Saturday, January 28, 2012

Paralyzed at 10, and again at 33

Welcome to my blog! Aside from, "Why are you SOOO cute?", the first question I usually get lately is, "What's wrong with you?" I have CIDP (Chronic Inflammatory Demylenating Polyneuropathy). It's an auto immune disease that attacks your nervous system causing paralysis/weakness/numbness in your legs, feet and hands. I also had double vision for about 6 months. Mostly I had trouble walking, at times my right leg wouldn't lift up, my foot would roll to the side or refuse to lift up. I couldn't feel most of my fingers and would have to switch eyes so I wouldn't get headaches. My stamina was also shot. At first, I'd get wiped just taking a shower. It's been a year and I'm doing better, not using the walker very much and even drove for the first time in over a year. This is a chronic condition, so it will always be there, but it is getting better.

This isn't the first time I've been paralyzed.

It first happened at 10 years old when I had GBS (Guillian Barre Syndrome). Then whatever wasn't totally paralyzed was too weak to move. I couldn't walk or move at all really. I did manage to lift a finger or roll to the side a bit. My lungs had collapsed (paralyzed diaphragm), I couldn't swallow (those muscles wouldn't work) and I was seeing double cause my eye muscles were somewhat paralyzed too. I was in ICU for two months and at home learning to walk etc. for three months. It was a couple years though before I was back to normal.

I had brief periods of numbness/weakness where random things would stop working like half my tongue or a foot, but it usually came back within a week. I remember coming home from high school when I was 16 and half my face wasn't moving. My mom wanted to take me to the hospital, but I told her it was fine - not a big deal. She said, "Staci, I know that being paralyzed for you is normal, but for most people it's not." I laughed (well, half my face did anyway) and allowed her to take me. Turns out I had Bells Palsy.

At one of my first jobs, my co-worker could tell when I was feeling stressed because I would start holding my face, mostly my left side. It was because I couldn't feel it. It was at that job when at one point my left leg stopped working right (couldn't feel it, it would drag when I walked) and other general numbness took over (face and hands too). I had a bunch of MRIs and a spinal tap done. It all came back negative and eventually the symptoms subsided after a few months. That was 2004 I believe.

That's why when things went south last Christmas (2010), I prepared to wade through it and wait for things to come back again. I'm still waiting. But that's enough for now. More to come later.

Happy Thought: I've had to learn to walk three times in this life. At least I'm getting better at it. (Stupid gravity.) I really need to learn to fly - which by the way, is at the top of my "Things to do when I'm resurrected" list.

11 comments:

  1. Oh my goodness, I had no idea you suffered from that. I am glad to hear that you are doing better. I just joined your Blog to stay up to date. Here's mine as well. http://epilepsyfoundme.blogspot.com/

    Your in my prayers and I hope you continue to do well and stay positive.

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    1. Thank you Jonny. I had no idea you struggled too. I'm following your blog so I can keep up on your story. My thoughts and prayers are with you too.

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  2. Your story of endless strength is truly inspiring. You can bet I will be sharing it with my daughter who feels alone in her daily struggles of her own chronic illness right now. Thank you again for sharing your story. It is beautifully spoken. May you continue to make progress each and every day.

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    1. Thank you for your kind words. I'm touched that it helped you. Chronic illness build its own kind of character and my heart goes out to your daughter. I'm sure she's a hero all her own. If you have a blog, I'd love to follow it. What is it? Wishing you both all the best.

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  3. Stacia your the best! Always so positive. Love ya!

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    1. J'lene, you've always been a source of encouragement and strength for me. Love you darling and thank you being such an awesome friend. Congrats on your new baby!

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  4. Stacia,

    first of all I have to say that you have a beautiful spirit! You are a strong woman!! I am a people watcher by nature. I learn a lot from those around me. I sometimes look at women with their big families and crammed schedules and often very organized and clean homes and think they could run circles around wonder woman. But there is a kind of woman in your that though your legs may not run and your human strength may appear weak...your spirit is strong enough to move mountains! It is inspiring to read your thoughts on life and your story. I think it is wonderful that you share all you have learned. When I look at my son with his physical challenges I am often reminded that we are not our skin. We are not our bodies. It is a spiritual experience for me just to look in his blue eyes and see the special spirit he is. While I've been working hard just to be heard at the capitol this week for his cause, one quote kept coming to mind to encourage me. It came from the conference talks. I've been studying them every day to try to stay strong and focused. Sometimes just having the courage to get up and go another day trying to do what is right and reading those messages is enough strength and courage to go another day. I call myself a real very human down to Earth person. I've been through tremendous trials in my life that have tried my faith and have shown me where I can be broken. It means so much to me when other women share their stories with me of conquering and enduring their own trials. Faith inspiring stories always strengthen me. You are a bright light to all who know you. I wish I could have known you better. Hang in there! I often put your name on the temple prayer roll and I think of you and hope you will always keep that positive attitude you share. Life is so tough but temporary. Your endurance of these hard trials will prove immeasurable blessings in the life hereafter. If you and Layne get to the temple some time soon, go do some sealings ( or sit in an listen if you can't kneel there) and listen to the promises that come through your faithfulness. I just went with Kev last week and the sealer actually stopped and felt impressed to mention that we should pay close attention to the blessings he was naming and that it is amazing the love and the great blessings the Lord has in store for us if we just endure well in this life and keep our covenants. We were there doing work for my great great great grandparents. The whole experience was so spiritual. I have a really fortunate situation because I only live 5 minutes from two temples. It made me feel guilty for a minute that I had made my grandparents wait 12 years for me to finally get to temple from start to finish to do all of their ordinances. They had already waited so long. But it also felt so beautiful to hear the blessings that would come if I would just keep enduring and keeping my covenants. I'm rooting for ya! You are amazing! Bonnie

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    1. Bonnie, thank you. Thank you for your spirit, your example and most of all your friendship. You are a rock star in my eyes!

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  5. You are the most amazing young woman I know! Since faith can move mountains, surely your body will respond as needed! You have improved so much, I pray the improvement will progress and be here to stay! You are an inspiration to all of us!

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    1. Thank you Sharon. I've been blessed to have you in my life. I don't know where I'd be if you hadn't helped. You're an absolute angel.

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  6. Stacia I just found your blog from facebook. It's been way to long!!! I miss you soooo much!! Thank you for sharing about your condition, I will be praying for you! You are seriously so amazing and not to mention one of the cutest and funnest people I've know. Thank you for being so postive and such a great example of Faith! I love ya girl, and hope we can talk soon, and catch up.

    P.S. I'm so proud of you for pressing forward and I know it won't be long before you're dancing again!

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