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.

When Bouncing Back Isnt Realistic....

Well im ecstatic that my PICC was pulled just now seeing as it was driving me CRAZY!! I think i might have started to develop an allergy to the tegaderm dressing or the chloraprep (cleaner they use) because although my lines are never comfortable this one was almost unbearable, it kept me up at night and i thought i was gonna scratch my arm right off :( Soooo glad its gone, however it hit me last night as i was trying to catch my breath while walking through my apartment, that i was trying to catch my breath while walking through my apartment....

Allow me to explain- June of this year i went to the Apostle Islands thanks to my super amazing wonderful sister who surprised me with a trip she knew i wanted to do before it got too hard for me. I wanted to kayak through the sea caves on lake superior so badly and she planned a whole vacation, drove 8 hours, rented an incredible cabin with a private dock, planned hiking trails (one with a pretty waterfall you could go behind (see bottom of page for said happy times), fished with me in a half deflated raft, and paddled her superstar ass off in a kayak in a rain storm in 40 degree water so that i could do it. Words cant describe how much fun i had and how lucky i feel i saw something so beautiful and got to spend a few days just hanging out with my family and what that meant to me is priceless. I hiked up to 5 miles uphill most of the way and i ran and was able to kayak through the waves and i felt good. I felt really really good. Now its 5 months later, my lung function is a mere 28% and after 2 weeks of IV antibiotics and a 5 day hospitalization im still gasping for air while trying to sweep my living room floor. Its disappointing to say the very least. This is the first time that ive finished a course of treatment and still feel short of breath. Usually i feel unstoppable and this time i just feel the same. I knew this day would come, when i didnt come back like i used to after antibiotics, but i didnt think it would be at 23.  Looking back on how my life was not only a few years ago but just back in June is heart breaking for me. What else will i have to give up? I live for weekends out with my friends dancing and having fun but im scared those days are coming to an end soon as well...Scary stuff!