Well well, where to start!?
Well well, where to start!? I guess first things first, I was hired at Bath and Body Works and have been working there for about a month now, LOVE it and love my co-workers!!! It’s part time, seeing how it’s my first job I’m thankful cause it’s not overwhelming and they have been wonderful and flexible with my doctors appt. Thank You Lord!!!
Second, I am OFFICIALLY free from my feeding tube!!! YUP, February 7th I had it removed…. Dr was nervous and hesitant that it wouldn’t be able to heal on its own and we’d have to go in and stitch it up. NOPE!!! Later that night when I went to change the dressing, it was already completely shut, with little drainage!! WOOHOOOO :) Down fall to this awesome event…. after doing some workouts I was noticing that I’d get an extremely sharp pain by where my ileostomy take down was, and from my Anatomy days and Athletic Training it seemed to possibly be a Hernia, so I mentioned it to the Dr, and sure enough I have a half dollar size Hernia that will need to be repaired! Soooo surgery is scheduled for March 21st at 1 in the afternoon…. they’re going to keep me over night seeing how I’m on blood thinners and this isn’t a small nor simple surgery, it’ll hopefully(God willing) only be one night, with NO problems :)
Third, my transplant appt on Feb 8th went great!!!! My weight is stable, labs looked good, x-rays were great! I held off on PFTs since I had the feeding tube removed just the day before. More and more I realize just how Blessed I truly am! It’s amazing and still surreal when I really sit down and think about it! We have been in talks about eventually having my port removed, it’s believed that it is playing a huge role in the blood clotting situation…. I fear this is going to be my next big step and leap of faith. Just today I had to have labs drawn and well that was almost like torture! I had drank so much water the night before I felt like I could float away, but at clinic they missed the vein 3 time in one had and twice in the other…. I’m 21 years old and there were 5 year olds doing better than me!! SO it’s hard to think about taking the port out, I’m plagued with the “what ifs” …. I know, bad Amberlyn!!
I am currently running full steam ahead on organizing some events for Amber’s Angels, I can’t even begin to tell yall how much I love my job!!Alot of people ask me why I’m not in school, well for one, alot of my friends who have degrees(and a mountain of debit) are currently unemployed working 2-3 jobs trying to pay off their loans they racked up getting the degree they can’t use! That is an added stress I definitely don’t need, plus alot of schools have an attendance policy that if you miss more than 3 classes you get kicked out of the course, so in fear of being kicked out they show up SICK as a dog and that’s another thing I don’t need!! Yes I do pray that one day I will be able to earn a college degree but right now, it’s not in the cards!! Instead I’m going to focus on Amber’s Angels and striving to make it the best that it can be, making it bigger and bigger each year!! I mean come on, how many 21year olds do you know that are a CEO of their own nonprofit!!? So I may not have a degree but I have something I can take pride in doing something I love, while getting some work experience at a store that I love, WHAT could be better!? :) Over all, life is great!!! With the occasional stress about insurance, meds, Dr appts, you know the norm…. While my health is doing great and I’m stable, the medical bills never go away or get better! So we will be having another benefit this year, details are still being ironed out and set in place. But you can visit www.mybreathoflife.org for info on how you can help. I’m not use to asking for help, I’d much rather the money and time go to someone else, cause I know their are some many other kiddos, teens, adults who have it worse than I do and it breaks my heart. But I am truly humbled, Blessed and extremely Thankful to everyone who has helped me, supported me, and prayed for me the past few years! I most definitely wouldn’t be here today without yall
Well I’m gonna sign off for now! I’ve officially burnt the late night oil, now an attempt at some shut eye! But before I go, Anthony, my CF “brother”, I wrote about earlier…. He received his transplant on February 2nd, and is doing absolutely fantastic!! He has been defying all the odds and continues to surprise the docs. As we all know… the first year, IS indeed the hardest. So please remember to keep him in your prayers!!!
Thank Yall so much for the continued thoughts and prayers!!
All my Love