The First Layer being the foundation. The part that balances all the ingredients and makes it sturdy. That being my fiance and the day that he proposed to me on 10/10/10. I felt like the luckiest girl in the whole wide world when he proposed to me at the Morikami Japanese Garden. I must have shook my head so many times it was though I was a little bobble head doll and of course said the magic word "YES" followed by times infinity. It was the most magical day of my life and it is forever stamped into my mind. I don't know how I could have been so lucky to find him. To me he is that four leaf clover that you only stumble upon once in a lifetime. I'm floating on engagement bliss right now!
The 2nd layer- The saucy, meaty, cheesy goodness was when I was told by my doctor that I was going to have a respiratory therapist come over to do chest physiotherapy on me everyday in the morning. I feel so spoiled because I've never had a specialist come to my home everyday before just to beat on my lungs. Mainly old school chest PT could only be done when I went into the hospital. As a child, my mom would clap/beat me on my chest to help get up the mucus but as I got older it became of course harder for her to do. The Vest or flutter became my form of chest physiotherapy but nothing compares to old school chest physiotherapy done by a professional. Before my respiratory therapist came into the picture my fiance would occasionally beat me and it was acceptable lol. But it's nice to give him a break and let a respiratory therapist do all the work. :) For 45 minutes every day in the morning my therapist beats me and I love it!
Third layer- After 6 weeks of intense I.V. therapy I had the line pulled! No more PICC line and I'm so happy to be free! It's not the PICC line part or the hospitalization part that I hate the most. It's more of the feeling like I'm on a leash and my CF is the thing that's holding me back. It's that reminder that as many times as I try to run free, it catches up to me. My FEV1 is back up to 51% and is staying stable. I'm just praying that I won't fall back again. I'm feeling amazing and free of infection. Although, I still have the abnormal production of mucus which is part of having Cystic Fibrosis. Unfortunately, the I.V. med's can't get rid of the mucus. The I.V. meds just clears the infection so that I can have the energy to work hard every day to clear the secretions out of my lungs and helps to create less mucus production. Creating a snowball affect of good times. A part of me did not want to get off of the I.V. meds because once getting a taste of having less peanut butter thick mucus production, clearer airways, less inflammation, breathing easier, more energy.... trust me you wouldn't want to give that up in a second! But I knew that I couldn't stay on the hardcore antibiotics forever because in the long run it's not good for the other organs in the body...ZONK!
Forth Layer- I have made a goal to run a half marathon in which I'm currently training for. I know you would think someone with 51% lung function(practically half a lung) running a half marathon is nuts. But it's just my can do attitude right now and I'm sticking to it. As I've been training my right lung has been giving me problems causing pain. My right wussy pants lung needs to learn that I'm going to accomplish this goal and needs to join the can do party already! I'm super excited and I can't wait to check it off my bucket list!
Fifth Layer- Sauce, Cheese...and more Cheese. I'm involved right now in an Ataluren/PTC124 clinical trial. This drug trial is for CFer's only with a rare mutation or properly defining it as a nonsense mutation for all you science nerds out there. :) I have one Deltaf508 mutation(90% of CFer's have this mutation) and one W1282X mutation(rare/nonsense mutation). There are many, many different mutations of Cystic Fibrosis. That is why every case of CF is different. In a short explanation, basically this drug will psyche the W1282X mutation that I have into believing it's "normal" and making it function properly causing less thick mucus production, easier breathing, and fewer hospitalizations. This is the scientists trying to get closer to a cure, getting down into the cellular composition of it all. If it works, it will be a huge breakthrough. In past phases there was an increase of lung function in patients. I have to take the powdered form of the drug, mix it in water, and drink it three times a day. I'm hoping for high numbers and no double heads! :)
Everything perfectly baked to perfection....
