Yesterday was rare disease awareness day, which I live with daily. Cystic Fibrosis has taking up so much of my life. And as my lungs slowly start to go down hill, I spent a lot of yesterday doing well a video game I need a million more XP for something... Thats just a side perk of CF.
What you dont see and what my poor friend had to listen to this morning is the hacking and coughing after mucolytics, I got on game right after treatment this morning which is super rare because every time I did something obnoxious with my tonics I would laugh or make sound effects and thinned mucus would move. Of course when I got on this morning I said hey just did my meds prepare the coughing and the wheezing. And boy did I cough and wheeze. And I ate a lot of calories and was trying to come up with more ways to get a high cal count in. And then I ate some more to eat some more to do some Yoga to drain my lungs.
POTS is also kinda rare though there is some debate if its truly rare or rarely diagnosed and this is the easy disease to me, run some saline, take my meds and im good. But what you dont see?? Dressing changes, appointments, the placements, and the tons of supplies that I have shoved in every corner. Literally every corners. The loads and loads of salt I eat and the mast cell disease to go with it?? Benadryl. Lots and lots of Benadryl. The hives, the blisters, the lack of food I can actually eat, the lack of meds I can actually take and because of both of these disease the dysrhymias.
I also have a couple anemias which isn't terrible but the med side effects are, and my lung function is so so so poor my cat is literally ripping her fur out. Because she is so use to me lungs going down hill she knows what it ultimately leads to. Im not to sure how rare these are I never actually looked .
I also have a form of IGG deficiency that I was born with. 1 in 50,000 people have this disease and why is this so bad?? Because I cant fight off infections which sucks because not only do I have CF I have high IGE levels so I cant properly fight off allergic reactions either.
My life is a complex mess, what can go wrong will go wrong, and we embrace every step it leads us. We embrace life with open arms and we never take a single moment for granted.
Love Y'all
~Poppet
What you dont see and what my poor friend had to listen to this morning is the hacking and coughing after mucolytics, I got on game right after treatment this morning which is super rare because every time I did something obnoxious with my tonics I would laugh or make sound effects and thinned mucus would move. Of course when I got on this morning I said hey just did my meds prepare the coughing and the wheezing. And boy did I cough and wheeze. And I ate a lot of calories and was trying to come up with more ways to get a high cal count in. And then I ate some more to eat some more to do some Yoga to drain my lungs.
POTS is also kinda rare though there is some debate if its truly rare or rarely diagnosed and this is the easy disease to me, run some saline, take my meds and im good. But what you dont see?? Dressing changes, appointments, the placements, and the tons of supplies that I have shoved in every corner. Literally every corners. The loads and loads of salt I eat and the mast cell disease to go with it?? Benadryl. Lots and lots of Benadryl. The hives, the blisters, the lack of food I can actually eat, the lack of meds I can actually take and because of both of these disease the dysrhymias.
I also have a couple anemias which isn't terrible but the med side effects are, and my lung function is so so so poor my cat is literally ripping her fur out. Because she is so use to me lungs going down hill she knows what it ultimately leads to. Im not to sure how rare these are I never actually looked .
I also have a form of IGG deficiency that I was born with. 1 in 50,000 people have this disease and why is this so bad?? Because I cant fight off infections which sucks because not only do I have CF I have high IGE levels so I cant properly fight off allergic reactions either.
My life is a complex mess, what can go wrong will go wrong, and we embrace every step it leads us. We embrace life with open arms and we never take a single moment for granted.
Love Y'all
~Poppet
No comments:
Post a Comment