My Perfect Week in a Perfect Nutshell

This is what pure happiness looks like, no oxygen, hands up, smiling like a fool after scoring a strike at cosmic bowling with my family and a good friend of mine. This is a feeling i wont soon forget.

This week has been filled with fun and laughter. My niece had her spring break so it was great having her home every day and to be able to go out and do things (like bowling) with her! I made a few trips to Milwaukee, one for a birthday dinner with one of my best friends, who also has CF, and one during the week for a Milwaukee brewers game! 

The Brewers game was fun ive never seen a game at Miller stadium before and i liked it although im not sure about the whole concept of tailgating a baseball game, in Chicago we tailgate football and for everything else we drink on the train on the way there like normal people, baseball tailgating was a new one for me and i was a baby about the cold so i skipped it haha but i went with a few friends and met some people there as well, one of which i have been waiting to meet for a very long time now. If you like my blog you might like hers as well, The Living Breathing Wendy. She is really the reason i got back into blogging in the first place and i have her to thank for inspiring me to keep writing about my life and my experiences and meeting her was a top moment. She also has CF and as cheesy as it is to say, shes a huge inspiration to me not only as someone with CF but as a person in general. Shes fun and full of life and im so lucky to be able to call her a friend! 

Possibly my best day however was going downtown to the CBS Chicago studios to meet the woman who came to me about being a contributor to the website and who made all my CBS blog posts possible. ( which you can read all here : Rachel Whidden for CBS ) I woke up early and got ready and havent stressed about what i wore for a day in about 8 years haha. I took the train downtown with my oxygen cause i figured thered be a ton of walking and i was right im glad i brought it. The studios were awesome, the control room had so much going on and everyone seemed to be doing 900 things at once it was pretty cool to see all that, then i got a little tour of the make up room and a green screen room and then i got to sit in the studio while they finished up the live news and get a picture with 2 of the anchors (one of which actually covered a bit on my blog a while back so it was fun to actually meet him!) The icing on the cake was being able to sit down face to face with Wendy (the amazing woman who got me started there) and pick her brain about the industry, and my blog. Being able to talk to her about a plan for school and my future was huge, shes a big role model for me so hearing her tell me she thinks my plan is good and giving me recommendations for schools and tips for my writing was invaluable. 

I had a few nights out with friends, and one downtown playing Harry Potter trivia and a few just hanging out at my house playing video games with my sister and hanging out with the kids, who are a riot and a half! The baby is at the funniest age and my niece is a whole lot of sas so together its pretty entertaining! The point is ive woken up excited for the day ahead and then  went to sleep with a smile on my face every night and i couldnt be happier for how things are going. I cant wait till i can post again about the next set of amazing things making my life what it is. Stay tuned. Its gonna be good.

Break Over!!

It has literally been months since ive posted to my blog (mostly just been reeeally busy!!) I went on a road trip for spring break and also ive moved which took up alot of my time but im happy to say that i am back!

Spring Break
Allie and i went on a road trip for her spring break and it was amazing! The first day we drove to Atlanta and spent the next day going through the World Of Coca Cola and CNN's global headquarters and both were really cool, i had a great time there and then we headed off to Siesta Keys FL and spent the next whole day on the beach where i unfortunately didnt take my antibiotics into account and got HORRIBLE sunburn!!! The beach was beautiful though and for lunch we got some of the best alligator and mahi mahi wraps in the entire world! (its possible im exagerating just a bit though) Day 3 was half at the beach and half getting to Orlando where her dad had us staying in a beautiful 2 bedroom 2 bathroom condo and she finally watched frozen and i Gordon Ramsey'd the shit out of some salmon and asparagus for dinner!! Day 4 we went to universal and Harry Potter World (it was like i was finally home, a dream come true!!) and thanks to my sucky lungs and oxygen requirements we cut every line...one small perk! The next 2 days of the trip were spent driving to/in Nashville and it was a blast!!! This road trip was so much fun and im so thankful i
could go!!

Moving
I finally moved in with my sister this past week and its been good, luckily ive been feeling pretty good but when i am feeling a little under the weather its great to have someone to help me out and its nice not being alone all the time. During the week i spent alot of time alone just me and my dog doing nothing or watching tv and now i have someone here almost all the time, as time goes on it might get a little annoying well have to see haha, but for now i really like it.

lots of other things have happened, ive gone to a few concerts it was allies birthday and ive had countless amazing weekends but for now im going to leave you with this! More to come!!
xx

Last Post Of The Year!!!

Goal achieved. I was home for Christmas! I wasnt too sure if id be able to stay home for the holidays this year as i came down with a pretty bad cold, sore throat, runny nose, horrible horrible cough, couldnt catch my breath for anything, the whole 9 yards. Its hitting me pretty hard and just tonight my lungs have decided they had enough and have all but given up on me, i have 1 day till NYE and im very determined to make it till the new year at home! I need to tone down my stubborness, im well aware. Im once again hooked up to my oxygen concentrator cause my oxygen levels without it are dropping down to the 88%-89% range (down from 94%-95% last week) and im thinking an admission is inevitable no later than Jan 2....boo. On the bright side i had an incredible week! Christmas Eve at Sarahs was...well...entertaining haha. It was kind of a clusterfuck but hillarious at the same time, i had a great time! Then i slept most of the day on Christmas day then that night Joey came by and we watched a movie. Thursday night we went to dinner and then watched Hot Rod, which is hillarious and one of the best movies ever and he didnt really agree..but then again he likes Adam Sandler over Will Ferrell so Im not gonna read too much into his opinion there haha, Friday he met up with me and Michelle at Tobys and it was a great night and then we put Harry Potter on and were lazy all Saturday morning and went to Maki Sushi tonight :) Definitely the best few days ive had in a while! I havent been so happy in a loooong time! Tomorrow will be spent planning NYE with Allie and sitting veeeery still lol.

