How to Deal.

Im not sure thats really a phrase anymore but i heard Hillary Duff say it once in a movie so im kind of a fan of the phrase lol, but shes not what i wanna write about (i mean maybe one day...she kind of kicks ass) but i mean how to deal with CF. Not in the sense of the physical toll it takes but how to deal with the damage it can do to your mindset, your emotions. It can hit your sense of self worth and it can tear you down. The disease itself can be a hard hit but when others get involved it can crush a person. Whether you yourself suffer from the disease or your a parent, sister, brother, lover, etc etc youll see the good the bad and the ugly from people on a constant basis. Im hoping my story and recent experience can help shed some light on the things we deal with, and hopefully give you some way to destress, forget the mess, and in short....how to deal (again, thanks Hillary Duff for this golden phrase!)

People in the past have been pretty brutal to me, and although i hid my illness the best i could there was still inevitable coughing and having to go to the nurse for enzymes and all that so people still knew something was up. Starting school again brought flashbacks of the kids who followed me down the hall fake coughing. The ones who warned everyone to stay back so i dont spread my disease. Things like this made my first day going back to collage a challenge and being made fun of right then during introductions left me crying in the bathroom like a little baby. (just for a min...i did have my big girl pants on that day.)

My friends and family have since been rallying behind me showing extra love and support throughout the past few days while i dealt with a string of serious medical issues and admissions and also this one man-child at school who decided he needs to bring me down each class in order to lift himself up. The support i have gotten has been incredible and i credit my ability to keep going back to class week after week to the people in my corner reminding me that i am strong and worth it.

"I was laughing because it was just funny to me."

however ive recently come across some people who took the bullies side. He had passed me a note because apparently were in 5th grade and the first part is pictured here. They argued that because the words "sorry" and "asshole" were in it it was a genuine apology. I find this, in no way, an apology. I find no humor in the things ive been going through lately and i find it very hurtful that he for some reason things its funny that im ill.


It was a comment saying shame on us all because this man in genuinely apologizing and were all being pretty rude about it. A second person also went as far as to send me a private message saying things such as "Who do you think you are?! You have one life to live and you like to live it making other people feel stupid and shallow. Congrats- I have zero sympathy for you. There is no reason to be an asshole to people and you continue to do it over and over." which to me makes no sense seeing as i was the one who was bullied.

My point is this, being chronically ill youll see both sides. youll be lifted up and supported and youll be brought down and stepped on. People will take both sides and are happy to be vocal about it. They will pick a side and defend it to the death and it may not always be the side you choose or even the right one (common sense is lacking here). How to deal with it is the hard part, over time your skin will thicken but the sting never really goes away. Lately xanax has been my saving grace but ive also started to see a psychologist to help me talk about these sort of issues and work them out, medicating myself into oblivion is obviously unhealthy, but when you receive hate mail after asking for support it seems like a good option.

There are apps that are available that teach mindfulness and help with meditation and relaxation, and as you know if your reading this, blogging is a great way to vent out frustrations, anxiety, share wins and bumps in the road, and receive support. I suppose after all my CBS writing and all my posts the fact that i got my first hate message just last night means i had a pretty good run!!  You do you. Try your best to never forget the things that make you better than the words thrown at you. Lean on others when you need it. Dont be afraid to cry. It happens. dont bottle up your emotions thats how people go crazy!!



In the long run im featured in 2 books, im a published writer on CBS Chicago, I have a (fairly) successful blog, i do advocacy work to help others in tough situations like mine and spread awareness about not just CF but many disabilities, i receive messages that i have brought hope and inspiration to people that ive never met. I am a total badass and i try to be a good person. the words ive heard and read lately do not define me. Hateful words and actions will not define your loved ones, we are true fighters and its important to never forget that. This is how we deal.

Finding a Future

Id like to start this post with a small warning that its not the easiest post to read. It may be a bit of a rant at times but Ive been doing a lot of thinking lately about my current life and my future and how my past as brought me to where i currently am and where im going. I dont usually bring my past up as its not a typical story and i suppose that some would consider it almost shameful or embarrassing but ive become very aware that its made me exactly who i am and its contributed to where i am in life and in my health, and so im making it a part of my story.

At an early age i understood there was a life expectancy for myself. I understood that my life would never be the same as everyone else my age (thats a bold statement as there are thousands and thousands of chronically ill children and teenagers in the world but im hoping you understand where my thought process is headed here), and i understood that perhaps the types of futures that others were planning would be a bit of a pipe dream for me to achieve.

Through maybe 13 or 14 i barely did my meds. Confessional time. I rarely did a nebulizer treatment and i was NOT going to be the weird kid taking pills before i ate. I hated my disease and i felt the need to hide it. Since i felt healthy i thought i didnt need it, i didnt realize how critical that would be to my health later in life. My mother never enforced my treatments and turned a blind eye when i said id do them later and never did. I wish now that she had kicked my ass, but she was also the type to sit around smoking knowing full well her child was sick...so wheres the surprise.

By 15 i was taken from her home and placed with my dad through Child Protective Services not just for medical neglect but because i wasnt showing up in school. I was getting in trouble i was mixing in with the kind of kids you dont need to be friends with and she wasnt capable of being a parent at the time. I was on a bit of a downward path and while at the time of the move i was furious and i felt ripped away from my entire life and uprooted, looking back at it that was the day that my life was saved.

My father forced me to do my treatments and while i still insisted on not showing up for class at least i went more often than not. I regret my teen years. I regret them so much, the bad decisions i made for myself would effect the rest of my life. My sister was my only constant rock through all this time.

