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, f6eet 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.
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.
March 2016
After being home and having Physical therapy 2-3 times a week I temporarily graduated from PT in February 2016- 14 months post GBS. At that time I was able to walk short distances with a walker and walk unassisted for a few steps around the house.
March 2016
After being home and having Physical therapy 2-3 times a week I temporarily graduated from PT in February 2016- 14 months post GBS. At that time I was able to walk short distances with a walker and walk unassisted for a few steps around the house.
In July of 2016 I was 90% in a wheelchair and still had many days where I was overcome with chronic fatigue and pain. I found vitamins and supplements that worked for me and made the biggest difference in my everyday life. I no longer have daily pain or fatigue. Only when I over do it.
With my niece, Hadlie and Nephew, Hagen.
Yup, we are perfect for each other. Lol when Bryan had his tonsils removed.
Bryan and I
First time shooting since GBS
Fall 2016
I returned to Physical Therapy from October 2016- April 2017. I haven't had to use my wheelchair since Christmas. It has been amazing. I do sometimes use power chairs when I'm shopping. It's all about knowing my limits.
Walking on the beach- October 2016
First time back on a swing! My nephew, Hagen is the cutest. We both had so much fun with him pushing me.
October 2016
In January I did have a bit of a breakdown. I thought for sure I was relapsing. I ended up having bronchitis and it brought some long loss symptoms back to the surface. My skin started burning again. My hands and feet would turn bright red out of nowhere and burn while my entire body itched. I was also wheezing which made me think my respiratory system was once again becoming paralyzed. The thought of having to relearn everything once again doesn't share me. But being on a ventilator does.
Right after I passes my drivers test in November!
Sledding in January 2017
I'm fine these days. Just so grateful for all that I have regained.
My walking has improved so very much. I'm able to walk further and further. When I get tired I just sit down and then keep going. It's not uncommon to see me sitting in the middle of Walmart lol.
Taking a break with my dog Onyx
February 2017
Balancing on a pile of wood... like a ninja
March 2017
First time back on a horse
March 2017
We just sold my grandparents ranch. Nearly everyday since January I had been walking through the fields on uneven ground, a little more every day. It has been amazing for my healing... Mentally and physically.
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.
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 justinesgbsjourney@gmail.com
