One night as I was lying in a hospital bed, across the hall was another patient whose young son was running through the hallways. For some reason, the doors to both of our rooms were propped open, and I could hear the patient and her husband whispering. They were trying…
As fatigue took hold of my body, I’d lie in bed and think how lazy I was for not getting up to start the day. Early in my health battle, I had trouble being OK about not being OK. I thought that to become well faster, I had to get…
Note: This column describes the author’s own experiences with anti-thymocyte globulin and Soliris. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When you were diagnosed with a chronic illness, what questions ran through your mind? Did you begin to picture…
I never knew what being a caregiver meant until I unexpectedly had to have them in my own life. To use a metaphor of a video game to describe it, imagine that you are playing the game of life as a patient. You reach another level of the game…
When I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), one of my main questions was, how do we cure my blood disorders? In the beginning, I thought I could snap my fingers and the problems would go away. I’d be able to return to…
I recall hearing people being asked the question “How did you become successful?” Many of the answers were a version of “Work hard now and sleep later.” I used to live by that code. I thought that to be successful, I had to put my health last. I needed to…
Being diagnosed with an illness can result in a plethora of emotions. We may feel vulnerable, hurt, confused, sad, raw, or scared. With tensions high, it can be hard to protect our mental health while gathering information about the disease. After I was diagnosed with aplastic anemia and…
The other day, as I was standing in front of my bathroom mirror, I began to pay attention to my scars. They’ve been on my body for so long that they’ve become a part of me. Many days, as I get ready, I don’t even notice my scars as something…
I answered the doctor’s call with, “Hello, this is Brandi.” On the other end, my doctor paused and then delivered the news: “Your results came back, and they are positive for paroxysmal nocturnal hemoglobinuria” (PNH). I didn’t know what to think. Just that week, I’d been diagnosed…
When asked how I’m feeling, I often force a smile, nod my head, and say, “Good! How are you?” But what I truly want to say is, “PNH is kicking my butt! I am feeling it mentally, physically, and emotionally.” When I’m in the midst of fighting paroxysmal nocturnal…
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