It took 10 years for me to get diagnosed. When reflecting on my story and journey, I think the most challenging part was the road it took to get a diagnosis of ankylosing spondylitis. Spreading awareness of axial SpA (AS) is so important to me because why should anyone have to suffer for long?
My Journey of axial SpA to Present Day
As an occupational therapist, I knew there was something wrong when I was not only having severe pain in my hands/joints but when I started to lose my hand strength, dexterity, and range of motion in one of my fingers. Out of the blue, in 2018, one of my joints in my hands swelled up and after being referred to an orthopedic hand surgeon, the only autoimmune disease that was brought up was rheumatoid arthritis but was dismissed. I was told I could try to see a rheumatologist, but it was unlikely one would see me because I was ‘healthy.’ Over the years, I suffered from chronic back pain with periods of joint pain in my hands, hips, knees. My chronic back pain was often linked to being overweight. After suffering for a few years, I lost 40 pounds, as if expecting a miracle, I thought my back pain would go away, but it did not.
I would still have periods of severe back pain that it was impossible to even bend over at the sink to brush my teeth. A year later, in 2019 I got hit with a flare so bad that I could barely walk.
In 2019, I finally got a comprehensive blood panel, which showed I was HLA-B27 positive and got referred to a rheumatologist. What helped me was I had discovered a family history of ankylosing spondylitis. As a precaution due family genetics, the doctor ordered x-ray’s but expressed how they would most likely not show anything. To the doctor’s surprise, they found something on my x-ray’s and quickly ordered for me to get an MRI. What the MRI revealed was that I have had periods of inflammation for quite some time and my right sacroiliac joint had started to deteriorate.
Coping with the Diagnosis
At first, I would say there was some type of relief that I finally had a diagnosis and was not imagining all these symptoms that had been bothering me for a decade. Immediately after the relief, fear set in, what did this mean for me for the rest of my life? Something extremely disappointing is that there is not much research done around AS and women.
Having so many questions and not having all the answers you want can be frightening.
Finding a doctor that specializes in axial SpA and one that I trusted and worked well with was key. Having a doctor who truly understands axial SpA and always strives for their patients to achieve optimal results has truly allowed me to be on a journey to recovery instead of settling for what I think I can live with.
Due to the progression of my axial SpA, I was immediately started on biologics. This was a decision that I did not take lightly and was incredibly hard for me to accept. After sitting down with my doctor and looking at the MRI, there was no denying the results on my body with axial SpA going untreated and I was even more afraid of the damage that would incur if it continued to go untreated.
Ever since starting biologics, I can easily say that it was the best decision for myself, I got my life back. After suffering with chronic pain for so many years, I forgot what I was supposed to feel like. The change was indescribable, and I am truly grateful for modern science.
The Journey to Healing Mentally & Physically
Since my diagnosis in 2019, I have found ways to cope with my AS and will say that overall, it has made me a healthier version of myself. I was always a health-conscious person and exercised but after my diagnosis is when I really started to take it to the next level. I carefully curate my weekly meals, which involve hours of meal prepping on the weekends and truly being selective of what I put into my body. I really got the chance to tune into my body and see what foods made me feel worse or better. Using my love of cooking has been so helpful to modify recipes and ingredients. But of course, I still indulge myself, in moderation of course!
I have also set up a rigorous fitness routine that encompasses not only strength and endurance but flexibility and mindfulness. Before I got diagnosed with axial SpA, all I knew was that when I was moving my body was not hurting me, which motivated me to work out so much. But now, I can truly say I enjoy working out and having a true purpose to what I am doing.
With axial SpA, it is so important to maintain spinal flexibility, so that motivated me to incorporate yoga into my weekly fitness routine.
Being an Occupational Therapist with axial SpA
As an occupational therapist, I am constantly doing task analysis’, which comprises of me breaking down each step (of any activity) into much smaller steps. Breaking these tasks to smaller ones helps the therapist to find the breakdown that is affecting completing these tasks and coming up with a solution so that they can successfully participate in daily activities. These solutions work not only by modifying a task, but by curating exercise programs to work on strengthening and finding specific movements to carry out these tasks.
I am lucky to have this skill and can modify my own daily occupations. I constantly use my knowledge and experience as an occupational therapist to modify activities of daily living (and at 29 years old I sit in a chair everyday to put on my pants and socks to conserve and deal with morning stiffness in my back). I have learned through my profession and life that you can do almost anything you set your mind too, there are always hundreds of ways to complete a task and finding what works best for you and your body is key.
In Conclusion
This is a journey that is new to me and it will have many chapters in the upcoming years. This is an ongoing battle and with anything else, I have my good days when I feel invincible and then there are days that the pain sneaks back up to remind me that it still exists. What I can take away from my experience so far with axial SpA, is that it has made me incredibly resilient in all areas of my life.
I am choosing to persevere and live my life to the fullest and try to do everything that I enjoy. There is not a day that I take for granted and I will continue to do what I truly love: spending time with friends and family, cooking, working out and traveling the world.
This blog was written by Diana, who you can follow on her Instagram
