Tuesday, May 14, 2013

Mini Miracles: How I've recovered from CIDP

I'm in the process of becoming an on-call person for the GBS/CIDP foundation, meaning that I'll have the opportunity to talk with people that are suffering from the illnesses I had. I'm thrilled! I can't wait to help others the same way this great organization has helped me.

I thought it would be a good time to look back on how far I've come and share the things that have aided my recovery.

1) IVIG Treatments: Called liquid gold, this treatment costs roughly $10,000 a bottle. I received a 5-day treatment once a month over six months. It's administered through an IV over 6 - 8 hours. This was a big help in the beginning. I heard in a recent CIDP lecture that it only works on about half of CIDP patients. Here's to being in the lucky half.
What $10K in liquid form looks like

2) Plasmapharesis: It requires either a port surgically installed directly into an artery, or two, good strong veins where they will remove your blood, filter out the plasma and replace it with new plasma/white blood cells that are not attacking you. They tried this treatment on me, but couldn't get enough flow through my veins and I declined the port. Reportedly though, this is effective in all GBS/IVIG patients. This was experimental when I was 10 and had GBS. My doctor didn't give it to me then.

3) Prednizone: This is a steroid treatment taken via a daily prescription. I did this for 3 or 4 months. It did help, but I couldn't wait to get off it. I had trouble sleeping, was irritable and gained significant weight. Boo.  Also we wanted more children, and there is some risk associated with this drug. I was well enough that I didn't think I needed it anymore.

4) Physical Therapy: I had drop foot in my right foot, meaning it was paralyzed and wouldn't lift up. I had to do 6 months of therapy with an adjustable brace to overcome it.

5) Better Rest: Rest is SOOOO important for a GBS/CIDP patient. My husband and I researched beds and pillows until we found the best possible combination for the absolute best rest. We did end up choosing a Sleep Number bed and a contoured gel pillow. This is not an endorsement of either, however. Sleep is extremely subjective and it's crucial that you do the research and find the best possible combination for you.

6) Alkaline Water: I discovered Kangen Water through my BIL. It's a machine that makes alkaline, anti-oxidant water that has anti-inflammatory properties. After I started drinking the water, I found that I slept better and had improved feeling in my limbs. In general however, drinking lots of water helps your body do what it does best, correct itself. So stay VERY hydrated, it helps.

7) Anti-inflammatory Diet: Staying away from sugar and eating whole foods, with lots of vegetables and minimal processed foods also helps. There are several sites with great recommendations of this subject.  Here's one: http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

8) Yoga: When I finished my physical therapy, I thought I might try yoga. My work offers it for free two times a week in our office, so I decided to start there. The stretching and strength exercises have been incredible for me. In fact, one night after Yoga, I noticed that I could I could bring my formerly paralyzed right pinky finger in and lay it flat. I haven't been able to do that for years!!!! In this picture you can see my left pinky finger is still bent and somewhat paralyzed. That's how my right one was. Amazing!!! Make sure it's a fairly gentle yoga class until you're ready for more. I was told to look for Restorative Yoga. 
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9) Peace: I've made a study of peace and how to have more of it in my life. I've turned to my scriptures and read some books on the subject. I've really tried to gain perspective when something happens, so I don't get so upset over little things. Still working on that last part.

Happy Thought: Though I still have to watch my stress levels and get plenty of rest, I really do feel like I'm getting better all the time and I'm thrilled with how far I've come. I'm also grateful to an incredible family (mostly my sweet husband) for their support and my Father in heaven for His.

Thursday, April 11, 2013

From Fun to Unforgettable

Layne and I love the Exes, a comedy on TVLand. He got us tickets to go to a taping last night. It stars Kristen Johnston from 3rd Rock From the Sun, Donald Faison from Scrubs, Clueless and Remember the Titans, and Wayne Knight, who played Newman on Seinfeld. We love this show and we were not disappointed. It was hilarious.

File:The Exes intertitle.jpg

Here's where it gets awesome. The stars, especially Kristen Johnston, kept coming up to talk to the audience. As she approached one time, I yelled, "Kristen, I love you!" She's awesome. Not only is she a two-time emmy winner and movie star, but she's also a New York Times Best Selling author, writing a book all about how she overcame so much and kept going when people told her she'd never make it. She was so warm and gracious to all of us. Look how much she's accomplished and this beautiful woman was the most natural, down-to-earth and genuinely kind person. She was amazing and I was totally impressed.

She approached and I yelled again, "Kristen, I was paralyzed and now I'm better. You're such an inspiration! You're awesome." She asked me my name, how I become paralyzed. I gave her a brief explanation, saying it's a disease similar to MS, that I had it twice at 10 and 33, but that I'm better now and that she's an inspiration to me. She asked why. I told her that all she had accomplished, her book and how amazing she was to everyone made me want to keep trying, to never give up. She said that I had moved her, that I almost made her cry.

