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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...

Tuesday, March 13, 2018

The Battle: Mind, Soul, and Body

Where do I start...

My last post was in September, right after we got home from visiting Jeff's family in Indiana. Shortly after I made that post, we kind of decided, "spur of the moment", to pack up and move to Indiana. Jeff had a great job opportunity and we are able to be closer to his family. So Jeff left a few days after we arrived back in North Carolina to get a jump start on our new life chapter in IN. I stayed behind in NC to get our house packed up and take care of a few other things there.

During this time, I found out I was expecting! I was so excited, but so terrified because I lost our babies the year before. At a routine OB appointment, I found out there were TWO heartbeats! We were having TWINS! (Identical!) My previous miscarriage was with fraternal twins. I was walking on eggshells, praying so desperately for these babies to stay alive. Unfortunately, we lost them around the same time as our first set. My heart shattered, again. There is nothing I want more than to have a child, but it's all in God's hands and I have to trust him!

I joined Jeffery, again, in Indiana on Thanksgiving Day. My father-in-law drove down to NC to tow the U-haul and I followed behind in my car. It took about 13 hours in total. And it was a fairly uneventful drive aside from the U-haul trailer falling off of the truck going over a bridge in Charleston, WV because the guy at the U-haul place didn't allow for any give when he tightened the ball on the hitch. Thankfully, dad's a badass and was able to get the truck and trailer safely off to the side of the interstate without damaging the truck, trailer, or anything in the trailer!  Mator and Diesel did really well on the drive, most of the time they were sleeping.

A few days later, I was hospitalized for about a week for an exacerbation and finished out another 2 weeks at home. Home is with my mother and father-in-law for now, while we search for our dream house. We've looked at quite a few houses over the last few months, but haven't found one we love yet. I've been in the hospital/on home IVs 2 more times since. My body is not adjusting well to the dramatic climate between NC and IN. My lung function actually went down while on IV antibiotics the last time. I'm no longer responding to any of the other antibiotics that have worked in the past. So we decided I needed to be admitted and desensitized to Zosyn, which I am anaphylactically allergic to, because it's the only one my cultures are showing a response to. However, my little brother, Ryan, was graduating OSUT (basic training for infantrymen) the following week and I already had bought a plane ticket to Georgia to go see him, and I was NOT missing that. The team agreed to me going and being admitted when I returned to start the desensitization and 3 weeks of IV antibiotics. I had the best time seeing my family (whom I haven't seen in 2-3 years!) while in GA, but I was completely spent by the time I got back home and was a direct admit the next day.

The desensitization went smoothly! I did not need any Epi shots (thankfully!) and we were able to manage reactions with just IV Benadryl every 2 hours. I had another bronchoscopy done while I was in. We were able to clean out quite a bit of junk, but there was still a lot left as I was in quite a bit of distress during the procedure so we had to stop. I was also put on blood pressure medication with this admission as my BPs were extremely high without a clear cause. I am continuing to take the BP meds for now and we will reevaluate at a later date. I was inpatient for the first week of this course, and I am currently working on my 3rd week of antibiotics at home. Still managing reactions with IV Benadryl and have an Epi pen on hand just in case.

The past few months have been hard for me. I've been battling many physical symptoms of CF (which isn't really new), but I've been struggling much more with the emotional/mental aspect of living with CF. And it has been a challenge trying to keep my head in the right frame of mind. I am constantly trying to find something, anything to just hold on to, to keep myself going and to keep fighting the fight. But I am tired, not only physically, but also emotionally and mentally. It angers me to not be able to do everything a "normal" 25 year old woman should be able to do. Being tied to an oxygen tank and IVs more often than not is so difficult. All I want to do is be able to go to the grocery store without needing to come home and sleep for the rest of the day, just to recoup from the hour long endeavour and to be able to contribute within our family and within society.

I have been fiercely fighting to keep my head above water, but it just seems so useless, hopeless. One step forward then three steps back. My energy bank is empty. And I am constantly feeling like a burden to all those around me. I unintentionally make myself believe that their lives would be so much easier without me in it. It's getting harder and harder to convince myself otherwise. I'm still fighting and I'm not giving up, but I really am not sure how much longer I can do this... :(

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