About Me

My photo

I'm Amber... Born July 15. I was born with a genetic disease called Cystic Fibrosis (CF). CF is a progressive disease of the lungs and also affects the digestive, reproductive, and endocrine systems. All my life I have been a fighter. I've had to fight for something most others don't even think about, to live and breathe from the day I was born. I'm stubborn and I can be a huge handful. I'm very strong willed, but easily pleased. I love putting a smile on peoples' faces and making them laugh. I believe in second, and sometimes third, chances. I wear my heart on my sleeve and I tend to trust too easily. My family and friends mean everything to me. <3  I try hard not to judge people because I hate when others judge me. I am who I am and that's all there is to it, but that doesn't mean I always like who I am...
 

Saturday, November 8, 2014

Figuring Out Life

Hey y'all! I hope everyone is having a good weekend so far! I am sitting with three awesome kiddos while their parents are at a dinner party. They're watching funny videos right now and its so fun to see how they think and interact. It reminds me just how badly I want to have kids someday!

Since my last post I have been back to clinic for a post-hospital follow-up. I was pretty nervous about how that appointment would go, but it turned out to be pretty ok. My PFTs were stable! Weight is down again. They want me to try getting my tube feeds increased again to help me gain more weight more quickly. Being under 100 pounds is definitely not something I enjoy and its not healthy for me in the least. Having low body weight can affect lung functions and does not allow the body to fight off infections as easily. Before leaving the doctors office, I was given an xray and labs were drawn to check my CBC and metabolic panels. My xray showed slight improvement and lab work was a little off so they want to recheck next week to make sure I am stable. Overall, it was a fairly satisfying appointment. 

Last night, I was blessed to enjoy a bon fire with some friends. It was a good time and I am even more blessed to be able to do the same tonight after babysitting. I feel so fortunate to be able to experience the company of some very wonderful friends! 

I have also been so thankful to have been able to spend some much missed time with my little brother, Lucas! I am so happy he's come down to North Carolina to stay with us for a short period of time. And now since I have the approval, I can let everyone know I am going to be an AUNTIE! Lucas is going to be having a son sometime between the end of February and the beginning of March! Lucas and the baby's mother, Kristen, have chosen the first name Bentley and are still thinking about a middle name. 

There's been a lot of stuff going on in my personal life that I am needing to make some big changes/decisions about. I do not feel that I can go into much detail at this moment, but I will definitely let y'all know when I am comfortable with those changes or decisions. I can tell you that I am going to be doing some soul searching and thinking hard about what is in my own best interest. I've always felt life quality is more important than quantity and I need to be sure I am doing everything I can to keep myself happy and healthy so I can enjoy life. 

I hope everyone has a good night and I will update again when I can! 

Monday, November 3, 2014

This Life I Live

Do y'all just ever have a downer day for what seems like no reason? I have every single reason to be up beat and excited right now, but I feel like my world is being rocked. 


Blood transfusion while in ICU
I just got out of the hospital yesterday. I was in for two and a half weeks. Initially I was admitted for lung function and weight, but ended up in ICU for GI issues. There was nothing more that could be done for me in the hospital so they sent me home and are keeping a close eye on me. I have a clinic appointment with PFTs and lab draws on Thursday this week to check up. We'll see if I need further GI follow up at that time. 


Things with marriage are going so great right now. Justin and I have definitely had our issues, but lately things have been wonderful. I am so relieved to have him by my side right now. I really don't think anyone else would be able to handle my health issues and my mood swings like he has. When so many others would leave, he's stayed. To be completely honestly, I often wonder why, but I am so thankful. 

Life is looking good in so many ways. I am working on getting my health insurance straightened out. Family life is great. I really don't have anything to feel depressed about, yet I still do.

Maybe its seeing so much loss via social media. Over the last month alone so many people have passed from the same disease I fight against every single day. Some of them are here one day and gone the next. Its a huge shock at times... 

These are a couple of my recent Facebook statuses:








































Losing fellow CFers is not easy whether you knew know them on a personal level or just through social media or maybe not even at all. Its never easy to see someone else has gained their angel wings fighting the same thing you are fighting. It never gets easier. Sometimes you become numb to the thought of losing another, but in the end it cuts just as deep. 

https://www.youtube.com/watch?v=Yjt4mRaI554 Morgan does an amazing job describing CF from a Cystic Fibrosis sufferer's perspective, not the medical definition, but the emotions. 

I don't really know why I've been feeling the way I am, but I know I just need to breathe and leave it to God. He will always provide. He always has the right answers, I just need to listen. <3