitis. It hurts to know my sister shares the same fate.
My biggest fear and heartache by far though comes from being told that because I have an autoimmune disease as does my husband (psoriasis/psoriatic arthritis) that our son has a 75% chance of having an autoimmune disease. I pray fervently that he does not inherit an autoimmune disease from us. He has his own struggles due to a congenital birth defect of having one defective kidney. He has renal dysplasia, kidney hypoplasia, along with hypoglycemia as well as a rapid heartbeat. He also had a traumatic, life-threatening accident when he was four years old that he survived. I believe God has special plans for him and I pray for a hedge of protection around him.

Update: My son was tested for HLA-B27 and, thankfully, it came back negative.
Florida, United States of America

A.S. Face 0593: Lisa Russouw

A.S. Face 0593: Lisa Russouw

My story with Ankylosing Spondylitis began when I was a teenager, but I didn’t know anything was wrong. I was the youngest of 5 children and my Dad had stiffness in his spine and had to wear a support girdle for many years he couldn’t turn his neck around very well but as a young child, I thought my Dad ( he was 50 when I was born) was just getting older and had arthritis. He was tired a lot, said his eyes were sensitive, but didn’t complain of pain. He worked as a pharmacist for 44 years. I remember how he had to lift his leg to tie his shoes because he couldn’t bend over, and how he would get in and out of our car in strange ways it was only after he died when he was 80 that I started to have alarming symptoms that demanded a diagnosis. Now I know what he had and what, unfortunately he passed on to me.
When I was 13 my right wrist would get an annoying painful kink and I would wrap it to support it. I thought it was growing pains. It came and went. I thought nothing of it. The next episode with symptoms that I can recall was in college where I majored in physical education. My days were spent swimming, playing basketball, gymnastics, running, volleyball, and just about anything else that was active. I taught aerobics at a local gym and was never still. My knees started to bother me to the point where I went to a specialist who said I needed a surgery to repair ligaments. I decided I wouldn’t go to those extreme measures and let it slide. The pain and inflammation came and went so again, I thought nothing of it. In general I wasn’t as flexible as other student were. I did take notice of that.
When I went into teaching I wore high heels all day. In my 20′s I noticed that my back would ache, but it was the heels surely, so I wasn’t concerned. It wasn’t pain that lasted either.
Jump ahead another 16 years married and pregnant with my third child. In the second trimester my eye started to become very painful sensitive to light and blood-red. My doctor rushed me to an eye specialist who told me that I had “systematic arthritis.” He asked if my parents had gnarled fingers and were in wheelchairs. No. The only pain I had occasionally was in my knees. Thus began the anti inflammatory medications to save my eye sight. I had several attacks in my eye while pregnant. After my son was born, I started to experience a kink in my right SI joint. I thought I could work it out with exercise. But it wouldn’t go away. It turned to pain deep penetrating pain that was to the core of the bone and stubborn! I went to emergency I didn’t have a family doctor- doctor after doctor said it was just a bad back and I was to rest and take muscle relaxants and advil. To make a long story short, it wasn’t until my sister told me that our Dad was diagnosed with something called Marie Strumple disease that I was able to tell the doctors that maybe there was a connection. But I still went undiagnosed properly for 5 years. One night I went to a clinic with intense pain and the doctor I saw said I needed a regular family doctor asap and ordered tests for the gene that determines AS. Other doctors toyed with the idea but said it was an expensive test and so they chose not to test me. How nice! It wasn’t a week later that I got the phone call telling me I tested positive.
I had no idea what this meant really. I was scared, confused and angry. What was this unwelcomed, uninivited intruder hurting my body?!
The next part of my journey was pityful. I remember sitting in a wheelchair in emergency at 39 years of age watching 90 year old men and women walk past me thinking- what the heck? I was crushed. I didn’t know what my future would look like anymore. For two weeks I couldn’t walk or barely move. My spouse had to carry me to the toilet and bathtub, I was on three different meds at once, my days were full of crying, prayers, friends who came with meals, no answers, just pain….and dreaded muscle spasms even with deep breaths. My three children were young and their Mommy couldn’t move. It made me very sad. BUT…
At some point, I stood up straight on the inside and I got angry. I went off the prescription meds. I started to make myself move and I took every step with determination not to let this disease win. I did everything- changed diet, underwent sessions of prayer with many people, I started to jog on the treadmill through the pain. I didn’t care. I spoke to the pain like it was a robber who illegally came to take my life and I told it I was going to tell it what to do- not the other way around. I knew I sounded like I had lost it, but I didn’t- I was aggressively responding to this in the only way that worked for me. I had a choice- I could lay down and let my life become all about AS or I could get up and LIVE! One day I said out loud “A.S. … YOU PICKED THE WRONG PERSON!”  and things progressed onward and upward from there. I began to understand that I could not let this thing have my spirit and soul and that I could control certain things for my body to reduce the pain in healthy ways.
I didn’t get any more eye inflammation, or inflammation in my sterum which I suffered from for two years.. I thought I was having heart attacks. Today- SI joint pain continues and I have pain in my knees and hips. I eat well and take supplements. The Master Cleans has helped me tremendously. I recently began taking Arthrotec. I work and live a pretty normal life.
It’s been 8 years since the diagnosis. On that day AS was diagnosed with ME! and I won’t back down ( pardon the pun) I walk well. I’m happy. Pain is a daily part of my life, but I minimize it’s importance and I maximize hope, faith and other parts of my life that are wonderful! I’m not afraid. I’m not weak. I’m not less of a person or live less of a life because of AS.
Saint John New Brunswick Canada
Spondylitis Plus Winter 2012

