Guillain Barre Syndrome

Guillian what? Guillian who? Pronounced Gee-an Bar-a. I had never heard about it either until one year ago. One year ago exactly. 

Thought I'd share an expert from my journal:

March 9th 2010:

My Jasmine's 18th birthday. Oh what dreams we had for this day, we were going to be knee deep in wedding plans. It was going to be the best time of her life. Instead here we are...in this hospital. She will go to Nate's grave and then come back to spend the night with her momma who is learning how to walk again. She doesn't even want a birthday. I don't blame her.

I'm still trying to figure out exactly how we got to this place. I had a touch of the flu and started feeling a
little better when all of a sudden my body started shutting down. Guillain Barre or GBS is an auto immune disorder in which your immune system attacks the nerve system. Basically short circuits it, that's what it feels like anyways. The tingling and numbness feels just like a visit to the dentist gone wrong. Feels a lot like Novocaine is wearing off your whole body, except I can hear an electrical sounding buzz in my head that makes me feel crazy.

                  Me a few days in the hospital...not my most glamorous moment, but you get the idea.

Thank the Lord for doctors that thought I had a stroke or MS and ordered every test possible. A spinal tap is the only way to confirm GBS, high protein in the fluid will confirm it. Immediately they got me going on what I call a miracle treatment, IVIg. It's usually a five day treatment, one bag of this blood product given every day. For me it's working. Since half of my body is paralyzed including my face and the other half is weak I need Physical, Speech, and Occupational Therapy.

Although my body feels like it's failing me, my mind is completely normal. Trying to wrap my head around what is going on has been one of the biggest challenges. I've never even thought about the little things we do everyday. I'm hungry, lets eat. Well no longer...we need a soft diet and TURN your head when you swallow. My head remembers how my body used to function and if I could WILL myself to do it again I would. Progress is slow but it's still progress.  I choose to be positive.

March 9th 2011.
Thank you Jesus for your healing power and for giving doctors wisdom. The support we had over the last year was unbelievable. My husband is my rock. My kids are such huge help, my sisters had made a schedule and since there is 7 of them it worked out perfect and someone was here everyday. People from everywhere brought us meals, sent cards, and flowers. I cry when I think about it. The love of God is evident in the body, and YES you ALL blessed us and showed his love. Thank you all from the bottom of my heart.

Life is good. I am pretty much back to normal. Still get tired but maybe that's just old age? Praise God I can walk and do "life" again. Jaz had her birthday in Scotland, where she has been for the last 6 months. She's doing good, pressing into God and he has restored her joy. My kids are still awesome, can't imagine life without them and my babe still makes my heart go boom boom boom. Life is good.

So today....live in the moment. Love your health, love your kids, and love Jesus most of all. :)

Be blessed....
Lorinda