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?

10 Thing Tuesday: Things I'm Looking Forward to in June

I've always liked weekly blog features (make-it Monday, wordless Wednesday, thankful Thursday, etc). Sometimes, I think blogs can get a little out of hand and chaotic with just random post after post. Weekly themes are a good way to keep some stability and organization. It keeps it from getting overwhelming.

One in particular I love reading each week is 10 Thing Tuesday by Lauren Conrad. I absolutely adore Lauren Conrad, (post Laguna Beach, of course). She is classy, stylish, freaking gorgeous and incredibly successful. I just love her. And each week, she does a list of ten favorites, tips, or just whatever. This week was a "Summer Bucket List." Other recent weeks included Tips to Improve Your Focus, Green Cleaning, Favorite Immune Boosting Foods, Style Tips, etc. It always a unique and interesting topic and just fun to read.

I probably won't be that exciting, but I definitely want to start my own 10 Thing Tuesday. I'm going to keep it simple this week, though I am certainly open to suggestions or requests for future weeks!

With no further ado, my first 10 Thing Tuesday.

"Ten Things I am Looking Forward to in June"

1. Working at the Kenny Chesney concert with one of my best friends. Ashley and I were asked to work at a promotions booth for A Step in Time Chimney Sweep, a local sponsor for the venue. The show is June 6th at the Virginia Beach Amphitheater (it was renamed to Farm Bureau Live a few years ago, but we all know it's the amphitheater and always will be). We work for about two hours, get paid $40 and then get free lawn admission to the show in time to see the headliner. Pretty good gig, if you ask me. And, since I actually already have a ticket to the concert, I can resell it and make even more money! Holla. 
2. Wearing sundresses. I love dresses, so much. I have entirely too many in my closet. And I am SO excited that it's finally warm enough to wear them. It's a silly girl thing, but I just love them. They makes me feel pretty and happy. 
3. Beautiful weather and summer drives. Obviously, warm weather is a given plus for the summertime. Everyone likes sunshine. My favorite part though? Driving with the windows down and feeling the breeze. Having a good song playing from the stereo helps too :) 
4. Saturday Flea Market in Olde Towne, Portsmouth. I've heard about the flea market in Portsmouth. It's the first Saturday of every month in the historical Olde Towne district. I went once back in March, but it was so cold that I only stayed for a few minutes. I've been waiting for the weather to cooperate enough that I can go again without getting hypothermia. Well, it's suppose to be 90 and slightly cloudy this upcoming Saturday so I'm going to give it another shot. I haven't been to a flea market in a few years so I'm definitely excited. 
5. A. My summer classes. I'm actually really excited to see how my summer classes develop. They are both Public Relations classes and I love the class material. Both classes have pretty creative final projects as well, so those will be interesting.
   B.  The end of my summer classes, ha. As exciting and interesting as they might be, I'm definitely looking forward to June 27th which is the end of the semester. Not dealing with the midtown tunnel at 4pm, four days a week... yeah, def excited about that one. I'll have about 7 weeks off from school before fall term starts. As much as I love school, it will be a much needed and appreciated break. 
6. Beach trips/pool days. There is nothing I love more about a hot summer day than picking out a bikini and soaking up some rays on the sand or poolside. 
7. Putting my Kindle to good use. I recently got a Kindle and it's quite lovely. I have already finished three books, which is more than I have in the past five months. I downloaded about two dozen free books the other night; some classics, some new. It'll be fun to get back into reading, especially on those lovely pool days.
8. Enjoying my first summer as a 21 year old. I'm not really a big partier or drinker, but I am definitely excited about finally being old enough to enjoy a beer on a warm summer night. There is always something going on at the bars in the summer. I'm looking forward to spending some nights out on the town with friends. 
9. Hopefully, meeting the beautiful little miss Makayla Lilly Meents. One of my absolute favorite people recently welcomed her first daughter into the world. Unfortunately, between finals and then summer semester starting up so quickly, I haven't had a chance to drive down to Jacksonville to see them. I am really hoping to take a weekend in June to go visit and see Alyssa, Jesse and their little princess. 
10. SAND SOCCER. Aaaahhh, last but certainly not least. Sand soccer is one of the single greatest weekends of my entire year. A whole weekend of soccer, sunshine, and sand. And I always see tons of old friends. It's just awesome. I'm coaching a u15 girls team this year and my baby brother Jordan is playing on two different teams. So it'll be crazy busy, but I can't wait! 