A.S. Face 0580: Jennifer Aiello

A.S. Face 0580: Jennifer Aiello

My name is Jennifer Aiello. I live in Maryville Tennessee. I was diagnosed with AS in April 2012. Today I am 47 years old and was in pain beginning in my teenage years. With many doctors and many missed diagnosed theories, it was a case of iritis that set the wheels in motion to do other test. Finally a rheumatologist listen to me and took necessary steps to treat me. I have been on sulfasalazine and humira since April 2012 and on May 14th, I woke up for the first time pain free! I continue to stretch and stay active. But can’t help feeling deprived of many things for many years due to pain. Live on, starting now!
Jennifer Aiello
Tennessee United States of America
Spondylitis Plus Winter 2012

A.S. Face 0365: Jennifer Dye Visscher a.k.a. Jenna

A.S. Face 0365: Jennifer Dye Visscher a.k.a. Jenna

Hi everyone, my name is Jenna and I have Ankylosing Spondylitis. My story is similar to so many but I’ve had a very difficult time trying to figure out how to put it down on paper. I think my Mom did a really great job summing up the years of looking for answers. She was able to write what I’ve not been able to. Please visit my blog *The Feeding Edge  and see my journey through her eyes.  I hope you take a moment to read it because seeing my story through the eyes of my mom is the only way I can share it with you all just yet. I need time still – I want to tell the whole story.

My story includes the reason Cookie has saved face number 365 for me. For those of you who don’t know about the Apples… I created one piece of art of an apple every day for an entire year and never once missed a day. That may seem like a silly thing to do and in fact a little crazy but it was what I needed to do as me, Jennifer Visscher. I created each and every one of them as a way to talk about Spondylitis and raise awareness. Below is one of my favorite apples – it shows many people, words, and projects in our community. It pulls us together in one piece. I created this apple on February 12, 2011 or, Day 135. Our community of advocate groups has grown so much this last year so there are some words and groups missing. I’d like to create a new one for Cookie and for Faces of AS. Please let us know what needs to be in our AS Calligram Apple – let’s tell the story together. Sincerely, Jennifer Dye Visscher a.k.a Jenna
See my journey through her eyes – http://thefeedingedge.com/?p=3494
The Feeding Edge – http://thefeedingedge.com

