A SPINRAZA UPDATE PT. 2

I have a tendency to overanalyze every little aspect of my life, and as a result, I can sometimes second-guess myself into a fear frenzy. It’s a nasty habit, one I’m not particularly proud of and have been working through for quite some time. I don’t know when this came about or how I manage […]

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A SPINRAZA UPDATE: TO BE CONTINUED

Right about now, I should be laying on the operating table. I should be clenching my motherโ€™s hand and taking slow, meditative breaths as the surgeon carefully stings my lower back with precision. I should be listening to every click and every spin as a fluoroscopy machine rotates around my body. I should be receiving […]

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WHAT THE MOST SIMPLE, YET POWERFUL, ADVICE FROM MY DOCTOR TAUGHT ME

Emotional pain is like a summer storm. As you’re enjoying the warmth radiating from the sun, a dark cloud-covered sky arrives and indicates what’s about to come. Lightning strikes. Thunder claps. The earth shakes. And, you scramble to find shelter to keep yourself safe. Pain often works the same way. It’s unpredictable, damaging, and springs […]

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PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY โ€“ PT. 4

Well, it’s official. I am literally worth [half] a million bucks. Spread the news. Shout it from the rooftops. Tell all the single fellas out there that I’m a precious, rare gem whoโ€™s looking for love and measures her worth by the amount of Spinraza doses she has received. Yes, that’s right, ladies and gentlemen. […]

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