The Lupus Diaries: Starting My Journey
Hello and welcome to my blog!
Just a few months ago, I received a diagnosis that has already started to reshape my life in ways I never imagined. I have lupus, an autoimmune disease where my immune system attacks my own tissues and organs. As I begin to navigate this new reality, I want to share my journey with you—the ups and downs, the triumphs and struggles, and everything in between. Whether you are also living with lupus, know someone who is, or are simply curious about the disease, I hope my experiences can offer insight, support, and a sense of community.
The Shock of Diagnosis
Receiving the diagnosis was both a relief and a shock. The unexplained symptoms—relentless fatigue, mysterious aches, and strange rashes—I finally had an answer. But along with the relief of having a name for my condition came a whirlwind of emotions. Fear, confusion, and uncertainty loomed large. How would this affect my life? What changes would I need to make? And most importantly, how could I manage this condition and still live a fulfilling life?
Early Days: Coping with the Unknown
The early days were the hardest. I felt overwhelmed by the flood of information from my doctors, the barrage of tests, and the myriad of medications. Each day seemed to bring a new challenge, whether it was coping with side effects, managing flare-ups, or simply coming to terms with the fact that my body was fighting against itself.
This is all so new to me. I spend endless hours trying to learn about lupus. I get bombarded with ads about what can heal or help reduce lupus symptoms, as well as googling all my symptoms, what my recent bloodwork results mean, what side effects my meds have, and more.
Finding Strength in Routine
One thing that has helped me immensely is establishing a daily routine. Starting my day with meditation, prayers, and expressions of gratitude has become my anchor. These practices help me set a positive tone for the day and build mental resilience. I also make sure to pace myself, balancing activity with rest to avoid overexertion.
The Emotional Rollercoaster
Living with lupus is an emotional rollercoaster. Some days, I feel strong and capable, ready to take on the world. Other days, the fatigue and pain are so overwhelming that even getting out of bed feels like a monumental task. I’ve learned to be gentle with myself on those difficult days, allowing myself to rest and recharge without guilt.
The Importance of Support
One of the most valuable lessons I’ve learned so far is the importance of having a support system. Family, friends, and support groups have been crucial in helping me navigate this new chapter of my life. Whether it’s a shoulder to cry on, or just a listening ear, having people who understand and support me has made all the difference.
I am starting this blog to build a community of support—a place where we can share our individual stories and find safety. We know each warrior’s journey is different, and different things work for different people. This is a place of zero judgment and no gaslighting. Please share your thoughts and stories.
Moving Forward
As I continue to learn about lupus and adjust to my new normal, I am committed to sharing my journey with honesty and openness. There will be good days and bad days, but I am determined to face them all with courage and hope. This blog will also help people who want to learn more and support us. It will help us explain how we feel and what we are going through, and how different each person’s journey is.
I often hear, “Well, this worked for the person I know with lupus.” But most of the time, it doesn’t work for me. It is disheartening the number of things I have tried that didn’t work. Together, we can discuss these experiences and find strength in our shared challenges.
I’m learning to live with the pain and not lose myself in the process. For those who have lupus or know someone who does, understanding these experiences can foster greater empathy and support. Let’s engage and deepen our understanding together.
Thank you for being here. Let’s navigate this journey together, one step at a time.