30 Things

As much as I love talking about shopping and cooking, I must admit a huge influence in starting this blog was my health. I try not to broadcast myself as "sick" and I certainly don't expect or even want pity, but I can't deny the fact that my health is a very prominent and serious aspect of my life. I don't necessarily understand why I was given this adversity and I definitely am not always okay with, but I do see the positive that come from it. God gave me the ability to handle it, for one reason or another. And truth be told, talking about my health, both the blessings and the trials, is a coping mechanism for me. It's my way of making sense of it, and making it mean something.

I found this prompt on a blog a while back and bookmarked it, knowing eventually I would start my own blog and fill it out. I figured for those who don't know, or even those who know but might be too nervous to ask more questions, this is a great way to introduce my health. It's called "30 Things About My Invisible Illness You May Not Know."

1. The illness I live with is: Cystic Fibrosis and Cystic Fibrosis Related Diabetes.

2. I was diagnosed with it in the year: 1992, at 7 weeks of age.

3. But I had symptoms since: birth. I was born premature with a low birth weight and was initially labeled Failure to Thrive. When my weight decreased, despite being fed a high caloric formula every 1-2 hours, 24 hours a day for a month straight, my mom and doctors began looking into additional causes for weight difficulties. My respiratory symptoms began around 1 year of age.

4. The biggest adjustment I've had to make is: learning to respect my body's limits and transitioning from being a child to an adult who takes responsibility for my own health. Sometimes, I get caught up in life and the fact that I am an active 21 year old and literally just forget about my health. As much as I want to be "normal," I have limits. And when I push myself too far, there are consequences. I've learned that I really can't stay out late two nights in a row without needing a full day to recover. Or when I run errands, if I try to make more than about 3 stops, I will wear myself out and need a nap when I get back home. I've also struggled to transition from being a kid and being taken care of, to a grown up and taking care of myself. And trust me, I'm not very good at it yet. Even if I'm 21 and a junior in college, I'm still very much a girl who would be a wreck without her mother.

5. Most people assume: that I am this strong, mature, always happy person. And most days, yeah, I am. But I have my bad days too. I cry, I yell. I drive too fast with too loud of music blaring. I struggle, I fall apart. Some days, I'm happy. And some days, I'm sad. Some days, I'm mature and can accept things, and other days, I'm a whiny little brat. Some days, I am strong, and some days, I need strength.

6. The hardest part about mornings are: EVERYTHING, haha. I hate mornings, so much. I don't always sleep well and I wake up everyday around 4-5am to turn off my feeding tube, so I rarely get a full nights sleep and feel rested. I also wake up nausea for no reason at all every now and then. Just waking up and getting active is difficult. Additionally, I am suppose to do 45 minutes worth of nebulizers and respiratory therapy in the mornings. I'm going to be completely honest here, it's a good week if that happens even twice. On days I have class, it never happens. Finding that kind of time is really difficult for me and definitely an area in need of improvement. 

7. My favorite medical TV show is: House! I'm actually watching it right now :) Although, pretty much all medical shows are completely unrealistic. There's hardly any nurses and the residents do everything. Anyone who has actually been admitted to the hospital knows that's not how it goes, at all. I literally cannot remember a single time a doctor has actually brought me medications while I was inpatient.

8. A gadget I couldn’t live without is: medically related? My portable nebulizer machine, the E-Flow/Trio. It's the size of a softball and battery powered, so I can walk around the house and am not tied down by tubing. It also runs significantly faster than the standard machines. All gadget though? Definitely my phone. The wifi at my hospital is sketchy, to say the least, so my phone is my lifeline when I'm admitted. It keeps me connected to people in the outside world, lets me play games or browse Pinterest when I'm board, and listen to music when I need to escape.

9. The hardest part about nights are: finishing up my nightly treatments and especially setting up my nightly g-tube feed. By the time I am ready for bed, I am so tired, I just want to sleep. I don't want to do breathing treatments for 45 minutes. I don't want to take 10 different pills. I don't want to spend the time to pour cans of formula into a bag, prime the tubing, hook up the extension, and give myself insulin. Plus, the formula smells so gross it makes me nausea just opening the cans! I wish I could just changed into sweats and lay down without any worries. 

10. Each day I take: 7 different oral medications, 4 different vitamins, 5 inhaled medications, digestive enzymes and insulin with all meals and snacks. I also take supplemental feeding through a g-tube overnight and do respiratory therapy through my VEST system twice a day. 

