Paying It Forward: Post-Diagnosis Hope

Soon, it will be the 6th anniversary of my Ankylosing Spondylitis diagnosis. I’m feeling better than I have for decades, and I am thrilled to share starch-free hope with others who are still in the throes of this disease.

4-year post-diagnosis
5-year post-diagnosis

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I remember the day of diagnosis well. It was the middle of the afternoon, but pain had brought me to my bed. I had lived with symptoms for years (decades!) and finally, after an 18-month wait for an MRI, I received the call from my family doctor.

“Good news! Something showed up on your MRI, so the pain wasn’t imagined. Concerning news, there’s evidence of chronic inflammation, and considering your symptoms, and testing positive for the HLA B27 gene, there’s enough reason to diagnose you with Ankylosing Spondylitis. There’s no cure, but I will refer you to a rheumatologist. Unfortunately, the wait for an initial visit is about eight months, but a rheumatologist will be able to prescribe you medication so that you don’t have to live with pain much longer.”

It was a quick phone call, but it was also life-changing. Anky-something. Eight months of waiting before I get relief. No cure.

While an answer to all my symptoms was nice, I also felt like I’d been handed a life sentence. Eight months seemed like an awfully long time to wait for relief, considering I was already crippled and in daily debilitating pain.

The diagnosis of Ankylosing Spondylitis offered me a starting point. With a name for my pain, I was not only validated, but it also allowed me to better advocate for myself in seeking help. I spent hours online and on the phone, searching for specialists who would offer me glimmers of hope.

At one point, I found a very promising lead to a medical professional who had successfully treated numerous individuals with a similar diagnosis. For years, I had been made to feel like a hopeless cause, and especially with a diagnosis of an incurable disease, I felt like I was a lost cause. So, when I showed up at his clinic for a free consultation, I felt optimism and confidence that there was reason for hope. And there was! He spent 15 minutes telling me about his experience, promising treatment options, and sharing success stories of clients he’d treated. I was ecstatic! This was it! I’d found the path forward! As I was encouraged to book my initial appointment on my way out the door, I was handed a folder with details, including treatment costs. I figured I should probably look at the details before committing. So, with an unusual spring to my step, I returned to my vehicle, gingerly plopped myself into the driver’s seat, and opened the folder with great anticipation.

$10,000 – as a first installment. (Side note: In Canada, we have Universal Health Care, meaning our high taxes cover most mainstream medical treatment – often with long wait times. Anything above and beyond mainstream treatment is out-of-pocket).

I wondered for half a second if it was a typo – until I looked at the breakdown of the cost. And that’s when my hope ended. I bawled.

Friends, it is positively awful to live in constant pain for decades, to be offered hope, and then to have that hope quickly squashed because treatment is financially out of reach.

Frankly, I think that moment was worse than the moment of diagnosis. It felt so dark. As I sat there, bawling my eyes out, I promised myself that if ever I found a way to manage this awful disease, I would freely offer that help and hope to others.

A few weeks later, my depth of despair fueled my dedication to a strict starch-free elimination diet. Slowly but surely, and with much diligence, I started to see improvement. The longer I stuck with it, the better I felt.

And now, 6 years later, I can truly say that I no longer feel disabled. I no longer live with daily pain. I often forget I even have an incurable disease. I love my starch-free diet, and I am so thankful that I’ve been able to add great variety to my diet so that I no longer feel as restricted.

In 2022, I launched this website, Starch-Free Feasting, holding true to the promise I had made myself: to offer hope to others without financial gain. It is truly an honor to share my story and the success stories of others who’ve embarked on a starch-free lifestyle. I love to cook and bake and share starch-free recipes with you all – to inspire and also to help make the starch-free diet more manageable for you.

Recently, I’ve been busier with other things in my personal life, but the website is here and it continues to exist and be available for the same purpose: to offer hope and also to offer information to help others on their journey towards relief.

If you feel that a starch-free diet has made a difference in your life, would you share this website with someone who might benefit from it? Please understand that there is no monetary gain for me, as this website is ad-free and entirely self-funded. Simply, I desire to offer hope to others who are in the throes of AS, like I once was. Together, we can spread the word, and lives can be changed!