Day 1- The Faces of Guillain Barre: Justine's Story

Sunday, May 1, 2016 0 Comments

Decembers of 2014- the beginning of the longest year in our life's... Hell it was the start of the longest days, hours, minutes and seconds. The start of more fear, confusion and stress than we have ever felt.

But it was also when my faith in humanity was restored. I have never felt more love in my life. The generosity of so many... It's just overwhelming. I'm forever grateful to my family, friends, community and so many more... The donations, food, prayers. The constant company and holding my hand meant more than you could ever know.

In early December I came down with my first ever sinus infection... It was horrible and also a ear infection. I went to an imeadate care who prescribed me a z-pack of antibiotics. By day four I was feeling great. The next day, day five. I felt terrible. I had no energy and mixed with a cough that was making me vomit- I felt like I was dying. The next morning- December 11th 2014 I woke up with my left eyelid droopy. Later in the day my hand, feet and mouth all went numb and tingly... Including my teeth. I was talking funny and when I tried walking, it was more like a dance.

Waiting at Imeadate Care

Of course there was a huge storm in our area and everything was flooding. I felt guilty but had my husband, Bryan take me back to the imeadate care. I have never felt like a bigger hyprocondract than that day. The Doctor said that I was probably having an allergic reaction to the privious antibiotic I was taking. To just sleep it off and it was nothing.

The next evening I was admitted into the ER. At that point both of my eyelids were droopy, it was hard to understand what I was saying and I had to have assistance to walk and when I took a drink of something it would go back up my nose. We didn't know then, but my trachea was already paralyzed.

The ER doctor mentioned Guillain Barré Syndrome but that it was rare. They started running what seemed like every test known to man. The next morning the Neurologist came to see me and he was confident that I had Guillain Barré Syndrome but was waiting to confirm it with the results of my spinal tap.

I was coughing so hard and producing a crazy amount of spit. I was terrified to have the spinal tap done because I had to stay completely still. That's when I was introduced to the suction wand. They gave it help with the coughing and mass amount of drool. The spinal tap came back negative for elevated proteins which are needed to diagnose Guillain Barré Syndrome. My neurologist was stumped.

That night my aunt and husband stayed with me. I woke up to use the bathroom and realized that I couldn't feel my face or move the right side of my body. I started yelling that I needed a basin to puke in because I was so terrified to learn that nobody could understand what I was saying. I stood up to walk to the bathroom and fell on the floor. From there the hospital staff was in a frenzy yelling all kinds of scary things including that I couldn't protect my airway and that then needed to take me to the ICU and have me intubated.

My husband and best friend, Whitney later yelled at me for taking this selfie my self and sending it to a few people. Lol- the nurses said I was the first patient that they ever had that was intubated in the ICU and texting.

By 72 hours after my first GBS symptom I was connected to a ventilator and nearly all the way paralyzed. I was started on IVIG. By that time I finally tested positive for GBS. I continued to get worse and worse in the following days. I had to have a tracheotomy and have a G Tube inserted for my feedings. At my worse I was completely paralyzed- my eyes and all. I was unable to open my eyes for 4 weeks and it took a few more weeks for them to focus so I could see clearly.

I was at our locally hospital, Enloe for 2 1/2 weeks. They did a nerve conduction test and decided I had the AMSAN variant of Guillain Barré- Acute Motor-Sensory Axonal Neuropathy. With is the most severe variant of GBS. I was transferred to UCSF where they did all of the same tests that Enloe did. The sent me back to Enloe for a week. From there I was sent 2 hours away to a long term care facility called Vibra on January 8th. 

While I was at Vibra I started getting some return. My eyes opened... But wouldn't shut completely for months. I finally weened of the ventilator after relying on it for nearly 2 months. I got to the point where I could move everything from my waist up.

A month into GBS. I had no idea that I changed so much. My face was still paralyzed.

On February 22nd I was admitted to Sutter- Roseville Rehab Facility. I was there for 2 months and learned to be more independent. Before I was discharged to go home I was able to use a slide board with help to transfer to different surfaces- both room, bed, couch, wheelchair ect.

 I could twitch my legs and was able to take a few steps while I was in a sling.

My first week at the rehab. I was so happy to be visiting with my grandma, Aunt Leann and Cousin Kasie but I was unable to smile.

My last day at the rehab! Dad and I were so excited to go home. I do have to mention how amazing my dad was. 
I was discharged to finally go home after 131 days in hospital care and my dad was with my for 127 of those days and most of the hospitals I was at were 2 or more hours away from home. He is amazing and I'm so blessed to have him.

After being home and having Physical therapy 2-3 times a week I finally graduated from PT in February 2016- 14 months post GBS. I'm now able to walk short distances with a walker and walk unassisted for a few steps around the house. 

It's been a long hard ride but I'm so grateful for the people who have been by my side. I couldn't of asked for a better husband, dad, family, friends and community that never skipped a beat. They always did their best to make me feel safe, loved and taken care of.

I'm forever grateful for all of the wonderful people I have met because of Guillain Barre. Including all of my fantastic therapists; speech, occupational, physical,recreational and respitory and the amazing nurses, doctors and CNA's. 

September 2015

September 2015

February 2016

So many of these people worked hard for me to make the best of my situation, be comfortable as possible in an impossible situation. They were my sounding board. They let me cry when I needed to and never stopped pushing me. My journey would have been a lot different without Allison, Tracy, Alyssa, Julie, Tossin, Erik, Gabe and so many more. You will never know how much I appreciate you all.

Life isn't always fair... But I'm alive and thats beautiful.

I'm Justine, the owner of this blog. Thank you so much for tuning in for- "The Faces of Guillain Barre" I would love for you to follow along and like me on social media and share all of the amazing stories to come! I'm located in Northern California. If any of you would like to contact me about sending in your stories or any questions, feel Free to email me at