11. Regarding alternative treatments I: am open to it, within reason. I'm not about to just stop all my pharmaceutical medications and start popping herbal supplements... but if something seems beneficial, I'm willing to try it. Recently, I ordered tubs of coconut oil on Groupon because I heard from a few friends that it is a great supplement for weight gain. I haven't started it yet, because I don't have the supplies I need to put it through my feeding tube, but I plan to get some at my next appointment and then start it. Fingers crossed it helps because I haven't been over 100lbs in over six months. Stuffing my face with Taco Bell and ice cream doesn't appear to be working, so I'm exploring new options :P

12. If I had to choose between an invisible illness or visible I would choose: an invisible illness. I really don't like being pitied, and when you have a visible illness, that is very difficult to avoid. I don't want to be seen as the "sick" girl. I'm not ashamed of my health, but it is a personal affair and I prefer to be able to decide who gets to know and when on my own terms. 

13. Regarding working and career: I'm terrified. I have only held part time jobs so far and even that was difficult. I'm scared that I will never have the physical capability to work. 

14. People would be surprised to know: in December 2011, I had a severe allergic reaction to a medication that only 1 in 1 million individuals develop. 

15. The hardest thing to accept about my reality has been: recently, the waiting game. Within the next 5 years, there will be very promising and very effective new medications for CF patients. Medications that will literally change the entire landscape of care. Problem is, I have to make it that far. Currently, my lung function is 50%. One bad infection could drop me to the 30s. Once your lungs deteriorate that much, it can be very difficult to regain function and most patients are evaluated for transplant. I know that if my health falls to that point before the new medications come, they won't be very helpful for me. The anxiety of waiting and the uncertainty that comes along with it is very unsettling. 

16. Something I never thought I could do with my illness that I did was: attend and excel in college. When I was born, I wasn't expected to live past high school. I was relatively healthy throughout my childhood, only had 3 hospitalizations total. High school, however, was a very different story. Starting my sophomore year, I was hospitalized 2-4 every year. I ended up being "held back" a grade because of it. Thankfully, I started a year early, so I ended up still graduating on time. Regardless, throughout high school, I never honestly expected that I would be able to go to college. I was accepted to Virginia Tech my senior year, but I chose to stay at community college because I didn't think I could handle being away from home. It was a really hard decision, but it was for the best. I had my struggles; hospitalizations, incompletes, make ups and extensions.. but I ended up graduating from TCC in May 2012 with a perfect GPA. I transferred to ODU that fall. Again, I wasn't truly sure I could handle it... but so far, I'm two semesters in and I still have a 4.0. I am absolutely loving my classes and having a fantastic time. I am still cautious when it comes to my health; I had a rough time over spring break this year and took a lot of extensions. In the end though, everything worked out. It's a great feeling to know I am not only able to attend school like a "normal" kid, but that I am doing really well at it too. 

17. The commercials about my illness: are nonexistent. CF is a rare disease, only 30,000 in the United States. And there is no federal funding for it at all. So public awareness is pretty much a no go. 

18. Something I really miss doing since I was diagnosed is: I've had CF since I was an infant, so I don't really have any memories from before I was diagnosed.

19. It was really hard to have to give up: my pride and independence. I'm a pretty strong willed and stubborn girl, and I want desperately to do things on my own. It's difficult for me to first, recognize when I need help, and second, actually ask for it.

20. A new hobby I have taken up since my diagnosis is: again, I was diagnosed as an infant so.... ha. I guess, if I had to chose something, it would be art in general. I've done arts and crafts for as long as I can remember. It's my escape and a source of pure joy. And I always bring some project with me to the hospital to pass the time.

21. If I could have one day of feeling normal I would: run a marathon. Or go scuba diving.  

22. My illness has taught me: patience, resilience, hope. I've learned that yes, there are bad days, but it's going to get better. It might not be tomorrow, it might not even be the day after tomorrow, but it will. If you don't believe in better days, don't hope for better days, you will crush your own spirit and your future. And, as cliche as it's going to sound, it's taught me that life is beautiful. Far too many people take this life for granted. They take each breath for granted. No one is guaranteed to wake up tomorrow, but when you grow up knowing your life expectancy is half of your peers, you learn to accept and appreciate life in a very different way. My illness has given me a perspective most people spend 70 years trying to find.

