The Diagnosis That Changed Everything
Photo by National Cancer Institute on Unsplash
This post is for my YouTube video that I published after my diagnosis in 2018.
Life has a way of surprising us when we least expect it. For years, I lived with symptoms I couldn’t explain—headaches, ringing in my ears, pressure in my head, and the creeping loss of vision. Yet, for 12 long years, I walked this path without knowing what was truly wrong. Then, just a month ago, everything changed. I was finally given a name for what I had been battling: Pseudotumor Cerebri, also known as Idiopathic Intracranial Hypertension. This invisible disease, a rare condition where the pressure inside the brain becomes dangerously high, was stealing my vision and my life without me even realizing it.
Today, I want to share my story—not just as a mom living normally but as a woman standing firm in faith, determined to overcome this disease. This is my journey of diagnosis, struggle, and hope, and I pray it will encourage anyone walking through the shadow of chronic illness.
The Moment of Diagnosis: A Turning Point
For over a decade, I suffered silently. Doctors misdiagnosed me, telling me I was just suffering from migraines; in reality, I was not. I ended up going for my annual eye exam, and I was instructed to see a neuro-ophthalmologist and to get a spinal tap due to the high pressure.
It wasn’t until after seeing the neuro-ophthalmologist who truly listened to my symptoms—daily headaches, pressure, ringing in my ears, and vision loss—that I finally received clarity.
Walking into that doctor’s office, my left eye was dangerously affected, classified as category four in terms of vision loss. The stakes were high. I was on the brink of losing my sight forever. Hearing the diagnosis of Pseudotumor Cerebri was both terrifying and oddly liberating. Terrifying because it explained the relentless pain and fear I had lived with for years; liberating because it gave me a name to fight against, a battle I could now face head-on.
The Weight of an Invisible Disease
Pseudotumor Cerebri or Idiopathic Intracranial Hypertension (IIH) is not widely known. It primarily affects women of childbearing age who are overweight—a demographic I fit into but never imagined would face such a rare condition. The disease is invisible to the outside world, yet the pressure inside my head was very real and dangerous.
Doctors don’t often speak of a “cure” for chronic illnesses, but for this condition, the cure was clear: weight loss. The medication I was prescribed—a water pill to reduce the pressure—helped me lose 30 pounds of retained cerebral fluid in just one month. But the real challenge lies ahead. I have four months on this medication, and I must lose 100 pounds to protect my vision and reclaim my life. I also suffered from long-term memory loss and struggle with some short-term memory issues, but I know it can get better.
This isn’t just about weight. It’s about survival. It’s about waking up every day and choosing to fight instead of surrendering to despair. It’s about making sacrifices and embracing a new, healthier lifestyle.
Faith in the Midst of the Fight
As a single mother of a seven-year-old boy at the time, my motivation runs deeper than myself. I am an entrepreneur, a mom, and a woman of faith who believes God has a plan—even when that plan feels heavy and uncertain. I refuse to ask “Why me?” Instead, I ask, “What now?”
Do you want to be healed? Pick up your bed and walk
God didn’t bring me this far to let me fall. He is my anchor in the storm. Each day is a battle, but with every pound lost, every healthy meal prepared, and every step taken, I am moving closer to healing.
My journey is not just physical—it’s spiritual. It’s about learning to live fully, even with this invisible disease. It’s about hope, resilience, and trusting that brighter days are ahead.
Living and Fighting in Real Time
In just one month, I lost 40 pounds. I can feel the difference in my body—the way I move, the way my clothes fit, the renewed energy. But this is only the beginning. I am documenting everything: my struggles, my victories, my new recipes, and the lessons I learn along the way.
Most importantly, I want to share this journey to help others who might be silently suffering. If you’ve been diagnosed recently, or if you’re experiencing symptoms and don’t know what’s wrong, know this: you are not alone. It’s never too late to make a change. It’s never too late to fight back.
A Hopeful Takeaway
This invisible disease tried to steal my vision and my life, but it will not steal my hope or my faith. I am learning that healing is not just about the body—it’s about the spirit. It’s about standing firm, trusting God’s plan, and believing that with every step forward, victory is possible.
Since posting this video, this disease has been a journey. Even though I restored my sight, I didn't know that the medication was affecting my mental health, and for most people battling this disease, suicide is at the top - not being healthy.
I have since been medication-free and trying to keep this under control. I also learned that this was heavily dependent on my hormones - not just weight. With an unbalanced body, it is very hard to even begin to lose the weight that they want to. This disease is different in everyone afflicted by it, but that doesn't mean you can't beat it.
This disease tried to rob me of my joy, my memory, and my life. As shameful as I have felt about dealing with a disease that chose me, it is ridiculous, and the more I talk about it, the more someone who is much younger or even older than me can overcome this disease.
If you are walking through chronic illness today, I want you to know there is power in your story. There is power in your faith. And there is power in choosing to fight—for your life, your vision, and your future.
Faith Note:
How has your faith been challenged or strengthened during your own health journey?
What small steps can you take today to embrace hope and healing, even in uncertainty?
Let your faith be the anchor that holds you steady through every storm.