Colorado United States of America

A.S. Face 0113: Tyler Hyder

A.S. Face 0113: Tyler Hyder

The working life of a hospital nurse can be extremely busy, stressful and complex. Making life or death decisions goes part and parcel with a caring heart and gentle touch. I thrived on it. Caring for a patient was my calling. Along came AS and that chapter in my life closed forever.
I was 32, a mother of two daughters, ages 5 and 3 years. My husband, daughters and I had just moved from our lives on the farm to a city; I had a new job and we knew absolutely no one in town. Needless to say, there was no support system on which we could rely. My diagnosis came relatively quickly, but hearing the news shocked me into denial. The issues that led me to seek medical attention got worse instead of better. Every morning I awoke with low back pain. Getting out of bed was excruciating because my heels were so painful that standing on them made me want to cry. In fact, there were many mornings when I did just that.
Originally I thought the heel pain was from a stone bruise, as I was nearly always barefoot at home. I reasoned that the persistent low back pain was due to lifting heavy patients or bending over a patient’s bed to perform wound care or other nursing task. After a period of about six months with no improvements in either the back or heel pain I began to think there was something else wrong. In addition to the pain, I felt exhausted all the time, but easily dismissed that as a hectic work schedule and the challenges of having recently moved.
I remember the day I went to see the doctor. He was an internist; one of the physicians with whom I had become acquainted at the hospital. After asking numerous questions and completing an exam, he said he felt he knew what was going on with me, but wanted to get an x-ray of my sacroiliac joints and draw some blood for testing. Once the x-ray was completed, I was directed back into the exam room. Within moments the doctor arrived, a radiograph in hand. He said, “Mrs. Hyder, I am quite certain I know what is happening. I believe you have a condition known as ankylosing spondylitis.” That moment was the first time I had ever heard those two words. For the next few seconds my mind was flooded with questions. I felt scared and alone, relieved that I had a diagnosis, yet perplexed as to why this happened to me. I wouldn’t be able to answer that particular question for almost 15 years.
Throughout the next few months I was prescribed a variety of medications. Some didn’t work, others made me physically ill. Still I continued to work and live the life of any normal woman with a husband and children. Although the pain and exhaustion persisted, I began to deny the fact that I had AS. My husband was having difficulty finding a job in his field of expertise, and money was tight. I began to feel isolated and weary. My girls understood that something was wrong with Mommy, but because they were so young, they could not understand. I didn’t want them to feel as though they had a Mommy that couldn’t measure up, so I redoubled my efforts to make everything appear unchanged. I had always been energetic, with a positive, ebullient nature and to the world, that didn’t change. But inside, I was beginning to fall apart.
Seriously, I don’t know what I would have done without my husband. He was always by my side, ready to do anything he could to help make my life easier and more comfortable. It was he who first introduced the idea that we should consider moving closer to my family so I could have some help and support from them as I tried to get this strange and hurtful disease under control. Feeling as though I could take no more, we made arrangements to uproot our lives once again. We packed our belongings, and our little family journeyed to the Seattle area to be near my family.
The years since then have been filled with highs and lows. The disease continued to progress to the point where I could no longer ignore it and still go on living. It was then that I finally was able to accept AS as part of my life. Having done that, I set out to learn everything I could about the disease. I wanted to have the ability to control AS and not let AS control me. I found a rheumatologist, and we worked on a treatment program, constantly refining it until we found the best plan for me. I was then able to go back to work, but my days as a hospital nurse were over. I could no longer handle being on my feet for 9 or 10 hours a day. So I had to rethink my career, and come up with something I was able to do.
In 1995 I became involved with supporting others with AS. While I no longer felt alone, I knew there were other people who may be feeling that way. I became part of a small group of people involved with forming an online support group for people with AS. Family members were also encouraged to join our group, and since its inception to the present day it is one of the largest and longest running support groups on the Web.
Today, I am no longer able to work full time, but I still maintain my nursing license…just in case. My children are grown; I have three grandchildren. Now I write. And I am still living with AS – a face of Ankylosing Spondylitis — even after all these years.
Redmond, Washington United States of America

