Lindsay - My Guillain-Barré Syndrome Story

When I was diagnosed with Guillain-Barré Syndrome, I would post on social media or send emails to keep friends and family in the loop. I would start each post with “My GBS Journey.”

Most journeys have an interesting, sometimes happy, sometimes sad, and sometimes complicated story behind them.

Here is mine……

In 2019 I enrolled in a three-year Bachelor of Science in Nursing program. So at 39 years old, my journey began.

April 2020, while in school and working as an Emergency Medical Technician, I was diagnosed with Covid. I was out of work for seven weeks before recovering enough to return.

November 2020 was Covid round 2 but thankfully not nearly as bad.

Throughout 2021, I successfully (but not always gracefully) managed to continue my nursing school journey while working and dealing with frustrating and troubling symptoms. I was diagnosed with Long-haul Covid.

December 2, 2021, was the day that completely derailed my journey.

I had just finished my quarter nine final exams and woke up with numbness and tingling in both feet and significant weakness in both legs. I called my doctor, and he immediately sent me to the emergency room. After eight hours, I was admitted to Parker Adventist Hospital. I was completely numb from my hips down to my toes, I could no longer move my legs, and I couldn’t walk. I was absolutely terrified. I was officially diagnosed with Guillain-Barré Syndrome. I spent five days in the hospital undergoing multiple tests and daily IVIG (immunoglobulin) infusions to stop the progression. The doctors don’t know exactly what caused my GBS, but they have theorized that long-haul Covid may be to blame.

In total, I spent 19 days away from home. 5 days at Parker Adventist Hospital and 14 days at Encompass Health Rehabilitation Hospital for intensive physical and occupational therapy, where I had to relearn how to walk while enduring an extreme amount of pain. I entered Encompass using a wheelchair exclusively and went home able to use a walker for short distances.

Once home, I completed six weeks of home health physical therapy and then started outpatient physical therapy that I continue to do twice a week.

I had a scary moment at the end of March due to a GBS flare-up. I was admitted for a two-day IVIG infusion and discharged home to continue outpatient physical therapy.

August 5, 2022

It has been eight months since my diagnosis.

Where am I in this part of my journey……

I was hesitant to create this. However, my Dad told me my story needed to be shared and there is no shame in asking for help when needed.

The good news is, three days ago, I got clearance to return to school. I only have three-quarters left of my BSN, so that part of this journey is back on track.

So, I am here, sharing my Guillain-Barré Syndrome story and asking for help.

Eight months seems like a long time to wait before asking for help. You know what? It is!!

I have been improving more and more every single day. And every day I keep telling myself I am that much closer to returning to work, so maybe I won’t need to ask for help.

Unfortunately, the stress of trying to stay ahead financially is taking its toll. I am in a position now where I need to ask for financial help so I can get caught up on my bills, pay all my medical bills, and focus the energy I need on my health and recovery instead of worrying how I will pay for groceries. 

Thank you from the bottom of my heart for everything. I could not have gotten this far in my journey without the love and support I received from the amazing people in my life.

Love to you all.

Lindsay