Where do I even begin? Millions of people around the world have followed my story for almost a decade. It’s a strange thing to have so many people care about you that you’ll likely never meet. Millions of people have prayed for me, encouraged me, and cheered me on. They have found inspiration in my story, and it has seen them through some of the most difficult moments of their lives. I mean, what? That’s crazy!
I’ve always felt very humbled by the position I’ve found myself in. It’s scary to be so vulnerable and share your most personal life experiences. It’s even scarier when it’s medical. But having read through thousands and thousands of the hundreds of thousands of messages I’ve had over the years, I understand the value in sharing my story with others.
So here’s the whole story, all in one place, as best as I can tell it.
The Beginning
It all started in October 2010.
I had a difficult pregnancy with my first child, and when we decided to try again, I thought it couldn’t possibly be any worse. I was wrong. The “morning sickness” hit almost immediately—so severe that I couldn’t keep anything down. A few weeks in, I was hospitalized for hyperemesis gravidarum (HG), which is far beyond morning sickness. I was in and out of the hospital until I was set up with a PICC line and home nursing care. I was on intravenous fluids 24 hours a day.
At 18 weeks of pregnancy, I was told I wouldn’t survive. I was urged to terminate the pregnancy. I refused. I fought to survive, at least until my baby was viable at 24 weeks. My OBGYN stood with me. I traveled to specialist after specialist. One cardiologist dropped his jaw when he saw me and said, “Something is profoundly wrong with you. I just don’t know what it is.”
I was dying, and everyone knew it. There I was—hooked up to IVs, sleeping 20 hours a day, wasting away, barely hanging on.
But you know how this story ends—because I’m sitting here writing it.
A tireless OB found the answer. Addison’s Disease. An autoimmune condition where the body kills off the adrenal glands—the glands that produce cortisol, the hormone you need to stay alive. I was in an Addisonian crisis. Three small pills saved my life. My organs started functioning again.
I shouldn’t have lived. Several doctors later told me my lab results were incompatible with life.
But I lived.
And my baby? Full term and perfectly healthy.
Addison’s disease is for life. I take replacement steroids multiple times a day, adjusting my dose based on how I feel because there’s no test to tell me how much I need. I’ve almost died more times than I can count. I had good days and bad days, and spent weeks at a time sick in bed. But I learned to be grateful. I learned to live.
In 2012, I launched The Stay At Home Chef—not in spite of my disability, but to spite it. I’d been sharing recipes since 2008 under “Rach’s Kitchen,” but I wanted to show the world that I could still contribute something meaningful. I chose food as my medium. I poured my soul into it. It became my outlet, my passion, my purpose.
The Gray Hair Video
In 2016, I received an award called “Youtube NextUp” where they identified me as an up-and-coming creator. As part of the award, I was invited to YouTube Space LA for a one-week film school boot camp. We were to film a video there, but no kitchen was available. I was at a loss for what I could possibly film without a kitchen. And that is when the comment happened. It didn’t hurt my feelings and it didn’t surprise me either. Lots of people have commented about my gray hair over the years and I have never been ashamed to share my reasons. I decided to answer the nasty commenter and then share the comment and answer on my personal Facebook page. The response from my friends and family there was overwhelming. At that moment, I knew what my video project would be.
The video was filmed at YouTube Space LA with the assistance of four amazing people (Jay, James, Jerry, and my mentor Julie). I wasn’t sure that I would ever post it anywhere, but I used it as an opportunity to experiment with filmmaking and storytelling. I had a script and tried filming that. My amazing friend Jerry told me I needed to do a take where I just spoke from the heart. There I was in a dark room with lights glaring in my eyes. I couldn’t see anyone, just a glint of reflection from the camera lens. I spoke to the camera, to an unknown audience, but mostly to myself. And that’s what you see above.
At the end of the week we screened our projects on a movie theater screen with about 35 people as an audience. I held my breath as mine came on screen, wondering what everyone’s response would be. I felt so naked and vulnerable. It was all so raw. I had no idea I could hold my breath for three and a half minutes!
The response from my fellow YouTube creators was overwhelming. They were so encouraging and demanded that I post it. It took me a number of days to actually share it on my YouTube channel. I ended up deciding to share it on Facebook as well at the last minute. I was doing a fundraiser for some friends who are adopting a baby and all the traffic to my blog was being donated to them. I thought the video might generate some more traffic for them. I had no idea that the video would end up being viewed by millions.
After all was said and done, the video had over 1 billion views.
The response was humbling. I got comments, messages, and emails of support every few seconds. I made it a point to read every single one simply because I wanted to make sure each and every story was heard. I have wept with you. I have laughed with you. And I have been deeply enriched by the entire experience.
Brain Tumor
Then came 2017 and 2018. I started developing strange new symptoms. One in particular was quite concerning, which I described as “my legs sometimes stop working.” By 2019, I was a regular ambulatory wheelchair user, where I could still walk in some scenarios, but needed a wheelchair for many regular activities.
In investigating what could be causing this, they discovered I had a brain tumor in the fall of 2020. We lovingly named it Fred.
Alas, Fred the brain tumor was not the cause of my mysterious symptoms. They started ruling out cause after cause, disease after disease. The tests were endless.
I had seen every kind of specialist: Western, holistic, naturopathic, Chinese medicine—you name it. No one could explain what was happening.
I tried every type of diet and program to heal myself naturally, too. Everything.
Losing the Ability to Eat
In 2021, I lost the ability to digest food. Daily nausea made eating impossible. In 2022, my hands started to have trouble working. I couldn’t hold a knife. By 2023, I couldn’t swallow. I was wasting away, facing a feeding tube.
