By: Stefanie C., Highlands County
I’ve always been a pretty healthy person, but a few years back I started getting bad headaches. I started blacking out and wouldn’t have a clue where I was when I woke up. I went to the doctor and he ran an MRI which showed that my spine was staring to fuse on its own. I was sent a surgeon who diagnosed me with Ankylosing Spondylitis, an inflammatory disease of the spine. I had my first surgery on 2010 on my cervical spine. Recovery after the surgery was tough. I ended up losing my job in 2011, because I could no longer work. At the time my husband had children in the home, and all of us qualified for Medicaid. We divorced in 2017, and I lost my insurance coverage.
Over the years I’ve been homeless because I just can’t work. My body won’t allow it. My friends take care of me. I’m actually staying with friends right now.
I looked into insurance through the Affordable Care Act. I couldn’t afford the rates. I’ve been fighting to get approved for Social Security Disability since 2016. I’ve been denied so now I have an attorney working with me. We are now in the final stages of another appeal hearing. I’ve applied for Medicaid several times and been denied also. They keep telling me that I don’t give them enough information, but they will never tell me what information specifically they need. It’s frustrating. My doctor has even written them a letter laying out my health issues, and they still denied me.
The disease has caused me to have seizures. I spend most of my time going to the ER because I can’t afford to go to a doctor. Last Thanksgiving, I had 27 seizures and ended up in the hospital for 8 days. I was in the hospital again this weekend. I feel like my body is depleting. I also have serious issues with my immune system. I can’t be around people who are sick, at all. I’m in pain 24/7.
The medication to control my seizures cost me $25 a month. I use a discount card otherwise it would be $125 per month. Doctors won’t give me anything for pain, but that’s fine because even if they did, I couldn’t afford it anyhow. The doctor that I see uses a sliding scale fee. He treats both the seizures and the Ankylosing Spondylitis. He’s a general practitioner, so he can only treat my symptoms. He can’t give me the MRIs or treatments that I need.
When I had Medicaid for insurance, I was able to get all of the tests and medication that I needed to be well. It was covered $100%. Currently I have an 18-gallon tote filled with medical bills. I make a copy of the bills and send them off to Access Florida Medicaid. They still deny my application.
There’s a support group I belong to on Facebook for people who are suffering with Ankylosing Spondylitis. That helps me a lot. It’s a place I can go to and talk to people who have the same condition. People I talk to are more informed than some of these doctors. After I lost my Medicaid, I went to see a doctor who didn’t understand my condition, even after reading reports from my surgeons. My feet swell up really bad, and he kept saying that I had a blood clot in my foot. I knew that it wasn’t a blood clot because swelling is a part of my Ankylosing Spondylitis. It will attack other parts of my body. I hooked him up with the Facebook support group and that’s where he learned more about. But, honestly, he’s not a rheumatologist. He even said to me, “we need to get you some insurance so that I can send you to a specialist.” That’s when he wrote the letter to Access Florida for Medicaid. They still denied me.
Extreme cold weather is bad for me. Extreme heat is also bad. Before I go to bed and when I wake up in the morning, it’s at its worst.
There is no cure for Ankylosing Spondylitis. The treatments are biologics, like Humira and Methotrexate. The doctors can give me a shot which runs from $400-$1,200 a month out of pocket. The only other treatment is surgeries and can’t afford those either.
On this last visit to the ER, the attending physician was our State Representative, Cary Pigman. He’s a doctor at Advent Healthcare. He even said that he doesn’t understand why I’m not eligible for Medicaid.
My cat is my emotional support animal and saves my life, quite honestly. She knows when I’m going to have a seizure. She will lead me to the couch so that I sit down. She will sit on top of me and makes sure I don’t get up. Her name is Thumbelina. She’s a good cat. I don’t know what I’d do without her.