The story of Tayarra
I was diagnosed with Neuromyelitis Optica 03/12/2019. It’s been one crazy journey.
I remember going to the GP, hardly being able to walk & trying to lift my legs to walk, but they felt like they weren’t there… I remember my sister picking me up after my appointment & taking me to the car, so I could go to the ED for a suspected MS relapse…
Getting to the ED & being rushed in (With an MS attack we need to get on top of it ASAP) & seeing the advanced trainee and him saying that he thinks my MS has progressed into my spinal cord & that my immunosuppressive medication that I was on wasn’t working at all..
Then having to wait for about three days before I could get my MRI results because someone gave me a new MRN number & they had to link them together to get my last results…
The waiting I think was the hardest because during this time I became a quadriplegic. This was hugely due to the fact that they have to wait until the results come in, so they can start the required treatments.
Then the advanced trainee, immunology & another neurologist (due to mine being at another hospital that day) came in & told me that I still have MS, but I now have NMO. They said that my quadriplegia actually was from the NMO affecting nearly my entire cervical spinal cord. When they showed me the images of it, it was lit up like a Christmas tree.
I was in the hospital for an entire month trying to get used to the life of being a quadriplegic. It was hard to say the least. There was diarrhoea explosions. Catheter changes. Nurses doing everything for me. Me feeling like I was hopeless for a while. I couldn’t furniture surf anymore. But the advanced trainee, family & my friends made it a bit easier. This life is not glamorous. But thankfully I learned to live with it.