Wednesday 4 November 2020

Through my eyes: Surviving encephalitis

 Let me start by saying that before I got sick, I went to school for social work before training to be a dental hygienist. I stayed there because I loved my job and my coworkers, and the money was just what I needed to take care of my kids. I was 31 years old, and I was happy. 

On September 7, 2018, I noticed that my hands were clammy and that I had really bad anxiety.

I left work early to go and see the doctor because I knew that something was wrong. He recommended that I see a counselor and believed that I was suffering from “mental issues.”

I continued to see various doctors in various hospitals who prescribed me various anxiety medications that would not work. Then, one day, it got really bad.

I set out for a hospital 35 minutes from my house, in Alliance, Ohio. I got confused and couldn’t find it, so I drove myself home and called my sister, who immediately came to my house because I was talking erratically, in a way that worried her.

I wasn’t making sense, so she drove me to the hospital, where I had a seizure. My sister called my mother, who was living in Cleveland at the time, and told her: “Come home now! Tisha is not talking right.”

My mother dropped what she was doing, without even packing any clothes, and she and her husband, Larry, jumped on the highway. From what my mother tells me, the hospital in Alliance had already sent me to a hospital in Canton, Ohio.

Searching for the problem

When my mother arrived, I wasn’t making any sense, wouldn’t eat, and kept trying to leave the room. A doctor came and asked whether I had a history of mental health problems.

My mother replied: “No. There is nothing wrong with her mind. Something is taking over my daughter, I just don’t know what it is.” At that point, I had another seizure, which put me in a coma.

From this point on, I only know what I’ve been told, as I was totally unconscious.

A doctor announced that I needed to be put on life support to survive, and with this news, my whole family’s hearts were broken. My mother felt helpless, watching me lying in the hospital bed and knowing that there was nothing that she could do about it.

I had a series of tests. The doctors told my family 99 things that I didn’t have, but they couldn’t tell them what I did have.

Then, on September 17, 2018, I was moved to another hospital, where they diagnosed me with anti-NMDA receptor encephalitis, a rare autoimmune disease that can attack the brain. This is the same disease featured in the book and Netflix movie Brain on Fire.

While I was at the medical center, in Cleveland, I had a tracheostomy to help me breathe, and surgeons removed one of my ovaries in the hope that it would help me get better.

I was there until October 29, 2018, and then I was moved to a nursing home in Boardman, a suburb of Youngstown, Ohio, which was closer to my family. My mother says she felt like nothing was being done right. She was frustrated and scared.

Source: Medical News Today

 

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