In lue of world AS day (and my new meds that are actually working, YAY!!) I thought I would share my ankylosing spondylitis journey with y’all. So, here it goes…
Part I: Dismissive Pain
In 2012, some time during my senior year of high school, I started experiencing really bad stiffness in my lower back/hips. It was so painful that sometimes my ability to walk, or even stand up, was impaired. The pain only lasted a few days and seemed to return whenever I wore these boots with the heel so worn down, they were basically leaning on a 45 degree angle (bow legged problems). So, initially I attributed the cause of my pain to improper footwear. This was my first mistake. Yeah, I should’ve thrown those shoes out a long time ago, but I also should’ve taken a recurring, damn near debilitating, pain more seriously and saw a doctor.
A primary care doctor tested me for pink eye as well as eye herpes (something you can pretty much only get when you’re in the process of being born, which I was not) then referred me to an eye specialist. After checking my eye pressure (with this medieval torture device that gets all up in your personal cornea space) and taking pictures of my retinas, the opthamologist diagnosed me with uveitis, a form of eye inflammation. If you want to see something scary, google OCT scan of a normal eye versus one with uveitis. When the doctor showed me mine, I almost cried it was so terrifying.
She also informed me that uveitis can be caused by other conditions, including an autoimmune dysfunction. Back to primary care for blood tests! In the meantime, I started taking steroid eye drops to decrease the pressure/inflammation. The fun part about the steroids is that, a few seconds after you take them, you can taste it in the back of your throat. The connection between the eyes, nose, and mouth is all fun and games until you have steroids dripping down the back of your face.
Part III: Pop Pop
My blood work revealed that I was HLA-B27 positive. Huh? Yeah, that’s what I said. Basically I have a protein in my blood that can affect my autoimmune system, causing things like uveitis. After the doctor told me this, I did my googles and found another condition associated with HLA-B27 that sounded familiar. Ankylosing spondylitis, as described by the Spondylitis Association of American, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In more advanced cases this inflammation can lead to ankylosis -- new bone formation in the spine -- causing sections of the spine to fuse in a fixed, immobile position.
This condition was familiar to me because it described my grandfather. For as long as I could remember, Pop Pop’s spine was frozen stiff, the vertebrae fused together so badly that his posture was permanently stooped and he couldn’t move his neck at all. He had a limited range of motion and couldn’t do things like drive, walk long distances without a cane, or get up on his own if he were to fall. I also vaguely remember talks of braces, metal implants, and risky spinal surgeries for him when I was younger. Learning that this condition was associated with HLA-B27 scared me because I had already seen AS at its worst. I didn’t want that to happen to me.
Part IV: Insurance Issues and Medical Incompetence
One day, maybe a year after my HLA-B27 diagnosis, I woke up in so much pain that I couldn’t walk. I couldn’t move my legs enough to even get out of bed and stand, so I rolled out of bed and army crawled to the bathroom. I struggled to pull myself up onto the toilet. Unlike before, the pain in my lower back/hips lasted months instead of days, waxing and waning in intensity. I limped around campus and I think living everyday in discomfort like that increased my irritability, sadness, and general discontent. No one talks about the toll physical pain takes on your mind as well as your body. As someone who already suffers from depression, it’s easy to slip into a dangerous mindset when you’re physically unable to get out of bed on top of being generally disinterested in doing so anyway. Not an ideal combination when you have school and work and other responsibilities.
I made plans to see a doctor but the thing about that is, there’s so much waiting involved. Getting from my uveitis diagnosis to figuring out I was HLA-B27 positive took months. Unfortunately during the time I’d been waiting for appointments, I lost my health insurance. This added a financial burden on top of everything else (I couldn’t even afford my eye steroids anymore). When I finally regained insurance, about three years later, the first doctor I saw told me that I was “too young to have those kinds of problems,” and, despite my symptoms, medical and family history, didn’t test me for AS.
[Enter 6th year undiagnosed and untreated]
Part V: Today and Beyond
A few months ago I was finally able to see a doctor who took my pain seriously. I got an x-ray of my spine that confirmed I have ankylosing spondylitis. I’m still waiting to see a rheumatologist, but I started a new anti-inflamatory medication earlier this week that really seems to be working. I’m trying my best to remain optimistic but, I do fear that this is only the beginning. Not only can my spine get worse but, with an autoimmune disorder, there are so many other things that can go awry, not to mention the potential side effects from theses medications.
As much as I’m afraid of ending up like my grandfather I must admit, he never did let his limited mobility limit him. He was full of joy and laughter and Pop Pop would put on his little kangol hat, grab his cane and be out. He passed away recently and even if I do become completely immobile one day, I think the least I can do is try to live as fully as he did.