Day 14- The Faces of Guillain Barre: Sioux's Story

Saturday, May 14, 2016 0 Comments

My name is Sioux. I'm an almost 42 year old, single mum of four. When I was 22, I was married with a two year old daughter. During the last part of June that year, I started to feel that something wasn't quite right with my body. I woke up one morning with numb finger tips, and pins & needles in my hands. We were in the middle of moving to a new home, so I chalked it up to a pinched nerve and went on about life.

Over the next several days, things got worse. Much worse. The numbness was steadily progressing up my arms and legs, I couldn't eat, had zero energy. I went to my doctors  office and was told I was stressed, given a prescription and sent home. Things continued to get worse and after another two days, I could no longer walk unassisted. I went to a local ER and they ran a hosts of tests. All the could find was a small spot of pneumonia on one lung. Certainly nothing that should cause such extreme symptoms.

The ER Doctor arranged for me to see a neurologist the next day. In the meantime, I lost all ability to walk and had a total loss of bodily functions. I remember feeling very scared. Scared that no one seemed to know what was wrong. Scared that I would die from some unknown disease. Scared that my daughter wouldn't remember if I died.
After having an EEG the next morning, the neurologist said the words I'd been desperate to hear for the last week; "I know what's wrong with you."  I started to cry. At that point, I was just so happy that someone knew what was wrong. Someone believed me. Someone could help me. His next words, I'll never forget; "you have GuillainBarre syndrome". I had no idea what that was.

A spinal tap to confirm and I was admitted into the ICU at McMaster University Hospital. I'd lost 15lbs in just over a week. I was treated with immunoglobulin. It was hard to deal with. My daughter had to go to stay with my parents in another city. My husband had to go back to work. I had many, many classes of medical students coming into my room daily, and I would have to perform a battery of exercises to demonstrate the effects. McMaster is a teaching hospital and 19 years ago, they hadn't had many cases of GBS. It was an opportunity for them to learn.
It was hard for me to deal with however. I was very young, my world was upside down, my normally strong and healthy body was failing me. I felt like I was on display, at the worst time of my life.
I now understand how lucky I was. 

Although it progressed to my body, and face, I never needed assisted breathing.
After about a week and a half, I was discharged. They'd done all they could, I was out of the woods. The rest was up to me. I couldn't care for my daughter alone, so I had to go stay with my parents for a few weeks. Slowly, I started to regain my strength. It was difficult to stay motivated. I went through bouts of major frustration, I lashed out at my mum. It was hard for everyone.
The good news is, after seven weeks I could walk unassisted again. Gone was the walker, gone was the cane. I continued to build my strength.

It's been almost twenty years now.
I still have some circulation issues, but I went on to have three more children. I'm active, and strong, and thankful for that, every single day.