23. Want to know a secret? I cannot stand the smell of insulin. Hahaha. Seriously though, I hate it. It's so... sterile? I don't know how to describe it, but it's awful. Sucks, considering I am an insulin dependent diabetic? -__-

24. I love it when people: reach out to me when I'm sick. The moral support I get through text, phone calls and facebook when I am in the hospital is incredible. I really can't express how much it means to me. Even if I don't respond, to see multiple missed calls, voicemails and texts of people telling me they are praying for me and that they love me. Or even just facebook comments saying get well soon. It makes those weeks so much easier.

25. My favorite motto, scripture, quote that gets me through tough times is: "dum spiro, spero." It's Latin for "as long as I breathe, I hope" and it's permanently tattooed onto my wrist in my mom's handwriting. It's perfect.

26. When someone is diagnosed I’d like to tell them: It's going to be hard, but it's going to be okay. CF is not what it used to be. It's not a death sentence. The new medications and therapies coming out are ground breaking. With modern medicine, a strong spirit and commitment, it's entirely possible to live a normal, amazing life with CF.

27. Something that has surprised me about living with an illness is: seeing how far medical research has come for CF since I was a child. There is still a lot of progress to be made, but the successes so far are fantastic and have improved the length and quality of lives for all patients. Fifteen years ago, when I did my first course of home IV antibiotics, I had this totally stylish fanny pack with bags of fluid and an electronic pump that was loud, bulky and honestly kind of traumatizing to a child. You had to set the rates on the pump with every dose and it beeped obnoxiously every two seconds when there was a problem. Today, I get self infusing elastic balls, no bigger than a baseball, no batteries, no beeping. I just unhook a clamp and it releases the medication at the right rate. It's so fantastic. And that is just one of many new medications, therapies and overall advances in are.

28. The nicest thing someone did for me when I wasn’t feeling well was: my mother never ceases to amaze me with her unconditional love and sacrifices for me. She is always willing to help, in any and every way possible. Getting me medications or food when I can't even get off the couch, driving me to the ER in the middle of the night, researching for hours when something is wrong... all of it. I am so incredibly blessed to have her in my life.

29. I’m involved with Invisible Illness Week because: ...definitely didn't realize this was part an awareness event.. oops. Well, if I had done it during the week, it would be because awareness is a much needed aspect of healthcare. Money is necessarily for medical research. But in order to raise funds, people need to know what their raising money for. Most "healthy" people have absolutely no idea what it means to be sick. Sharing my story is a simple and honest way to show them.

30. The fact that you read this list makes me feel: loved, and thankful. In addition to being helpful because I can express myself, talking about my health is helpful because it gives me strength to hear the responses. I'm often told that I am an inspiration to others. That really just warms my heart. It's amazing to know I am influencing and helping other people. I'm not going to lie, having Cystic Fibrosis can be a living hell at times. It's painful, it's depressing, it's not fair and just plain difficult. And one of my greatest fears is that it will be in vain. When I hear sweet comments from my friends and even strangers though, it makes it so much easier. It reassures me that I am making an impact. I'm so honored, grateful and encouraged every time someone reaches out to me to tell me they read my posts and are inspired by them. 

If you give a mouse a cookie...

Tonight, I was in the mood for chocolate chip cookies. So, I made 5 dozen. And 2 dozen pumpkin muffins. And 2 loaves of banana bread. Go big or go home?

Other than my impulsive, ridiculous attempt to be the next Betty Crocker... today wasn't all that exciting. I woke up with a migraine, attempted to drink a cup of coffee and took some ibuprofen, and went back to sleep on the couch. Woke up a few hours later, started reading This Side of Paradise by F. Scott Fitzgerald, went a little crazy in the Kindle Store and downloaded 26 new free books to my Kindle... oops. Then ate some dinner, went to the grocery store for chocolate chips and came home to spent three hours baking while watching Chasing Mavericks. And now I'm sitting here, eating chips and salsa and watching Friends. Again, kind of lame for a Friday. It was, however, a pretty exciting week in the life of Jillian Goodwin. So let's recap!

To start, summer term started Monday. I'll be honest, I wasn't looking forward to it at all. There was only 12 days between semesters. I felt like I just finished classes, because well... I had, ha. Also, while I'm not a stranger to summer classes, I was very nervous about ODU's classes. I've taken summer school at TCC every year since I was 16. But TCC does twice a week classes, for ten weeks... at ODU, it's four days a week, for six weeks. Intense, terrifying, overwhelming... just a few words that came to mind thinking about it.