                               

me?? oh ya know, 29%. FML.

    WARNING : PITY PARTY ALERT AHEAD!!!
     PROCEED WITH CAUTION!!!
Im excited to start the new year and hope its just as amazing as this one was with him, Allie, Michelle, Sarah, and everyone else who made every day incredible. Im hoping my lungs dont fail me too quickly so i have time to make that happen, and im hoping all the friends ive made in my CF communities are happy and healthy too, it breaks my heart when i log on an almost everyday someone else is gone, someone else lost the battle, and im scared that it might be me next year. The breaths i take are shorter and my heart is beating faster and im tired more than im not, I wanna go out and keep up with everyone but my body wont let me. It makes me sad but not for myself, for Sarah who loves and cares about me more than anyone i know. For my mother who doesnt always know how to be my mother but would be devastated none the less. For my niece who lights up my world and my brother in law who im so glad joined our family! Hes good to Sarah and Gwen and they deserve the best :) Im sad for my best friends who are positive to the point of pure denial. The only person im not sad for is myself because ive had just about enough of not being able to breathe, not sleeping at night, eating all day just to lose more weight in the end, hours of meds and tons of pills, and missing out on life because im so tired i just cant move. Maybe im just having a rough patch...a year long rough patch...and i will fight as hard as i possibly can to the very end but if i should lose, im at the point where im okay with that.  Heres to making the best out of this new year, whatever it should bring, i resolve not to let a single day go by that i didnt make the absolute most out of.

But On A Happier Note...

Well this weekend was amazing :) Friday Allie and i met a bunch of friends at Tobys in Rosemont and had an great time, we were gonna just stay a few hours have a drink or two and head home early but ended up leaving at 4 when they closed hahaha worth it though i had a great time! Then Saturday we wanted to go to wrigleyville but got lost on the way there and then finally found it and parked and had to go back to the suburbs cause al realized she left her passport in the driveway hahaha we got to the bars at like 1230-1am but it was still fun! Lots of weird people seemed to be out though. Im back to doing the whole standing by the bar half dancing half trying to move as little as possible thing lol, and i miss dancing terribly but ill get back there! Sunday i went to the Blackhawks game with Joey and it was a great game they won 6-2 against the panthers and we were only 10 rows away from the glass so i was very happy about that! Breathing is getting tough again and last night i barely slept at all because of it im hoping im just in a bit of a rough patch right now but who knows, im pretty nervous for my upcoming pft tests in January im praying my lung function is higher than 28%.

All in all though things are good, no actually their great :) and i couldnt be happier with my life right now.

Positivity VS Realistic Thinking

After my last post i got quite a few messages and comments asking why i would have the audacity to use the the phrase "when i die". "Whats wrong with you?" "Are you depressed and thats why you wanna die early??" One of my biggest pet peeves is when people are positive to the point where it ceases to be general optimism and crosses over to pure denial. Let me be very clear CYSTIC FIBROSIS CURRENTLY HAS NO CURE. TRANSPLANT IS NOT A CURE, BUT A LAST DITCH EFFORT TO EXTEND LIFE. 

 Thats not me being depressed, or negative, or throwing the worlds largest pity parade down the blogosphere's hypothetical Main Street, its me understanding that as it stands right now i will die from CF. There is no if theres a when and there is a very bold line between thinking realistically and staying positive, and while the line is there it is possible to stand right on top of it and feel equally okay with both sides. I dont see the point in sitting around telling myself ill live to be an old lady when i hover around 30% lung function at 23 years old. However i stay positive that while im sick ill live the best life i can and ill fight my hardest to live as long as i can. Perhaps theyll find a new drug or even better, a cure, and perhaps not but im happy with the life ive lead and im completely at peace with it ending early, because you see everyones life ends too early. Whether your 24 or 104 you will feel like you havent had enough time. You will feel like you havent done everything you wanted to do or havent seen all the things you had hoped you would see, because your always looking ahead. People tend to think of what they dont have instead of what they do. Look back, look at what you did and who you knew, and all the moments you laughed, loved, and truely felt alive and youll realize you didnt need half the time you had anyways. Sometimes when im really having fun, or im with the person i love, or im in a place i never want to leave i stop and close my eyes. Just for a minute. I go through each sense and i try my very hardest to remember everything i heard, saw, smelled, felt, and tasted and i dont let myself forget it. Then when i have a hard day with CF or im going through something particularly unpleasant or painful i go back to it, and its like im there again and i can forget about everything else for a little bit. At any time i can go back to the cold inside of a sea cave on a kayak

with my sister laughing because we couldnt paddle backwards or to the middle of a packed dance floor on NYE with dance music blaring and the floor covered in so many beads and puddles it was dangerous just to stand on when

midnight was the spark that jump started the best year of my life, i can be driving downtown with my best friend with the top down in her red z4 singing to all our favorite songs unknowingly on our way to one of the best nights i can remember or dancing on a bar in Nashville to Jason Aldean just because i could, and when i think about my short life i put all those memories ive been saving together and i realize i dont need more time. Ive lived a better life so far in my 23 years than most people do in 70. To me, thats staying positive. Thats me loving my life. I see nothing negative or depressing about a person whos genuinely happy. I do however wonder why everyone wants me to be so sad......