The Faces of Guillain Barre 2017: Day 11, Part 1- Angie

Thursday, May 11, 2017 0 Comments

Saturday, May 11, 2013, a day that changed my life. I woke up around 5 A.M. and having to go to the bathroom. As soon as my feet hit the floor, I knew something was wrong.

My nephew & I tubing on The Shenandoah River (Summer 2010) Such a fun time!

I staggered down the hall and looked at the clock on the wall. It was double. When I made it to the bathroom, I looked at myself in the mirror and couldn’t focus. I tried so hard. I could see that my pupils were dilated. I woke my husband and we went to the hospital a little while later.

My brother Adam & I at The Arnold in Columbus, OH. March 2012. My brother, Adam Mamola, is on The American Bench press Team and is The World Record Holder! I too, used to compete years ago, but not at The International level. I did hold some state & national records back in the day..

Jumping on the beach -Summer 2012

They started running tests. Bloodwork and CT scan all were normal. The ER doctor called a larger hospital to get another opinion of CT scan. Everything looked OK and the doctor said if I got worse or didn’t improve to go to my family doctor on Monday. 

I got progressively worse. Sunday the next day was Mother’s Day. We went to visit my mom. I couldn’t walk without holding on to something. I used the wall to avoid falling. My hands felt like two balloons. They were tingly and numb. My pupils were still as big as quarters. 

Monday, May 13, I could barely walk. I remember my husband calling my GP and me lying in bed, thinking I am dying. We left the house, my husband helping me to the car. I could barely lift my feet to get into the car. We arrived at the office  and the doctor asked if I could touch my nose and I couldn’t.  He then asked me to try and drag my heel down opposite shin and I couldn’t do that either.

 He called Winchester Medical Center and told them he was sending us to them. My symptoms mimicked a stroke.  My husband drove me to hospital. He got me inside. We were registering and I noticed I could hardly write. It looked like a first grader’s handwriting. I was so scared!

All GBS fighter's can relate to this!

I was admitted immediately. I had tons of blood drawn, an MRI, CT scan and lumbar puncture to determine what was happening.  All of my tests came back normal. While I was relieved it was also very frustrating at the same time. I wanted to know what was happening to me and what was wrong! I remember having the MRI and this scared me the most because they were testing for MS.

At the time of my MRI, around 11 P.M., I was waiting for the techs to wheel me in. As I was waiting I was so nervous and scared and could hardly see anything. My vision was doubled and blurry. Across the hall from me was an empty room with a radio on. I heard a song. Although I didn’t recognize the song it sounded like a pop song by a boy band. After the song someone came on the radio and said “If you’re having marital problems, work problems, or health issues, don’t look down look up”. This brought me peace. It was God comforting me. I know this without a doubt. I needed this right then at that very moment. My fears were put to rest when they said no lesions were found.

Me with Rufus, a therapy dog that my employer arranged as a surprise! This was the only time I smiled while in the hospital. I cannot even put into words the joy I felt when I saw this beautiful dog walk through the door and then get upon my bed. I petted him with numb, but very hypersensitive hands. It's crazy that we have both sensations!😑 This memory still makes me tear up..

Over the next several days I was bed-ridden. I was finally diagnosed with Miller Fisher Syndrome on May, 17th. I had all the symptoms, paralysis of the eye muscles, dilated pupils, double vision, lack of coordination, numbness  in extremities, especially my hands, no reflexes, slow swallowing and weak muscles. I couldn’t feed myself. I remember becoming so exhausted after just a couple bites. The therapist said it was normal to feel exhausted. I had a swallow study, followed by softened or liquid only food for a couple months.

Summer 2013- with my beloved dog, Gibson

Summer 2013- with my sweet, Libby- always by my side

PT and OT worked with me doing leg and arm exercises, which were difficult because I was so ataxic and weak. I had Physical and Occupational therapy two - three times a week for the next three months. I used a wheel chair for 8 weeks and then a walker and eventually a cane. I patched one eye to cope with the double vision. My optometrist ordered a Fresnel (prism) lens to help with vision, which worked well for me. One morning I got up and looked at the clock and it wasn’t double anymore. Two and a half months after getting sick. I was beyond happy because I honestly thought my vision may stay double.

December 2013- 
I had this shirt made & also had another one made for a man my husband works with. He had GBS in August 2013. We attended the benefit for him and both wore our shirts. Raising awareness!

I returned to work part-time on September, 3, 2013. I couldn’t believe the day before all this started I was normal. My husband and I were on our 9th week of P-90 workout. Prior to this I had a severe sore throat and upper respiratory illness. The doctors seem to think this could have triggered my immune system which then turns on itself.

May 2015. My husband & I hiked approx. 8 miles on the South Rim of The Grand Canyon!

Today, May 11th, 2017 is my 4 year anniversary with GBS. I do have some residuals. I have some numbness, burning and pain. I have a spotty memory sometimes which I believe is from the Gabapentin I take. I have good days and bad days but nothing that compares to when I first got MFS. I have never felt  so helpless as I did back then. 

standing in front of The Grand Canyon last May 2016.God it felt like I was on top of the world! I love that place​! It was very emotional for me not just because I was overwhelmed with one of the most beautiful, grand, places I've ever been, but because I could walk the trails of one of the most beautiful places God has made!

Today I am grateful to be able to do what I once did. I have to remember to pace myself. If I really push myself too far, my residuals really flare. I am grateful to be able to write this.

I am so thankful for family who stood by me for three months daily. My husband took FMLA for three months to stay with me. My parents would come over after work and help out.  Most of all I thank God that I’m still here to share my story. I am blessed.

Virginia USA