I believe we can restore and support one another by sharing our beautiful, yet sometimes painful stories with each other. I know what it feels like to live with pain on the inside but look fine on the outside, and I’ve struggled with it since 2013. I was diagnosed with Devic’s disease (NMO) in 2019 after they found five brain lesions and optical neuritis and was diagnosed with lupus in 2013.

This was my longest stay at a hospital in 2019 during my 2nd relapse of what they finally diagnosed as NMO. I’m grateful for good doctors and nurses. Also, it was the first time I had taken Ativan– my hallucinations were hilarious.

The summer before my diagnosis in October, I had lost sight in my left eye, was throwing up everyday, couldn’t eat, and had a migraine for close to two months. They couldn’t find anything wrong with me. When October hit a couple months later, I lost vision in my right eye and had extreme head pain. That’s when all my MRI scans showed brain lesions and optic neuritis.

Taking matters into my own hands.

In 2019, I thought – somethings gotta give. I was so tired of being sick all the time so I changed my lifestyle. You can read that story here.

The sole reason for changing my way of eating and living is simple. I was forced to change for the better when I was diagnosed with a rare disease that affects my central nervous system. My choice of lifestyle is a result of being scared to death that I would become permanently blind or disabled, and my story goes from there.

The benefits from healthy living have restored my body. I rarely get headaches, body discomfort, and fatigue. I have gained energy and happiness. And though I can’t control my diagnosis, I can control what I feed and put on my body!

I’m on a journey of fighting for my health every day, and I want to tell the world that though we can’t control illness,, we can control what we feed our bodies. And even if it helps in some small way, we have the power.

Friend, I’m so glad you and I are here, because we are stronger together. I look forward to hearing your story.

64 thoughts on “Rare Disease Patient Turned Clean-Living Enthusiast

  1. He has set a line for the sea – our pain, sickness, and suffering – that it can not pass. He has said “Thus far shall you go and no farther, and here shall your proud waves be stopped”.
    We do not know where he draws these lines, (though we want to!) but it is enough to know that he has. At some point, he has looked upon our suffering and said “Enough!” And until then, He will be Enough for me.
    May you be strengthened in faith dear siblings in Christ as you press into Him through your pain.

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  2. I’m glad you visited my blog today or I would not have found yours! I was diagnosed with neuroendocrine cancer, a slow-growing incurable cancer, the same month that your “temporary disease” appeared. So glad that you are also resting in God’s loving embrace!

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  3. Savannah, I was drawn to your site when you chose to follow mine after reading my post on chronic pain and writers. Of course, the words “chronic illness” on your menu bar caught my eye. I would say I’m sorry about your diagnosis, but from reading this post I understand immediately that you know Who is in charge of your body, health, and mind. I’m so glad! He’s my physician and friend too. So glad we’ve crossed paths and I look forward to reading more of your story and sharing mine with you.

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    1. Hi Sherrey, yes I am so glad I have crossed paths with you. I enjoy reading yours, because of the faith you carry. Jesus is good, and even if our health doesn’t change, His goodness does not…so much to be thankful for! Praise God! I look forward to swapping more stories with eachother, friend :)

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