In October of 2008 I was diagnosed with Guillain-Barre Syndrome. I spent 76 days in the hospital. I was completely healthy before GBS and to this day I don't know what may have triggered it.
My first symptom was tingling toes, it was Friday. Over the weekend, I was extremely fatigued and my legs were aching some. By Tuesday, my arms and hands were also tingling. Wednesday I noticed I seemed to be off balance and decided I should go to the ER. Once there I was given a blood test, was told I most likely had a virus, and was sent home. Thursday I got stuck and couldn't stand up. I had to fall on the floor and crawl to the phone to get help. I was admitted to the hospital that evening after the results from my spinal tap showed I had elevated protein levels. By the end of the first week I was paralyzed from the waist down. At this time I also started 5 IVIG treatments. The second week I crashed and was intibated, then had a tracheotomy. During this time I also had 11 plasmapheresis treatments. I spent almost 4 weeks on the vent and was very excited when I was being weened off and was capped so I could talk! I finally had a voice and just being able to say hi and thank you to my respiratory therapist was an amazing moment that brought me to tears(weening as many of you know can be scary and my RT's were all very supportive.). Next, I was off to the rehabilitation floor where I spent the next 5 and 1/2 weeks(I had OT and PT 6 days a week, three hours a day). At first, I was terrified of therapy because every little move I made was painful. Then it was as if a switch went off in me and I not only wasn't afraid but was pushing as hard as I could. I even started a little game with myself, if I did one exercise for 5 minutes one day then the next day I would do it for 10 minutes. One day I was doing a weight bearing exercise in the parallel bars and decided I would try to walk, and I did!! It was so exciting, everyone was cheering!
At the end of December I was released from the hospital. I was still in my wheelchair most of the time but I could walk with the walker short distances. Once out of the hospital, I started out patient therapy three days a week(two hours each day for 4 months) and had a personal trainer two days a week. Two months after being released from the hospital I stopped using my wheelchair and walker. During this time, I was looking up different resources for GBS and came across the GBS-CIDP Foundation International and saw that they would be having a 5k and Miracle Mile in Charlotte, NC. I decided right then that I would not only go to the race but run the 5k. The day of the race, I had only been walking without my walker for 3 months and only running for 1 month. I ran the entire race without stopping!! It was the most difficult thing I have ever done and the most exhilarating!
In October of 2009, I celebrated my year anniversary of being diagnosed with a tattoo, a blue awareness ribbon for GBS on the inside of my ankle. Every time I see it I am reminded how lucky I am to be healthy and walking, it pushes me do always keep moving. I also went back again this year and ran the 2010 GBS-CIDP 5k beating last years time by over 3 minutes.
Today, I am very involved in raising GBS awareness and giving support to those suffering GBS both online and in my community. My amazing nurses, doctors, therapists, friends, and family made a huge impact in my recovery and the person I have become today......a SURVIVOR!
Thanks,
Jen DeWolf
