Tuesday, March 24, 2009

i just wanna be okay, be okay, i just wanna be okay today



As most of you know, I had a seizure on my birthday...sucky! Don't worry though, I'm declaring it birthmonth! Hooray! Thanks everyone for their calls, cards, packages, e-mails, facebook messages, and general well-wishes! Much love!

I've known this for quite a while....but...drumroll please...
I'm getting a VNS on April 10th!!


Woohoo!! I am so excited! A VNS is a Vagus Nerve Stimulator. This is from the website:

Seizures occur when there is a sudden malfunction or “short circuit” in the nerves that carry electrical signals from the brain to the body. Depending on the location of this abnormal electrical activity within the brain, different physical symptoms can occur. (Learn more about seizure disorders.)

The VNS Therapy System works like a pacemaker to help control these electrical signals. The VNS Therapy generator is implanted just under the skin in the upper chest. Two thin, flexible wires are attached to the left vagus nerve in the neck.

The generator sends small electrical pulses to the vagus nerve, which then delivers the pulses to the brain. This gentle stimulation helps to prevent the electrical irregularities within the brain that cause seizures. Click here to learn more about the VNS Therapy System implant procedure.

The procedure is a simple outpatient procedure and it will happen April 10th at 9 am. After that, my life will change. It has to. I'm asking everyone to join in a special fast for me on April 5th, the previous Sunday. (I know it's also conference weekend.) If you don't or can't fast, please keep me in your prayers. All of my eggs are in this basket and it has to work. I'm out of options, out of patience, and out of fight. This HAS to work. Please pray and keep all extremities crossed. As for the mean one out there, please keep all mean comments to yourself. Nobody forces you to read this, and I don't need your sucky energy! But, I digress...back to more positive things!

These are some testimonials from a brochure:

Jason: Golden Valley, Minnesota

In June of 2003, Jason was a newlywed, training for a career in law enforcement. Just months later, he became gravely ill with viral encephalitis. The disease left him with a severe seizure disorder.

Medications controlled Jason's seizures, but they left him unable to do much more than sleep. Fortunately, his wife and doctors thought he deserved more out of life and sought out other options.

In January 2005, Jason recieved the VNS therapy implant, and since then he has been seizure free. He has been able to reduce his medications, rejoin the police academy, and team up with his wife to train for marathons. It's a great comeback for a man who wasn't expected to walk again!


Noel: Rome, Georgia

Noel started experiencing seizures when she was 15. Her doctors hoped she would grow out of them, but instead, the seizures became more frequent and more severe. Medications didn't seem to help. Noel felt tired and depressed, and her family and friends saw her vibrant personality disappear.

After she received the VNS Therapy in 2003, the seizures and medications that Noel needed decreased. She was able to drive again and soon returned to college. No longer constrained by her seizure disorder, today Noel feels free and ready to take on the next stage of her life.


John Paul: Rocklin, California

One moment John Paul was reading package labels in the supermarket, and the next, he was waking up in an ambulance. He had been unconscious for more than half an hour after suffering a very severe seizure-- his first at 53.

Over the next six years John Paul continued to experience seizures, eventually having to go on disability from his position as a church pastor. Taking as many as 8 pills a day, he experienced side effects like rashes, slurred speech, and extreme sleepiness.

When his doctor told him about VNS therapy, he was eager to try it. Since starting VNS therapy in 2005, he has had only two seizures and has been able to lower his medications. Today John Paul thanks VNS Therapy for enabling him to return to the simple activities of life-- and to his life's work.


And soon...

Chelsi Johnston: Logan, Utah

Chelsi had her first seizure when she was 14. She was put on severe medications that controlled the seizures, but made her hair fall out, gave her severe acne, made her extremely tired, and depressed, and even made her jewelry tarnish.

After high school her doctor told her the medication was damaging her liver, so they switched to a less severe medicine. The frequency of her seizures increased over time to about two a year, but the side effects of her medication were lessened and she was able to enjoy an amazing college experience.

