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We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project.
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By Alan Beaulieu
Thursday, August 03, 2017
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. However, we must not just give up. Even though we have our daily struggles and pain, we must not give in to them. 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 raise awareness of what AS is and what it does to the bodies of those who 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 a Military Working Dog Handler. I have worked with both drug and bomb detecting 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 am 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 AS story 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 didn’t really think anything of it; I figured it was 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, got out of bed, and when I went to take a step I fell 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 laid 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. 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 jog 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 of 2007. Even though it wasn’t like what I was used to, 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 me 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 had been dealing with this pain for 2 years, with no understanding of what the problem was. No one knew what was going on.
My problems 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 to stabilize my back again. For 4 years I felt pain. 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.
I underwent another round of MRIs. This time they found bulging/herniated discs in my C-spine and L- Spine. I went to two neurologists and to pain management. I was prescribed a whole slew of narcotics and pain medications. None of them provided relief. I underwent an EMG test and the results were “normal.” 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 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. I asked to go to a Rheumatologist. My request was shut down. I was instead sent to mental health for a psychological evaluation. He seriously thought my pain was “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 matters worse I was also told I could no longer work with military working dogs; that the physicality of the job was too much for my 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. 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 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 who suffer it are seen as weak. When I was taken off the road and away from dogs, it allowed me to quietly get help without fear of being judged. 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 along my lower back and in my SI joints (sacroiliitis). 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.
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 gets worse.
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 am worried spondylitis has affected 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. This disease is real; it has the potential to be extremely debilitating; but 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 choosing to look at the disease like a blessing in disguise. Instead of 20 years in the military I am able to get medically retired. I will be able to move back to Michigan and achieve my lifelong 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 Americans 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 to pick them 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 find a way to defeat it.
I am Alan Beaulieu and I have Ankylosing Spondylitis.
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