Thirty!Thirty!Thirty!

Happy Thursday & Happy First Day of Summer!

I know in my previous, and first blog post, I hinted towards a thing I wasn't making public in my blog just yet. Well the wait is no more! Today you learn about the largest thing in my life! It's made me strong, weak at times, upset, happy, and almost every other expression type word in the known English language. Drum roll please....

I have Cystic Fibrosis (CF)...but it doesn't have me!

For this blog I thought I'd do a little 30 question type thing to allow my readers to understand CF, learn about my trials and achievements with CF, and whatever else. I can't take credit for this blog template I'm about to us, so please give a nice applause to my wonderful Cyster (a gal with CF) Jillian! Jillian posted this on her blog back in May and I knew it would be the thing I use to explain my life with CF. So thank you, Jillian, for my inspiration!

And now the fun begins! Thirty things, thirty questions, thirty whatevers!

1. The illness I live with is: Cystic Fibrosis and if you want to get into bacterias, MRSA ( Methicillin-resistant staphylococcus aureus...Yes I did have to google that!) and Burkholderia Cepacia! ( I think I'll save more of an explanation for this bacteria for another post!)

2. I was diagnosed with it in the year: 1990, around two months old.

3. But I had symptoms since: birth, I do believe, although I'm not so great at recalling my early years. I was tested almost instantly due to my older brother having being diagnosed a few years earlier.

4. The biggest adjustment I've had to make is: realizing that my body is damaged on the inside and if I didn't take proper care of it, it would deteriorate sooner. I didn't come to this realization until my twenties. What can I say, the rebel stages overpowered my thinking! I've had to accept that I can't do all the things most my age do without my body feeling it. I can't stay out all hours of the night, I can't expect to have an "easy" life, I can't expect people to understand. I have to acknowledge that there are many times I'll want to throw in the towel but that is the very last thing I could ever do. I have to suck it up and be a "MAN" to say...although I think men are far more weak when it comes to emotional stress and being "sick" Just my assumption though ;) 

5. Most people assume: that I am the strongest of strong. I am amazing, inspiring, driven, etc. And the ones who truly don't understand assume I'm selfish, lazy, or complain far too much. Both are wrong of course. Yes, I do see myself as strong, amazing in aspects of my life, inspiring and driven at times. However, there are many days where I hate life, I want to give up, I cry and cry, I scream and get angry. I wish I was never born. I think most people always face those thoughts at least once in your life. I have an illness though and after being in the hospital countless times, missing out on many things, getting my heart broke many times because guys just can't "handle" me, and the worst of all, seeing friend after friend die fighting this monster. Those moments are my weakest. Those moments I am far from strong. Those moments I want to just crumble into a million pieces and be carried away in the breeze. The ones who call me selfish and lazy are just mislead or arrogant. Yes there are many days where I just want to sleep and sleep and sleep and sleep some more. There are days where I can't even do simple tasks. There are days where I will not attend a family/friend gathering because I simply just can't. I am not lazy, I'm sick! My body is at a constant war with itself. It's tiring and weakens your body and soul. I am selfish. I'll admit it with no problems but I'm selfish because I care about MY life, and MY health. Everyone cares about their life and health, right? Why should I be any different? 

6. The hardest part about mornings are: EVERYTHING!!! Most night I get zero sleep due to coughing fits, insomnia, over thinking, crying, pain, the list goes on. However, I still have to push myself to do my morning treatments which consist of a thirty minute vest treatment, and around an hour and a half alone of just inhaled medication. Top that with making sure I eat a good breakfast while taking over twelve pills, showering, getting ready, and all the above. All while dead tired! Mornings just suck!

7. My favorite medical TV show is: I don't really watch too many medical shows. I think they just portray things so unrealistic of course. However, I'd say House was my favorite simply because of House! Any doctor who tells you that they do 100% of the work, or you see in "Hollywood" shows/movies that doctors are the heroes is just silly nonsense! I've had my fair share of doctors who are CLUELESS to anything and everything! Sure I agree that some are heroes, some save lives, some do incredible things, but the real heroes are NURSES! Have you ever seen an actual doctor try giving a crying baby an IV? Clean up vomit or poo? Deal with crazy and "know it all" parents/patients? NOPE! Nurses people! They are the heroes! 

