Patient Stories

Many of you know me because I have responded to your patient inquiries either by phone, email, or  have conversed with you virtually, at in-person regional meetings or symposia.

I have been with the Foundation for seven years, and quite frankly, it has been easier to consult with many of you than for me to share MY story. 

Embedded in my memory bank, I can still remember the cold winter day in January—I was headed to class and felt like I was coming down with a cold, feeling slightly fatigued, mind you at the time, I was  a college student, so I told myself to do less partying and get more rest. I thought I would be initiative-taking and went to CVS, purchased vitamins, and started eating healthier—I still could not combat the fatigue.

As days passed, I noticed my feet felt like they were asleep, you know, that tingling feeling – now the fatigue is more significant, and weakness is beginning to set in. What now? I asked myself, so I called my mother—she demanded that I go to the ER. So, my roommate and I caught a cab, and off we went. The ER physician states, “ this is flu season, and you are probably coming down with the flu,” so they prescribed antibiotics and sent me home. I thought, “oh, I am going to be better now that I have medication.”    

Days passed, and I made my mind think I was getting better; I had medication, so I must be?!  I finished the meds prescribed, but now, I am falling, and my feet feel weak. I cannot feel my foot on the floor, so I start shuffling. Again, I called my soul mate (mom), and she yelled, “go back to the ER,” this time at another hospital with, again, my trusty roommate. As we arrive this time, I need a wheelchair because my breathing is impacted. My legs are not working—we laughed as she wheeled me in the waiting room— reflecting on the movie Beaches when Bette Midler helped Barbara Hershey’s character – we both started singing. “ Wind beneath my wings,” trying to lighten the mood, but in reality, both of us were very scared.

The Neurologist saw me and seemed to know immediately what was wrong— I recall looking at his face when he hit my knees with the reflex hammer; he kind of hinted by saying, “can you feel that” I said “no,” not realizing my knees didn’t react—he asked me to lift my arms over my head, I was embarrassed— I couldn’t. He immediately ordered a spinal—I am waiting in his office thinking, is he going to give me more anti-biotics? I started to attempt to put my coat on, and he came in and said,

“ Lori, you have a rare neurological disease called Guillain Barre Syndrome, and we need to admit you asap.” My world suddenly was turned upside down. I asked, “ what is that, and how do you contract it?

Will I die? I immediately asked to call my mother—she took a train from New York and was in Philadelphia in less than 2 hours and was by my side, relieving my roommate.

It is nighttime, and I am in my hospital room looking at the ceiling—counting the holes in the ceiling tile—trying to remain calm. I kept telling myself, “You will get through this; “stay positive.”

I eventually fell asleep and woke up to about to see my neurologists and about five student fellows—all intrigued, I felt like I was on display, they kept asking me to squeeze their fingers, running a pen across the bottom of my feet – asking me, what seems, to be about one hundred questions. My Neurologist sat next to me and said, “we’re going to start plasmapheresis today and every day until you are better” he described the process—all I heard was a giant needle inserted in arm as you sit in a chair.

I was trying to visualize the machine and started panicking.

My nurses were incredible – they bathed me and would say encouraging words like; you are so young you will be back at school with your friends soon—stay positive!! I kept replaying those words in my head. “Stay positive, Lori.” 

I received and welcomed my plasmapheresis for 18 days and was finally released. I could walk,  at a very slow pace, but could walk.

I believe I got through the unexpected GBS journey by staying positive, which evoked positive energy that helped my body recover.

As I was in the “recovery phase,” I wondered if I was the only GBS patient in the world?  Was I unique or a statistic?

As years passed, I made a life-changing decision to leave corporate America— “ corporate earnings” did not feel rewarding anymore, so  I felt the need to transition to a non-profit was my calling.

As I pondered, I saw a posting for an Administrative Assistant position at the GBS|CIDP Foundation. 

Serendipity!

I would like to conclude working with you, the patients, and the Foundation is like the referenced song

I replayed in my mind when I was undiagnosed – You are all the “wind beneath my wings,”

Thank you for allowing me to share my story.