Kristen's Book
She called me down out of the audience and hugged me. Later on she gave me her book and signed it. She called me down another time too. We talked three different times as she approached between scenes. I told her that I wanted to write her and tell her my story. She said to write her. In fact, after the show was over, she made a point to blow kisses to me, wave goodbye and tell me to write her again. She is awesome! She didn't have to do all that. What an incredible, genuine, amazing, absolutely beautiful person. I was so impressed by her.
Her very touching message to me and yes, she kissed it!
As we were leaving, Donald Faison, who had also approached the audience several times and spoke with us, was signing an autograph. We happened to be standing right there, so Layne quickly demanded a program. I gave him one as Donald was about to leave. Layne asked for his autograph and Donald asked for a pen. A frantically searched my purse for one and came up with a Sharpie! Score. I told him we LOVED him on Scrubs and Layne told him he was the funniest guy on television. He signed and handed us the autograph. Earlier I asked him if his dimples were real. He said he paid good money for them, and then laughed. "No, they're mine. No one has ever asked me that!" What an awesome guy, and seriously, he is so good at everything he's in. We love him.
Donald Faison's signature, a real class act
Happy Thought: Kristen is a genuinely good and beautiful person. This night went from fun to completely unforgettable and it was all because of her.

Monday, March 25, 2013

Why I Didn't Ask Why

Recently I decided to enter a contest Time Out for Women are having for the Pasadena event I am going to. They asked you to tell them about a journey you’ve taken, something awesome you’ve accomplished, or what you’re doing to live a little HIGHER. Now that I'm doing so much better, I thought it was a good opportunity to look back on all I've been through with CIDP. I hope you enjoy it.

Me and Hyrum at Disneyland with my parents
UPDATE: I WON!!! I totally WON! I get two front row seats and they're going to post my story on their website. Hooray! Here's the story I entered:

Why I Didn't Ask Why 

Me and my sweet prince on his chariot

My name is Stacia, which means Resurrection or “one who will walk again.” That’s ironic because I’ve been paralyzed twice in my life. At 10-years-old I was diagnosed with Guillain Barre Syndrome, an auto-immune disease where your immune system attacks your nervous system. I was completely paralyzed and weak from head to toe, my lungs collapsed (diaphragm was paralyzed), couldn’t swallow (those muscles didn’t work) and had double vision (eye muscles wouldn’t focus). I spent two months in ICU and two years recovering.

I relapsed at 33 in February 2011. At its worst I had weakness and paralysis in my legs, hands and double vision. I was diagnosed with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), the chronic form of GBS, meaning this would always be there.  

The First Signs
I’d felt gradually weaker during our visit to my parents’ house Christmas 2010 in Texas. At the airport as I got off the escalator on our way home to California, I tripped, falling to my knees as I held our 2-year-old son in my arms. I looked up at my husband in horror and cried, “I can’t feel my legs!” I was terrified to realize I was numb from the waist down. This could not be happening again.

Layne helping me walk 9.3.11
A Sacred Trust
My sweet husband, Layne was left solely to care for me, including bathing and dressing me as well as caring for our son and the house. He even flew in my mother to help that first week. Later after working all day in Long Beach, he would drive to Irvine to pick me up from work, an hour and half round trip. Other family helped as well, but Layne shouldered most of it. I was worried he would hate me for the burden I’d become. When I asked him about it, he confided that his love for me had deepened BECAUSE he’d had to care for me. In turn, I learned that I could trust and love this man even deeper than before.

A Tender Mercy
While still coping with my disability, I was devastated to learn that I’d miscarried our second child at 14 weeks. When I returned to work the next day, a celebrity, Bethany Hamilton, was visiting our corporate office. She was very kind to me, pausing to talk longer than she had the rest. I didn’t even notice that she was missing an arm. Later I learned she was the person the movie, “Soul Surfer,” was based on, a surfer from Hawaii who went on to become a pro surfer after losing her arm in a shark attack. Meeting her that day was a reminder that triumph could come from loss and that my journey wasn’t finished.

Mom, Dad, Hyrum and me with my walker
Ultimate Trust
After I’d lost my baby, my dad called to check on me. He wondered if I’d asked the Lord why all this was happening. I told him no because asking why wouldn’t change anything. It wouldn’t heal my body and it wouldn’t bring my baby back. I thought asking why would tell the Lord that I didn’t trust Him, that I didn’t feel secure in His care. I trusted Him then and I still do. I know that I have a Father in Heaven who loves me, who has plans for me and who can perform miracles.

A Happier Ending
Two years later as I write this, I am almost entirely better. I still have some limits, but I can do most of the things I could before. The Lord has healed me twice and though a relapse always looms, I know He could heal me again. I have the most beautiful husband and son, and we’re trying for more. Although I was laid off from that job in February 2012, I literally received a job offer the very next day, making more money closer to home. The Lord is always aware of us. He knows our pains and sorrows more acutely than anyone, and no one is better at caring for us than He. Perhaps now I’ll be better at recognizing the enormous blessing our trials really are.

Jacobsons 2012