Living and Thriving: My Crohn's Disease and Cerebral Palsy Journey

Intro

Living with both Crohn's disease and Cerebral Palsy has been a challenging yet enlightening journey for me. My name is Ashley, and I was born with cerebral palsy, a condition that has affected my motor skills and coordination since birth. Despite my obstacles, I strive to live a fulfilling and meaningful life. However, my journey took an unexpected turn when I was diagnosed with Crohn's disease in 2021, adding another layer of complexity to my daily life.

My Early Years with Cerebral Palsy

Navigating childhood with cerebral palsy presented a unique set of challenges that set me apart from my classmates and friends. Simple childhood activities, such as participating in sports or navigating the playground, required innovative thinking and determination that few could understand. Despite these hurdles, I was fiercely determined to achieve a sense of normalcy and independence.

This determination was fueled by the unwavering support of some of my family and friends, who never once allowed me to view my condition as a limitation. Instead, they encouraged me to explore my abilities and adapt creatively to daunting tasks. Whether modifying how I tied my shoes or finding inventive ways to participate in class activities, I learned the value of persistence and innovation from an early age.

Attending school presented its own obstacles, from accessibility issues to the varied reactions of peers who sometimes didn't understand my condition. However, these experiences taught me valuable lessons in empathy, resilience, and the importance of educating others about differences. They also instilled in me a passion for advocacy, not only for myself but also for others facing similar challenges.

As I grew, so did my capacity to confront and overcome the barriers set before me, turning each obstacle into an opportunity for growth. My early years with cerebral palsy were not defined by the limitations of my condition but by the boundless possibilities of my determination. This allowed me to attend college at UW Eau Claire and receive my bachelor's degree in social work with honors.

The Unexpected Visitor: Crohn's Disease

The onset of Crohn's disease came as a surprise, intertwining with my existing limitations with cerebral palsy. This inflammatory bowel disease introduced a slew of new challenges, from severe abdominal discomfort to persistent fatigue that seemed to shadow my every move. The symptoms that came with this diagnosis were very distressing to me because I was and still am, to a certain extent, a person who would go balls to the wall and not pay attention to the signals from my body.

My journey with Crohn's disease began amidst my ongoing adaptations made for cerebral palsy, adding an intricate layer to my daily existence. Now I could no longer push the limit of my physical capabilities. I went from being able to pull all-nighters if my service dog was sick to barely being able to stay off the toilet for more than an hour. At this point, I felt like my body was flipping me the bird and forcing me to become more attuned to what condition my body was actually in.

A steep learning curve marked the transition into this new reality as I grappled with the intricacies of dietary restrictions, medication schedules, and the constant vigilance required to mitigate the impacts of Crohn's. Unfortunately, already having cerebral palsy made doctors less likely to listen to me, which has made it really difficult to identify triggers to mitigate as many symptoms as possible.

Living with Crohn's disease also has given a new meaning to the terms determination and resilience. It taught me the importance of listening to my body and advocating for my health in ways I hadn't anticipated. As I adjusted to this unwelcome visitor, I had to remind myself daily of the strength I'd cultivated facing cerebral palsy—strength I now had to summon anew in the face of Crohn's disease.

Learning to Manage Two Chronic Conditions

Navigating the intricate dance of living with both Crohn's disease and cerebral palsy has been a journey of deep self-discovery and adaptation. My journey has necessitated a nuanced approach to healthcare, one that respects the distinct yet interconnected needs dictated by both conditions. Collaborating closely with a multidisciplinary team of healthcare professionals has been difficult. having both conditions often makes me feel like some sort of unicorn, because, despite all of the research I've done, I cannot seem to find anyone in a similar situation to myself. Dietary modifications have played a pivotal role in managing my Crohn's disease.  It has made it difficult for me to maintain a routine of daily physical movement to keep my body in the most flexible condition possible. Crohn's disease has also made it difficult for me to maintain a good state of mental health. Due to its unpredictability, I'm often left wondering how long I will be able to maintain employment, which scares me beyond belief because I am very proud of the fact that I can provide for myself and have the level of Independence that I do, while so many of my disabled friends are unemployed and living with their parents.

Embracing technology has also proved invaluable. I use apps to track my symptoms, medication schedules, and dietary intake, which helps in identifying patterns or triggers that may necessitate changes in my management strategy. This proactive approach to managing my health has empowered me to maintain a sense of control and optimism in my journey with these two chronic conditions.

The Power of Support Systems

Navigating the complexities of Crohn's disease and cerebral palsy has underscored the critical role that a supportive network plays in my life. The journey has been made significantly lighter thanks to the pillars of strength provided by those around me. I found a lot of support and encouragement from YouTube channels such as Squirmy and Grubs, Rolling with Cole and Charisma, and Let's Talk IBD. However, like I mentioned before none of these individuals are in my particular situation. Therefore I decided to create this blog Cerebral Palsy and Crohn's Chronicles. My hope is that it will provide a community for individuals struggling with multiple conditions not to feel so alone and isolated.