no cinderella period for me

There’s this thing PCD patients experience, usually referred to as the “Cinderella Period”. The Cinderella Period is a time in the patient’s life in which symptoms related to Primary Ciliary Dyskinesia seem to lessen in severity for a while, before worsening once again. This usually occurs in the late teen years or early in adulthood.

I will be 24 this week and I am still waiting for my Cinderella Period. Maybe I simply will not have one. Or maybe mine was so short that I didn’t even realize it when I had it. Continue reading “no cinderella period for me”

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how i make the perfect batch of cookies every time

In case you didn’t know, one of my many hobbies is baking. And not to brag, but I think I’m a pretty good baker. Seriously, the sugar cookies I always bring to work have been deemed “Ashley Cookies”.

If you were looking for an original cookie recipe, you have come to the wrong place (but stay tuned for that). Continue reading “how i make the perfect batch of cookies every time”

my normal is…

When you have a condition like Primary Ciliary Dyskinesia, you forgot how abnormal your normal is. You forget that most people might not know their normal resting heart rate. Most people don’t have to take their temperature several times a week. Most people don’t have to have pulmonary function tests several times a year. These things might not be considered normal. But for me, they are just part of life. Continue reading “my normal is…”

how a recent decline in lung function has changed me for the better

When your lung function decreases by ten percent in less than a year, it’s a scary feeling. Lung function can bounce around a lot, especially when you have frequent lung infections and flare ups. But at some point, the drop in lung function becomes harder and harder to get back. Eventually, it will become a permanent loss; and it’s terrifying. Continue reading “how a recent decline in lung function has changed me for the better”

my problem with designer babies

Scientists have become almost too good at certain things. One thing that can be a bad thing is designer babies. While I understand that genetic testing during fertility treatments can help a couple weigh the risks of their baby being born with certain conditions, I think it’s wrong that a person should have the ability to decide not to have a baby that isn’t good enough. Continue reading “my problem with designer babies”

a whole new level of tired

I’m tired. All the time. No matter how many hours I sleep. No matter how much coffee I drink, and no matter how well I eat. I am tired. I will probably never know what it’s like to actually feel energized from a good workout. I get in a good workout, and I immediately feel like I need a nap. If I have plans to go out to a party or to a bar, I try to fit in some time to rest beforehand, so I don’t have to end the night early. Continue reading “a whole new level of tired”