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One More Time With Feeling
The thing about roller coasters is, after a steep drop and a straight away, they like to throw in a loop. The drop? My first appointment with the heart failure and transplant team, almost exactly one year ago to the day. The straight away? The holding pattern I have been in since then, where I…
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Where The Heck Is My Wagon?
In order to fall off of a wagon, you have to be on it for at least a little while. I call that a win. From June to the end of July I did great. I watched my diet, I worked out, I did all the things, and then…the real world came back, summer ended…
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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…
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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…
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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…
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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.…
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Capes And Roller Skates 