A.S. Face 0111: Alan Beaulieu

A.S. Face 0111: Alan Beaulieu

My name is Alan Beaulieu.  I am 29 years old and was just recently, within the past few months, diagnosed with Ankylosing Spondylitis (AS).   My story begins like so many others that suffer from this disease.  It involves pain, stiffness, fatigue, frustration and feeling hopeless.  AS is a complicated disease, there are not a lot of “specialists” that have a lot of answers; without answers there are not a lot of options for relief.  However, we must not just give up.  Even though we have our daily struggles and pain, we must not give in to it.  We must do whatever is in our power to face this disease and defeat it.  I hope in writing my story I can get a lot of my own questions answered, as well as, maybe help those that are unsure of what AS is and what it does to the bodies of those of us that suffer from it.
Background:  I joined the United States Air Force in March 2001 and became a part of the Security Forces career field.  For the first six years I was a regular “Air Force Cop” The last four years, I was fortunate enough to be able to be a Military Working Dog Handler.  I have worked both drug and bomb detector dogs.  It was the best job that I have ever had.  During my time, I have been stationed at Ellsworth AFB, South Dakota, Ramstein AB, Germany and currently at Joint Base Mcguire-Dix-Lakehurst, New Jersey.  During the last ten years I have been deployed 4 times, twice to Iraq.  I have enjoyed my time in the military.  Unfortunately, it is coming to an end.  I am being medically retired due to having AS, 6 bulging/herniated discs, moderate Traumatic Brain Injury and PTSD.  I look forward to “hanging up the boots” and re-starting my life back at home in Michigan.
The Pain and The Journey:  My story of AS starts in spring of 2006.  I had just returned from a 7 month deployment to Kirkuk, Iraq.  During my deployment I noticed some back stiffness but really didn’t think anything of it.  I figured it was just from all the gear and ammunition, little did I know, I was in for one rude awakening.  One morning, while on R&R, I woke up out of bed.  When I went to take a step I feel to the floor.  I had no idea what was going on.  I felt terrible pain in the lower part of my back,  along the spine and debilitating pain on the lower left side and down the left leg.  My entire lower back and left leg felt “seized up”  It felt like it was fused together.  Each step was painful, each movement that involved the left leg or back was excruciating painful.  I limped slowly for the next few months.  No one really had a clue as to what was going on.  When I went to the medical clinic on base the doctors thought my hips were uneven.  They layed me down on the table and my left leg was yanked on twice in an attempt to even out the hips.  Obviously, this made my pain worse.  After several failed chiropractic visits,  I was sent for an MRI.  The results showed a bulging disc in the L4-L5 area of the spine.  After receiving the results of the MRI, I was sent to physical therapy.
Physical therapy was a waste of time. I rolled around the floor on a ball and did a bunch of stretches.  The point was to keep my back straight and my core muscles strong.  They said it would help with the pain.  Notice, I previously said, it was a waste of time.  It didn’t do anything for the pain.  It took months, upon months to start running again.  After a few months, it got easier to walk.  The easier it got to walk the easier it got to job ever so slightly.  When I finally tried running it was horrible.  As soon as I got a few steps my entire lower back and left side would tighten up and eventually seize.  My left leg would go numb and feel like “jello” The more I tried to run through it the worse it seized up before eventually I would hobble around.  I was baffled.  I had no idea what was wrong.  All the medical doctors would do is feed me motrin or naproxen.  They couldn’t understand why I was in so much pain.
I wasn’t able to run until the summer time of 2007. Even then it wasn’t like what I was used to.  I was still slow.  I was still barely passing my physical training tests.  Sit ups and running were painful.    As much as I wanted to say something, the mentality in the military is to “press on.” You don’t show weakness.  If you’re hurt then you better suck it up and keep going.  For the next year, all I did was take naproxen for the pain and do my best on my PT tests.  It got so bad; I had to take 6-8 naproxen just to keep the inflammation down so I could pass my tests.
