Finding Hope with Autoimmune Disease Diagnosis

Have you just received crushing news of an autoimmune disease diagnosis or maybe you’ve been battling one for years? Are you trying to find the strength to carry on while facing a life changing disease? As with any news of illness or chronic autoimmune disease diagnosis, there can be a flood of emotions, questions, fears, and frustrations. I felt all of these along my journey but there is still hope. Here is my story of finding hope and healing after being diagnosed with my second autoimmune illness, Ankylosing Spondylitis.

My first memory of having Ankylosing Spondylitis symptoms was right after a backpacking trip along the Kalalau Trail in Hawaii. I brushed off my symptoms and chalked it up to maybe having just injured something while backpacking.

However, over the next few years this same pain and stiffness would come and go. At that time, the pain was in my S.I. joint area and oftentimes radiating down my sciatica making it very painful to move. Being stubborn about going to the doctor, I continued to brush it off as nothing to worry about. I was neglecting to listen to my body’s cues that something was seriously wrong. As time went on the pain worsened and was spreading into my hips and farther up my back. My concerned husband kept encouraging me to see a doctor.

Searching for Answers and Receiving an Autoimmune Diagnosis:

Eventually, being in enough pain and struggling to walk, I was ready to go to see a doctor. 

I reached out to one of our local orthopedic specialists. He was able to get me in within a couple days. He was very thorough in evaluating my physical mobility and symptom characteristics. During the evaluation, he mentioned a rare autoimmune illness that seemed to match my unique symptoms. He said to us that it was unlikely but he still wanted to do blood tests, x-rays, and an MRI to rule it out, along with other more common conditions.

We soon received a phone call back from the orthopedic specialist. It turns out I did have this rare condition, Ankylosing Spondylitis. Also present was the genetic marker for it, HLA-B27. Which I later learned was also partly responsible for my Ulcerative Colitis. 

We now had a label for what was causing my pain, however, this didn’t seem to make it any better. Still, I am confident that God uses our struggles and brokenness to shape our hearts and draw us closer to Him. I know that he is working all things for good and so through Him I have hope!

The Advice to Keep Moving Through the Pain:

The orthopedic specialist wanted to refer me to a rheumatologist that specialized in my specific condition. Before that, he left me with some very wise words of advice; saying to me that as my condition progressed, no matter the level of pain, it was important that ‘I keep moving’ through it all so that I don’t lose my mobility.

Now many years in, I know and feel what he meant by that statement. Some days the pain is so intense that I am in tears and mustering up every ounce of strength just to engage in basic daily movements. In those moments I often think of his advice to me. I must keep moving or my joints will continue to calcify, fuse together, and take away my mobility. I’m determined to stay active and mobile, God willing.

A Rheumatologist for my Autoimmune Disease:

A few months later, I began to see the rheumatologist that I was referred to. Having been down this familiar road before with my Ulcerative Colitis, I had reservations about the appointments. I didn’t want to go back onto the same heavy immunosuppressive meds that failed me before, during my battle with Ulcerative Colitis.

I became determined to find another way to fight this! While scared and unsure, I handed it over to the Lord and put my hope in Him. I began learning more about the connection between autoimmune disease, inflammation, and the significant role that diet and environmental toxins have in all of it.

After my initial research and with the support of my family, I dove right into an elimination detox diet to find what foods were inflammatory triggers for my own body. While there are common inflammatory foods, everyone is different and your body may react differently to certain foods. I needed to learn what worked for my body. Here is my guide on how to approach an anti-inflammatory diet.

Making Tough Decisions Around my Autoimmune Diagnosis:

I saw that rheumatologist a few times, at each appointment he tried to sway me in the direction of taking biologic TNF-inhibitors, which are immunosuppressive meds. It seemed as if he believed the meds were the only solution to keep me from eventually becoming crippled. I am not a doctor but in my research these meds only slow the progression of this illness they do not prevent it. Diet and lifestyle will also help slow the progression of these illnesses. So I made the decision to hold off on taking any heavy meds.

At my final appointment with this doctor, he was, yet again, very persistent about my need to go on the meds specific for my autoimmune disease diagnosis.  At the time I was eager about my new diet changes and the improvement in pain I was already noticing. I was excited to share this with him, but he quickly shut it down. He told me it wouldn’t work and that there was no way I could sustain sticking to this strict diet for the rest of my life. I felt that this doctor clearly didn’t know me, my determined heart, and the strength I have in God. Now, even more than ever, I was motivated to keep fighting this naturally.

So began my journey of living an anti-inflammatory, clean, non-toxic, healthy lifestyle! Here I am a decade in and I have no plans of stopping this healthy diet and lifestyle. It is truly supporting my body, and decreasing my inflammation.

Challenges of Living with a Chronic Autoimmune Disease:

I do still face challenges with this, as my autoimmune disease, ankylosing spondylitis, has been slowly progressing over the years. I do still have flare ups and challenging seasons. So I am always adapting and learning more new ways to support my healing.

It’s a scary thing to feel this kind of pain and, some days, struggle with basic movements like sitting, walking, and dressing myself. Sometimes fears creep in about what my future will look like. Will I be able to continue with my physically demanding outdoor hobbies like snowboarding and hiking? If I am so blessed to have children, will I be able to get down on the floor with them, or lift them up?

Those fears are the enemy’s way of distracting our hearts from what God has in store for us. So when they creep in I turn to the Lord to regain peace, strength and hope in Him.

Remaining Hopeful along this Journey:

While I don’t always understand the hardships experienced in this life, I know He is working all things for good. I find that in these moments of pain, God’s presence is enough! And His promises are where I find peace, hope, joy, and renewed strength to lift myself up and keep going.

I can’t wait to share more with you in regards to all the things I’ve learned and am still learning to support my health. It is a privilege to have this God given body. I want to do my best to take care of it.

If you find yourself facing hard times, I encourage you to turn to the Lord and put all your faith in Him. It will always be the best decision I make in this lifetime.

Again, my hope is to shine a light on your story. I’m here to help you find hope and healing through healthy recipes, lifestyle habits, and faith.