Despite my reservations... my classes went excellently! I'm taking two communications classes; Introduction to Public Relations and Public Relations Project Management. I have the same professor for both classes, Dr. Burton St. John. I've heard really great things about him as a professor, so I'm happy about that. And, he scored major points with both classes when he started off with "I know four day a week classes are rough and you get burned out by Thursday. And guess what, I do too. So unless we absolutely have to, we aren't having class on Thursdays."

My intro class is a moderately sized and pretty standard as far as assignments go; one quiz, two short papers, two in class assignments, a final project and a final exam. My project management class is a bit more interesting. There's only 9 students, which is officially the smallest class I have ever had. And, it's a brand new class to the program, so it's in a developmental/experimental semester. We have a syllabus, but Dr. St. John told us that it's flexible and we can make changes if something isn't working. And finally, 80% of our final grade is based on a semester long group project. Also kind of nerve-racking, but groups were assigned on Tuesday and the two girls I'm working with seem chill, so it should be okay.

Overall, it was a good week. The classes will be fast paced, but not as overwhelming as I was expecting. These are my first Public Relations classes (which is my actual concentration), so I'm really just excited to be finally studying what I want to do with the rest of my life! Just from the first week, I know this is a great career choice for me. It's something that I am passionate about and it's something I am naturally good at. Many of the personality traits and skills needed to be successful are ones I already have and value. I feel so comfortable with the topics and eager to learn more. I'm excited for the rest of the semester and even more for my future career in the field of PR :).


In addition to starting a new semester, I also got a MacBook Pro this week! Wooooo! My Sony Vaio has been acting up for several months now. It overheats really quickly and then shuts off in the middle of me working, multiple times in a row. Since I couldn't afford a new computer, I talked to my dad and he offered me his Macbook. He said he wasn't using it much since he had a computer at work and an ipad for home. It is two years old, but he restored it to factory settings so it's basically good as new.

It's going to take a while to transition everything from my old laptop to this one, and adjust to the Mac Operating System, but I'm very excited and thankful. I used Macs at TCC's art school for three years, so I am familiar enough.. but I only used them for the Adobe programs. Getting use to the overall format and organization will be a learning experience.


The next exciting part of my week is that I decided to try my hand at selling clothes, not just buying them. I went through my closet and I also had about three boxes of charity donations I hadn't dropped off yet. Pulled out everything that was brand name and in nice condition and put it on hangers. I knew of two women's consignment stores in Norfolk and one junior's store in Virginia Beach. On Tuesday, I went by two of the stores. Double Take is a high end women's store, they took 7 of the 10 items I bought in. Ditto is a teen's store and they took 14 of 20 items. Both stores have a 60 day contract and I will receive 40% of the proceeds if my items sell. On Thursday, I stopped by both stores again, Double Take took another 7 items and Ditto took all 20! I also stopped by a store called Act II, another women's store, to see if they would take the items that Double Take passed on. They took 7 items, also on a 60 day contract but they give 50% to the consignors. So all together, the three stores took 55 items. Hopefully things sell and in two months I'll be holding some pretty looking checks, that I can go spend on more pretty looking clothes, of course :)


I also got offered a part time job this week. It was brought to my attention by my childhood art teacher. She has a friend who recently had her elderly mother move in with her. The woman is looking for someone to "babysit" her mother, who cannot be left alone, so that she and her husband can still go out on the weekends to run errands or just see a movie/go to dinner. It would be Friday or Saturday evenings, and perhaps during the day on Saturday too. I spoke with her yesterday. She asked me to put together a schedule of when I am available and call her back after the holiday. I think it will be a good opportunity for me because it is not too strenuous. With my health and my full time schedule at school, I have to be careful not to push myself too far when it comes to working. It is really easy for me to over do it and get sick. I don't see that happening with this job though because it is only one or two nights a week. Enough that I can have some spending money, but not so much that I get worn out.


Overall, I'd say it was a rather pleasant week. I do feel bad about not posting at all though. And for this post being kind of mundane, ha. I did say no promises though :P But really, I'll try to be more interesting next week. Hope everyone has a great holiday! :)

Friday's Finds

This is probably the post the majority of you have been waiting for... the first official "Friday's Finds" by yours truly. YAAAAYYY!

And yes, I am aware it is no longer Friday. I apologize, but I had very important obligations yesterday. And by obligations, I mean I had to go watch one fiiiiiiiiine looking Georgia boy sing about drinking, dancing and good ol' southern sunshine and summertime.