By 18 i had moved out of my fathers house, in with my boyfriend of them time, dropped out of school, and then gotten married. I still wasnt doing my treatments and the parties we threw filled our apartment with cigarette smoke. I was a mess and i was slowly killing myself. By this time i had given up an on any type of future for myself and i was winging each day, this went on for a few years until i had a very bad medical scare in 2013. I caught the flu and within one week i found myself in the ICU on bipap and no sugar coating. They didnt know if i was going to make it. my lovely husband came to see my twice for about 20 mins each in the entire 2 weeks i was in the hospital. I didnt know about the online CF community i was alone, i knew i did this to myself, and i was afraid.

This was when i opened my eyes, i saw the fear in my sister that i wasnt going to make it, i saw my mom realize how bad my illness had become and i know a part of her knew this had all stemmed from the past. I made the decision during that stay that i wanted to live more than anything else on this planet. I wanted a life and i wanted a future, and not just any future, but the best possible one i could have.

From then on my husband and i split up. I began to do my treatments diligently and took every pill i had to take every day. I ate as much as i could to gain the weight i needed to keep off infections and i found the online Cystic Fibrosis community. Finding people to talk to who knew exactly what i was going through made life easier, some helped hold me accountable for my medicines and appointments and i did the same for them. It was life changing. Im so proud to call so many of these people my friends now, im not sure where id be without them.

My main point of all of this is that growing up i didnt see a future. All of that stuff that happened worse me down and i wasnt in a good place, i had given up. I had decided CF would win and that was that. However a few days ago at my transplant clinic after being listed for almost 8 months and having less than 29% lung function i blew a 32%FEV1 and my doctors agreed that i was healthy enough again to be listed as inactive on the list.

I felt tears welling up as it was evident that over the past few years the hard work and dedication to exercise and medication schedules has paid off. I was gaining back precious lung function which to me is equal to time. For the first time i saw myself in the future not just existing tangled up in oxygen cords or in a hospital bed but doing something i love. Today i sign up for GED prep classes to finally get started on finishing my high school education and hopefully be able to start taking college courses in the fall. For the first time im doing something with my time that i feel is worth while and meaningful, im writing a blog for CBS which is beyond what i ever thought id accomplish.

In a way my sickness is both killing me and saving my life. I gave up for a long time on myself. I let life get the best of me and i sunk down, i didnt have the support or encouragement that i do now though either. Im proud of myself and the decisions im making for the first time in a long time. Im going to make something of myself despite my illness. Im going to hold from transplant as long as i can and accomplish the most i can and post tx?? the sky is the limit for me i have no doubts now.

The Other Side of Your Support System

"Support system : a network of people who provide an individual with practical or emotional support." 

It sounds so serious at times, it sounds almost intimidating to me, and while i like the idea of it, the idea of a group of people in my life who together make up a system of constant love, support, and encouragement i also know that for people living with challenges like, but not limited to mine, this system can be very complicated. I'm not saying that the average healthy person doesn't have social problems but adding in chronic illness, constant hospitalizations, and stress through the roof doesn't necessarily help. Going into transplant one of the things they asked me about on my very first appointment was who do you have that you can lean on for support? Who do you have in your life that you can talk to, vent to, who can help you in hard times? My list went on and on. I had everyone. I listed my sister who's been my absolute rock for years and still is. Shes the only person i can honestly say i have absolutely zero doubts about leaving me in any way shape or form and who would run through a brick wall if she needed to. Shes strong as hell and shes a constant source of love and support. I listed my parents, who despite our rocky pasts and admittedly rocky present can be counted on for a certain level of support and help. I listed all of my friends and i listed my boyfriend because despite the hundreds of outs i gave him he swore it was worth it. I was confident in my list of people i was confident that this would be hard but that my support system wasn't something i had to worry about. Turns out i did. Here's the complicated part, the last 3 months I've gotten an out pouring of support online from different people, communities, companies, you name it all on my side wishing me well letting me know they're in my corner that they're behind me in my fight 100% and reading the love pouring in from all over the world melts my heart. To know that complete strangers care enough about me to to take time out of their days to send me a message or send me a package or a letter to brighten my day blows my mind!! Yet at the same time the people who i see on a regular basis are here feeling the stress and its overwhelming for them. I always thought of the people around me as the true heroes here, because while this is my life and i have to live it they have a chance to walk away from it and they never did, but lately a few have taken that walk. So while i have this online community rooting for me every day my personal support system was crumbling fast. The world keeps moving my friends have lives, they're 25 their finding their dream jobs, getting married, having children, going out on weekends, living it up like they should be and its not always ideal to sit in a hospital room. My boyfriend is an amazing man, I've never met anyone so caring and loving and constantly there for me no matter the situation but after 3 months stress builds, and he has his own well being and life to worry about and i cant be there to be a part of it and that puts a lot of strain on us as a couple. I  was caught up in my own version of what my support system was and what it meant that i forgot that the people in it are feeling this pressure too. I became too reliant on them. I lost my own sense of strength and i forgot the girl who walked into clinic head held high knowing i was gonna kick ass and come out a healthier person, able to travel, and live, and breathe like everyone else. Your support system can only be as strong as you let it, if you lose support for yourself they will feel it. its okay to lean on people and to need them but they cant be your only source of good. This process took it out of me, but I'm hanging in there. It took losing the people i leaned on the most to realize how much I'm capable of leaning on myself and since then I've been happier and healthier. Find the balance between asking for help and support and relying on the people around you for everything. Don't underestimate your own strength and will power, don't get to the place where your sitting in a room waiting for those people to come back because you just cant be you without them. Recognize that you need to support them too, take a little walk in they're shoes, understand the stress that this puts on them, and your rock solid support will stay diamond strong. 

People love you, let them when you need it, realize you can love yourself just as much though. <3 

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......