8. A gadget I couldn’t live without is: medically related? My nebulizer or vest. For obvious reasons! They keep my lungs semi clean until I need an IV tune up.

9. The hardest part about nights are: falling asleep. It never seems to fail that every time I try to go to sleep I have a massive coughing attack. I tend to over think everything at night time also. From events that happened that day, to thinking of CFers I know aren't doing too well. 

10. Each day I take: around 15 enzymes to help with my digestive issues, 2 vitamins, and another 15 or so pills to help with just the side effects of CF. Then add on 7 aerosols, and 3 30 minute vest treatments.

11. Regarding alternative treatments I: am open to it! I would never mind taking things that actually benefit my body instead of treating one issue while causing five more issues! I am, however, nervous and uneducated on what would really be best for me and what I need help with the most.

12. If I had to choose between an invisible illness or visible I would choose: I go back and forth on this quit often. In a way I wouldn't mind people to "see" my illness. Maybe then I wouldn't get harassed for things that may appear selfish or lazy or immature. It might get people more aware. Have them take action! And then often I'm glad CF is an "invisible illness". I'm not one to start a pity party or ask for sympathy. I don't want people who just meet me to treat me differently because I am "sick" and because chances are, I won't see 30. I want people to like me, respect me, adore me for who I am, not for what is inside me. I want people to not see me as "Oh that's Brittney! She's so inspiring and I can't believe half of the stuff she goes through. She's so strong!" Yes, that's sweet of you, but I'd rather it be "Oh that's Brittney! She's so goofy and a great friend! Her obsession for NFL and Peyton Manning is rather creepy though."

13. Regarding working and career: despite what some others might think, I actually do want to work and have a promising career. I want to feel successful! I, however, can acknowledge that right now having a job is almost a fantasy. I am in and out of the hospital far too many times for any employer to actually want to hire me. I decided a few years ago, despite getting put down for not having a job, that my health comes first. My health is my job. Where my health is right now, it's a full time, tiring job. I am putting myself first, selfish indeed and I have every darn right to be that way! I want to finish college. That's my first goal. If my health allows that, then a job is for sure in my mind set. Until then, I occupation is full time CF patient, advocate, and student.

14. People would be surprised to know: that in one year I was admitted into the hospital (for 2 week stays) more than 10 times.

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 34%.  It's hard thinking about the future when you are too unsure about how it will come about. I want more than anything for these new and promising drugs to hit the market, but will I even make it that long? Will my brother or countless CF friends make it that far? If we all do, what will come about with our health? Will these drugs really be as promising as the doctors say?

16. Something I never thought I could do with my illness that I did was: dance for 17 years, be very active, have a "normal" childhood, and graduate high school with honors. When I was born my mother was told I'd be lucky to see 4, be lucky to be active, be lucky to graduate. I love proving the doctors wrong! I had a very active childhood from girl scouts, softball, dance to almost every sport you can imagine. I could keep up with my friends and did "normal" annoying kid things. I went through school with great grades and despite  many hospital stays, I graduated high school in the top 5% of my class.

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: dance and being active. Dance was my passion. I loved the feeling I had when I danced. I could let go of everything bottled up inside and be "free". Once my lungs became more damaged it was harder for me to dance, to get out there and do the things I was so custom to doing. That's the thing I miss most. The feeling of freedom in my body.

20. A new hobby I have taken up since my diagnosis is: again, I was diagnosed as an infant. 

21. If I could have one day of feeling normal I would: everything! The question is what would I not do? I would climb mountains, run a 5k, jump up and down for countless hours without wanting to cough up my lungs! 

