I got my shirt in the mail from Piper! That's me in it above :) It's pretty sweet and I'm so excited to be a part of CF awareness. To know a little more about Piper, go and visit her blog, amatteroflifeandbreath.blogspot.com. Next on the list, work has been going fantastic! The long week of eight hour shifts, I survived (haha). My body made it through. I'm still feeling pretty good. I'm very sad though because my manager is putting in his two weeks. He is really awesome and invited me into the Buckle family in Fresno the first second. The other day when we were both on our lunch he started asking me about my Cystic Fibrosis more. He wondered what exactly it did and what it affected. I told him about all of the basics and how I have to do treatments everyday, about hospital trips, and iv's; all the good stuff right. He asked me "So does it keep getting worse?" When ever I answer this question, it's always interesting to see what the reaction of the person will be. I told him that yes it does, my life expectancy is about 37. His face and answer made me happy. He told me that how can that be; that he has never seen anyone so happy and smiling all the time. Knowing that people can tell that I have so much hope, joy, and faith in life makes me feel amazing that I can be inspiring to other people around me. Next. I've been slacking on exercising, but i start ballet this this thursday and I can't wait to be picking back up with my passion.
Health. I finished my Tobi 28 day cycle and I've started my next 28 day cylce inhaled anti-biotic Colistin. I've heard lots of good stuff about this med and I did a week of it when I was in the hospital. This Colistin better kick the psudeo in my lungs butt so that way I can continue to stay feeling good. The only thing I hate about this, is the fact that I have to mix it myself every single time; drawing sterile water out and mixing it with the powder. This stuff better do it's trick because the nausea I get from it stinks, literally haha. I only get it for about the first minute or so, but i made the mistake the other day of eating right before I did it. Let's just say I won't be eating before I do my Colistin again, after my breakfast decided to give a surprise visit while taking it. Other than that I'm doing great, juts hoping to still get my weight up a little more.
On June 24th, a little boy named Conner, touched my heart. He passed away after battling Cystic Fibrosis and Prune Belly Syndrome for seven years. This breaks my heart, and makes me frustrated, because it's not fair. I couldn't even imagine how much strength and faith this little boy had. His mother blogged about his faith about heaven. She talked about how strong he was to endure so many weeks, years, of the hospital and iv's. It scares me. It just isn't fair that his time here on this earth he had to endure so much pain. Conner spread so much happiness through all of it though; he spread so much LOVE. At his memorial service everyone wore the color red; the color of LOVE. I did not get to ever meet him, but I will always remember Conner. Love, love, love, always, always, always.
a RED rose of LOVE for Conner