Btw, if you are a fan of country music and have never seen Luke Bryan live, I HIGHLY recommend going to his show. Not only because he's basically the sexiest thing alive, but because he is one of the best stage performers I have ever seen in my life. His energy on stage is contagious. His accent carries so smoothly. And just, overall sounds very close to his studio work. Definitely a must see.

With that said, let's move on..... SHOPPINGGGGGGG :) :) :)

I love shopping, I do. But I hate spending money. Kind of a oxymoron, eh? Not when you know how to pop tags and make the most of secondhand shops!

There seems to be a negative stigma attached to consignment shops and especially to thrift stores; some people think it's old, dirty used items they want nothing to do with. But that's not true at all. I often find like new or even brand new items for significantly less than retail stores. It does take patience, but it's definitely possible to find some amazing deals.

To be honest, unless it's something I absolutely NEED and am on a time crunch, I never buy things full retail price anymore. If I'm not shopping consignment or thrift stores, I prefer discount department stores like Ross, Marshall's or TJMaxx. On the rare occasion that I do shop at the mall, I always check clearance racks or use coupons. I think the last item I actually bought from a store without any kind of discount whatsoever was a white dress for my graduation from TCC... last May.

Usually, I go thrifting once a week, either Monday or Tuesday. Monday is military day at CHKD and Tuesday is military day at Salvation Army (20% and 25% off) Also, CHKD Stores do a weekly texting coupon. They send it to you on Monday night and if you show the clerk your phone on Tuesday, you get a 25% off you entire purchase! Sometimes I have to laugh at myself for using discounts at thrift stores, but hey, money is money. And I'm a broke college student, 2-3 dollars off is almost a full lunch from Taco Bell! So, discount days are my favorite. And one of my best secrets when it comes to shopping, maybe one day I'll dedicate a post to sharing the rest :)

This week, I was a little busier than normal... haha. I found a new consignment store AND a new thrift shop while I was out running errands on Sunday. Then stopped by Salvation Army for my regular Tuesday trip.

First up, I Want It All Consignment in Portsmouth. Consignment tend to be a little more expensive than thrift stores, but still way less than retail. This particular store had a pretty nifty system where they have about 6 different colored tags and each week, they pick three and assign a different discount to each (20%, 40% and 50%).

I found this lovely maxi dress. Originally priced 16.99, marked 40% for the week, making the total cost $10. 20. Being 5'2, maxi dresses are either hit or miss for me. Some styles/cuts make me look six inches taller, and some just swallow my petite frame. This one was a go.

I also found this cute teal tote. Priced at $11.99, but the blue tag made it 50% off so I only paid $6! I just looooove the color and detail, perfect for summer.

Next, Pick 'n' Pack Thrift in Portsmouth. This was my first time at this family run thrift store. It's pretty small so not a huge selection, but really great prices and some really unique pieces.

One of which was this fantastic metalwork wall hanging. It's about 2 feet tall, and it only cost me $5! 

I'll be honest, this is probably one of my favorite thrift store finds to date. It's so intricate and unique. I've never seen a piece like it before. I have always loved dream catchers. I had one hanging over my bed when I was little. So this was a must have. 

Finally, my trip to Salvation Army in Virginia Beach. The Salvation Army Family Store on Virginia Beach Blvd is one of the biggest thrift stores in my area and one of my favorites. I always find great stuff. Like I said, they do 25% off for military on Tuesday, but they also do a "Color of the Week." They have 5 different colored price tags, and each week they designate one to be 50% off! This week's color was white. 

Yes, I am aware it's May and I probably won't wear these for several months, but I love shoes. A lot. These are American Eagle Outfitter, fur lined suede boots. They were priced for $14.99, but were white tag so 50% off, THEN 25% off for military. Final price, $5.60. 

 There is hardly any wear to the soles, so if they were ever wore, it wasn't more than just a few times. Easily $60 retail, practically brand new for less the cost of lunch. I can dig it. 

My other find was this corduroy backpack. $2.99, at 25% makes it $2.25. 

Unfortunately  one of the straps on this one is broken, but my mom said she's help me set the sewing machine up and get it fixed (one of these days, I will learn how to sew on my own, ha). 

That's all I have for now. Like I said, it was a busy week. Usually I just make one trip and find just an item or two, but the two new stores were a special treat. Considering I didn't even break $30 at all three stores though, I would say it was still pretty successful. 

Stay tuned next week for more Friday's Finds!