Living with Guillain-Barre Syndrome

In 2004 I awoke to my husband looking at me with tears in his eyes. I tried to talk, but soon realized I couldn’t. I tried to lift my hand to his face and realized this too was impossible. As I looked around feeling like my entire existence was my eyes, I slowly realized that my eyes were all I felt. Then I felt those terrified eyes darting about wondering what the hell was going on. My husband, seeing the fear in my eyes, said, “Angel your on a breathing machine, and your paralyzed. It’s been a month now and Arnold Schwarzenager is California’s Governor!!” What? I thought, but couldn’t talk, react, move nothing. Yet my dear love was still making me laugh inside.

I was 39 years old and had been raising my grand daughters while their mom served in Iraq. For a week I was in bed not getting air to my brain, so never realizing it. Friends watched my grand baby girls thank God! My eye doctor called and asked where I was, but this I do not remember I’ve only been told. She then called 911 and by the time the ambulance arrived I had stopped breathing. I guess knowing help was on it’s way I had let go.

Next all I know was darkness, but I won’t get into what was happening every time I tried to die. Let me just say, when people are in a coma they can hear everything people are saying. I remember hearing over and over that I was not going to live past twenty four hours! If I did it would be for fourty eight hours. Well surprise! But DO NOT ever talk about someone in front of them in a coma, because YES we hear you!!!

It was one of the scariest times of my life, or so I thought. After learning to hold my head up I learned to walk again. Slowly and what a journey, but I was full of determination because I was still alive. So life went on, but I had a relapse and had to undergo Plasmapheresis over and over again. Life soon became just a complete challenge and I wondered daily why I was still here!
It’s now been four years though it feels like yesterday. My thyroid went crazy. I was diagnosed with borderline diabetes, and have never been close to what I was as a human being. Yes there’s depression, but beyond that there’s still the pain, weakness, forgetfulness, paralysis, no energy, and fear in my every day life.

At the time no one had heard of GBS but somehow my doctors did the right things, or it just wasn’t my time. All I know is my life as I knew it went away. My husband works 12 hour days and now more than that does nothing but worry about me. It’s not fair to either of us.

No I’m not a baby. I’ve endured being trampled at a concert with neck and back problems since I was 20. I was with my mom for nine months while she lost both her legs and died a horrific death no one should have to. I have had 34 female surgeries leading to a hysterectomy at 28 when I wanted children more then anything in this world. Then tried dying because I got a flu shot so I’d stay healthy for my grand daughters. (yes step-granddaughters), but yet here I am, and I do not know why, or why I still suffer so badly everyday.

Does anyone out there understand? Am I really as alone as I feel? Someone please help me!!!