New and so afraid
I got my diagnosis for systemic mastocytosis not too long ago. A bone marrow biopsy confirmed, and I’ve met with a hematology oncologist for further advice. I feel like I need to remind myself to be grateful for the healthcare I have received. So to those professionals, I am thankful.
But damn, this is debilitating. It’s like I went over 30 years of living “normally”, and then had my whole life derailed. Foods I ate before are now the enemy. Finding triggers has been trial by fire. Multiple week long hospital stays. I’m on daily prescriptions, have emergency epipens and now carry this stuff around permanently, all of which didn’t exist 6 months ago.
I don’t eat well (obviously), sleep well or have the clarity of mind for so much of what I used to do. This fog that surrounds all my thoughts, it’s like a plague to my joy.
I know I’m not alone, and I’m trying to be grateful for what I do have. But I regret not appreciating my life more before this. These brown spots on my body, that I’ve had for years, now have a name. But I wish they were just weird freckles again.
Anxiety consumes so much of my life. My body remembers the cold of my everything as I almost die in the ambulance.
But a person just keeps moving, I guess. What is there to do but live?
Thanks for reading my feelings.