In August 2008, I was deployed to Baghdad, Iraq.  My bomb sniffing dog, “Cici” went with me.  I was really worried that my back would give out on me during the deployment. I had to do whatever I could to keep my dog and I, in the mission.  I went to the medical tent several times for the back pain.  I spent many nights laying on heating pads and taking NSAIDs and motrin like crazy.  At this point, I have been dealing with this pain along the lower back and left leg for 2 years now.  With no understanding of what the problem is.  No one knew what was going on.
My problem took a turn for the worst in the fall 2010.  The pain was getting more frequent and worse.  The exacerbating episodes lasted longer and longer.  Before, I would hurt for a few months then it would return to normal.  This time it never went away.   This time was like all the others, except it never left.   I was never ever to stabilize my back again.  For 4 years I felt pain.  It would be extremely painful when getting out of bed, off the couch or even off the floor.  It felt as if my back and leg area was fused shut and every movement was forcing it “open again” There were times I would be in tears from the pain.  There were times I had to use a cane just to help me walk.  It was horrible.   In November, 2010 I underwent another round of MRIs.  This time they found bulging/herniated discs in my C-spine (3) and L-Spine (3)   the doctors were still at a loss as to the pain in the lower left part of my back and down my left leg. In Jan 2011, I was sent to physical therapy (yet again) for the fourth time.  Again, it was a waste of time.  I couldn’t run, nor could I walk more than a hundred yards without pain in my back and down the left leg.  In Feb 2011, the physical therapist told me there was nothing more that could be done for me.  She said, “Since your still having the pain and the numbness when you walk or try to run” this is more than just something that I can fix.
I spent the next few months going to two neurologists and pain management.  Both neurologists confirmed I had Degenerative Disc Disease.  Pain management really didn’t do anything for me.  Upon the initial examination the doctor noticed when I sat down; I didn’t have the strength to lift my left leg off of the ground.  It was crazy, It felt like I was paralyzed and had lost all strength and functioning in my left leg.  I was prescribed a whole slew of narcotics and pain medications during these months.  None of them provided relief.  I underwent an EMG test and the results were “normal.”  I was growing more and more frustrated.  I was in so much pain and no one had a clue as to what was going on.
My frustration reached its peak in the spring of 2011.  I was in the office of my former Primary Care Manager.  After all the visits to the specialist he was growing more and more suspicious that I was faking it.  He sent me for a round of blood tests.  About a week later, I was called back in. He looked at my tests and said, “You know I was real skeptical about your pain when you first started coming in.  However, according to your blood tests you have some real issues going on.”   I wanted to scream at him. I wanted to smack him for basically telling me I was lying. However, I could not.  After all, he is a Captain and I was just a Staff Sergeant.  I asked to go to a Rheumatologist.   I pleaded by saying, “there is something wrong and we haven’t tried everything.  What about a rheumatologist?” My request was shut down.  I was instead sent to mental health for a psychological evaluation.  He seriously thought all my pain was just “in my head”  I was at a loss.  I started to feel like I was going crazy.  I began to think, “am I just making this up?”  I knew I wasn’t, but after 5 years, no one had a clue as to what was going on.”  To make matter worse I was also told, “you can no longer work with military working dogs”  The physicality of the job is too much for your health.  I was devastated.  I had been working with bomb/drug dogs for 4 years.  I deployed with a bomb dog who saved mine and others lives.  I was in tears.  It hurt badly.  I was moved to an office job, where I am currently working as I await the results of my medical retirement board.
