Yesterday I went to my doctor to have an ultrasound and check the baby. She is doing wonderful and I got a 3D ultrasound so I could see her little face and button nose. My doctor wanted me to see an infectious disease doctor because my hand is becoming raw. I went there today, which ended up being a waste of time. She told me I need to see a neurologist ASAP! Well.. no kidding. I've been trying to see a neurologist since last May. I found a neurologist here in Florida that takes my insurance and had an appointment and everything... too good to be true. They changed their mind and decided they didn't feel like dealing with a high risk pregnancy, so they won't see me. I guess I'll just wait until my whole body is a spasm.. then I'll worry about it.
Some days its hard to find the words to explain what dystonia feels like. It's invisible to most people, yet it shapes every hour of my day quietly, persistently and often painfully. I don't share this because I want sympathy, I share it because awareness matters and too many people still don't know what dystonia is, let alone how much it can affect someones life. Dystonia affects my hands, feet, back and neck. My hands ache as though they've been gripping something for hours, even when they're resting. My neck strains as if theres a weight hanging from it and no amount of stretching helps. My feet cramp and curl making sonething as simple as standing still feel like a test of endurance. I've grown stronger in ways I never expected. Ive learned patience, determination and resilience. Ive learned to celebrate small victories, like waking up with a little less stiffness or being abke to open a jar of spaghetti sauce. Im sharing this because I want people to under...
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