What nobody told me about transplant

"She never complained, always had a smile on her face and was positive up till the very end!"

This is a line that ive read over and over, ive read that no matter what happened there was not a single complaint, not a single moment where they didnt give up hope, and that through all the pain they smiled. Well guess what, im calling it. Im calling bullshit. Its easy to look at a facebook and see a snapshot of someones life and someones struggle and see the inspirational side of their fight and its a whole nother story to be the one fighting. For a while i felt like i wasn't as strong as everyone else and i felt like maybe i had given up and i just couldn't do it. I smiled for company and laughed with my nurses and when everyone left i cried, and i panicked, and i wished so hard that i could be the girl who stood strong and knew without a doubt that she was gonna kick ass and this would all be worth it. People like to be inspired, they like a story where the fighter comes out on top but its not always realistic. Prolonged hospital stays come with challenges that are out of our control, like depression, and anxiety, and panic disorders, and feelings of hopelessness. These are the things we don't normally see online but they need to be addressed. The stress that comes with transplant isn't something i was fully prepared for despite my teams warnings. After talking to members of my team and also a few new friends ive made in the online community im a part of ive realized that how im feeling is actually quite normal, especially after close to 3 months, and can be controlled. The decision to start on antidepressants and anti anxiety meds was a big one for me but im hoping that i can get back to the girl who looks at the road ahead and sees nothing but optimism and hope for her new life. Its only been a few days since ive started but im already feeling a difference in my overall mood and my motivation to go for walks and keep myself busy. I havent had as many times throughout the day where i felt consumed by my mood or thoughts and im getting back to relying on my own strength and will power. Over time i had started to rely on my support system more and more to fix my mood and bring me back up and it got to the point where they started taking on the stress i had and they also were getting overwhelmed and feeling the strain and i lost some people who were hugely important to me, and again felt like i couldn't do it ( i plan on doing a post later about the support system issues so ill touch on that later) but i wanted to shed some light on getting my self reliance back and on the common feelings that go with transplant but that you dont typically hear about. There seems to be a certain stigma in America that goes with psychological disorders that if you take a med to help balance you out your crazy or your somehow a lesser person or even thats its just a bad attitude but just like CF is a disease that i cant control, my depression and anxiety are going to be there and its not something i did wrong that caused it, im not just being negative, and in order to have a successful transplant i need my mind to be on the same page as my body, i need to be motivated and i need to be in the right state of mind. Feeling low and feeling alone are gonna happen no matter how many people message you every day and how many calls come in but im not weak, ya know how i know? i said i was done, i gave up, then i asked for help. You dont ask for help when your done. Bad days happen. They always will theres no preventing them but you can help yourself and let other people help you too. Thats not giving up, thats what fighting is, doing anything you possibly can to get through. Dont take the snapshots to heart. Feel what you feel, do what you need to do, and you can get through it but most importantly know that comparing yourself to someone else isnt realistic. You dont know what their battle really looks like!!! 

Plans For The Year

For the first time in a long time i went to a Mary Kay meeting and we talked about goals and staying positive and how your attitude can determine your life and I kept thinking of ways to make this year as amazing as last year and i have so many things i wanna do and as soon as i get excited about it all i remember why last year was so great...because i knew i couldnt do all that this year! Lol so i need to take it down a few notches on the trip planning which is hard because i reeeeally love going new places, but i thought id come up with a few goals and things id like to do this year So here goes :

1).....a few trips. LOL! But not like last year so i think i can plan for a couple without overdoing it! I wanna do the spring holiday with Allie for sure. Were so excited for that and although we were excited for Bermuda and island shenanigans i think staying in the U.S. is a good idea, not only would a road trip seeing new places and things be really fun but at this point im not sure leaving the country is smart at all. Setting up oxygen and medicine transfer and everything would be tough and If something happened there id be in trouble so road trip it is!! (def have out of country plans though for a later date). I also wanna do some smaller ones like Nashville and i think we were talking about California too.
2) I wanna get my fev1 up past 35%. It seems almost impossible lately but i think i can do it. If i focus really hard on getting my weight up and keeping it up, and really put work into exercising and making sure i dont miss one single little pill or treatment i think i can do it. I wanna put transplant off as long as possible because to be honest it terrifies me and i dont want it. Im really motivated to do this and im gonna work my ass off to get the results i want. Making serious changes to reach this goal!
3) Stop letting negative people and situations influence my life. Im happy overall but there are a few things that really get me down and I finally feel like im ready to clean house and get rid of the negative relationships i have with some people. Im ready to let go of all the things that im hanging on to even though i know they're no good for me. I know that ultimately itll make me happier and so its worth the sadness of letting those things and people go and moving on with my life. I have so much good in my life i need to focus on all that from here on out. :)

Maybe ill make some more but for now thats it, those are my goals, a few things i want to accomplish some in the next few months some throughout the year, very happy with this list and im determined to stick with it!!

Appointment/Health Update!

Its been a little bit but i hope everyone new year has started off on the right foot so far! Just to update everyone on how im doing I had a doctors appointment today at 3 and it didnt go as well as i hoped but i wasnt admitted so I definitely not complaining. I lost 2 pounds (down to 96 now) and my oxygen levels seem to be staying right around 94 now. My FEV1 was the same 28% as my last appointment and although its disappointing that its not higher im glad it hasnt dropped. The last 2 days ive been coughing up blood as well but its under a couple tablespoons a day so its not a huge concern right now the doctor just said to call him back if it doesnt stop or it gets worse and hell set up an admission right away. Also ive had a bit of a cold for over a month now but since that seems to be clearing up too im not worried :) all in all i think it went okay but it was a pretty disappointing feeling to have worked so hard like i did and still have lost weight and to have my lung function stay the same...i thought for sure id made a difference! This just means i have to work even harder before my next appointment. My weight goal is 100 lbs (i wont be healthy enough for transplant till i can gain and maintain my weight so is really important) and i wanna get my FEV1 up past 30%, its gonna be really difficult and take a lot of time and work to get there but i have an amazing support system full of people who help motivate me and keep me on track and im so thankful for all of them! Heres hoping guys!
xx

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......