(on a side note: It is a good thing I was sent for the mental evaluation. I was having problems from my time downrange for a while.  It was then I was finally able to be diagnosed with PTSD and mTBI, so all was not lost in getting sent to mental health.   There is a stigma in the military about PTSD.  Those of us that suffer it are seen as weak.  When I was taken off of the road and away from dogs, it allowed me to quietly get help without fear of being judged and tormented.  It’s not my fault I saw what I saw and experienced what I experienced.  To be judged and viewed as weak by my own brethren was painful.)
When I went to mental health, the LCSW that was working with me noticed my pain.  She noticed i walked with a limp daily.  She noticed I couldn’t sit in a chair for more than 10 minutes without grimacing and having to stand up due to the pain. She asked me what was wrong.  I told her the whole story.  She looked at my blood tests and made a few phone calls.  I was then able to switch to a different Primary Care Manager.  Finally, after 5 years, I had a doctor who gave a damn.  She immediately sent me to a rheumatologist.  The rheumatologist sent me for more blood work and a bone scan.  The blood work showed high levels of C-reactive proteins and I tested positive for HLA-B27.  The bone scan showed high levels of inflammation a long my lower back and in my SI Joints (sacroillitis)  The bone scan was unable to show inflammation in the neck.  I wasn’t able to sit in the machine that long.  I freaked out in MRI and bone scan machines due to my PTSD.  If I feel trapped with nowhere to go, I immediately fear for my life and undergo a panic attack. After listening to my symptoms the rheumatologist finally diagnosed me.  It was ANKYLOSING SPONDYLITIS.  Now, normally people would be devastated upon hearing they have a lifelong debilitating disease.  I was actually relieved.  I was so relieved because I knew I wasn’t crazy.  I knew I wasn’t faking it.  It’s pretty hard to fake 5 years of back pain.
Currently, I am on Humira.  I inject myself every two weeks.  I think I need to go to weekly injections.  For the first couple of days I feel okay.  I don’t have the inflammation in the SI joints and the pain in the left leg. However, my neck is still stiff and my lower back (along the spine) still hurts.  If I try to do any type of physical activity the pain in the neck, back and even the sciatica gets worse.  The only time I feel okay is when I don’t do anything at all.  After a few days, the pain starts coming back on its own.  It’s frustrating.  I fear getting bamboo spine.   Over the last few weeks I have been getting a pain in my chest and I have had shortness of breath for a while now.   I see the rheumy on the 17th.  I am worried the spondylitis has attached to the joints in my rib cage.  If this is indeed true that means my chest is seizing up and my lungs can’t expand like a normal person.  I am 29 years old.  I can’t lift more than 29 lbs, I can’t sit for too long without being in pain.  I can’t bend over very much, nor can I bend to the side.  I can’t turn my neck too much without being in pain. I am on an immune suppressant which leaves me tired all the time.  When I tell people what I have I get the same response, “what is that?”  It’s frustrating.  It’s frustrating to have a disease that impacts my life so severely, yet no one has a clue what it is.
Even though I get frustrated, I am focused.  I won’t let this disease beat me.  I am confident they will find a cure.  I have read numerous articles and even read about how this disease could be caused by bacteria.  Who knows?   All I know is this disease is real. It has the potential to be extremely debilitating.  However, I can’t focus on that. Each day I try to stretch as much as I can. I try to stay active.  It is difficult because I am limited but I do what I can.  I am looking at the disease like a blessing in disguise. Instead of doing 20 years in the military I am able to get medically retired.  I will be able to move back to Michigan and achieve my life long dream of graduating from the University of Michigan.  I also have the assistance of a great service dog named Bella.  She’s a service dog trained to the specification of the American with Disabilities Act.  She is trained to assist me not only with PTSD symptoms but also to “fetch” things off of the ground so I don’t have to bend over at pick it up.  She is a lifesaver.  Once, I get medically retired, I will be able to re-start my life.  I understand what I have. Now I just have to find what I call, a new “normal” I have to learn to live within it and also figure a way to defeat it.
I am Alan Beaulieu and I have Ankylosing Spondylitis!
Joint Base McGuire-Dix-Lakehurst, New Jersey United States of America

