Tag: hypertrophic cardiomyopathy
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7
I’m 7 years old today. Technically not, of course, but my life started over 7 years ago today. It started with learning to breathe on my own, then rolling over. Then sitting up; crawling; motorized wheelchair; sitting unassisted; standing; walking with 3 people helping me, then one. Then a walker. Then a cane. Then nothing.…
ellie
#DespiteDisability, #LifeIsBeautiful, #NeverGiveUp, ABI, ACA, Achilles International, Achilles International Houston, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, asphyxiation, ataxia, Ataxia & Fitness, bipolar, bipolar II disorder, bradycardia, bradycardic, brain injury, brain stem tremor, brain surgery, Brainstem, brainstem tremor, cardiac arrest, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, depression, diagnosis, disability, GAD, generalized anxiety disorder, handicap, hardship, HCM, hemiparesis, hemiplegia, hypertrophic cardiomyopathy, In Memory, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, life is beautiful, major depressive disorder, MDD, Memorial Hermann Hospital, operation, perspective, pneumonia, Recovery, seizure, social issue, Spinocerebellar Ataxia, stigma, stroke, stroke recovery, TBI, The Stroke Story, TIRR, trauma, Tremor, tremor disorder, visual field cut, young adult stroke, Young stroke, young stroke survivor, YSS -
#sorrynotsorry
Our Father Who art in heaven Seriously? What the actual fuck. Sincerely, Tired-and-so-done-with-being-a-patient/room-number
ellie
#DespiteDisability, #LifeIsBeautiful, #NeverGiveUp, ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, asphyxiation, ataxia, awake brain surgery, bipolar, bipolar disorder, bipolar II disorder, bradycardia, bradycardic, brain injury, brain stem tremor, brain surgery, Brainstem, brainstem stroke, brainstem tremor, cardiac arrest, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, cerebral palsy, Claire Wineland, Cystic fibrosis, D&C, DBS, deep brain stimulation, depression, diagnosis, disability, FA, Friedreich’s Ataxia, GAD, generalized anxiety disorder, handicap, hemiparesis, hemiplegia, human trafficking, hurricane, hurricane Harvey, hypertrophic cardiomyopathy, ICD, implantable cardioverter defibrillator, In Memory, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, LGBTQ, life is beautiful, major depressive disorder, MDD, Medtronic DBS, miscarriage, MRI, neuropsychiatrist, neuropsychiatry, operation, perspective, pneumonia, rape, Recovery, seizure, seizures, sexual abuse, slave trade, slavery, social issue, Spinocerebellar Ataxia, stigma, stroke, stroke recovery, surgery, TBI, The Stroke Story, trauma, Tremor, tremor disorder, visual field cut, young adult stroke, Young stroke, young stroke survivor -
5
I’m 5 years, 2 months and 2 days post-stroke. (Likely 5 years, 2 months and 3 days, by the time I finish writing this. It’s late.) 5 years. 5. That’s half a decade. Oy. 3 months and 4 days since I last updated this site. Sorry about that; I just wanted to step back for…
ellie
#DespiteDisability, #LifeIsBeautiful, #NeverGiveUp, ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, asphyxiation, ataxia, bipolar, bipolar disorder, bipolar II disorder, brain injury, brain stem tremor, brainstem stroke, brainstem tremor, cardiac arrest, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, deep brain stimulation, depression, diagnosis, disability, GAD, generalized anxiety disorder, H-Town, handicap, hemiparesis, hemiplegia, Houston, hypertrophic cardiomyopathy, ICD, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, LGBTQ, life is beautiful, major depressive disorder, MDD, perspective, Recovery, seizure, seizures, social issue, stigma, stroke, stroke recovery, TBI, The Stroke Story, trauma, Tremor, tremor disorder, young adult stroke, Young stroke, young stroke survivor, YSS -
Harvey
Last night I remembered how scared, how alone I’d been during hurricane Harvey. Yeah, I’d busied myself with packing donations. That was before I’d realized I couldn’t get out of the apartment building, or that the atmospheric pressure changes had impacted me as they had. I’m embarrassed to have been so affected when others lived…
ellie
#LifeIsBeautiful, ABI, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, asphyxiation, ataxia, bipolar, bipolar disorder, bipolar II disorder, bradycardia, bradycardic, brain stem tremor, Brainstem, brainstem stroke, brainstem tremor, cardiac arrest, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, depression, diagnosis, disability, GAD, generalized anxiety disorder, H-Town, handicap, hardship, hemiparesis, Houston, hurricane, hurricane Harvey, hypertrophic cardiomyopathy, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, life is beautiful, major depressive disorder, MDD, neuropsychiatry, perspective, Recovery, seizure, seizures, stroke, stroke recovery, The Stroke Story, trauma, Tremor, tremor disorder, West University Place -
Journal entry #4
Tomorrow, I will be cheerful. Tomorrow, I will be positive. Tomorrow, I will have energy. Because today, I just can’t. Today I am hurting. Today, I am not okay. And that is perfectly fine. Just writing that made me smile. See? Already getting there. 🙂
ellie
ABI, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, asphyxiation, ataxia, bipolar, bipolar disorder, bipolar II disorder, bradycardia, bradycardic, brain injury, brain stem tremor, Brainstem, brainstem stroke, brainstem tremor, cardiac arrest, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, cerebral palsy, depression, diagnosis, disability, generalized anxiety disorder, handicap, hardship, hemiparesis, hemiplegia, hypertrophic cardiomyopathy, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, major depressive disorder, MDD, miscarriage, perspective, pneumonia, rape, Recovery, seizure, seizures, sexual abuse, social issue, stigma, stroke, stroke recovery, TBI, The Stroke Story, trauma, Tremor, tremor disorder, young adult stroke, Young stroke, young stroke survivor, YSS -
