Hi Kim,

You know, it is one thing to have knowledge about health and disease — but connection and understanding are something entirely different.

There is a powerful moment when isolation begins to break. When you realize the symptoms are not random. When you discover you are not alone. That quiet awareness that something isn’t right can slowly give way to clarity, direction, and eventually a path forward. The journey is rarely easy. It often requires perseverance, mercy toward ourselves, and abundant grace.

Today, I am deeply honored to share a life story from someone who has walked through seasons of unknown pain and inflammation — wondering if what she experienced was simply “normal.” Through persistence, personal research, supportive family, and the right clinicians and testing, she moved from surviving to truly living.

Alex is a photographer, kids ministry leader, pastor’s wife, and a precious daughter of God. Nearly every time I see her, she is joyfully on the move. She lives with Ankylosing Spondylitis (AS), a form of inflammatory arthritis that primarily affects the spine and sacroiliac joints and can lead to stiffness and fusion over time.

She has graciously shared her story, beautifully revealing the journey from uncertainty to diagnosis and into intentional healing with lifestyle.

Please join me in welcoming Alex to the writing stage…

Alex’s Journey

I was diagnosed with Ankylosing Spondylitis in April 2020. I was 24 years old.

Oddly enough, my diagnosis felt like a relief. It was the moment I realized I wasn’t crazy. The pain wasn’t all in my head. There was finally a name for what my body had been trying to tell me for years.

Looking back, I believe my symptoms started around the time I turned 18. I lost weight rapidly, wasn’t sleeping well, dealt with back pain and stomach issues, and felt constantly run down. Because that season also marked my entry into adulthood, I genuinely thought this was just how adults felt. Like… this is adulthood, I guess? None of it seemed connected at the time. They were just things I assumed I needed to push through.

From 18 to 24, ongoing inflammation caused more and more issues. At one point, I was put in a boot for two weeks after urgent care told me I had tendonitis. In reality, it was an ankylosing spondylitis flare in my feet. That same year, I started realizing something felt different about my body. I worked at a church I loved and genuinely loved my job, but after Sundays, I would completely crash. My legs would throb, and all I could do was lie in bed for the rest of the day… usually with Chipotle :) My body needed recovery in ways that others my age didn’t seem to need.

A friend suggested going gluten free, and while it didn’t solve everything, it helped a lot with inflammation. To this day, I can tell when I’ve had gluten. It usually starts with a headache, then neck and shoulder pain, and the next morning, pain in my feet when I get out of bed.

Between 2019 and 2020, I changed jobs, got married, traveled a lot, and then, like everyone else, lived through the pandemic. It was a lot of change and a lot of stress, and my body really felt it.

My husband Zach and I made it our goal to figure out what was going on. I started seeing a chiropractor, which ended up being really helpful for my body, even before I knew my diagnosis. But I also experienced moments where my pain wasn’t fully acknowledged, and I was told he would be able to heal me and that I should avoid labels or diagnoses. While well intended, it left me feeling unseen and unheard.

Eventually, someone recommended I see a rheumatologist. The early appointments were confusing. I was told I had hypermobility, then given a fibromyalgia diagnosis that felt more like a placeholder than an answer. I pushed for further testing. During an X-ray while they were trying to figure out a different possible cause of my pain, the doctor noticed narrowing in my hip joint, which raised some concerns. A blood test later confirmed I carried the HLA-B27 gene, which is present in the majority of people with AS.

That moment felt like a win. I finally had answers. But the harder question came next. What now?

Most of the solutions offered involved heavy medications. I tried steroids without much relief. I was told to come back for injections during flare ups. Eventually, I was advised to start Humira, which would have meant injecting myself every two weeks, if I remember right. I came really close to starting it, and they even began sending me some of the supplies I’d need. But I just couldn’t get peace about it, especially being so young at the time and it was before we had even started trying for kids.

Around that time, I made the decision to step back from regular rheumatology care and take ownership of learning what actually worked for my body. It wasn’t quick or easy, and it definitely wasn’t perfect. Along the way, I also discovered I also had IBS, something I knew I was at higher risk for because of my autoimmune disease. It's been a journey, by all accounts.

Since 2022, I’ve focused on living with more intentionality about my diagnosis and body. I have grown to accept my diagnosis and remember that it's okay if I can't push myself like others. I’ve worked hard toward a less stressful schedule (far from perfect, but growing!!), followed a Low FODMAP diet, stayed consistent with going to the chiropractor, and slowly rebuilt my relationship with working out. What once felt impossible with my body pain now feels life-giving. I often crave movement instead of dreading it!

I am not healed. And I’ve come to accept that this might be a “thorn in my side,” like Paul talks about in scripture. But I walk forward grateful for the growth I’ve experienced, relying on God’s strength, and holding onto what I like to call “even if” faith.

Even if the pain doesn’t fully disappear.
Even if the answers aren’t always clear.

I hold onto the hope of heaven, where He will wipe away every tear and pain will be no more. Until then, I choose to steward my body with wisdom, live with faith, and use my story as much as possible to point people to Him.

— Alex Blake Otto

alexblakephoto.com

alexblakeeducation.com

Socials: @alexblakephoto

Looking Ahead

Next month, we step into Earth Month as we explore the deep and beautiful connection between the health of our planet and the health of our bodies — how creation itself supports restoration and renewal.

Connect

If Alex’s story resonates with you and you feel ready to take a step toward your own healing journey, I would be honored to walk alongside you.

You can schedule a Find Your Energy Discovery Session, or if you simply have questions — or would like to refer someone — join me for a Virtual Coffee Chat or Local Coffee Chat (Charleston, SC area).

Quotes of the Week

“Faith sees the invisible, believes the unbelievable, and receives the impossible.” — Corrie ten Boom

“Hope itself is like a star — not seen in prosperity, but discovered in adversity.” — Charles Haddon Spurgeon

Even if… faith and hope are yours for the taking,
Kim
Hope & Healing Lifestyle Coach

Website: hopeandhealinglifestyle.com

Email: kim@hopeandhealinglifestyle.com