"You have diabetes? How? You're not fat."

Well, it took 11 years and five months, but it finally happened. Yesterday, I was getting a manicure and my insulin pump beeped. The technician heard it and politely asked if I needed to respond to it. I said "oh no, it's okay. That was my insulin pump, not my phone." The next words out of her mouth...

"You have diabetes? How? You're not fat."

This, friends, is why it is so important for those with a chronic illness to be their own advocates. There are so, so, SO many stigmas and so much false information (hashtag fake news) out there about what illnesses are, why they happen and what they mean for the person dealing with it. The only way to change that is for those living with it to speak up, and those around them to listen before making assumptions. Diabetes is probably one of the more commonly misunderstood diseases out there.

Saying goodbye to my safe haven.

Last night, I had the incredible honor of dropping off more than 75 toys that The Junior League of Norfolk-Virginia Beach (JLNVB)  had collected for the Pediatric Ward of Naval Medical Center Portsmouth (NMCP). Ten volunteers from the league helped wrapped all of them plus another 75 or so, for the nurses to surprise the children who will unfortunately have to wake up in the hospital on Christmas morning.

After the excitement settled, my friends all headed home but I had to pick up a medicine refill so I went to the pharmacy. Sitting alone, I was looking at the pictures we took and the gravity of the situation hit me like a brick wall. I couldn't help but start crying right there in the middle of the waiting room.

I have been a patient of the CF Clinic at NMCP since I was six years old and was admitted to the that very pediatric ward more than 20 times in the last decade before transitioning to the adult ward. While I never had to spend Christmas in the hospital, some of the absolute worst days of my life have happened in that building.

10 Things Tuesday: Traveling with Cystic Fibrosis

Hello from Roma, Italia!

Last month, I boarded a plane to spend eight days in Rome. This isn't my first time traveling with cystic fibrosis and certainly won't be my last. And while I'm definitely not an expert, I've had my fair share of traveling oops-es over the years. As a result, I have learned a few tips to making your vacation both safe and enjoyable when dealing with a chronic illness.

For someone who has physical limitations or takes 20+ medications a day, the idea of travel can be terrifying. Being away from your routine, the extra walking, how on God's green earth you are going to pack and carry all of your medicine and supplies... It's no small feat, but that doesn't mean you can't still do it! You just need a little extra effort on the front end.

1. Forget crossing your Ts and dotting your Is... The most important letter is P! Plan, prepare and pack ahead of time. Like... way ahead of time. 

The most important aspects of traveling with a chronic illness are to plan ahead and be prepared. Honestly, most of the next nine tips are some variation of this. I'll get into more details as they pertain to certain issues such as carry-ons, accommodations, itineraries and travel buddies, but the very first step is to pack your bag.. and pack it early! I am literally probably the worst packer in the history of the mankind. If you have any doubt, ask my sister Jenny who during one trip, managed to repack my one full size and two carry-on size suitcases into just one full and one carry-on because she's a wizard like that. She will probably say otherwise... but I have gotten slightly better over the years. One thing I did in getting ready for my trip to Rome that significantly reduced my pre-trip anxiety was that I packed every single one of my medications and supplies five days before I boarded the plane, the earliest I ever have! Doing this so early ensured that I could take my time and make sure that I had everything I needed and it fit into my bags. It also gave me several days to mull it over and remember the extra items that I didn't think about the first run through. Far too many times have I packed the night before or even morning of a trip, and 12 hours later when I'm already on my way, remembered something else I needed. This time, I can say with complete confidence that I had every single thing I needed. Looking ahead at my next adventures, I'm going to make it a habit to at least pack these medical essentials well in advance, even if I still have some room for improvement on the whole packing-way-too-many-clothes-at-the-last-minute thing.

Dear Mom, thanks for... well, everything.

