CF Aware

Today is the first day of cystic fibrosis awareness month. Though most of my blog talks about this because my POTS usually under control. This past week has been a little symptomatic with my POTS but we will talk about that later.

This is the month where "we scream a little louder for a cure." But I guess this a good time to tell you how overwhelmingly sick I have been with CF this past month.

It has been almost a month of never ending sickness. I get off antibiotics for a few days and then I am right back on them for almost a week. I have been very dependant on my oxygen. Using it around the clock. I am on steroids every other day to a week or so at a time. Due to all the swelling in my airways with pollen season, I have not been able to efficiently clear my airways. Which means more mucus sits in my lungs, which puts me at a higher risk for an infection.

If I am out for more then six hours that infection is right back. 24 hours laters I have a fever. I am sure this is more so because I have the bacteria permanently colonized in my lungs. We have under control enough to cope with it. I am on around the clock benadryl because of this to. Between my MCAD and the my nasty airways its needed. Some days that I have to go out, Wonder Woman is coming for a parking place up close because me walking on oxygen even has been rough. I cough, wheeze, my heart sky rockets and I just feel as though I am going to collapse. It's awful.

I've been on oxygen to the point, I went to wipe my noes and it was nothing but blood. Something I have only told Wonder Woman. My airways are so dry from the oxygen that they are cracking and bleeding. My chest aches from the coughing and pressure and most night I go to sleep with a heating pad on my chest to make it bearable to breathe. This has been a more recent thing, or well more frequent i should say.

I sleep propped up and oxygen. Some morning I wake up and my lungs are still stiff, most I am ok. But I can't sleep with out it.

And my weight?? The only reason I don't have a feeding tube is because my doctors seen how much I can eat. My weight is low to the point I am considered under weight but my labs are decent and again I can eat a LOT. When I am sick I am more dependent on smoothies then food though.

Life gets rough when it comes to my health. I spend hours doing treatment. Though I can say I have a truly amazing life. Because people around me make it so.

Enough depressing stuff for now.
Love Y'all
~Poppet