Living with Sickle Cell Thalassemia

 My Untold Story of Pain, Struggle, and Hope

Introduction:

My name is Kacian, I an 37 year old, and I've been living with Sickle Cell Thalassemia for as long as I can remember. This rare genetic disorder has been my constant companion, bringing unpredictable pain, fatigue, and emotional turmoil. For years, doctors dismissed my symptoms as normal pain, epilepsy/ Fainting spells or growing pains. But I knew something was wrong. It wasn't until  September 28, 2023 before i was diagnosed, while suffering from sepsis, a curel blood poisoning that nearly took my life, was in the hospital for months getting treatment. If you're reading this and have been similarly dismissed, know you're not alone. My story is your story – a story of struggle, resilience, and hope.

My Symptoms: The Unseen Battle

- Anemia: Imagine waking up every morning feeling like you've run a marathon. Fatigue clings to me like a shadow, making everyday tasks daunting. Simple things like taking a shower or cooking meals leave me winded.

- Pain Episodes: Excruciating pain seizes my body without warning. It's like being trapped in a nightmare. My joints ache, muscles spasm, and skin burns. Some episodes last hours; others, days. I've lost count of hospital visits, injections, and meds. Pain management is a delicate dance – finding the right balance between relief and addiction.

- Shortness of Breath: Air feels thick, heavy. I gasp for oxygen like a fish out of water. Even slight exertion leaves me panting.

- Dizziness, Lightheadedness and Fainting: The world spins, and I stumble. Simple tasks require extra caution to avoid falling.

Pain Management: Finding What Works

Pain management is a delicate dance. I've tried various meds, techniques, and therapies to find what works for me. Currently, my regimen includes:

- Baralgin, A powerful pain reliever for severe episodes

- Tramodol, For moderate pain

- Augmentine, For mild pain and fever reduction

- Meditation and Deep Breathing: Calming techniques to reduce stress and anxiety

- Heat and Cold Therapy: Applying heat or cold packs to painful areas

- Rest and Relaxation: Even though difficult at times, I Prioritize sleep and avoiding strenuous activities

Lifestyle Changes: Adapting to My New Normal

Living with Sickle Cell Thalassemia requires significant lifestyle adjustments. I've learned to:

- Stay Hydrated: Drinking plenty of water to reduce pain episodes

- Avoid Extreme Temperatures: Steer clear of cold or hot environments

- Exercise Gently: Engaging in low-impact activities like yoga 🧘‍♀️ 

- Manage Stress: Practicing stress-reducing techniques like meditation and deep breathing

- Get Enough Sleep: I really do try Prioritizing rest to help my body recover, but I also suffer from ansominia

Raising Awareness: Breaking the Silence

Sickle Cell Thalassemia is often misunderstood or overlooked. I'm speaking out to raise awareness and break the silence. If you're suffering in silence, know you're not alone. Advocate for yourself, and don't give up until you find a doctor who listens.

Hope and Resilience: My Story Isn't Over

Living with Sickle Cell Thalassemia is a daily challenge, but I remain hopeful. I'm learning to embrace my new normal, finding joy in small moments and cherishing time with loved ones. My story isn't over – I'm still writing it, one day at a time.