My little sister—an ICU nurse—found Mom’s Meals. I cried the first time I ate one, it was so good. I shared that moment online, and so many of you ordered those meals it overwhelmed their production for two months.
I was on a pureed soft foods diet from December 2022 until May 2025. Even the soft or pureed foods I could digest slowly became less and less, to the point where I could only eat 7 different foods without experiencing pain.
For a chef, this was truly a nightmare. I had to look away from food for a long time. I couldn’t be around it in person, and I couldn’t stand viewing it online. And it was my job! I took a break for about a year.
At the beginning of 2024, I had finally reached a point mentally that I could look at food again and return to my passion. It wasn’t easy at all, if I’m being honest. The only thing that allowed me to return was knowing that I was serving an audience that I cared deeply about. It filled me with purpose. As long as I was doing it for my audience, I could be at peace.
Can’t Stop Won’t Stop
The pain was often unbearable to the point where I spent almost all of my time in bed. I was limited to being able to walk from my bed to the kitchen a few times each day and required a wheelchair to leave the house. Just leaving the house in a wheelchair was exhausting.
I saw specialist after specialist. I sought care from the University of Utah, Cleveland Clinic, Mayo, and Stanford. Every time I thought we were finally getting somewhere with a possible diagnosis, a test result or new symptom would change everything.
Then, in 2024, we finally started getting answers. Or at least we thought we were getting answers. A new specialist was recommended who recognized some of the symptoms as a rare genetic condition called Complex Hereditary Spastic Paraplegia (Complex HSP), where muscles develop spasticity and basically paralyze themselves at random.
The working diagnosis seemed to fit, so preemptive treatment was started while more testing was needed just to be sure. The treatment alleviated a significant amount of the pain, and I took advantage of every minute of it! I still required a wheelchair, but it was far easier to leave the house.
“Can’t Stop, Won’t Stop” became my motto.
I traveled to Los Angeles, Arkansas, San Antonio, Dallas, New York City, Puerto Vallarta, and San Francisco for work, fun, advocacy, family, and friends. I pushed my body as far as it could go and did as much as I could.
But it didn’t last. The declines became even more limiting. My cognitive abilities were slipping. The signs of malnutrition were quite noticeable. I started declining rapidly. By the end of 2024, I wasn’t sure how much longer I could hold on. Many nights, I didn’t even have the hand strength to feed myself.
Muscle system after muscle system was being impacted, both inside and out. Even my heart was impacted. I knew things were getting really serious when my airway would suddenly spasm, cutting off my ability to breathe.
I was slowly becoming trapped in my own body.
When the results of my full genome sequencing came back without a flag for Complex HSP, the working diagnosis became no more. It was time for a “hail mary.”
Experimental Treatments
My specialist wanted to start me on an experimental treatment called IVIG (Immunoglobulin Therapy), but he was switching practices and I had months to wait. I started with three rounds of stem cell therapy combined with NAD+. The NAD+ seemed to have a positive impact on my cognitive issues, but stem cell therapy is a long game and takes months or years to produce results.
Finally, I started IVIG treatments. After just 3 treatments, small improvements started to show. I thought I must just be imagining it, until I checked in with my specialist for what I thought was a routine appointment.
Instead, he changed everything. My head is still spinning, and I don’t have adequate words to express what this kind of mental and emotional whiplash is like.
The Diagnosis
I have reached the end of the road for a diagnosis. There isn’t technically an answer. The neurological condition I have is unique, as in it has never been seen before. I suppose it could just be called Rachel Farnsworth disease. The closest known condition is Stiff Person Syndrome. Yes, like Celine Dion. I don’t actually have Stiff Person Syndrome, but I do appear to have some sort of variant of something in the same family that is simply unidentified.
Apparently, there’s still a lot about neurology that we just don’t know yet. And what I have? They just don’t know about it. So I won’t know exactly what things look like, or how they’ll go, or what happens from here, but there’s a path forward.
I still can’t comprehend it, but there doesn’t have to be an answer in order to have a solution. What matters is that the IVIG treatments are working. I am regaining my abilities. And quickly!
It’s exciting and terrifying all at the same time. I keep waiting for the other shoe to drop. It’s scary just to share it with you. What if it’s not real, or it doesn’t last, or stops working? I don’t know how I could handle that kind of crushing disappointment.
I’m sharing it with you anyway because I know how many people have followed my story over the years. I know how many people have prayed for me, cheered for me, and encouraged me to keep going. I think you deserve to be able to share in the excitement and joy I’m experiencing too. It’s scary and vulnerable, but I hope it reaches the people who need it.
The Future
I am halfway through what they call the “loading dose” and then will continue treatment from there. I don’t know how much better I’m going to get and I honestly can’t even imagine what having a functional body looks like for my life. It’s been so long. The wins right now seem so small on paper, but they are huge for me.
Unexpectedly getting my life back is the most bizarre and joyful experience. I’m keeping my “what-ifs” small as I dream about the future I wasn’t supposed to have.
I’ve learned that courage and fear go hand in hand. So do grief and joy. And even if your body fails, your soul doesn’t have to.
I’m a dreamer. I dream big. I write cookbooks. I run a business. I create food content for millions of people. And sometimes, just to prove to myself that I still can, I do something big.
I don’t know what the future holds, but I’m excited to find out. Sharing recipes has been one of the greatest privileges of my life. If you’re facing something hard, just know: you are not alone.
Can’t stop. Won’t stop.
– Rachel Farnsworth
