So, it's been a few weeks.

And a long few weeks at that. I honestly don't even know where to start.

I know the weight of this world can take you down like gravity.
And I know the current of yourself can take you out, out to sea. 

That, right there, pretty much sums it up. The weight of the world, and the current of myself. But I'll get back to that part. 

First things first... For those of you who aren't friends with me on Facebook, I'm in the hospital again. This is my fourth admission for the year of 2013. I've been here eight days. 

A good blogger would probably have updated when this first started, but I'll be honest, it's been a very long week. And it's taking damn near every ounce of strength I have to not fall completely apart. I'm going to say right now... this particular post is going to be a complete train wreck. And I completely understand if you get halfway through and have no idea what I'm talking about or think I'm being completely ridiculous. Because I probably am.

So, I was admitted to Naval Medical Center Portsmouth on Friday, June 14th for a "tune up." Yes, like a car. About twice a year, I have to come into the hospital for a 10-14 days at a time to just get an overall boost for my body. I get IV therapy, aggressive respiratory care, and various other treatments/tests. This is pretty routine for all cystic fibrosis patients, although the frequency varies. Some can go years without a tune up, some need it every 2-3 months. It all depends. 

Usually, I do my tune ups at the end of spring semester and the end of fall semester. At the beginning of May, after my classes ended, I skipped my usual admission. I wasn't feeling that sick and decided I could handle it at home. I did extra treatments and really focused on my health for a week and I felt much better. But after a few weeks, I felt crappy again. And by the middle of June, I called my doctors and told them I wanted to be admitted. I wasn't completely at critical mass sick, but I knew if I tried waiting any longer I would be.

I had a procedure done first thing Friday morning to get a picc line placed. For the record, a picc line is a semi permanent IV line that runs from my upper arm to my heart for IV antibiotics. Typically, they can be used for 2-6 weeks but my usual is 3 weeks. My usual tune up is 1-2 weeks in the hospital, then around 1-2 more weeks of IVs at home with the picc. 

The first few days were chaotic, as always. My health is incredibly complex. At home, I have 16 different medications (a total of 21 pills and 10 nebulizers/inhalers, three different times a day) plus, 2-5 digestive enzymes and insulin with all food, plus 6 cans of a high calorie supplement through a g-tube overnight, and finally, two 30 minutes sessions of respiratory therapy through a VEST system. 

Kind of a lot, huh? Well, when I'm in the hospital... I have even more. Add in two more 30 minutes VEST sessions, 1-2 oral antibiotics twice a day, oral steroids, and depending on my cultures, 1-2 intravenous antibiotics through a PICC line in my arm anywhere from 1-4 times a day, for 30-90 minutes at a time. Needless to say, it's complicated. Particularly when you consider than certain medicines can't be taken together, I have two different basal rates and two different carb rations for my insulin, lung function tests to be taken twice a week, half a dozen specialists to see, labs to draw, x-rays/ultrasounds/various other tests and procedures to be done... oh, and I'm still a full time college student and have to accomodate my class schedule so I don't fall behind. 

Then, you have to consider that fact that every 12 hours, I get a new set of doctors and nurses to work with. I've been doing this for years and I barely remember everything. Try only getting 12 hours. Please don't me wrong, I don't blame my doctors or nurses at all. I know they are doing their job the best they can, but I am high maintenance, to say the least. Understandably, it takes a few days to get the kinks worked out. Things get forgotten, certain orders don't get written clearly, information doesn't get transferred over at shift change and well... the new people don't quite understand me or my disease. I'm on a Peds ward where the majority of the patients are still in diapers. But, I'm not a child. I'm 21 years old and I know what's going on. And I'm stubborn, I'm not going to agree to something if I don't know or understand why I'm being told to do it. Sometimes, it can be a power struggle. I understand and respect that they know medicine, but they have to respect that I know my own body. Again, I'm not blaming anyone or even angry. But I would be lying if I said it wasn't stressful those first few days.

Long story short, my disease is complicated. And every admission takes some time to get things running smoothly. There were some minor issues over the weekend. Had a meltdown one night because of some miscommunication with the residents and ended up paging my doctor at 12am.. oops. But it got worked out. By Monday, things were going pretty decent. I was given passes to leave the hospital for a few hours on Mon, Tues and Wed so I could attend class. I was still coughing a lot and was pretty exhausted, sleep is a precious commodity in this place, but all in all, I was doing okay. My weight and my lung function were both improving. 

Thursday, however, was a much different story. As far my health goes, Thursday, June 20th was one of the worst nights of my entire life. Definitely in the top three. Around 1pm, I went to the OR for a double procedure. The first part was an endoscope of my stomach. I've been having some pain around my g-tube site and they thought it could be an ulcer. The second part was a bronch lavage of my lungs. A bronch is a procedure where they go into my lungs with two different tubes, a scope to take pictures and a tube that squirts salt water in, then sucks it back out to try and clear some of the sticky mucus. They are also able to take cultures of the mucus to test for bacteria. This is where things took a turn for the worst. I've had several bronch done before, but my doctor said this time my lungs were the worst he has ever seen them. They are red, irritated and inflamed and bled every time he touched the tissue.