Mom,

Not long ago, I sat on my bedroom floor, hysterically crying. Everything was piling up and I honestly had no idea how I would get through the next few days... I was signed up to participate in an online virtual conference for adults with cystic fibrosis, called BreatheCon. I was suppose to go on a practice hike to train for my upcoming Xtreme Hike. And finally, I had my first follow up appointment with the transplant team at Duke University. Throw in a long work week, boy drama and the stress of being the lead planner on a volunteer event happening while I was out of town, I was done. I was past my breaking point. I felt overwhelmed and defeated. I didn't want to do any of it. I didn't want to attend BreatheCon, I didn't want to hike, I didn't want to go to Duke. I only wanted to crawl into bed and cry.

 
Yet, somehow, less than an hour later, I was logged into BreatheCon listening to one of the most inspiring panel discussions I've ever heard. 15 hours after that, I hiked 8 miles and was standing on top of a mountain. Another 48 hours later, I was walking out of my transplant appointment, feeling genuinely optimistic and motivated to keep pushing through the adversity that is living with cystic fibrosis.

It didn't just happen "somehow" though. It all happened because of you. Everything that's happened in the last 25 years, everything I've been able to do, is because of you.

I often get praised for being strong, resilient and accomplished despite my cystic fibrosis, but I didn't become any of those things by chance. I had the most incredible role model to show me how. Last weekend was a challenge and I got through it, but not by myself. I got through it, because of you.

So thank you, Mom. Thank you for everything. 

What does CF "really look like?"

So it's Cystic Fibrosis Awareness Month and that means that Facebook and many other social media outlets are exploding with posts about CF. What it is, what it means, who has it, why we need funding. I personally have zero problem with talking about my cystic fibrosis for the rest of the months, but it is encouraging to see the community come together every year to bring much needed attention to this illness that affects us so deeply. I've noticed, however, a few posts, discussions and dare I say arguments about "what CF really looks like" and that it's not glamorous or pretty. I've seen this recently and on a number of occasions in the past.

Some think that the best way to bring awareness to is to show the graphic photos. Photos that bare witness to our most fragile state. Photos inside the hospital walls because most people will never have the chance to see something that raw. Others, take a different approach. They aren't as comfortable sharing that vulnerable side of their disease and they would rather post a picture where they look healthier, maybe with their make up and hair done or even a fun snapchat filter. Or maybe they don't want to be labeled as "sick" and they'd rather share the "normal", non-CF side of their lives as a way of showing the world that they're just like everyone else.

Well I, being who I am, have a few thoughts.

Ten years later.

Ten years ago today, I was admitted to the hospital. I was 15 years old and prior to that day, I had only been admitted to the hospital three times in my life. For someone with cystic fibrosis, this was actually pretty impressive. Growing up, I knew that I had CF but admittedly, I didn't know what it meant to be "sick."

I did my breathing treatments, took enzymes and vitamins and the occasional round of oral antibiotics. I had doctors appointments every few months. But between the fact that I was still very much a child and naive about my illness, my "doctor Mom" doing everything she could to keep me healthy and what I can only choke up to being "lucky," I hadn't yet experienced the harsh reality that many with cystic fibrosis face. Honestly, as a child, I barely remember even having CF. When I walked into the Pediatric Ward that Monday, I had no idea I was about to hit a breaking point. That Monday was a catalyst in my healthcare journey because for the first time in my life, I began to understand what cystic fibrosis really was. In some ways, I actually consider it to be my "first" admission because the illness I knew before was nothing compared to what I've known since.

I spent 23 days in the hospital that April. During which, I was diagnosed with CF related diabetes and a mycobacterium abscesses lung infection. I was started on insulin therapy and learned to give myself a shot with every meal. I also had a central line permanently placed in my chest, which I used for IV antibiotics, 3-4 times a day, every day, for the next 3.5 years. In a matter of days, everything I knew about my life changed.

I still believe the best is yet to come.... 2016 Great Strides Ambassador

And after all that we've been through

And after all we left in pieces 

I still believe our lives have just begun 

Cause now the past can be outrun

And I know you are the reason 

I still believe the best is yet to come

Has anyone ever told you "the best is yet to come"? Did you believe them? What was going on in your life when they said it?  I've always liked that phrase. I'm a fan of being optimistic and those words embodies positivity in every way. It says "even though things are great right now, they're still going to get better." The lyrics above are from a song by the band RED.

