THRIVING

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The storm raged, and as she fell among the wreckage, she reached for what remained and found just enough to learn how to thrive in the storm.

 

I live with an autoimmune disease called Autoimmune Hepatitis (AIH). People frequently mistake AIH for viral hepatitis A, B, C, D, or E, but those are caused by infections or viruses and are not part of my diagnosis. It is called autoimmune hepatitis because it targets the liver. Simply put, my immune system sees my liver as an enemy and attacks it. Autoimmune diseases like mine often carry a hereditary component, but they are not directly inherited like some genetic disorders. Instead, people inherit a genetic predisposition that usually needs an environmental trigger, such as infection, diet, or toxic chemical exposure, to activate. The problem is that the trigger is usually unknown and highly debated. AIH remains rare, with little research to date, so standard treatment still relies on medications such as high-dose prednisone and immune suppressants, azathioprine or mycophenolate mofetil.  

My First Storm

 
My first storm hit in 2008, the day before Thanksgiving, while I was living in Los Angeles. I woke up and saw yellow eyes staring back at me in the mirror. Urgent care couldn't do much over the holiday weekend, so I waited to see a specialist the following week. He thought it had something to do with my pancreas and ran tests, including an upper GI endoscopy, CT scans, and other invasive procedures, but everything came back negative.

Weeks blurred together. I couldn't eat, I lost a significant amount of weight, and work became impossible. Finally, he sent me to a liver specialist on UCLA's transplant team who ordered more tests and a liver biopsy. The pathologist reviewed the biopsy for two weeks and concluded that I had been poisoned by something unknown. They even tested for obscure things related to my travels over the previous year, but no one could figure out what it was. I was extremely sick, and by then my entire body was yellow, including the whites of my eyes.

The doctor started me on prednisone with weekly blood tests. Disabled and unraveling, I bounced from a friend's couch to a hotel, then to a rented room where the homeowner's son feared I might die there. Convincing my doctor that I needed to leave the state so my sister could take care of me was difficult, but I was desperate. I flew cross-country to my sister's home, where brutal medication and weekly blood draws became my lifeline. Weeks of lying in bed or on the couch dragged on, and even walking to the mailbox was too much. Slowly, I clawed my way back to block-long walks and part-time work, just enough to survive.

I eventually moved back to Los Angeles and resumed my job, but the medications still took a toll on me. In 2010, I met my husband Kevin, and we have been together since the night we met. He has been a blessing and my rock. He introduced me to Hope, a dear friend and health specialist in both Western and Eastern medicine, and she helped me tremendously. I came off the medication and thought my nightmare was finally over.
 

The Storm Returned

 

The storm was not finished with me. In 2018, my husband and I decided to leave Los Angeles and move across the country. We were excited to start our business and settle into our new home. Soon after, we found new doctors and began yearly checkups. To our surprise, my liver enzymes had risen again, but this time it was caught before I noticed any symptoms.

I was sent to a liver specialist who performed another biopsy and diagnosed AIH. He kept me on long-term prednisone, and it nearly destroyed me. I spent my days on the couch and sank into deep depression. One day I had a frightening thought about harming myself, and it scared me enough to know I needed help. That moment pushed me to start researching my condition more seriously.

I learned that prednisone should start being tapered when your liver enzymes have returned to normal and the immune suppressant medication has been introduced. I learned that I needed to advocate for myself in the medical system. I searched for a new liver specialist and hired one who is farther from home but absolutely worth the extra effort. I eventually came off all my medications and worked with a functional medicine doctor for two years, learning a great deal along the way. But when my liver enzymes rose again, I realized that I needed to accept the role of traditional medicine in managing my chronic illness. Weekly blood work was ordered to monitor my liver enzymes and I started high dose prednisone. As the liver enzymes started coming down my new doctor introduced Azathioprine and I was slowly weaned off the prednisone. This process takes a long time.  I had weekly blood work for over a year. I will talk more about the effects of long-term Prednisone in the Medication and Doctors section.  

 

The Trauma I Carried

My primary care doctor recently urged me to seek therapy for trauma, and it hit me: that first AIH storm was trauma. My default survival mode kicked in hard. I had not grieved the homelessness, the terror of not knowing what came next, or the fear of how long this altered life would last. Emotionally, I had pushed it down just to keep going. But thriving in these storms mean facing that wreckage too, sifting through the pain, the fear, and the endless "why me?" until something honest and sturdy begins to rebuild. I also discovered that when this storm returned, I slipped back into old survival patterns from a previous abusive marriage, patterns I believed I had already overcome. This created strain within my current marriage, but I am deeply grateful that my husband chose to stay beside me in the storm, working through it together with patience, therapy, and self-reflection.
 

