Tonight I am sitting on my couch. Everyone else is sleeping,. This past week has been a particularly trying one. It seems like my health issues have all popped their heads out to wish me a "Happy 4th of July".
Needless to say, this may not be the most positive entry I've ever written. But, as most of us have come to realize, life isn't always a bowl of cherries. And just incase you were wondering, I'm not a super hero. I have writen before that I am a blind woman, but I'm not sure if I've ever written about the fact that I have a rare condition known as GBS (no not Group B Strep,) Guillian Barre Syndrome. Here's that story.
When I was 15, I had come down with what I thought was the flu. I had been home from school for a couple of days and in bed. I got up to go to the bathroom and felt so weak I could bearly stand. I thought not too much of it as I made my way down to the end of the hallway. I figured I was just sleepy but when I fell and couldn't get back up; that's when I knew there was some thing wrong.
I called out to my Dad who was sleeping since he was to get up and leave to work the swing shift that afternoon. He and my brother carried me to the care and drove me to the urgent care center. There, the physitions poked, prodded, and determined that I needed to go to the hospital. I was taken by ambulance to the Emergency room at UCI medical center. Doctors asked me what seemed like a gozillian questions; ranging from my name to the last 10 presidents. After more poking at the bottoms of my feet, pressing them with tuning forks, testing of my reflexes (including 1 neurologist who insisted on checking my pupals even after having been told several times that my eyes are prosthesis due to RB), and finding that none of these things made me move my legs, I was admitted to the ICU. My parents were told that the doctors were not sure what was going on and that further testing would be necessary to determine what was happening to my body.
CT scans, MRI, x-rays, and yes even a spinal tap or 2 were performed. Then we were told I had Gullian Barre Syndrom. I regained movement after a course of IVIG (intravenis ImunoGlobulin). I was released in 5 days and GBS was ruled out because during my hospital stay I had continued to breathe on my own. None-the-les, it took a few weeks before I was myself again.
Fast forward 10 years and I'm sitting in the livingroom having a lighthearted conversation with my mother in law and eating a microwaved dish of ravioli. I stand to put my bowl in the trash and my fork in the sink. I bid her a good night and head off to my room to get ready for work the following morning. I'd beeln feeing some tingling in my hands and face over the past few weeks, but since the company was bringing in a new system; I figured it was just stress. but, as I made my way to my room I began to notice that my legs were growing heavy. Heavier and heavier as I gathered my outfit and other belongings for the morning. Until, I realized that I was stomping, not walking but stomping so much that the house made a booming sound with each of my steps. I grew even more concerned when I lay in bed and had a hard time bringing my legs to comfortable sleeping position. By this time, 20 minutes had gone by since I said good night to my mother in law. But when I stood to test what I was almost already certain of, I knew I was going nowhere on my own.
My husband and brother in law carryed me to the car and off to the ER we went. Leaving my children sleeping in their beds because my husband's parents lived with us and after all it was an emergency. I spent the 1st week undergoing the same battery of tests I'd underwent 10 years before, the same course of IVIG, but this time I was not released in 5 days, not 10 days either. I stayed in the hospital for 3 and a half weeks. Away from my then 6, 5, and 2 year old children. They came to see me when My parents had a chance to bring them. See, they took care of my babies while I was in the hospital and while Hubby went to work, then to see me afterward.
When I was released I went to an in patient rehabilitation center where I stayed for about a week before I begged and pleaded with my therapists and doctor to go home because I missed my husband and babies so much.
It took me months to work my way out of the wheel chair, and still more months to walk with out the 2wheel walker. But I made it. I got rid of the equipment, threw away my support braces I had bought from a medical supply store, and all seemed well. I figured the fatigue would go away in time, I forced myself to keep up, and I did my absolute best not to say more about it.
But, the twitching still happens, the muscles still hurt, I still tire easily, and I don't wear flat shoes often due to the fact that my feet are not comfortable in them. I was told that recovery would be 3-5 years, yet here I am still feeling the same old things. And I wonder if this will ever completely go away. I have good days and not-so-good days, but I try to keep going. I'll be back to using a walker soon but this time for help with long walking distances, I do my best on my good days to make up for time wasted on days I spend in bed or on the couch unable to push past the fatigue or other discomforts. Sometimes I teach from my bed propped up on pillows, and even manage some cuddle time during those days.
So to my hubby, my kids, and anyone else who my not-so-good days have affected, I sincerely appologize. And if you haven't had the displeasure of dealing with my slow movement, need for untimely pressure massage (once in the middle of the grocery store), or my occasional groans due to muscle cramps; I'm glad for you.
GBS affects 1 in 70000 people in the US, it is linked to the flu shot, but usually occurs in military personelle since they are subjected to experimental testing and vaccinations during deployment to 3rd world countries. My case however, is a strange one. because, I have never had a flu shot in my life, and have never been in the military. I remember one of the hospital nurses making a joke; she suggested I play the lotery the 1st chance I got, seeing as how my odds were so high. lol that was a laugh that came when I really needed it.
So, I have more to deal with, but I'm still a mom, wife, daughter, teacher, handy woman, maid, chef, and nurse, I am a MommyOf3Cherubs. But most of all I'm blessed because I am 1 of God's children. Oh, and I can do _all things through God who strengthens me.
Thanks to anyone who actually read through this whole thing. I hope it didn't bore you too much. I guess sometimes I get to writing and well, you know how that goes.
Until next time my friends, God bless you and remember to make it a great day!
P.S. My spelling is incorrect throughout this entry and for that I appologize, but it is late and I'm sure Google or some other internet resource has the correct spellings. Thanks for understanding.