Recovery was absolutely hell. I was under anesthesia, so that was rough to begin with. Hazy, weak, exhausted. I had a breathing tube in the entire time, which makes for one of the worst sore throats you could ever imagine. Because of the position of my head during the whole thing, my neck muscles were throbbing. Then, the procedure itself is difficult on the lungs and can cause chest pain and severe coughing afterwards, but because of the shape of my lungs this time... Let's just say, I wouldn't wish that it on Adolf Hitler. Gut wrenching pain every time I took a breath. Coughing up pure blood, almost non stop for hours. I've coughed up blood before, but never like this. Before it's been tiny drops, mixed with mucus. This was bright red, pure liquid blood, 4-5 chunks at a time, every 10 or 15 minutes. If you ever want to be literally scared for you life, try being half conscious and seeing that in a bucket on your lap. And the icing on the cake? The combination of the drugs, pain, fear, and probably the fact I hadn't eaten all day, gave me a migraine headache that made me genuinely considered chopping off my own head. Okay, not really. But it was bad. To put things into perspective, there have been two times in my entire life I have ever cussed on Facebook. Both have been about my health. One was Thursday night. 

About four hours, three doses of morphine, two doses of dilaudid, benadryl, tylenol and a caffeine pill later... I could actually stand to have my eyes open. 

So, that was my week. I know a lot of people have been worried about me and I'm sorry I've been so negative and out of touch. As much as I would love to say I'm doing better now, I'm not. Physically, yes. I'm better than I was Thursday. The pain has subsided for the most part. It hurts to cough, but otherwise it's significantly better. As of this evening, the blood is finally gone, but I'm still coughing much more than normal. And there have been no migraines, so yes, physically, I am doing better. Emotionally though... I feel like I'm standing on tight wire across the Grand Canyon and it's pouring down rain. 

I quoted a song lyrics by Tenth Avenue North earlier and I said I'd get back to it.. but I'm afraid I have to cut it short for tonight. I was hoping to get to the point where I explained the meaning of any of this, and that there's a lot more to this week than just the hospitalization. But just recapping took longer than I thought. I started writing this over four hours ago, and this is as far as I've gotten so... yeah. I need sleep now. Hopefully, I will have time tomorrow to get on and attempt to put the rest of the chaos that is in my head into words. 

And now that I have probably successfully ruin anyone's mood that has read this post, I'll finish on a positive note. I should get to go home tomorrow. I know I will feel better once I do. This place is a seriously killjoy. I can't wait to see my puppies and sleep in my own bed. And as delicious as they might be, eat something other than chicken nuggets for lunch.

Growing up with an expiration date.

This past week, I had the opportunity to attend a Cultivation Event hosted by the Cystic Fibrosis Foundation. For those of you that don't know, I work as an intern for the CFF. It's pretty informal, my boss just emails me when she has something for me to work on. I do graphic design work for the local chapter, but I also get to help plan fundraisers, attend and work at various events throughout the year and am a member of the local Board of Directors. I've been working with them for a little over two years now and it's one of the best opportunities I've ever had.

The Cultivation Event is relatively new to the CFF and quite different from most events. The primary goal of most events is to raise funds for CF research, to improve the quality of life for patients and ultimately, find a cure for the disease. This is not the case for the Cultivation Event. It's more of a social mixer, with the intent to inform attendees about recent CF developments and encourage newcomers to become involved with the organization. This was only the second year hosting the event for the local chapter. There was a good turnout and overall just a great night. 

There were a few speakers for the night; our board president, Bob Boyd, a CF parent, Susan VanLandingham, the national VP of gifts, Regina Schewe, and finally our local director, Kimberly Johnson. There was great stories and information throughout, but my favorite was something Regina shared... that it hasn't been officially released, but the CFF has increased the national life expectancy from 37 to over 40 years of age. 

I shared this on Facebook, but I wanted to talk about it a little more in depth here. 

It's not easy to grow up knowing that you're going to die. And sure, everyone dies at some point, but I mean really going to die. I'm talking about knowing deep down that you're going to die a painful, drawn out, unjustified, early death. Knowing that you're never going to experience some of the greatest joys in life; retiring to sunny Florida, holding your hours old grandbaby, seeing your daughter walk down the aisle, proudly clapping as your son graduates high school. Or worse, knowing that you may never dance at your own wedding or even walk across a stage to accept your own diploma. 

When I was born, the "average" life expectancy for CF was about 18 years old. This means that half of patients die younger, half die older. My mom shared with me something the other night that I had never heard before... while most doctors were telling her the national statistics, one was more blunt and told her flat out, I probably wasn't going to live past five years old. 

Five years old.

Forget college diplomas, I wasn't even going to reach kindergarten. To be honest, I'm glad my mom never told me that before. It's pretty harsh. It was hard enough to accept 18. And the current 37 years. But 5? I can't even fathom... for the record, this is just another reason why my mom is one of the most amazing women I have ever known. To be told that about your precious little baby is unconceivable to me. It takes a particular strong person to hear that and not let it completely destroy you.