#LifeIsBeautiful
We have no control over it, but what we do have control over is whether we can be proud of our own lives. I mean, that’s something we have complete say over – it’s kind of hard to even describe – I think I’m just as confused as everyone else on how to make our…
ellie
#LifeIsBeautiful, ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, ataxia, bipolar, bipolar disorder, bipolar II disorder, bradycardia, bradycardic, brain injury, brain surgery, Brainstem, brainstem stroke, brainstem tremor, cardiac arrest, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, cerebral palsy, Claire Wineland, Cystic fibrosis, DBS, deep brain stimulation, depression, diagnosis, disability, FA, Friedreich’s Ataxia, GAD, generalized anxiety disorder, handicap, HandiQueers, hemiparesis, hemiplegia, human trafficking, hypertrophic cardiomyopathy, ICD, implantable cardioverter defibrillator, In Memory, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, LGBTQ, life is beautiful, major depressive disorder, MDD, miscarriage, NAF, National Ataxia Foundation, neuropsychiatry, operation, perspective, pneumonia, pregnancy, rape, Recovery, seizure, seizures, sexual abuse, slave trade, slavery, social issue, Spinocerebellar Ataxia, stigma, stroke, stroke recovery, surgery, TBI, The Stroke Story, trauma, Tremor, tremor disorder, visual field cut, young adult stroke, Young stroke, young stroke survivor, YSS -
Journal entry #7
Have you ever been sitting around, doing whatever, and then suddenly and out of nowhere you feel… different, somehow? Sort of like you’ve been locked in your body for several years and you’ve just woken up, even though you’ve been conscious all those years, you’re suddenly… aware. Alive, again. This might seem odd but something…
ellie
ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, asphyxiation, ataxia, bipolar, bipolar disorder, bipolar II disorder, bradycardia, bradycardic, brain injury, brain stem tremor, Brainstem, brainstem stroke, brainstem tremor, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, cerebral palsy, deep brain stimulation, depression, diagnosis, disability, generalized anxiety disorder, handicap, hemiparesis, hemiplegia, hypertrophic cardiomyopathy, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, major depressive disorder, MDD, neuropsychiatry, perspective, Recovery, seizure, seizures, social issue, stigma, stroke, stroke recovery, TBI, The Stroke Story, trauma, Tremor, tremor disorder, visual field cut, young adult stroke, Young stroke, young stroke survivor, YSS -
Journal entry #6 – neuropathy
Three hours to go before my alarm will shout encouragement at me. I’m exhausted. No matter how exhausted I am, I have to stick with my morning workouts. Hemiparesis and spasticity don’t wait for me to be prepared. They show up, uninvited and unannounced, rudely staying until they decide to leave on a whim. Tiny…
ellie
ABI, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, ataxia, brain injury, brain stem tremor, Brainstem, brainstem stroke, brainstem tremor, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, depression, diagnosis, disability, hemiparesis, hypertrophic cardiomyopathy, ischemic stroke, kinetic tremor, left hemisphere ischemia, pneumonia -
Misremembering is better than forgetting
Remembering Grace, again. And again. This year, I thought it would be 9 years within the hour. Nope. It’ll be 9 years in 48 hours and 38 minutes. Memory difficulties suck. She’d be 8 this July. There’s too much to write. I’ll sleep on it. Thinking of you, Gracie. Always am. ❤
ellie
ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, asphyxiation, ataxia, bipolar, bipolar disorder, bipolar II disorder, brain injury, brain stem tremor, Brainstem, brainstem stroke, brainstem tremor, cardiac arrest, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, D&C, depression, diagnosis, disability, GAD, generalized anxiety disorder, handicap, hardship, hemiplegia, hypertrophic cardiomyopathy, Intention tremor, ischaemic stroke, ischemic stroke, left hemisphere ischemia, major depressive disorder, MDD, miscarriage, neuropsychiatry, operation, perspective, pregnancy, rape, Recovery, sexual abuse, stigma, stroke, stroke recovery, surgery, TBI, The Stroke Story, trauma, tremor disorder, young adult stroke, Young stroke, young stroke survivor, YSS -
New batteries make my brain go ’round
I squealed after setting my cell phone on the kitchen counter and excitedly bounced on my toes – while holding onto the counter, of course – for a moment, then turned to place my medicine bottles back in the cupboard above my head. It must seen strange, my looking forward to another surgery. Let me…
ellie
ABI, ACA, acquired ataxia, acquired brain injury, acquired cerebellar ataxia, anomia, aphasia, ataxia, awake brain surgery, bradycardia, bradycardic, brain injury, brain stem tremor, brain surgery, Brainstem, brainstem stroke, brainstem tremor, cardiomyopathy, cardiovascular event, cerebellar ataxia, cerebellar ataxia brain stem, cerebellar stroke, Cerebellum, DBS, deep brain stimulation, disability, Dr. Albert Fenoy, Dr. Mya Scheiss, handicap, hemiparesis, Houston Medical Center, hypertrophic cardiomyopathy, Intention tremor, ischaemic stroke, ischemic stroke, kinetic tremor, left hemisphere ischemia, Medtronic DBS, Memorial Hermann, Memorial Hermann Hospital, Mischer Neuroscience Institute, operation, Recovery, stroke, stroke recovery, surgery, The Stroke Story, Tremor, tremor disorder, young adult stroke, Young stroke, young stroke survivor, YSS
It's never been better 