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”
“Save the boobies”
“Save the ta-tas”
“Save second base”
These demeaning phrases need to stop.
Continue reading “save the ta-tas”
It’s just …
Sharp pains in my ribs,
An elevated heartrate,
Decreased blood oxygen levels, Continue reading “it’s just a cold”
For the longest time, I had no idea that most people experienced the same responses to noise that I do. I thought that the stress I felt in any loud situation was just my anxiety. It turns out I actually have a medical condition called hyperacusis. Continue reading “what it’s like to have hyperacusis”
As I was dog-sitting my parents’ dog, I lifted my arm to brush hair out of my face, and he flinched. I lost it. Continue reading “an abusive groomer in my town”
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”
Being happy does not mean that I do not struggle with my mental health. I know, this might sound weird if you don’t know first-hand what it’s like to struggle and look fine.
Continue reading “being happy does not mean i don’t struggle”
Some of the following pieces of advice probably sound like common sense, but unfortunately for a lot of us, we need reminders. Maybe you’re perfect, and have no insecurities or bad habits, but I will be the first to admit that I am always trying to work on myself to be a better version of me. Continue reading “pieces of advice”
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…”
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”
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”
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”