Being emotional when you have PCD is hard. Let me explain. Primary ciliary dyskinesia is a rare, autosomal recessive disorder of motile cilia that leads to oto-sino-pulmonary disease. That’s where is gets complicated. Once the body starts seeing the damage of not having properly working cilia, then the you enter into chronic oto (ear) disease, chronic sino (sinus) disease, and chronic pulmonary disease. This disease progression leads to lots of complications for the individual. These complications vary depending on what else the individual has going on, including emotions.
Have you ever tried to have a good cry while you’ve had a sinus infection or a really bad cold? Yeah, sinus infections and feeling like you have a really bad cold is my every day. I’ve known nothing else in my entire memory of my life. Remember in PCD the cilia are broken at conception, you just don’t magically get PCD in your twenties, thirties, forties, or beyond, nor even before those ages either. PCD is a genetic level disorder of motile the cilia. The cilia are put together wrong from the start, you know at conception. Anyways I digress…
My father passed away unexpectedly last Thursday evening. In fact. if you’re reading this on the day it was posted, today is his funeral and last evening was his viewing. Crying and emotions have been running high this past week for me. The emotions mixed with my current progression of PCD have made my everyday even more miserable. Every single time I get started crying, my mucus in my nose gets overly runny, I get choked up, I can’t breathe out my nose, and the tissues go flying. Then I get even more upset and the breathlessness starts, I started coughing, I get choked up, my airways close off, I panic that I can’t get any air in, and my PSO2 stats plummet into the 80s. It’s a miserable cycle. And I hate it. I don’t feel I can grieve well enough without putting myself at risk. I’m fourteen hours from home and my care team. I’m also just shy of fourteen days on a new IV antibiotic round for a PCD exacerbation caused by a pseudomonas pneumonia that won’t go away. I’ve been fighting this since January of this year and already did a nine week course of continuous around the clock IV antibiotics that failed to get me back up to snuff.
Besides all the PCD misery, I’m getting looks from people when I cough, have snot rolling, get chocked up, and so on. If they are not familiar they scurry away for fear I’ve got something like the 2020 thing. If they are familiar they wonder if I’m heartless for not being an emotional mess. I am an emotional mess, but I know if I don’t keep it in check then I’m likely going to end up in the emergency room or at the very least breathlessness with snot pouring out my nose. I should be completely comfortable around my people with my PCD and all that goes with it, and be able to process my emotions. However I can’t. Why, because when I seem in distress then someone is wants to call an ambulance, people are hovering or scurrying away, and they are just exacerbating my symptoms and emotions to the point all heck is breaking lose.
It may seem heartless, but I can’t wait till this time next week when I’m back home at the farm and can process this tragedy in private and out of sight of others. Remember if you have a PCD loved one give them a calm safe space when they are emotional to process and deal with their emotions and what those emotions are doing to flare their PCD symptoms. I’m not sure people really understand how hard being emotional or going through emotional things is when you have oto-sino-pulmonary disease. Give us a break when we are like this, help calm us down, provide calm, don’t hover, and don’t freak us out anymore than necessary. If you do this, a lot of the time an ambulance ride or trip to the emergency room is not absolutely necessary. However when in doubt always seek immediate help for your PCD loved one in distress.
Be sure to join us next week for another Topic Thursday.
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