what if i had gone sooner?

I recently took a trip to my doctor to discuss my mental health. After years of reading posts online about how hard it is to be taken seriously, I truly believed it was pointless to even bring it up. And after years of being told my undiagnosed condition was probably no big deal, I truly believed I would be fighting for twenty years to find out what’s wrong with my mind, too.
This was not the case.

Continue reading “what if i had gone sooner?”

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live like you’re dying

We’ve all heard that expression, “live like you’re dying,” and although I’ve said it in the past, it really doesn’t make much sense to me.

I know what people usually mean by it is that people should live as if they are never going to get the chance to do something again. To me, the phrase gives me mixed feelings. Continue reading “live like you’re dying”

PCD awareness month is for you

PCD Awareness Month isn’t just about patients telling our stories.

It isn’t just a month that makes patients suddenly feel comfortable sharing their experiences. It’s not just for us.

It’s also for you. Continue reading “PCD awareness month is for you”

the thing about “awareness month”

The thing about “Awareness Month” is that the patient with the condition we’re supposed to be spreading awareness about is never not aware of it.

No matter how many times I forget my medications. No matter how many times my symptoms improve. No matter how “healthy” I may appear. And no matter how many good days I have. I am always aware of my illness. It is never going away. Primary Ciliary Dyskinesia is genetic. I have had it my entire life, and will have it until my very last breath. Continue reading “the thing about “awareness month””

PCD awareness

October is Primary Ciliary Dyskinesia awareness month, and boy do we need it.

Almost every new doctor I see (new specialists, emergency department, after hours clinics, etc.), I have to explain to them what PCD is. It’s sort of exhausting that most doctors know less about my condition than I do. And it certainly doesn’t make me feel like I am getting the best care or opportunities.

Don’t get me wrong, my specialists for my PCD-related symptoms are amazing and they do their research. But when I’m in the ER and the triage nurse acts like I am there for a cold, even though my heart is racing and I have a fever, it feels a lot like I am not getting proper care. Or when I’m at an after-hours clinic and a doctor recommends I take a cough suppressant, it feels like I am being completely ignored.

When my neurologist recommends I try a medication that is not recommended for patients with chronic respiratory disease, I feel like I am wasting time with someone who does not care about my health.

When I wake up deaf in one ear for the fourth time this week, I know this won’t be the last time it happens, because that’s just a side-effect of the disease.

I’m tired of hearing my symptoms likely won’t get any better, but more than that I am tired of explaining over and over to new doctors who think they can fix me. We need more awareness, more education on rare diseases, and doctors who will sit and listen to their patients.

 

save the ta-tas

“Save the boobies”

“Save the ta-tas”

“Save second base”

These demeaning phrases need to stop.

Not only are they yet another way to make it okay to objectify and sexualize women, they also take away from the seriousness of breast cancer. Breast cancer kills. It does not discriminate. Yes, even men can get it. And I’m sure it doesn’t make them feel better to hear people saying “save the boobies”. There should be no reason anyone should feel any sort of shame for fighting cancer.

October is Breast Cancer Awareness month. Make people aware that people should always be prioritized before their non-vital organs. Every life is important.

Check yourselves.

Yes, even you.

What to look for.

Learn how to do a breast self-exam at home.

Where to donate.

my bucket list

We’re all going to die. I probably don’t need to point out the obvious. Everybody dies. Death is inevitable. There is a one hundred percent chance you will die. But for some of us, our expiration dates come early. And we need to make our lives matter.

I may not ever be Prime Minister. I will probably never change the world. But I can do things that make me happy before my time is up if I’m not going to be world-famous for doing something great.

I have compiled a list of things I wish to do, experience or accomplish before I kick the bucket. The list will probably grow as time goes on and I will keep this post updated as I complete my goals.

Here it is.

  • Get a tattoo.
  • Visit a different continent.
  • Have a pet named Richard.
  • Build a piece of furniture from scratch.
  • Adopt a senior pet.
  • Learn a third language.
  • Find true love.
  • Write a book.
  • Learn to make chocolate souffle.
To be continued…

i was fine until i wasn’t

I was fine until I wasn’t

I was doing well, until things changed.

One moment, I was sitting with my lung specialist, as tears of joys filled my eyes, listening to her go on about how much my condition had improved this year. I had no idea that I was just a few days away from being the sickest I have felt in years. Continue reading “i was fine until i wasn’t”