My Latest Update – October, 2024
Treatment Update
There is a certain kind of grief in stepping away from the life you’ve built, but sometimes there is no choice. At the end of July, I had to step away from work completely — a job I poured my heart into for six years. It’s surreal to think that in my early twenties I’m navigating the reality of worsening health and forced to pause the life I once took for granted.
The past few months have been a whirlwind of emotions. There’s been grief for what I’ve had to let go of, gratitude for the support and love I’ve received, and determination to keep moving forward. Healing has become my full-time focus, and while the challenges have been immense—physically, emotionally, and financially—I hold tightly to hope.
This January, I’ll be heading back to the Spero Clinic in Arkansas, the one place where I began to see progress before financial constraints forced me to leave. Returning feels like a lifeline, a chance to rebuild, to fight for the life I want to live. But it’s also daunting—the logistics, the costs, and the sheer uncertainty of the journey ahead.
As part of preparing for this next step, I humbly ask for your prayers. Prayers for provision, prayers that I’m able to find affordable housing (If you happen to know of any resources, or someone who could help, please reach out), prayers for healing, prayers for hope, prayers for peace. Every step forward feels like a leap of faith, and your prayers make that leap a little less scary.
Living with CRPS feels like navigating an unpredictable storm. The constant, ever-shifting pain makes life feel insurmountable at times. Simple tasks like getting out of bed, taking a shower, or folding laundry can become monumental efforts. Most of my time right now is spent in bed, often in a dissociative state to endure the pain and symptoms. On some days, I can watch a movie, but on tougher days, even that feels like too much. Eating is another daily battle. Between gastroparesis and CRPS, getting enough nutrition is a challenge, leaving my body even weaker.
Flares come without warning. One day, I might have a little energy, and the next, I’m sidelined—sometimes by stress, weather changes, overdoing it the day before (I’m a little guilty of that, oops), or for no apparent reason at all. It’s a constant game of pacing myself, adapting, and simplifying life just to get through. The emotional toll is heavy. The uncertainty of whether tomorrow will be better or worse is mentally exhausting. But even in the darkest moments, I search for small joys. On better days, I might have enough energy to bake—something I’ve recently grown to love. Maybe it’s a control thing, who knows, lol. A kind word, a favorite TV show, or even a moment of peace can bring joy.
To those of you who have been by my side: Thank you. Thank you for your prayers, for checking in with kind messages, for simply sitting with me during the hard days, and for your financial sacrifices to help me pursue this treatment. Your love and support are the foundation I’m standing on as I prepare for this next chapter.
From the depths of my heart, thank you. 💜
Brielle'sCRPS Journey 