Introduction: Meet Keelie, the Chronic Illness Advocate
Keelie is a relentless chronic illness warrior, advocate, and speaker. Since the age of 13, Keelie has been facing the challenges of sickle cell disease head-on. She wants to share her story to help others with a similar condition. She also wants to raise awareness and provide support to those going through a similar struggle, like suffering from chronic pain.
Continue reading as Keelie shares her journey with sickle cell disease and the ways she copes with and manages her condition.
Living with an Invisible Illness:
Living with an invisible illness, such as sickle cell disease, has taught me how to cope with lingering and severe pain or side effects in my day-to-day life, all while appearing normal to those around me.
Knowing more about your health can help you advocate and get the support you need to get better. Being patient and kind to yourself helps you communicate your needs effectively to friends, family, or healthcare providers.
My Treatment Protocol for Sickle Cell Pain Crises
- Identifying Triggers: Recognizing triggers that can cause flare-ups is important. These triggers include stress, exercise, alcohol, high altitudes, temperature changes, and a lack of rest.
- Utilizing the Pain Scale: I utilize the 1 to 10 pain scale to communicate with my family. This gives them an idea of how severe my condition may be.
- Alternative Pain Management:Focus on using alternative methods to manage pain, such as deep breathing, stretching, and heat therapy. I also make sure to eat a balanced diet and drink plenty of water.
- Preparedness with a Hospital Bag: Having a pre-packed hospital bag decreases my stress level. When I travel, I always bring two comfortable pajama sets and my special chest port access hoodie for comfort. I also bring snacks, medical records, and contact information for my doctor. Additionally, I pack small toiletries, charged electronics, a blanket, and a book.
- Prioritizing Mental Health and Recovery: Taking the time to recover is crucial. Sometimes sickle cell can feel like a revolving door as you go in and out of pain crises, surgeries and complications. Therefore, prioritizing your mental health, finding ways to distract yourself to cope with this disease, is imperative.
I recommend trying out things you enjoy, like hobbies or spending time with family and friends. Doing so can have a positive impact on your life.
Conclusion: Empowering Others to Thrive
My journey with sickle cell disease is a testament to resilience and strength. I want to help others facing challenges by sharing my strategies and insights so they can live their lives fully. Living with sickle cell disease can be manageable with patience, self-advocacy, and support from others. It can also be an opportunity to thrive.
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