My Life In Pain (TL;DR version)

by Janet Jay

Who am I? Where do I come from, what have I been through, and why did I start this blog? I tried writing it out and it’s a damn novel. So I’m going to see how bullet points work out to get through it all.

  • Started getting dizzy at 14: nobody could figure out why
  • Hurt my neck playing soccer and hurt my neck wakeboarding, but walked away from each
  • Horrible tension headaches when I was 15
  • Mom took me to her chiropractor, who over-adjusted me and sent my whole back into spasm
  • I’ve been in constant pain since that day
  • Started going to doctor after doctor
  • Nobody had any idea what was wrong
  • “You’re too young to be in this much pain”
  • Kept going to doctors
  • Got depressed
  • Did PT that made pain worse
  • Did therapy that made depression worse
  • Started grasping at straws; tried one “alternative” or “complimentary” treatment after another. Went to special doctors, special hospitals (Johns Hopkins, Scottish Rite Hospital for Children), still no diagnosis
  • “You’re too young to be on pain meds”
  • Did (water-based) PT that helped
  • Went to college at Carnegie Mellon in Pittsburgh
  • The head of Pain Medicine at UPMC had no idea what was wrong either
  • Moved to Knoxville, Tennessee in the middle of the opioid panic
  • Learned to jump through hoops like a pro
  • Moved to Austin, Texas
  • Kept jumping through hoops
  • Got worse
  • Got worse
  • Got worse
  • Finally, in my early 30s, something showed up on a scan: a bulging disc was rubbing against a nerve
  • Doctor brought up the idea of an implantable spinal stimulator
  • Became a cyborg; it helped some but not as much as I wish it did
  • My L5-S1 herniated and I ended up in the ER, screaming
  • Emergency laminectomy
  • For months I couldn’t climb the stairs to get to my bedroom or pick something up off the floor
  • Got back to my normal crappy baseline, more or less
  • Landed an amazing part-time job doing communications work for the U.S. Pain Foundation
  • Switched pain meds from a lot of Schedule 1 stuff to Belbuca, a buprenorphine medication that’s schedule 3
  • Dropped from a constant 7-8 to maybe a 5-6 on the pain scale
  • Decided to start a blog

And here we are! I’ve now spent the majority of my life in physical pain and have spent 20 years learning to talk the doctor talk and walk the medical walk. Stay tuned to this space for all the doctor tips and tricks I’ve spent most of my life discovering, and some of the feels and fears I’ve uncovered as well.

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