The last few days have been the worst days I've had in a long time. I was very hopeful and positive that I was getting better until this whole infection. I had an MRI on Monday and they couldn't finish it because my head felt weird when they turned in on so I ended up having another CT scan. The CT scan showed that the infection had spread and the whole device had to come out. Tuesday morning, they took it out. I am devastated. My hand is already curled in and my feet have already been acting up on me. I just don't know what to do, I am back at square one and just want to go back to FL with Ryan. I was so looking forward to going back there and being better. When the infection is gone I am going back there and when we move back I will have the DBS put back in. There is only one problem. My surgeon is moving and will be working in NY so I will have to go there to have it put back in and I'm not sure if my insurance will work there. I am so upset but hopefully in the near future things will get better.
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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