Portland

AS and I have had been buddies since 1967 after a bout of pneumonia. My SI joints fused by 1970 and then over time I developed widespread peripheral joint involvement. I was diagnosed with inflammatory arthritis in 1980, and it wasn’t until 1984 that I was correctly diagnosed with AS. My long history with this disease means I’ve taken NSAIDs in the past that are no longer approved for humans! I’ve been on many regimens of medications during the years and also have had varying degrees of success with diet changes (vegetarian and gluten-free), meditation, acupuncture, herbal meds, etc. Some of these were helpful for me and I continue to use them; some not. My AS symptoms were largely controlled with various NSAIDs and DMARDs until 1999 when I also started using Biologics. NSAIDs ultimately lacerated my gut in 2007 after a few decades of use and had to discontinue them. I applied for SS Disability and was granted a total disability in 2007. Nowadays, I take Remicade, Methotrexate, very low-dose opioids and SNRIs. I left the workplace at age 55 (2007) after many years struggling with the fatigue and pain that go hand in hand with this disease.

I was employed as an electrical engineer during my professional career. I consider myself fortunate to have worked in a relatively non-physical job. Since my early disability/retirement, I have volunteered my engineering and educational abilities to various groups in small spurts when my health has allowed. It helps me cope when I can offer my skills to others.

Probably the most useful AS management method I have found is to engage in some activity that allows me to temporarily “forget” I have AS. These activities have changed over the years as I’ve given up some of my youthful hobbies. Currently, I design/make little model steam engines, tinker, work on house projects as I can and play music. I’ve always enjoyed playing music and I dropped it for many years as I couldn’t hold up a flute, or hang a saxophone from my neck. I designed and made a bari-sax playing-stand so I could play without torso support. Making music is probably the best activity I’ve found to ignore pain and I now play in a couple of local big bands. After numerous surgeries for “after-market body parts” and adjusting meds for disease management, I feel like the disease is at a plateau for me – which is a good place to be.

And, humor is critical for me; I laugh and try not to take myself or others too seriously.  As people join this group, it is important to remember that we are all at different stages of our disease and we all have things we can learn from each other. I feel that my role in the AS group is to help remind each other not to beat ourselves up about the fact that we have a disease we can’t control — it’s not your fault, so you might as well be kind to yourself!

About the group: This group is a safe space for people living with SpA and their loved ones to share experiences without judgment and receive support from others who know what it’s like. When we check in or have roundtable discussions, it’s fine to share a little, a lot, or just listen. Some meetings may include guest speakers on topics of interest to the SpA community. If you have any questions, please feel free to contact me at spondypdx@gmail.com.