Chelsi's seizures increased dramatically after a car accident in 2005. She graduated college and married in 2006 and once again, had to change medications. Taking 13 pills a day, and having as many as three partial complex seizures a day, and as many as three grand mals in one month, Chelsi was very tired and sick. She was unable to do much besides sleep, having to work from her home when she felt well enough. She didn't have enough energy to do the things she loved to do and felt like a prisoner in her body.

After recieving the VNS in April of 2009, Chelsi has been able to decrease her medications and her seizure frequency has decreased. She has been able to go back to work, to drive again, to excercise again, and to have the energy to do all of the things she once loved to do. She feels like the woman she longed to be. She and her husband have been able to enjoy life to the fullest, traveling, buying their first home, and even starting the adoption process. Chelsi thanks VNS for setting her free!

14 comments:

Rich's said...

Hooray!!!! I am so glad that you are able to get this process done. Coul and I will keep you in our prayers!! Much Love,
Kelse

Southam's said...

Chelsi that's so neat! I really hope it works for you. If I weren't breastfeeding, I would DEFINITELY fast with you. But dont worry, I will definitely keep you in my prayers. Good luck, hun.

Tati

Kari said...

Congratulations! I so so hope this is the answer to it all.

Julie and KC said...

Yay!! I'm so glad you have a date set and things are progressing. We'll definitely fast and pray for you. Love you, Jul

Mandy said...

Good luck Chels! I'll definitely keep you in my prayers!

Chad and Linds said...

Hi Chelsi, this is Lindsay (Dowden). I just want to tell you that my thoughts and prayers are with you. I think your blog is so cute, and I like see how you are doing. I run into your cute mom every once in a while ( usually at the Quilted Bear, Ha ha) Keep in touch!!
Much love, Lindsay

Heidi said...

That's so exciting! I hope that it works and your seizures will go away! I'll keep you in my thoughts and prayers, good luck!!!

JeriLynn said...

Ah, Chelsi, you sweet thing! I'm so glad you're doing this! I will fast for you!

I'm so sorry you've had so many seizures! When did you have that car accident? How crappy!

Thanks for your joy about me having my own car. I know you understand how I felt. Someday you'll be able to drive again!

I love you! And I agree, I'm sorry we didn't hang out more. But I'm coming to Logan when we visit Utah in May. I will surely see you!

Candace Thomas said...

I can't wait...I think you will do great! I used to work for a few neurologists and we had some patients that had great success with the VNS. Yay! I will definately be thinking/praying/fasting for you...good luck! Maybe we can even do lunch when you are feeling up to it.

mommy princess said...

Chels, you know I'll pray for you. I'm really hopeful that the VNS will work. Just know that no matter the outcome our Heavenly Father has a plan for you. And your family and friends love you. You have been a blessing and inspiration to me and so many others. If anyone deserves a new lease on life its you!!!
xoxo

Devin M. said...

Hello darling. I love you and I'll be sure to keep you in my thoughts and prayers. You are amazing and I miss being your pseudo-roomie every day. :)

P.S. I'm trying hard to follow in your footsteps and make tech writers everywhere proud. :p

woodworthfamily said...

Dearest Chelsi! You are such an awesome, strong girl. I admire you so much! Good luck with the surgery. I hope all goes well. We will be fasting for you! Love, Lisa

Tyler and Sunni said...

Chelsi and Spence,
Sunni and I are way excited for you and are so fortunate to be a part of your family. We will be praying every day for you.
Tyler

Kami said...

Hey, this is Kami (Zundel) Bachison. I came across your blog through some mutual friends'. It is so fun to see you and good to know you are so happily married. I am sorry to hear about your medical troubles. I know that you are strong, though, and it will work out. I have fasted for you and am thinking and praying for you as your surgery nears. Good luck!