If I had to pick one song to describe the year 2015, it would be that one.

2015 was awesome. It seriously was. You can read about the first half of the year HERE. But to sum it up... I had the most amazing last semester including an internship, a executive board position in my sorority and a director position with ODU's Student Government Association.  I graduated with college with honors. I got a paid internship within a week in my field of study. I got the most adorable kitten in the world. And last, but certainly not least, I was able to start taking Orkambi, the first ever FDA approved medication to treat the underlying cause of cystic fibrosis for nearly 20,000 children and adults in America.

I wrote a blog about Orkambi when I first started treatment (read that one HERE), but per usual, I haven't written much since. Tomorrow will be six months since my first dose. People have asked how it's going and I have to be admit, I hesitant how I should answer. Don't get me wrong, I have definitely had positive results from this medication.... but I'm not going to lie and say that it's been some miracle cure-all.

The best Christmas gift I ever received.

Like many, I haven't quite wrapped my head around the fact that Christmas is in three days. It feels like every year, the days get shorter, the shopping lists get longer and the Goodwin tribe grows in numbers. This year was no exception with my brother Jeff's engagement. His fiancee, Brittany, has been spending Christmas with our family for a while now, but saying fiancee rather than girlfriend definitely makes it more official. Next year, she and my brother Jeremy's fiancee, Erica, will both be Mrs. Goodwin which is even more official and I am beyond excited. Now, to convince one of my older sibling to give me adorable nieces and nephews to buy (way too many) super cute presents for. Hm...

Speaking of, they say the best presents can't be bought at the store. Which I wholehearted agree. The best Christmas present I ever received wasn't something anyone purchased; it was the gift of life and it all started on December 19, 2011.

Have you ever thought you were going to die?

I don't mean a cliche, passing thought of everyone dies or the times where near-miss accident make your heart race inside your chest. And honestly, I'm not even talking about the looming thoughts of death that come with having an incurable, chronic illness.

I'm talking about experiencing a situation that was so terrifying and so overwhelming that you truly believed it was going to kill you. A situation that ripped through every rational thought and paralyzed every notion you had that you were in control.

#tbt to that time I let some guy permanently place a chunk of metal in my chest

Today is Thursday, which of course means I have to post a #tbt. While TimeHop did remind me this morning of the single most amazing best friends halloween costume I have ever had being one year ago today (said costume can be seen here), I thought I should probably blog about something slightly more "substantial"....

Earlier this evening, I had a conversation with a friend who will be getting her first mediport placed tomorrow. I realized while talking to her, that just over a year ago, I was in her exact position. (I know, because about four days ago, TimeHop reminded me of that Instagram post.....) I wrote a blog about my decision to get a mediport placed. It was not an easy decision for me. I was angry, sad and more than anything.... absolutely terrified. Thinking back to the feelings I had before my port and my perspective now, I had a reality check about how much change can happen in a year's time.

DISCLAIMER: After 23 years, I don't even flinch at "medical" stuff anymore, but out of respect to those that do find the topic less than desireable, I will say now this post contains mildly graphic images. 

If you'd like to take the long jog down memory lane, you can read my original blog post here (http://www.jillian-goodwin.com/2014/10/sometimes-hardest-thing-and-right-thing.html#more). But for those that would prefer the quick 'n easy version, carry on...

The One I've Been Waiting 23 Years to Write.

"Most of our lives are a series of images, they pass us by like towns

on a highway. But sometimes a moment stuns us as it happens

and we know that this instant is more than a fleeting image.

We know that this moment, every part of it, will live on forever."

Lucas Scott, One Tree Hill

Two weeks ago, I had one of those moments.

I was sitting at my desk, mind-numbingly editing a 64.1mb Adobe Illustrator file... Don't get me wrong, I absolutely LOVE my job, but this particular project required me to edit a very detailed map illustration of the entire Southeastern Virginia region. Remember those old Rand McNally road maps your parents kept in the car? You know, before Google Maps and iPhones? Yeah, that detailed from Gates County NC to Richmond, VA... every single street (most with street names...) state park, airport, school, military installment... Yeah, you get the point.