Over the last several years, my life has been filled with countless doctor visits, tests, injections, therapy sessions, physical and mental, surgeries, and a steady stream of viral and bacterial infections, including pneumonia. These remnants aren’t the story, they’re just debris I sifted through while weathering the storm.

 

My Live Inside the Storm

 

Most people cannot truly understand just how much strength, self-talk, courage, and endurance it takes to make yourself keep going and do things through the pain, fatigue and mental frustrations that is suffered with daily.

 

My chronic illness is mostly invisible to the world and it does not make it any less real to me. You don't see the level of pain I'm managing or the fatigue I have every single day just to live my life. I have side effects I didn't ask for and mental exhaustion from pushing through. I can't just relax, I am not faking it, I am not lazy, I am healing from depression and can't just be more positive and I can't just have a day off and live a little without ending up bed bound if I overdo it.

 

With autoimmune disease, it can feel like everything you once knew about yourself begins to disappear, leaving you to rebuild a life that no longer fits the same way. I felt like I was no longer a distinct person, just moving through the world like a zombie, going through the motions without truly being present. Even simple things, like sitting at a table for a friend’s birthday brunch, required an immense and deliberate effort. At times, immersing myself in something could briefly quiet the awareness of pain and fatigue, but when a flare hit, it became overwhelming. The exhaustion and pain made even the smallest tasks feel impossible. There were times I couldn’t write a single sentence, let alone form a paragraph and even now, on the hardest days, that is still true. But on the days when I can, those are the moments I’ve used to write this book.

 

What most people don’t see is the strength it takes, the constant self-talk, the courage, the endurance required to keep going through the daily weight of pain, fatigue, and mental strain. Chronic illness is often invisible, but that does not make it any less real. You don’t see the level of pain I manage or the exhaustion I carry just to live my life. I face side effects I never asked for, including the mental toll of pushing through each day.

 

 I can’t simply relax, and I’m not faking or being lazy. I’m healing. I can’t just be more positive, and I can’t take a day off without consequence—because if I overdo it, I may end up completely bedbound. I am allowed to feel what I feel.

My pain is not the kind most people don’t know. It is not caused by inflammation and taking your arthritis medication will not help me. My pain moves around and is unpredictable, I cannot work my pain out or shake it off. Today it might be my shoulder, but tomorrow or in an hour it may be in my leg or my whole body. My pain is believed to be caused by improper signals sent to the brain, it is not well understood, but it is real.

My fatigue is not to be confused with tiredness. My sleep is not restorative and fatigue is not low energy, it's a body wide shut down. My body is like a phone battery that only charges to 12%. You wake up and before you've even brushed your teeth, you're already exhausted. It's hard to explain to people that you aren't
just tired, it's a deep, soul-aching fatigue that makes your limbs feel like they are made of heavy lead. My muscles, thoughts and will to move are all locked in place. Some days the simple act of taking a shower feels like running a marathon. I may want to participate in physical activities, but I can't. I need to choose only the non-negotiables for the day, look ahead and spread-out demanding tasks and break activities into smaller steps and take rest breaks.

My forgetfulness has nothing to do with age. I may not remember your name, but l do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. I do not have a selective memory. On some days, I just don't have any short-term memory at all. I may have difficulty concentrating or focusing, be confused, lose my train of thought, not be able to find the right words, have a slow thought process and reaction time.

 

My symptoms are unpredictable and unreliable making it incredibly difficult to plan ahead. Some of what I experience is heavy band like head pressure that isn't a migraine but stays as long as it wants, all over deep body pain, nerve pain, invisible itching, joint stiffness, muscle spasms & twitching
temperature dysregulation-hot one minute, cold the next, bladder issues, digestive issues, light & sound sensitivity, balance issues & clumsiness, nausea, brain fog, depression & anxiety, muscle weakness, cognitive issues, blurry and double vision, sleep problems and of course extreme fatigue.

 

This is my life inside the storm—unpredictable, exhausting, and often invisible. It is not the life I planned, but it is the life I am learning to live, one moment at a time. This book began in the midst of that reality, in a place where I needed something to hold onto, something I could return to if I ever found myself there again. I wanted words that could guide me back when I felt lost, something steady in the chaos. What started as a way to help myself slowly grew into something more, shaped by the hope that it might help someone else find their way too.