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How I learned to Live with and Love Dystonia

#56-Living Joyfully with the Neurological Disorder Dystonia- Acknowledging, grieving yet embracing disorders, disabilities and differences and counting them as Blessings? With Guest Cheyenne Raineri

How I learned to Live with and Love Dystonia

How I learned to Live with and Love Dystonia.

Cheyenne no longer hides her scars and braces

Meet Cheyenne

Cheyenne began experiencing symptoms at age 6 of loosing control of her motor skills. After two Years of misdiagnosis and doctors claiming she was doing this to herself she was finally diagnosed with “Dystonia”. A Neurological disorder that affects your ability to control your muscle movements.

By the time she was diagnosed she could no longer walk or talk.

Deep Brain Stimulation Surgery

She talks about being part a a trial where they did, Deep Brain Stimulation Surgery. It now helps her control her movements. She has pacemakers that power the stimulaters they placed in her brain. Miraculously she began speaking again after her first surgery and eventually walked again a year later.

Listen to the Podcast on Spotify
Embracing the past, present and future with joy

While Dystonia is degenerative she is now in her early 20’s and living life to the fullest. She shares about what it was like to loose the ability to walk and talk then gain it back again. How she navigated the waters of high school and being bullied.

Cheyenne and her husband Ludo at their wedding
Cheyenne and her husband Ludo

While she wasn’t angry at God, For a while she wondered what she did wrong to deserve this. One thing that gave her perspective was knowing there were still others who had it worse than she did.

Here Grandpa always told her 

“You complain about your shoes , but there is someone out there with no feet”. 

Takeaways from Cheyenne’s perspective
  • This is your life and you can acknowledge the hard you are walking through, just setting boundaries that don’t allow you to live in that complaint. 
  • She has felt self conscious at times but says it’s part of being human and takes work to gain that confidence, we are our own biggest critic
  • Have and cherish at least a couple foundational relationships (Safe spaces)
  • Sometimes the simplest events can change everything 
  • PRAY! Get alone and talk to God for hours if possible!
  •  You are not alone
Dreams Coming True and hope for more

We talk about how she met her French Husband Ludo, who God has used to bless her both in marriage and adventures beyond what she ever thought possible! She Loves Jesus and is incredibly joyful and gives some real tips on living with disorders and disabilities with joy! 

Cheyenne and Ludo on their trip to Europe
Cheyenne and her husband Ludo on their trip to France

Cheyenne’s Favorite Scripture:

‘What then shall we say to these things? If God is for us, who can be against us? ‘

Romans 8:31

 Wether you or someone you know is living with a disability or just walking through painful things I know our conversation will give you a dose of hope! SHARE with anyone who might need a little hope and joy today!

You Can Follow Cheyenne on Instagram @Cheyenne_Raineri

If you want more inspiring stories of women living joyfully in painful circumstances check out:

Walking with God through Widowhood

Living with Joy and Grief ( A Spouse with a Brain Injury)

Blindness and Body Image

Suddenly Single where do I go from here?

This Post Has 2 Comments

  1. Janie Potter

    Beautiful website with meaningful topics. Thank you Caroline!

    1. Caroline

      Thank you so much Janie! You are such a Blessing!

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