Erika's Medical Fund

Please help me survive and get the surgeries I need to breathe and manage severe surgical complications from Empty Nose Syndrome (ENS). After learning to live with ENS since 2003, I am struggling to fix acute airway complications for the past four years after a tonsillectomy/palate surgery in 2011.  My airway muscles began to dysfunction soon after, constricting instead of dilating when I breathe. This closes off my airway when I inhale, making me lightheaded and suffocated all day. Most of my surgeries so far have not been able to address the root of the problem, which was not detected until recently, after several relapses. I have been traveling around the country to top ENS and airway specialists. My Cobra insurance ran out, as did my alimony and any savings and assistance from my aunt and grandmother, who generously put aside money for me.  I am completely out of money until I can get disability or work again. I have not been able to work or study from home to finish my graduate degree in education, due to frequent travel for surgery and appointments, as well as debilitating and unpredictable symptoms of ENS - including suffocation, passing out, fatigue, sleep apnea, ADD, airway dryness, pain, and collapse; infections, daily migraines and dizziness,  and inconsistent cognitive function. I have mostly been homebound the past four years trying to figure out how to fix and manage this secondary and overwhelming complication of ENS.

I started my disability application in 2012 soon after my breathing problems started and I began surgery to address it. It is very difficult to meet my bills every month without disability income; I have to pay $500 for rent and $500  for health insurance, through the only available private plan that lets me out of state to see my doctors. I can't get Medicaid, Medicare or get on the waitlist for public housing or vouchers until I am approved for disability, nor am I eligible for ACA subsidies without the minimum income - and there is no plan that would let me out of state to the specialists I need for my condition. 

I am fighting to survive and keep my insurance that lets me see specialists for ENS and surgical airway complications. I am not able to breathe properly on my own without wearing breathe right strips and using extensive saline irrigation and steroid washes and sprays throughout the day. It is also painful to speak for long periods and eat, and I am on a mostly soft food/liquid diet for years now. I have been trying to manage living alone for four years. I am too weak and dizzy to drive more than to the store and appointments lately, and I am hoping to sell my car to make some money to survive until August. Just taking care of myself and managing my symptoms takes all my energy, even when taking medication and sticking to a strict regimen. I cannot risk being homeless in this situation, and I have only remote support from relatives, as my family has been unable to understand or stop blaming me, despite thirteen years going by and much more research and treatment coming out. I hope to work more on helping raise money for our international association, ENSIA (ensassociation.org) and awareness for ENS, research, and treatments. 

I will share more details when I have more energy to write - my brain fog and dizziness are constant and focusing is very hard because I cannot get enough air day or night with my airway so obstructed. At this point, I feel so traumatized, I cry everyday and live in perpetual fear. I have had little social life besides Facebook after moving back to Virginia after 8 years in New York City.  I am still hoping to find simple, home-based online work where I have flexibility for medical treatment, travel and appointments. If you know of anything not requiring intense focus or alot of speaking, such as chat-based customer service without high levels of technical skills, please let me know. I have tried editing and transcription briefly but my focus and brain fog have not allowed me to work very much in the fields of my experience (education, writing and editing).