Fighting for my Health: Support Me Through the Unknown Ahead

I’m requesting financial help while I am out of work for cervical spinal surgery related to one of many serious conditions I was born with. Throughout a lifetime of chronic health issues, I’ve never asked for this kind of assistance before, so I hope you know I wouldn’t ask if I didn’t truly need help.

This surgery comprises only part of the solution to the medical mystery at the root of chronic pain and other symptoms that have plagued me for years. I am also working hard to find an appropriate treatment for the phrenic nerve damage caused by my ventriculoperitoneal shunt which is increasingly affecting my ability to breathe. It will likely entail more surgery, which I hope to be able to schedule close to the spinal fusion to make the most of my limited leave time. Enlisting the help of neurosurgeons, neurologists, neuromuscular specialists, thoracic surgeons, and whoever else my care team recommends, I am spending nearly all of my free time embroiled in this exhausting quest for a less painful life. You can read a more detailed explanation of what's going on here.

I was born with a cornucopia of birth “defects” which have affected me in different ways throughout my life: some are visible to the naked eye, but most are not. As an adult, I powered through 6 brain surgeries, most of which were emergencies, and countless more medical crises, typically back to work or school (or both) in a month or less. Because I rarely had time to build the infrastructure of a stable life before the next health crisis came around, I was constantly experiencing the world around me falling apart. And with every crisis, my support system grew smaller and smaller, as there were fewer people willing or equipped to handle the catastrophe that seemed to follow me everywhere I went.

I worked and worked and worked toward the dream of a job in my chosen field with a stable income and reliable health benefits. And I finally got there.

But I am out of sick time due to the increased frequency of my doctor visits of late, so this surgery means 3 months of unpaid FMLA leave, plus a pathetic $170 per week from New York State disability, (IF I get approved.) It goes without saying that $170 doesn’t go very far in New York City.

I am tired. Physically, mentally, and emotionally tired from the years of fighting with doctors, insurance companies, and pharmacies, HR, the union, and everyone else that has stood in the way of my getting the care I need. Tired from working with the measly pay of a public servant to live a life with disability and chronic illness, which is inherently expensive. And now I need help.

Your donation will help me make ends meet at a time when I’m without income and facing:

I am thankful, as always, to everyone who has helped me in the past, and to everyone who chooses to do so now. Mil gracias a todos.