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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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.

But maybe that’s because I will never have a real chance at being healthy. No amount of surgeries, treatments, medications, or magical potions will ever make me healthy. I will never know what it’s like to wake up in the morning and go on with my day with no medications or treatments before being able to breathe somewhat comfortably. But I can do things that make me happy. I can watch a good movie and laugh wholeheartedly. I can spend time with people I care about. I can enjoy a hot cup of coffee in the morning and watch the snow from my living room.

There is no cure for Primary Ciliary Dyskinesia, or any of my other conditions. I know that. This disease will eventually take my life. But it can’t take my joy.

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.

Healthy people don’t have a dozen medications. They can just get into bed and fall asleep at the end of a long day. I don’t have that luxury. If I forget to take my medications before bed, even once, I will pay for it for days afterward. I don’t have the privilege of simply getting into bed when I become tired. I have treatments and medications that cannot wait until morning.

The morning routine is similar. If I overslept and have somewhere to be, I am in a rush to make sure I have done all my treatments and taken all the appropriate medications before I head out the door. At times, I have to take my medications on the go, so as to not be late.

Someone who doesn’t have a mile-long list of medications probably doesn’t have to sit and count them on their fingers every time a doctor asks for a medication list. If I don’t write my list down, I have to use my fingers to count them to make sure I’ve named them all.

A healthy person will probably never have to change careers due to risk of infection. While I love my job and the people I work with, it was never Plan A. I wanted to work in a hospital. I wanted to work with patients, but patients carry dangerous infections. I know several other people with similar health issues to mine that had to make the same tough decisions in regards to their careers.

Never thinking about life expectancy. While there is little research about life expectancy in Primary Ciliary Dyskinesia, I do know that it’s very unlikely I will live as long as healthy person should expect to.

I will never really know what it’s like to be healthy, but I sure do know what it’s like to be sick. And being healthy seems so luxurious to me.

things chronic patients understand

There are certain experiences a healthy, able-bodied person will likely never encounter or understand. For me, some of these things happen frequently. I have several diagnoses, most of which are either rare or misunderstood (I know, I’m lucky, eh?)

Most of these are not unique to me, but might be unique to someone with the same or a similar diagnosis.

  • I know more about Primary Ciliary Dyskinesia than most doctors and nurses I have encountered. Seriously. With every trip to the ER, I have to explain, yet again, what it means to have PCD. I’m all for spreading awareness, but when I’m sitting with the triage nurse and my heart rate is 160, that doesn’t really feel like the time to give a breakdown of basic medical terminology.
  • I see my doctors so often that they ask about how my family members are doing. My Otolaryngologist and Pulmonologist basically know my whole life story at this point.
  • Going one month without a doctor’s visit feels like passing some kind of world record. Seriously. I have seen four in the past month alone.
  • People will recommend you try a treatment that can be very dangerous for a person with your diagnosis. Diffusing oils? Yeah, no thanks. I’m trying to avoid further lung damage, not speed up the process. Cough suppressants? Yeah, I’m definitely looking to die. Seriously, please do a little research before you recommend something like that (especially if the person is not asking for advice). And natural does not mean always mean safe.
  • Being completely fine one day and headed to the ER the next. With PCD, lung and sinus infections come on extremely fast and hard. My body lacks the filters that a healthy person has, which basically means that everything I breathe in becomes trapped.
  • Getting looks of pity from nurses when you give them your medical history and list of medications. I know they’re being human, but I don’t like pity. I don’t need nurses feeling bad for me for the cards life dealt me. I just need them to treat me and take me seriously.
  • It’s often easier for doctors to blame your symptoms on a condition that does not fall under their specialty. It’s more convenient for them to pass it off as a side effect of something that is the responsibility of someone else. And sadly it’s not uncommon.
  • Making doctor’s appointments for a lung or sinus infection is very annoying. I tell the receptionist “I have a lung infection” and she will say “Oh, you have a cold”. Yes lady, I have a fever of 103F, chills and my entire body hurts. It’s definitely a cold.
  • Receptionists will judge your list of medications as if it’s any of their business.
  • Often there is a deeper appreciation for living in the moment. I don’t know how long I’ll be here, so I’d like to enjoy my life as much as I possibly can. I don’t want to waste any energy on necessary anger, or people who don’t appreciate me.

Truly, the list goes on.

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.