You did it. You’re on the list. :)
Look for an email coming in March.
Meanwhile, stick around. You might find these posts helpful.
Soli Deo Gloria,
Nicole
For as long as my lungs have bled, I have wanted a doctor with enough wisdom to explain why my body continues to grow bad blood vessels and how to stop it from growing more.
On the other side of human limits we find hope in the infinite strength and wisdom of God. Where man’s abilities end we can find a new beginning — to trust “in the name of the Lord our God.”
Vascular Ehlers-Danlos Syndrome. Say that three times fast. It’s the name of the condition I carry deep in my genetic code. Maybe you carry the weight of a hard-to-say, even-harder-to-explain rare disease. Maybe your diagnosis isn’t even named yet and you’re in a frustrating cycle of doctors’ visits, tests, and endless waiting. With all of the appointments and daily management of our disease, we can easily let these identifications become our identity.
Our rare disease can take up a lot of our time, but it must not take preeminence in our hearts.
In The Scars That Have Shaped Me, Vaneetha Rendall Risner shares her story of life-long illness (Polio & Post-Polio Syndrome) and trials (death of a child and loss of her marriage) with simple writing and honesty.
A quick read packed with great theology. Vaneetha vulnerably reminds her reader of the unchanging character of God, even in the midst of illness and loss.
Living with an undiagnosed disease means living with uncertainty. It feels like being untethered. I have so many questions, yet I rarely get answers.
The same word, “anchor,” used for firmly securing a ship to land is also the same word for pointing a ship into the wind during a storm. The omniscient character of God has grounded me time and time again when medical knowledge has failed me. The sovereignty and faithfulness of God keep me focused forward, towards eternity when my body will be healthy and whole, no longer surprising us with unexplainable brokenness. God as my anchor is my only hope.
Touch, and my need for it, has highlighted what I’ve known for years: As a person living with a rare and undiagnosed disease, I have a deep need to be understood.
Jesus is fully human and fully God. He is all-knowing, the only One who can understand the physical, mental, and emotional struggles you experience. And he is all-powerful, the only One who cannot be overwhelmed by your need.
The comfort is this: The One who wept at the death of his friend, weeps for your pain also. The same One who touched the leper, can touch you too. In your pain and need, you are understood, completely, by Jesus.
I watched a gardening show once about planting trees. The gardener told us to remove the support stakes after one year. The tree needed to be tossed about by the wind without support because the tossing caused it to grow layers in the trunk. We need to let the wind toss the young tree about so that the tree could grow stronger. Perhaps, a crisis is a bit of resistance on a marriage, growing our marriage muscles and making us stronger. That’s certainly what happened in our marriage.
In this video, Mary Kate Brown and I chat about Crohn’s Disease and Functional Medicine.
You’ll notice right away that Mary Kate is energetic and passionate about sharing her story. It’s a little unusual, in my experience, to meet someone who is happy to share her story with chronic illness and bubbling over with hope regarding her prognosis. Even more rare is someone who is all those things while also very honest about the future hurdles she will likely face. Mary Kate is a rare jewel.
In this video conversation, my good friend, Dr. Andrea Harper, and I talk about living with rare disease. In 2018, we both come face-to-face with rare disease in dramatic fashion.
Andrea is one of those rare doctors who doesn’t talk like a doctor, she talks like a friend. She explains Myasthenia Gravis and how God prepared her for such a rare diagnosis. She explains why some doctors seem out of touch with your medical care. And she shares where real hope comes from.
Unshaken was born out of a deep personal need for biblical comfort—and the realization that so many women were desperate for the same thing. I searched Scripture not for answers to why this had happened, but for strength to face what was coming next. And what I found wasn’t just comfort—it was courage. Through the stories of biblical men and women who endured suffering with faith, I began to build a foundation that wouldn’t crumble when the storms hit. I knew I wasn’t alone—and I knew other women needed that same truth.
Most importantly, I knew women like me needed a safe space to faithfully navigate the many thoughts and feelings that accompany health challenges. Whether you're facing a chronic diagnosis, caregiving for someone you love, or simply feeling overwhelmed by the weight of life, this study is for you.