I am a spoonie. I know you are probably thinking, “What the heck is a spoonie?” and before we go any further I will assure you I do not have some strange obsession with spoons. A spoonie is someone who has a chronic illness or disability, they measure their daily tasks in spoons. You are allotted a certain amount each day and each task you accomplish takes away a certain amount. Essentially like a battery being drained of energy. This theory was the brain child of Christine Miserandino, and frankly it is totally on point.
I have S curve scoliosis. I know when you hear scoliosis you think, oh my friends sister had that and she is just fine. Well I am very happy for her but mine is a severe case. It affects my every movement. I am in pain every moment of everyday, from a minimal amount to hysterical tear inducing pain. It affects my breathing, my ribs, my ability to walk or be mobile, my hips, my back, my neck, it causes headaches (daily), numbness and tingling in my hands and feet, nerve pain in my legs and arms, knee and joint pain, and severe exhaustion. My PCP has preemptively diagnosed me with fibromyalgia and I am soon going to be tested for dystonia.
I am 30 years old. I have been in and out of doctors offices since I was born. I was born with 2 VSD’s, these are holes in my heart. I saw a cardiologist until I was 18 and they were assured I was okay. I started having severe migraines at the age of 7 and had my first MRI then as well. They found my scoliosis at age 10. I was diagnosed bi polar depressive at age 27.
I have tried everything so far short of major spinal surgery for my scoliosis with no relief and it has only gotten worse. I have tried bracing, physical therapy, massage, and seeing a chiropractor. Medications don’t touch my pain, I still take them with hopefulness but they just don’t work. Heating pads, rest, not being active, pain relief creams, etc help to mask the pain for a bit but it is a never ending battle.
I am starting to actively search for a plan for the rest of my life in reference to my spine, my body, my pain. I have a neurology appointment in December and new scans coming up soon. I want help, I am tried of the daily pain I have been fighting for most of my life. So that brings us to the reason for this blog and me sharing all of the above with you. I deal with this everyday and have for almost 20 years, if even one thing I say can help someone or allow someone to realize they are not alone then I will be happy. I plan to share my life on here, the good, the bad, the pain, the doctors, the experience of being a spoonie.