22. My illness has taught me: many life lessons most don't ever come across. It's taught me patience, kindness, understanding, caring, and to give big hugs and share lots of love. It's taught me to be mature and face difficult things instead of running from them. It taught me to never take one single breathe for granted. To love the ones around me who love me for me and not for my disease. To cherish little things. To smile more.

23. Want to know a secret? I hate hate hate Tobi! The taste, the smell, the nasty sticky feeling! All of it. I'm also not fond of some medical people. I think resident doctors are brain dead at times. I'm not big on nurses or doctors who think they know my body better than I do. And I secretly dream of meeting Peyton Manning one day ;p

24. I love it when people: acknowledge CF. Whether  it be awareness, donating, posting a status, whatever! I love seeing people get the word out there. I love with anything CF related is on the news, a TV show, a movie. I get the biggest geek smile when I even hear CF brought up on the TV! Bates Motel having a character with CF is one of the main reasons I love that show! I love when people try to understand CF better instead of just judging right off the bat. And I really love when people randomly text me or message me saying how inspiring I am, how strong, etc. Sometimes it's little things like that that give me so much ump! Not many care to take time out of their life to acknowledge that they think highly of me, and for me that's one of the greatest things to hear. I get so emotional in those cases.

25. My favorite motto, scripture, quote that gets me through tough times is: "Some see a hopeless end, others see an endless hope." I saw it on Pinterest one day and fell in love. I put them on my Great Strides shirts this year and have decided that it's my new motto and most likely the next tattoo I get. It phrases my battle with CF so well. There are many times I have given up all hope of anything, seeing an end in the near future. Then there are more times than the hopeless end moments when I have faith, hope, promise for a bright future. A "knowing" that my hope will never end and one day we will have a cure.

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. I also like adding, don't even think about doing the rebel stage. You'll regret it and it will damage your health. Most of us CFers learned that the hard way.

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. Also seeing how amazing the CF community is. In times of sorrow or happiness we come together in a big way. With Dalton Dingus dying wish of getting Christmas cards; the CF community..and many others, made his wish come true with 800,000+ cards! With the story of little Sarah fighting to get transplant rules changed, we came together to get the word out. And just recently with Emelie Crecco photo of a letter left on her car about how selfish she is for parking in a handicap spot (don't even get me starting on how mad that makes me!) Her photo has been shared OVER 33,000 times and it happened close to a week ago! It amazes me how we bond together in times of need and in times of happiness.

28. The nicest thing someone did for me when I wasn’t feeling well was: I have been blessed with amazing people and amazing things they each do. My bratty, annoying, devil child sister always seems to be a great sister when I'm sick. She might complain about it, but she always takes care of me. From bringing me whatever I want, to helping me pack for the hospital. Recently my best friend, and cyster, Lauren came to the hospital and brought me cupcakes! Anyone who knows me, knows I love sweets! Not to mention these cupcakes where from my favorite cupcake place! So big shout out to Shi and Lauren! They don't know how much little things mean to me! Of course my grandma always goes above and beyond as well. Along with pretty much every family member and loved one! Have I mentioned how blessed I am?

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 health care. 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: grateful, amazed (it's a really long list..high five to you!) loved, thankful, and blessed! It means a lot to me to get awareness out there about CF, my battles, and the important NEED for people to know what CF is and how serious it is! 

There is is! The big thirty! Which actually thirty has played some important things lately! The 19th of this month was a month (some 30 odds days or so) since I moved into my apartment with my brother starting one of the biggest, scariest, and important journey's of my life! Also the 13th (some more 30 odd days) marked one month of me being hospital free! Some might say "well that's not THAT impressive" and I agree. However, if you knew the type of year I've been having and how I have been in the hospital FOUR FREAKING DARN TIMES since Christmas due to rib brakes/fractures, you'd understand just how happy that month mark makes me! 

Thank you, each and everyone of you, for reading this..even if you didn't read every single word, you still made it! Hugs to all! 

Also never ever forget to SMILE!

Aspiring to Inspire before I expire,

Brittney 

Below I thought I'd share a few CF related pictures! 

ENJOY!