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Leaving Home to Stay Alive

By: Sara T., Pasco County

My name is Sara T. I’m a lifelong Floridian who was forced to leave the State that I love to get the healthcare coverage that I needed to save my life.

In 2012 I had a seizure and fell out of a chair at work. After two years of visiting doctors and specialists I found out that I had Arnold Chiari Malformation – a malformation of my skull putting pressure on my brain. I had Medicaid for insurance at the time which thankfully covered the only known treatment, decompression surgery. There is no cure for Arnold Chiari Malformation. The surgery and any additional treatment would only slow down the progression of symptoms. My surgeons removed too much bone from the base of my skull during that surgery and now I will need even more follow up in years to come. On top of this major illness I also have multiple other chronic illnesses. I’m 40 years old, and yet I feel I have the body of an 80-year-old. I use a cane when I walk. I have a power chair that I have to use.

When my daughter moved out, around 2015, I lost my Medicaid because I no longer had a child in the household. I looked into Obamacare, and it was going to cost around $400 a month with an $8,000 annual deductible. I don’t have much of an income. With my illnesses I can’t hold down a regular job. Working is an obstacle for me.

In May of this year, I started getting some of my symptoms back. I knew that I would not qualify for Medicaid, and I knew that I could not afford the out of pocket costs. It’s not an easy process. There’s lots of testing and doctors’ visits. It’s scary because I have drop spells. I’ll be walking around and just fall. I often hurt myself. I fell recently and busted my face next to my eye. The hospital cost was $4,000. Luckily, I was not in Florida or that would have had to come out of my pocket somehow. I’m still paying off medical bills in Florida from an injury last year. I pay $25 every other week. All of the care and treatment that I need costs money. So, I did my research. My oldest child lives in a state that expanded Medicaid. I’m considered medically frail there and would qualify for Medicaid. That’s when I decided to become a snow bird.

I left Florida to save my life. Luckily, I’m able to stay rent free in my son’s house while I’m living out of state. That makes it much easier. But on the flip-side, it disrupts my whole life. I had to leave my home, my family, pets, and everyone I love in Florida so that I could get some healthcare.

I’m currently considered a resident in my new state. I will have to switch my residency back to Florida when I go home and will have to deal with my taxes and homestead exemption. I’ll see as many doctors as I can while I’m here before heading home. During my most recent trip, my doctors found out that I have sleep apnea and sleep hypoxia. They said that I stop breathing 45 times an hour while I’m sleeping. I’ve started using a c-pap machine while sleeping. This would have never been caught had I stayed in Florida. I could not have afforded the sleep studies or the equipment that I need to use for the rest of my life.

I’m an income tax preparer by trade. I try to work as much as possible during tax season; as much as my body will allow. As soon as I come back to Florida, my Medicaid will stop. So, I’ll be living on a wing and a prayer. But that’s the Florida-way when you don’t have health insurance. The cost of healthcare in Florida is unbelievable. Until Florida does something different, I will jump from state to state. It’s cheaper for me to pay the cost of the plane ticket than to go into serious medical debt.

My condition requires that I have multiple MRI’s every 6 months. If you find a decent facility to do these in Florida, the cost is around $400 per MRI. I need my brain, neck, and spine scanned, which will cost me $1600 or more every six months. That’s unbelievable and unaffordable.

I also suffer from a host of other conditions including Rheumatoid Arthritis, an autoimmune disease. When I was in Florida, one pill costs me $200 a month and that’s with help paying for the medication. My Rheumatoid Arthritis requires me to see a doctor monthly to have monthly IV medication. I have not been able to get this medication for three or four years. In my new state, there are very few rheumatologists and the wait list is 6 months long. If I don’t get the medical care I need the symptoms will all get worse. That’s the scary part; not being able to get that monthly help to stop it from getting worse. I’d also had a tumor removed from my brain in 2003. Since then it has grown back and my latest MRI indicated an addition tumor growing in another location on my brain. Now I’m waiting patiently to talk with a doctor about these findings.The last time I talked with a doctor about it they were talking about radiation and chemo. This has all been very difficult to live with. I just want to be at home in Florida with my family and friends. Instead I sit in another state and wait on the Doctors to tell me what's next.

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