Blog Archive

  • Participating In My Care

    “You have to participate in your own care.”  For years I have heard this phrase, it comes up from time to time in patient groups I am in, around  the importance of self advocacy. It comes up in articles about living with chronic health conditions and seeking care. Doctors and nurses will use it when…

  • It’s A No From Me Dawg

    It’s over. Four days of testing looking at everything, head to toe, and literally my big toes, is finished. I won’t bury the lede, I heard back this morning, I won’t be listed for a new heart at this time. I am not shocked or saddened by this news. After all I have gone through…

  • Spring Break?

    Three years ago, I spent my spring break out running a pandemic and flying to Boston for a fateful second opinion on my health situation. At the time I was frustrated with the care I was receiving at the clinic I had been with for 10 years. The doctor I had been assigned after my…

  • Only Monday

    I woke up at 3:45 this morning and couldn’t go back to sleep. I haven’t been sleeping well the last few days. I also haven’t been feeling my best, it is almost like you don’t get this far in the heart transplant process because you are a healthy person with no reason to feel crummy.…

  • Enough

    I have struggled much of my life with the feeling of enough. Being a sick kid I was always worried that my contribution to my family wasn’t enough to outweigh the cost of time, money, and mental bandwidth my illness required. Once upon a time, and more than once my father remarked off the cuff…

  • It’s not tomorrow.

    “It’s not tomorrow.”  That is the phrase I have been telling myself and my mother at the end of each conversation we have had since Ashley, the nurse coordinator and my self-proclaimed “newest cheerleader” handed us “The Packet”. Perhaps not THE packet but definitely a packet, a packet that indicates we have taken another step…

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