A.S. Face 1564: Pixie Bruner
I’m Pixie Bruner. I have Ankylosing Spondylitis. I am more than a diagnosis, I am a person. I am also an artist.
I’ve had auto-immune issues since I was 12 when I became a Type One diabetic. I keep my diabetes under tight control and have worn an insulin pump since 2000.
I was a teenager when my back first started hurting. I was first bass drummer in drum line in high school and hauled a drum half as big as me (I’m 4 feet 11, or rather I was, am shorter now) around daily for years and played double bass so I literally carried an instrument bigger than me to the orchestra pit and played it every morning. The Flexeril began in high school. As did short uses of APAP/codeine when I’d sprain/strain, dislocate something (I also have Ehler-Danlos Syndrome, I’m Type 3 hypermobile. Dx’ed 2008) or when I broke my foot. I was sent to the chiropractor. I had adjustments, but the pain was endurable and as a former gymnast, I knew once I was unable to compete I would hurt. My late mother was concerned but my doctors said it was muscle strain. After my parents died, I was 17 and I’d occasionally go to the chiropractor.
In college, I got Epstein-Barr and was diagnosed with CFS. It was an adequate explanation for my constant pain, which was beginning to take over my life. My posture went to hades in a handbasket. I ran my body down to get my History and English undergraduate degrees keeping a 3.7 GPA and then I married my ex-husband and went to grad school for Classical Studies. Then the pain became my life. He ensured I always had Aleve or Advil but the back pain never ended
The Student health center at UNCG was supportive and got me sports massage and myofascial release therapy. It helped with my migraines. It was some comfort. I did PT, I had “weak back muscles and adhesions”. It was enthesopathy at 26. I persevered.
I moved to Atlanta in 2000. I finally transferred PCP’s in 2004. During my quarterly check up for my diabetes, my PCP finally realized every quarter I had mentioned back pain and joint aches. She ran a ANA panel. It was negative. I had active bursitis again so she referred me to an ortho. I had my medical records sent to the ortho. Dr. Jaffe was a great ortho and realized I had something actually medically abnormal, early onset OA, joint issues, and with my PCP, they declared me as having fibromyalgia as well, a diagnosis I still have and he referred me to the PM&R (physiatrist- a chronic pain specialist) in the practice. That was 2007.
Since then, we looked inside my body to find C-spine damage, C5-C6 spinal cord stenosis, cervical radiculopathy and radiculitis, spondylosis carpal tunnel, which I had surgery for in one hand already, end stage knee OA (large joint involvement means I’ve had this a long time) and various arthropathies incl. the SI joint. I am HLA-B27 negative, but I still have AS. AS often comes with many other autoimmune issues and in 2015, I developed Hashimoto’s Disease and started thyroid replacement. Hypothyroidism and hyperthyroidism also cause pain. I am not fusing own my spine yet, but I am making bone in all the wrong places.
I have severe enthesitis and have to have injections in the fibrotic parts of my back muscles and ligaments to break the literal knots up and flush muscle waste from the areas of pain. It’s like having the jagged glass along my bones smashed. I’m a spondy spoonie. There is no cure yet so my care is palliative. I require pain management and take Baclofen for the agonizing muscle spasms. I wear supportive ankle braces to keep my ankles from from rolling.
My constant pain, limitations, medical expenses this illness cost me a marriage that had become unhealthy for me mentally and I made the heart-wrenching decision to have joint-custody and allow my son to live year-round with his father who is health and able-bodied and still resents me being unable to clean the floorboards and do it all with AS and a young child at the time. My now tween son is happy and healthy and I made the right choice. I did the right thing for me. I spent a year in deep depression and I recovered. I became active in the local astronomy club as a volunteer and made a decision to try dating again at 37. It was a good thing as I met a wonderful man a year after my divorce who loves me as I am and whom I love just as much.
I am now 43 years old. I am a composer and music producer and DJ an electronic dance music radio show that is broadcast online from Berlin Germany and have done guest sets for AH.FM, Global Trance. and more. I’ve produced records played by Paul Van Dyk, Paul Oakenfold and many others and been on the Beatport Trance and Breaks charts twice now. I save my spoons to do DJ’ing live gigs for audiences, sharing my spoons with them, giving to them, to give them joy and happiness and we dance, and I spend my other sleepness nights creating new beautiful music that affirms life and love. Music eases the pain and I get to do it everyday with my wonderful husband of what will be six years in February 2016.
I have Ankylosing Spondylitis, My body is a cage, but sometimes I can fly free from it. I have purpose, ambition, love, my brain is awesome, and life is sometimes breathtakingly beautiful. I am not my condition. I’m Pixie of Memory Splice.
Georgia, United States of America