Relapsing Polychondritis

Relapsing Polychondritis
What is Relapsing Polychondritis (RP)?

Monday, September 23, 2019

Just Breathe




The cartilage in my throat, trachea and voice box are all being affected.  My lungs are joining in. It feels as though my pills get caught in my throat. My GP thinks my airways are full of inflammation. It is so hard to breathe, that hardly any exertion makes me breathless. My voice is hoarse, quiet and hard to understand. Now I involuntarily cough to clear something in my throat. I call it the ugly cough. It really is more of a gag actually. When I cough it is as though I have no air and I need to clear a path. I’ve been lately coughing out blood. The doctors are still figuring this one out. I’ve been recently hospitalized and put on loads of prednisone.

The coughing and prednisone keep me awake. My throat gets so very raw from the constant commotion in there. My Rheumy has really taken a back seat on this. I'm grateful for the other doctors that are watching over my care. See Three Ring Circus-Symptoms.  Take-away:  I take my pills, one at a time, before meals, that way the food pushes them down. I finish off with a hot chocolate. I don’t lie down for at least 4 hours after I take pills, then they don’t stick somewhere down the pipe. I don’t talk constantly anymore, that’s probably a relief to my sweet husband. I have every cough syrup, inhaler, pill to stop coughing, known to man,  yet nothing works. I have an appointment with a ENT (Ears, Nose and Throat Dr.) and pulmonologist (Lung Doctor) that deal with trachea and affiliated lung issues. The prednizone in high doses is calming my gag reflex some. Another Most Important Take away: Prayer is the best, I love it when people say I will pray for you.
Chae Cox from Akron, Ohio posted this on our Relapsing PolyChondritis Facebook Support Group, the great way she has chosen to accessorize her breathing tube.  She makes her own trachea collars and dresses them up. Awesome!!


Pain is ever present and varies in degrees and amounts of time it is the worst, but it is always there.  I didn’t talk about the pain. I learned how to do Lamaze when I gave birth to my first son and I kid that I’m using Lamaze on the pain. Take-away: I have Cymbalta (duloxetine) for nerve pain in my spine, Celebrex for the overall pain in my joints and then I take Arthritis Tylenol for the pain through my face and nose. Maxtal is for my migraines. Epidural Injections in my spine, both C and L regions. I stay away from pain killers with aspirin in them as it totally eats my stomach.




 "Good timber does not grow with ease. 
The stronger the wind, the stronger the trees. 
-:- Thomas S. Monson"  -:-


 

2 comments:

  1. Such clear information delivered tongue in cheek, with humor and brutal honesty. As always, I love and admire you dear sister. Prayers always, smiles when I am brave and tears when I think about it too much. One thing is for sure. You are reaching and teaching many who have RP or someone close to them does. You are doing this with clarity and love. I believe your efforts with this blog and the way you live your life, will have far reaching positive effects. I'm so blessed to have you as my beacon, my big sister!

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  2. I didn't say much about being sick until recently because I couldn't see the need to point it out. But people with RP can get so despondent at times and I wish I could give them an infusion of my love and encouragement. This disease is horrid, as it takes us out piece by piece. Caregivers are also the silent victim and don't know how to help so I wanted to show them where I found help so they have some direction. Those around me keep asking when I'm going to get better, or why don't the doctors know how to cure me. So I thought it was time for some explaining. Love you too Susan! Thank you for being my number one supporter. Life is made fantastic with you in it!!

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