A.S. Face 0026: Jeannette Anne Hays

A.S. Face 0026 : Jeannette Anne Hays

As many others with ankylosing spondylitis, I’ve become passionate about helping raise awareness. It’s my hope (our hope) that future generations will receive early diagnosis and treatment before permanent damage is done to the body, less pain, and better yet … a cure.
Four years ago my stress levels greatly increased. It was like an avalanche hit me and my family. In the span of a year I was diagnosed with ankylosing spondylitis, psoriatic arthritis, mixed connective tissue disease, neuropathy, ”awake” seizures, osteoporosis (lost 1 1/2” of height), carpal and cubital tunnel, fibromyalgia and vasculitis. Inflammation affected my entire body, including my vascular system. My blood vessels were bursting which greatly frightened me. My immune system attacked everything including my heart, lungs and kidneys. I lost hearing in one of my ears for about a year, but am very happy to say that I’ve regained most of my hearing.
My story begins at a very early age. I was diagnosed with chronic inflammation of the lungs and allergic asthma when I was only 2 years old. I grew up sick, hospitalized a couple of times a year, so I knew nothing different. The joint pain started when I was around 16, but I remained silent about it as I had learned to hide my illness as much as possible for the sake of being able to participate in the activities I loved. Over the years the pain steadily increased. I made excuses and put it out of my mind as much as possible. I worked and went to college full-time, got my degree in graphic design, and continued to push myself for the future I had planned for my life. I’ve now come to realize that for the most part I lived in the future. Most tasks revolved around a long-term goal. That wasn’t much fun and I was riddled with anxiety about whether or not I was on ”schedule” with that plan. People aren’t trains. We each have a different path to take on this journey. Finding that ever-so-difficult balance between past, present and future is a great feat and a task that never ends.
Life forced me to confront many issues, head-on and quickly. What does one do when they’ve spent their life working hard, focused on the future, and then that near future becomes questionable? Live in the present, and draw strength from the past, with a beautiful glimmer of the future. Once I stopped trying to figure out who I was, or was meant to be, I became who I am. By truly releasing the past and the future, a total surrender, I was able to free myself to live in the moment and love fully.
Why can’t life remain like a calm stream instead of a rapidly flowing river? Consider the way a river beautifully sculpts the earth. Smooth is easy but also monotonous and uniform. Curves and grooves are provocative and thrilling, but can also be dangerous. Challenge brings about strength through humility and truth, and by recognizing faults and refining good qualities. Obstacles and pressures break down false pride and reveal who we truly are.
My favorite color is a unique cobalt blue – a beautiful, distinctive, deep, metallic blue that comes from Raku fired pottery. Raku pottery is fired twice and reaches temperatures around 1800°F. It’s able to endure this type of heat because it’s made from a special type of clay found in Japan that’s capable of withstanding ”thermal shock.” I mention Raku firing because I can’t help but compare that special clay to people put through the fire of life. It’s such an incredibly difficult process, but the result can be something truly extraordinary and beautiful.
At times I have a passionate dislike for character building events in life, but I know in the end they turn out to be worthwhile. How tormenting and paradoxical life can be while one matures. I sometimes find myself possessing a negative outlook on life just to prepare myself for the worst outcome possible … but never without a mustard seed of faith that a mountain might actually move beneath my feet. Pessimism is a way to spare one’s self, but not entirely. Faith is the key to survival. It’s the acceptance of what is, but also the knowledge, hope, and appreciation of something better, no matter how small the improvement. Life’s calamity builds strength for future trials, and with each new tragedy comes a renewed peace and spirit equipped for the next turn of the kaleidoscope of life.

Forth Worth, Texas United States of America

A.S. Face 0001 : Kevin Andrews

A.S. Face 0001 : Kevin Andrews

A life of Ankylosing Spondylitis

I am Kevin I am 57 years old and I live in England my problems started about 50 years ago at a time when even less was known about this Disease and if you had pains they where growing pains or imagination.

Treatment was nothing or pain killers. It took 23 years to get a diagnoses. Exact words from Rheumatologist who gave me diagnosis.

(You have Ankylosing Spondylitis it is a rare disease there is no cure and you will end up in a wheel chair goodbye see you in 6 months).

Well here I am 27 years later bent with severe Kyphosis fully fused spine,constant Iritis, breathing restricted by fused ribs, Chronic Obstructive Pulmery Disease. Insulin dependant Diabetes, IBS and Carpel tunnel syndrome.(But yay no wheel chair)

As you can see from my photos I am a classic case of Ankylosing Spondylitis. Its not a pretty site I know but this is me. I cant change the way I look I used to try and hide it avoid mirrors and shop windows and refuse to have my photo taken but recently realised what’s the point every one else can see me. Hiding from myself is not changing the way I look to other people and is just making me miserable. If I  didn’t have Ankylosing Spondylitis I would not be me as I am now my whole life would have been different. I wouldn’t have my wonderful Daughters and Grandchildren I wouldn’t have met Joanne my very supportive wife. And I wouldn’t have met all the wonderfull friends I have who like me have Ankylosing Spondylitis.

So although AS is a very restrictive painfull disfiguring Disease remember you wouldn’t be the wonderfull people you are without it.

