Fridays Doctor Appointment

    I had a doctors appointment yesterday with my new primary doctor. After having the same doctor since I was born they finally switched my primary to someone new. I will still be seeing my CF doctors that I've always seen!! Normally I have a really hard time letting in new members of my health team because I don't know them, I don't trust them. But for some reason with this new doctor I don't feel that way. I trust him 100% and I really enjoy seeing him. For the last year or so, every time I would leave the doctors I would leave feeling bad about myself and bad about everything I was or wasn't doing. So it was really nice yesterday when I left the appointment happy. He never once said anything negative. He was proud of everything I've been accomplishing lately, with all my appointments and what not. It was definitely a much needed breath of fresh air :) Since leaving the hospital, I've gained two pounds, which is a big accomplishment for someone with CF. And for the most part, everything else is looking really good!! Yay!!! Yesterday, I also had to have some labs taken. I was told to go to the nurse treatment room to have them done, because instead of getting poked, they can take labs from my port. And of course I wasn't about to let someone poke me if it wasn't necessary. Well the only person at the nurse treatment room that does it wasn't there because it was their day off. So I went over to the infusion center (another place that can take labs from my port). The nurse that was going to take my labs, had NO idea what she was doing... Now, just so you guys know, taking labs from a port is quite possibly the easiest thing to do, I could do it with my eyes closed. I was not comfortable whatsoever with this nurse doing it. I literally had to tell her what she needed, what she was doing, and I walked her through how to do it. I wanted to claw her eyes out, because something that should have taken 5 minutes ended up taking a half hour..unacceptable if you ask me. It was the most frustrating thing. By the time I got home, I was ready for a nap. Needless to say, I took a two hour nap when I got home :) lol

    There has been so much going on lately and I know that this is just the beginning of it all. I literally have at least one appointment each day, monday-friday. It's so overwhelming.. I'm so lucky I have my mom here to help me keep everything straight. I can't even begin to thank her enough for what she's doing for me. I love you mom, thank you for everything. On top of all my appointments, I'm also having to take care of myself. Which right now includes, two IV antibiotics (ones every 8 hours, and the other is every 24), three different breathing treatment session,s which each time includes (two inhalers, two nebulized medications, and a vest aka chest PT), over 10 different medications (averaging to about 60+ pills everyday), and at night I have to do night feeds to help but on weight. Not to mention all the other normal things I do everyday. Such as, taking a shower, getting dressed, getting ready for the day, doing laundry, making my bed, eating, chores. And because my body has to work so hard to breathe, all of these things are extremely challenging for me to do. Without fail, I take at least an hour nap everyday. Taking care of myself is a full time job. I'm negative 10 spoons everyday (reference to another blog post; "The spoon theory"). For everyone out there that thinks they have such bad lives for whatever reason, just remember that you're lucky you don't have to worry about if the breath you just took was possibly your last. Be thankful for just being able to breathe with no struggle. Being able to breathe is a wonderful gift, I can't wait to be able to take a full deep breath one day. But for today, I'm thankful that my lungs haven't given up on me yet!

    Good news is, I don't really have anything going on this weekend, so I can hopefully just rest a bit! I have a busy ish week ahead of me next week. So if my post are a few days apart, it's because I'm sleeping. But I will keep this updated to the best of my ability! 

    Prayers and good thoughts are very much so appreciated and welcome!!
-Amanda :)