Hi. My name is Nicole. I'm 26 & I live in Greenville, NC.
I have Pseudotumor Cerebri (also known as intracranial hypertension or IIH) and Intracranial Vascular Stenosis.
My quality of life over the past 4 years has gone from a 3.9 GPA college student with multiple academic awards, to a person who is unable to even go downstairs. Very quickly I went from loving hiking to unable to get out of bed most days and on over 12 medications daily (several of those medications come with long term side effects like dementia and kidney damage). I cannot walk without a cane and cannot stand for very long at all. I had dreams of finishing my bachelor's degree and working in an academic library or archive. But this illness forced me to drop out of school, with debt and no degree, disabled and unable to work.
This is not who I want to be.
I was first diagnosed in 2014, but my symptoms started much earlier than that, around 2011 when I first began to notice lights and narrowing in my vision, and began everyday in a cold sweat, collapsing on the floor, not knowing how I was going to get ready for work and school. I would lay on the bathroom floor and cry after vomiting because vomiting just made the pain worse and the pain triggered the vomiting. I wished for death.
I had what I hoped would be a life-changing surgery in May, 2016. It was to put in a brain stent for my collapsed/narrowed transverse sinuses which weren't allowing enough blood to get through to my brain. The stent was placed because I have Intracranial Stenosis, but it was part of a procedure that Dr Liu had created himself (meaning no other doctor will operate on it) to help with Pseudotumor Cerebri. You can read about the procedure here: http://www.uvaphysicianresource.com/treating-pseud...
I now need to go back to UVA for the stent to be checked for malfunction because over the past year my health has grown even worse than I thought possible. I leave the house perhaps once a month now, and have been hospitalized and admitted to the emergency room several times since May of last year. Where I used to be able to walk a little to help shop, I now cannot even leave my bedroom.
UVA is in Charlottesville, VA, over 5 hours away from where I live.
The first surgery will be on July 10th, the other July 11th. The main purpose is to get back into my brain to see how (and if) the stent is working, and to evaluate me for a shunt. For now I am budgeting for 1 week (allowing for required recovery time before travelling back home), but if I get the shunt that will be an extra two weeks, making three total weeks of hotel costs.
I don't know why I have deteriorated so quickly and severely in this past year. My vision is deteriorating and many people with Pseudotumor Cerebri go blind as a result of the pressure on our brains and optic nerves. We're also at risk for aneurysm and stroke, as well as accidental overdose on pain medication because the pain is beyond unbearable. I am losing in my fight right now and all I want is to regain enough of my health that I can finish school and be able to work once again, even if it's all from home. I want to be a contributing member of society again. I want to live again. This is a step towards health.
Please help me fight my way back to a livable life.
I am trying to raise between 2,000 USD and 2,500 USD.
I have Medicaid and Medicare. Medicare however does not kick in until July 1st, 2017 and my NC form of Medicaid is not accepted by UVA. Which means the cost for surgery falls entirely on Medicare.
Medicare should cover most of the cost, but I have a $1,500 deductible that I must pay upfront or before leaving the hospital in order to get the surgery. Needless to say that I do not have that. Not even close.
I currently receive about $600 from SSI/Disability, though that amount goes up and down every month and beginning in July they will deduct nearly $140 for my Medicare premium. The entirety of what is left goes to bills.
The rest of the amount I am raising will go to the travel costs of hotel, gas, and food. I cannot drive because of how poor my health is, so I am hoping my mom will be able to drive me up there. However, her health is extremely poor (she has sarcoidosis and is uninsured, so her condition is unmanaged and she gets worse as time goes on), so we may have to find a way to take a train or something, which would raise the cost I have to bear even more as her health also prevents her from working and being able to help.
I promise and I swear that every penny raised will go to the deductible/medical costs and travel costs.
Please help me fight for my health and life.