My aim is to make as many members of the public aware and under stand what we go through in our every day lives how we are not different from them we all bleed the same we all love the same just because some of us are bent over or fused bolt upright we are still human. If they want to stare I  will stare back if they want to know more then ask we don’t bite. I have only known one person to stop and ask what I had wrong with me in all my years with AS. Talking is what spreads the word and makes people aware of us and our lives.

Hiding from our selves and our fears does not help us or make others aware. Always remember people with AS are strong in mind if not in body we have to be tough to survive in this world with all our problems always think positive enjoy your life as best you can even with your restrictions you only get one shot at it and most of all remember what we do for recognition of Ankylosing Spondylitis today and in our life time will make all the difference to the new generations of sufferers.

Ok it’s been 21 months since Cookie was inspired to start faces and I am 58 now and feeling 98 but proud to have been a part of this. And proud of the way it has grown I know Cookie felt at times it was never going to get to the 1000 members but we are almost there now so I think it is time for me to do an update on what life has been like for me in this time. I have had ups and downs like we all have some worse than others I have had good times and bad times pain free times and very painful times.

Since my original post I have separated with my wife and I am on my own again she has moved back up to Yorkshire to be near her children. This I understand living with a person with severe AS is not an easy thing to do we’re still friends and we talk most days on face book. I have now moved into a disabled person’s bungalow and have two dogs, fish, and two Geckos for company they keep me occupied and a reason to get up every morning. Now health wise well my Ankylosing spondylitis has continued to progress in the usual way my kyphosis is more severe now and I only have slight movement left in my neck all my vertebra are fully fused from my tail bone to my skull apart from one in my neck which is fusing slowly and it will only be a matter of time before its solid. I have Neuropathy affecting my feet and hands and ostio arthritis is now showing on my x-rays in my hips and feet and hands. I have bone spurs in my shoulders and heels and suffer with planter fasciitis in both feet. I was taking Enbrel the biologic drug but had a reaction with it that caused me to have constant Iritis which caused me to develop fast acting cataracts which I had removed last year. I do still get pain in my iliac joints and spine but only if I overdo it most of my pain now days is in my other joints shoulders , elbows , hands ,knees, hips, feet  and of course Neck . The only drugs I take for my AS are Co-codamol 30/500 4xaday and I’m taking Amitriptyline for my Neuropathy. The Neuropathy is also caused by my Diabetes which I’m still struggling to get under control troll up and down like a yo yo not good I’m taking more insulin now a fast acting injection before meals that helps but still needs to be better. My IBS is about the same good days bad days and very bad days but hey what can you do just carry on as best I can. C.O.P.D got very bad for a while was wheezing and having trouble breathing day and night it could be Fibroses as I get pain across the top of my chest which hurts when I cough. I have a new turbo inhaler which is great the best I’ve ever had really helps. Had an Angiogram done to check my Heart no blockages thankfully I do have thickening of the walls and my heart beat is a bit weak. The Rheumy told me recently my heart is on the large size which is a part of AS and Diabetes so double whammy there do I get extra points. My Depression and my fatigue are not good feel tired and life less a lot of the time from the fatigue I try and keep busy that helps on the day but next day I’m even more tired and weary. My Depression is in a bad place a few months back I got very low and demoralised as some of you probably noticed I wiped my friendship group from faces removed myself from all my groups and just went into shut down mode for several weeks I’m still not in a good place up and down was taken of the antidepressants I was taking because of being put on the Amitriptyline which is an antidepressant I am only taking a low dose because it has bad side effects but think I’m going to have to increase the dose soon or be put on another drug I’m getting every emotional and down . The years of AS and all my other problems are really getting to me now and it’s a fight to stop from going even lower. My Rheumatologist has now told me there is nothing can be done for me except monitor me and help with the pain if I need it so I will just continue to see him every six months and I can ring him direct if I’m having issues I am worried about. I’m sorry this update is not better and more cheerful but thought it was time to do it. And hey I’m still not using a wheel chair lol.

Please feel free to check out my site: A.S.R.A.United Ankylosing Spondylitis Rheumatoid Arthritis  United

Sussex, United Kingdom

Spondylitis Plus Winter 2012