(no subject)
On Sunday, I had to admit that my port had been hurting a bit, and I had to change the needle. I was on my every six hour med, Aztreonam, so I had been hoping to wait it out till Monday, when I'd go back to one of my every 8 hour meds, Cefepime. I was out with Steph, but she kindly came back to my apartment with me to hang out after I pulled the needle. It had been in contact with my skin for too long, so it was all pink and had rubbed away a bit. Ew.
It's remained pink, and since I've been feeling pretty good, I decided it was time for a break. It's been nice- almost a week of just sleeping in, showering without having to cover my port up with a cut up ziplock bag, and feeling "normal". That said, it's going to be hard to go back to it. I know I have to, as at clinic this week, my PFTs had taken a very slight dip, but enough to remind me once again I'm on borrowed time here. I can't afford any mistakes, and I don't have the freedom to play around. It's been nearly a year since I started this regimen, and for the most part, I've been happy with it. It lets me stay home, and live life (albeit, sometimes only in the hours between meds). But the past few months, I've grown a little weary of it. A year of waking up every day for meds, going back to sleep, waking back up, disconnecting, going back to sleep, hooking up again various times a day, and the SHOWER thing- I hate having to do so much prep just to bathe. I like just stepping in the tub, and letting the water run on my skin. It's not as fun when you hear the sounds of the water hitting the plastic tarp on your chest.
Today, however, despite my dreading accessing my port again, I felt ashamed of it. One of the cystics I follow online, is a 23 year old girl named Gina, known as Pepe. She's a tower of strength that I can't fathom, that my heart aches for, and my brain can't understand. My lung function at clinic, was 30% of what a normal person's would be. Gina is living with 6%. No, that's not a typo. She lives in the hospital, sometimes having to be vented. She lives in pain, not being able to take pain meds, as they cause her O2 sats to drop even more. Her lungs bleed, and she has embolizations to stop them. She lives on, not because there's nothing to help her, but because she wants to. If she said the word, she could be given morphine, and would probably drift away. But determination, and hope, unlike any I've ever known, gets her through each day, and lets her thank her lungs, as crappy as they are, for still working enough to keep her alive. I'm humbled, and ashamed when I think of how much Gina goes through every day, and how I stupidly complain about my med schedule. Pray for Gina, if you're the praying type. She wants so much to live, and to be put out of her misery and live on. She's having a tough weekend already, and could use the thoughts.
Friends of Pepe blog
It's remained pink, and since I've been feeling pretty good, I decided it was time for a break. It's been nice- almost a week of just sleeping in, showering without having to cover my port up with a cut up ziplock bag, and feeling "normal". That said, it's going to be hard to go back to it. I know I have to, as at clinic this week, my PFTs had taken a very slight dip, but enough to remind me once again I'm on borrowed time here. I can't afford any mistakes, and I don't have the freedom to play around. It's been nearly a year since I started this regimen, and for the most part, I've been happy with it. It lets me stay home, and live life (albeit, sometimes only in the hours between meds). But the past few months, I've grown a little weary of it. A year of waking up every day for meds, going back to sleep, waking back up, disconnecting, going back to sleep, hooking up again various times a day, and the SHOWER thing- I hate having to do so much prep just to bathe. I like just stepping in the tub, and letting the water run on my skin. It's not as fun when you hear the sounds of the water hitting the plastic tarp on your chest.
Today, however, despite my dreading accessing my port again, I felt ashamed of it. One of the cystics I follow online, is a 23 year old girl named Gina, known as Pepe. She's a tower of strength that I can't fathom, that my heart aches for, and my brain can't understand. My lung function at clinic, was 30% of what a normal person's would be. Gina is living with 6%. No, that's not a typo. She lives in the hospital, sometimes having to be vented. She lives in pain, not being able to take pain meds, as they cause her O2 sats to drop even more. Her lungs bleed, and she has embolizations to stop them. She lives on, not because there's nothing to help her, but because she wants to. If she said the word, she could be given morphine, and would probably drift away. But determination, and hope, unlike any I've ever known, gets her through each day, and lets her thank her lungs, as crappy as they are, for still working enough to keep her alive. I'm humbled, and ashamed when I think of how much Gina goes through every day, and how I stupidly complain about my med schedule. Pray for Gina, if you're the praying type. She wants so much to live, and to be put out of her misery and live on. She's having a tough weekend already, and could use the thoughts.
Friends of Pepe blog