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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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”

i have a problem with five feet apart movie

If you don’t want the movie and/or book Five Feet Apart spoiled for you, then you should probably read and/or watch it before continuing. Spoilers are ahead. You have been warned. Continue reading “i have a problem with five feet apart movie”

living a little

In the past few weeks I have rarely left my apartment for things other than trips to the pharmacy, work, or when I was running low on necessary groceries.

For weeks, every time I was home I was doing the bare minimum. When I was out, I was counting down until the minute I could lie down. Continue reading “living a little”

happiness is more important than health

Let me explain.

You always hear expectant parents say something along the lines of “As long as the baby is healthy, that’s all that matters”, and quite frankly, I think that’s a load of crap.

I understand that no one wants a sick child, but I would rather have a sick but happy child, than a miserable but healthy one. I’ve been miserable and I’ve been happy. But I’ve never truly been healthy, even before I knew it. Continue reading “happiness is more important than health”

little things healthy people don’t have to think about

Last night, I got into bed in my most comfortable pyjamas, turned out the light, and lied down to sleep. As I was drifting off to sleep, I suddenly realized that I had not taken any of my bedtime medications. So, of course, I got out of bed, turned on the lights, and got a glass of water to take all five of the medications that I had forgotten. It was at this point that I mentally began compiling a list of luxuries healthy people have. Continue reading “little things healthy people don’t have to think about”