I was practically counting the minutes to 5:00pm because my vision was start to blur and because I was suppose to go to an afterwork event that included free food/alcohol (which is always a great idea). Just a few minutes to go and my phone began buzzing. When I looked down, I saw the all too familiar 953- prefix that is the Naval Medical Center Portsmouth. I'll admit, normally I screen these calls because it's always an appointment reminder, and I can't stand that automated robot women telling me what time I'm suppose to be at the hospital. But this call was different. This call I was expecting.

This call, this moment, was going to change my life.

I'm picking up good vibrations.

Say hello to my new best friend, my Animas Vibe insulin pump with built in Dexcom G4 CGM.

For those of you that don't know, I am an insulin dependent diabetic. I was diagnosed with Cystic Fibrosis Related Diabetes (CFRD) shortly after my fifteenth birthday and I got my first insulin pump just before I turned eighteen. 

CFRD is a direct result of my cystic fibrosis ...hence the "CF related" part. Approximately 30-40% of individuals with CF will develop diabetes, most during adolescent or young adult years. CFRD is a rather peculiar disease. Doctors aren't 100% positive why it develops or what causes it to happen in some but not all patients, but the general idea is that it develops after years of pancreatic scarring. Some believe that genetics, outside of the those that cause CF to occur, can influence the outset of CFRD but who knows? 

Often, when someone says "I'm diabetic," people will ask are you type 1 or type 2? Let me just say, you get some really funny looks when you reply "Neither." Neither? How is that possible? Allow me to explain...

...sometimes the hardest thing and the right thing are the same.

I started to write this as a Facebook status, and then realized it's not something I can talk about in a matter of sentences. So I'm going to write a blog for the first time in forever because well, I can and because I need a reason to procrastinate on studying for my midterm.

On August 29th, I was admitted to the hospital for a tune up. This wasn't planned and definitely not expected or wanted. My lung function and my weight were down. My PFTs didn't respond to oral IVs and steroids. I was starting a new semester and a new job. Flu season was approaching. Too many things going wrong and not enough going right, so I agreed to be admitted. My doctor didn't want to take a risk of me getting sicker and needing a longer, more serious admission later in semester.

This was my first admission to the adult ward at Portsmouth Navy and goodness, was it an experience. My last 19 admissions were to Pediatrics, with nurses that know me and love me. Not to say that adult nurses don't care about their patients, but when you're 15 years old and admitted to the same ward 3-4 times a year, people notice and people care. They watch you grow up. They go out of their way to make sure you get not only what you need, but what you want. They become your friends. When I was at the hospital for an appointment, I would go upstairs to the ward just to say hello. I make cookies as a thank you after every admission. As messed up at this is going to sound, one of the safest places in the world for me was on that ward. Some of the worst days of my life have been sitting in one of those hospital beds, but the people have been nothing short of amazing through each and every one of them.

Moving to a new ward with new doctors, new nurses, new corpsmen.. I was terrified. I didn't know what to expect. I also didn't even know I was being moved until I got to the hospital to check in, so I felt blindsided and unprepared. Unfortunately, my first experience was rough.

Happy Spring!

Hello blog world,

So first things first, I really do suck at blogging. I have a New Years' Resolution post that I starting writing almost three months ago still saved as a draft... pretty bad, I know. But my mom has been bugging, I mean.. sweetly encouraging me to get back into it (mostly because she keeps telling her grad school classmates about my blog, and then remembers I don't write on it... ha), so I told her I would give it a shot. Fortunately for her, I have a great topic to start things off! 

Every year, the Cystic Fibrosis Foundation host a national fundraiser called Great Strides. Since starting as an intern with them in 2011, I have been active with fundraising as well as working at the walk. Below is my fundraising letter for this year, which coincidentally, also functions as school project.

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 :) 

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.