Hey Everybody, Josh here! Sorry we've been slow on the updates lately but with Amanda approaching the end of the school year and me on the job hunt, to say life has been hectic is an understatement. I promise, more updates are coming soon and you're going to love what we have in store.
That said, a few people have asked what inspired this journey while a few already know. I thought I'd clear that up for everyone.
To start, I have Cystic Fibrosis (CF). Don't google it. But really. Oh no, you did it. Well, I'll take it from here anyways. CF is a genetic disease. You're born with it. To win the genetic jackpot, your parents both have to be a carrier of the recessive gene. If they're ever so lucky, there is a 1 in 4 chance their kiddo will be born with CF, 1 in 4 chance the kid will be just fine and a 1 in 2 chance they will be a carrier as well. There are roughly 30,000 people living with CF in the US (70,000 worldwide).
So I fell in the minority in those statistics and was born with CF. I also happened to be born in a time where great research and medical advancements are coming more rapidly than my parents or I ever expected (WHICH IS AWESOME).
So how does CF effect me? Well, to start,
CF in most primarily targets the lungs. Our bodies do not properly process thick sticky mucous that then builds up in most vital organs. I do daily treatments that are roughly 2 hours a day (slightly over an hour in the morning, slightly under in the evening) including inhaled medicine and chest oscillation therapy via a vest that pretty much just shakes me up (that all my friends want to try for some reason?). When the mucous doesn't all clear out, it causes bugs that would normally secrete right through a healthy set of lungs to set up camp and hang out for a bit until they wind up showing symptoms and I'm given either oral or intravenous antibiotics to come in and do work. In my younger days, those antibiotics would generally kick those bugs in the teeth and send them packing. However, CF is a progressive disease. Antibiotics are now a way to keep the infections at bay and manage symptoms.
It also forms that same sticky mucous in other important organs. Because of this, most patients are pancreatic insufficient. That's a big, fancy way of saying that my body just stinks at breaking down food. I have to take pancreatic enzymes to retain any of those ever important nutrients. I take 8 per meal, 4 per snack...basically a million pills a month give or take. The enzymes do a good job. A great job. The best job we could ever ask of them (Lets Make CF Great Again!). That said, my body is constantly burning through all the nutrients I do intake whether its fighting to breathe with 40ish% lung function (less when sick), constant lung infections that my body keeps trying to fight (it can't), and just the day to day fun of life. I recently saw a post that it takes a person with CF 40% more energy to do the same task as someone without. I don't know if that's true, but I'd believe it. In short, no...you don't wish you could eat whatever you want :P
Put all of this together and you get a Josh that needs all the extra (healthy) fats, calories, carbs, etc that I can possible get in a day. I also take nutrient rich supplements to help with that. What you consider a meal replacement shake, I consider a light snack to pack on the pounds. Even with ALL THOSE extras, I'm still in roughly the bottom 15% of weight in people my height, age, etc.
So CF attacks my lungs, attacks my ability to absorb food properly, takes hours out of my day, cost crazy money, adds stress...but wait, there's more! It also causes more hospital stays than most people could even comprehend. Whether I'm in once every two years or every three months, sitting in a hospital bed for up to two weeks gets old QUICK. When those bugs decide to flair up in my lungs, hardcore intravenous antibiotics are a must to jump in and take over the fight. They reduce symptoms and even kill the bacteria completely if I'm lucky. Don't feel too bad though...the food in Casa de UNC is pretty friggin' good. Not as good as Amanda's cooking, but still good (I mean...Sushi...in a hospital)
But alas, I promise, I'm not a doom and gloom type of guy (well...not usually. We all have bad days). Sure, CF makes things tough. Throughout my 28 years, I've dealt with the emotions of wrestling this disease from mental insecurities, losing my faith, finding that same faith even stronger, watching friends get tired of caring and walk away, seeing loved ones struggle with watching me struggle and more than you could imagine. I don't know why God gave me this disease. I will never pretend to understand. But he did. He also happened to give me an absolutely unbelievable support system and every. single. point. Never once can I remember a time when I didn't have SOMEONE to call when I needed help. I've never been alone when things just plain suck and I need someone to complain to. My parents drop everything when I need something. Amanda takes everything like a champ and just keeps on rolling with crazy faith that everything will be just fine. Add on to that the tremendous research being done currently and the *literally* life changing medicine both available for certain patients and coming soon for others (myself included) and I have WAY more to be thankful for than to complain about.
Thanks for following along and if you made it this far, you deserve a prize. I don't have one..but give yourself a pat on the back for me. This is just a tiny little insight in to the guy you see who starts every video with a half smiling "hey everybody!" This post definitely should not bum you out. My life has its struggles but I'll be darned if it's not an amazing ride. Smile. Be happy. I know I am. Just giving a look in my day to day. My future is looking bright, my food is still just as yummy as can be and I'm going to keep kicking *family friendly censorship here* and running my side business (shameless plug for RDUPrep at jellis720.wixsite.com/rduprep/) for decades to come.
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