Living with Hope & Chronic Illness

Oct 13, 2022

Sick Girl Tips: Living with Chronic Illness by Christy Rivera

I’m twenty-seven-years-old, and I’ve dealt with chronic illness for over ten years. And, yes, I know I’m “too young” to be sick. 

When I was seventeen, I spent my drive to school praying that my digestive system wouldn’t explode. I was miserable. Every morning, I ran to the bathroom. I dealt with nausea, weight loss, sharp stomach cramps, and other unmentionable digestive symptoms. So, I had my first colonoscopy. The doctor told me I had some sort of intestinal infection. After a round of medication, I was told I was fine again. I didn’t feel fine. 

As time went on, my symptoms got worse. I had to quit my job at Starbucks because my joint pain made standing for hours too painful. I missed hanging out with friends and I missed school events, because my stomach would keep me stuck in the bathroom or in pain. I tried numerous healing diets: paleo, AIP, vegan, SCD, gluten-free, dairy-free. I took probiotics and many other supplements. I tried exercise. I did whatever the doctor told me to do. And, yet, I was still sick. I went to a new GI doctor and had another colonoscopy done. Even though they found ulcers, the doctor pulled my mom aside after my appointment and asked if she thought I could be faking my stomach problems for attention. I was devastated. At this point, I had been sick for three years. I felt hopeless because “nothing was wrong with me,” and so nothing could be done. 

Life continued on, and I continued to be miserable. On a family trip to Michigan, things reached a boiling point. I had to bring an inflatable cushion on the plane because sitting was too painful. I hardly left our Airbnb, because my digestion wouldn’t allow it. I had a tooth that needed a root canal that decided to start aching. I sat back as my family made wonderful memories together, and I felt trapped. 

But I wasn’t alone. 

I remember sitting in a hammock, crying, and looking out on the water behind our AirBnb. I felt God holding me in that moment, letting me know He was there with me.

Somehow, I made it to church that week, although I was debating whether or not I could make it through the service. The church sang a hymn I had never heard before, How Firm a Foundation. It quoted Scripture that helped me get through difficult times before, and it felt like the lyrics were meant just for me:

“Fear not, I am with thee; oh be not dismayed

For I am thy God and will still give thee aid

I’ll strengthen thee, help thee, and cause thee to stand

Upheld by My righteous, omnipotent hand

When through the deep waters I call thee to go

The rivers of sorrow shall not overflow

For I will be with thee, thy troubles to bless

And sanctify to thee thy deepest distress

The soul that on Jesus has leaned for repose

I will not, I will not desert to its foes

That soul, though all hell should endeavor to shake

I’ll never, no never, no never forsake”

I came back home and saw another new GI, and had my third colonoscopy. 

I was finally diagnosed with Crohn’s Disease. 

I felt like a weight was lifted off me. I wasn’t crazy; it wasn’t in my head- I was actually sick. The doctor put me on steroids, as we looked for the right treatment. It took a year of trying various medications before we found the drug I had asked to be put on in the first place, Remicade. Finally, I was in remission. Now, I was determined to get off steroids.

But, I couldn’t. 

As I tried to taper off steroids, I was getting visual auras, fatigue, joint pain, and awful headaches. I brought this up to my GI, who told me that it couldn’t be happening. 

My PCP finally suggested that I might have developed “adrenal insufficiency” from being on high-dose steroids for so long. Once again, I felt relieved. It wasn’t all in my head.

Then, we moved to Texas, and my health spiraled out of control.

It started small. A few months after we moved, I noticed that my hair was falling out more. That Christmas, I experienced a “steroid crash.” For me, this happens when I try to taper off too quickly or experience something stressful. The fatigue and headaches become debilitating. But this time, upping my steroid dose didn’t take away these symptoms. I started experiencing horrible dizziness, migraines, heartburn, and brain fog. I had to sit down at work and pray that I could make it through the day. 

I felt hopeless once again since doctors told me, “Nothing is wrong.”

I had to look for help elsewhere. 

I was desperate. 

I went to a chiropractor, an acupuncturist, a naturopath, and a functional medicine specialist. 

I read everything I could on natural healing and started creating my own protocols. 

I made some progress, but it took everything I had. 

By this time, we moved back to Phoenix. I had testing done that revealed I had mold exposure, parasites, and candida overgrowth. I began to connect the dots as to why Texas made me so ill. 

As I treated these issues, I kept getting better and better.

But I still felt I was missing a piece of the puzzle. 

I went to a counselor who specialized in chronic illness to help me process the anxiety I had about my health, as well as the trauma I had been through as a result of being sick. That brought another, more difficult, layer of healing. I continued this journey, and have been seeing a Craniosacral Therapist to help release any emotions that got trapped in my body. My digestion has improved, my headaches are drastically decreased, I haven’t had a migraine in years, my skin is clearer, and my joint pain is no longer constant. 

Unfortunately, I’m still on steroids. 

And I’m still sick. 

Because the steroids supplied my body with more cortisol than needed, my body stopped making its own. The process of tapering off steroids forces the body to start producing its own again. But tapering also involves having less cortisol than is ideal for daily life. Cortisol helps with so many bodily functions, and without cortisol, you can’t handle stress. 

You really realize how often your body uses cortisol, when you don’t have it. 

I can’t watch thriller movies anymore. I can’t be in the heat too long. I can’t do intense exercise. I can’t drink alcohol, or stay up late. Even though I feel better now, it’s because I live a life that is limited. 

But I’m so grateful for how far I’ve come. 

And I know my story isn’t over yet.

There’s so much I could say about how God has shown up for me in my story. 

When I have felt the worst is when I have had the most precious times with God. When you physically can’t do something, there is nothing else you can do but to give it up to God. I’m still trusting God that I will continue to heal. 

In a condensed version, this is my story. 

If you’re interested in learning more, I share a lot on my instagram, @Sick.Girl.Tips