On Tuesday I had a CT scan to rule out a blood clot in my brain because I have been having very bad headaches and dizziness. There was no blood clot but there is swelling in there. The doctors think the infection could have spread into the stimulator. In cases like these, they usually remove the whole device. I REALLY don't want them to do that. Not only would I be upset because it has been helping me but I was planning on going back to FL the beginning of July and I really don't want to have another surgery. They are waiting until Monday to do an MRI and go from there. They said if I get any worse over the weekend I need to go to the ER but hopefully that won't happen. Ryan's coming home tomorrow, my cousin is getting married Saturday and my nephews birthday party is Sunday! This weekend is a bad weekend to spend in the hospital!!
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...
Sorry, Mand.
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