Things have improved greatly since I was born. Obviously, I'm a wee bit older than five years old. The current life expectancy is in the high 30s. Although as Regina shared, it has recently increased  to the early 40s. But let's be honest... 40 isn't exactly old. Most 40 year olds haven't even put their kids into high school yet. Just because it's improved ten fold, doesn't mean it doesn't still suck. 

The fact of the matter is that I'm going to die early. Before the majority of my family and friends and certainly before I get to do everything I want to in life. 

So how do grow up knowing that? How do you plan for the future, when you don't even know that future exists? How do you have dreams, hopes, goals, when both logic and biology are determined to crush them? How do you go through life watching everyone around you grow up and move on with their lives, without wondering if you'll ever have the chance? How do you come to terms with your own mortality? How do you accept growing up with an expiration date?

Short answer? You don't. Not that I've figured out at least. Being optimistic versus being realistic is one of the single most difficult parts of being sick. On one hand, there's this energy inside me, this unbounded light in my heart that say screw the statistics, I'm going to make it. I like to think it means I'm determined, but stubborn is probably more accurate. There's nothing quite as empowering as being told you can't do something, that's just human nature. I've already accomplished more in 21 years than anyone ever expected me to and I'm not done yet. There's a hope inside me completely convinced I will be fine. I will graduate college. I will find a career that I love. I will get married and have children. I will raise my children (and realize I am exactly like my mother in doing so). I will see them graduate high school, get married and have babies of their own. And then I will retire and live happily ever after...

...and then there's this gut wrenching darkness in the very core of my being. A darkness so overwhelming that at times, I can't even find the strength to get out of bed. It that rips through every hope and dream I've ever had, completely wrapping me in paralyzing fear. This darkness is a voice inside my head that screams at me to stop being naive and accept reality. And reality is that I'll be lucky to even make it another five years, much less fifty.

Some days, the light radiates. And some days, the darkness consumes me. It's a constant battle. Well.. no. A battle implies that one side will win, or that one side is better than the other. With this, there isn't  a winner and honestly, there shouldn't be. I can't be naive and completely ignore the reality of my condition. But I also can't limit my life just because some biology text book says my body is broken. So no, it's not a battle, it's a balance. It's finding a way to strike some level of harmony between these two forces inside me. Because alone, both would destroy me in their own way. But together, they command a level of determination, realism and strength I can't find anywhere else.

This whole idea has been more apparent and crucial the past few years than ever. Maybe because my health is progressing with age, maybe because I'm old enough now to actually understand what it all means. Who knows. But, if I stand any chance of being successful, happy and healthy, I have to find a way to accept my fate without allowing it to restrict me. I have to find balance. I think I have done a good job so far, but I definitely have a long ways to go.

When I was 7, I played with babydolls without a care in the world. Now, I see my friends having children and I can't help but feel my heart sink a little bit, wondering if I'll ever get the chance. As a child, I was naive. I didn't understand what mid thirties meant. As I get older, I am able to better appreciate and experience life, but I am also inching closer and closer to that looming expiration date.

So what am I getting at... honestly, I'm not entirely sure. Ha. Yes, things have improved and I've done a pretty decent job, so far, of trying to find balance.. but the bottom line is those statistics still exist, for a reason. They're real. I can't deny that. I'm sick and unless things change, significantly, I'm going to die.

Lucky for me, things are changing! ...but to keep this post from being awfully long, and because my class starts in six minutes, that part of my story will have to come later. I know, I'm such a meaniehead. It'll be worth the wait though, I promise :) 

Friday's Finds... a few days late.

Eventually, I will actually get one of these posted on Friday, ha.

For the record though, I purposely waited to post this week because my mom and I had plans to go to the Antique and Flea Market in Olde Towne on Saturday. I've been waiting like six months to go, so I was pretty excited. Overall, it was fun. A lot more antiques than I expected.. not all of which were in great condition, but I still found a few things :)

These colored wine bottles were 3 for $2. I'm not really sure what to do with them, but I'm sure Pinterest can help me. I just thought they were really pretty. And a really good price!

I got this desk lamp for $5. The color isn't showing that great, it's more of a minty blue-green. I tried to get a better picture, but it just wasn't happening. The chrome neck is adjustable and the lamp itself is really bright. Definitely going to be a cute addition to my bedroom! 

I also got Heart of the Matter by Emily Griffin by $1. I haven't read any of Griffin's books before, but I've seen some good reviews and wanted to for a while. Excited to pass some time poolside with this one.


I also spent a little time on eBay and made a trip to Goodwill since my last post.

I found this Victoria's Secret bikini for $10.99 on eBay, tags still attached. Not usually a fan of animal print, but I like this one a lot. I just love swim suits. I own way too many in comparison to the number of times I actually go swimming. 

Lastly, I got this pair of flats from Goodwill for $4. They are Nine West and in great condition. A little bit of wear to the soles, but that's all. With jeans and a tank top, it'll make the cutest outfit for a summer night. 

With a total of just $22.99, that's it for this week! Again, sorry for the tardiness. I'll get there eventually. Practice makes perfect, right?