heyooo!! first off im going to be starting a series of video blogs, if theres any topics youd like me to cover or things youd like me to talk about leave them in the "leave me love" section or private message them to me!! also if you enjoy my blogs i highly encourage you to follow my instagram at yolksonyou24 and/or my twitter also theyolksonyou24 or even keep up with my day to day on my facebook page living breathless in the windy city <3 aaaaaand back to our regularly scheduled babbling!!
what do you picture when you think of success?
to me success isnt measured by the money in your pocket or how many cards you have in your wallet. your not better than another person because of the possessions you own. one life is not greater or more important than another.
growing up with CF this was fact. this was truth. my successes as a child were sometimes as simple as running in a game of kickball, that was hige! my successes as a teenager were staying out of the hospital. my successes now are far and beyond anything i ever dreamed id accomplish and even though i cannot work, i cant go to school, and i cant contribute to my household in many ways my life is just as important as every other life on this earth. i am extremely successful in life because i take it for what it is and i dont give up on it.
i mean look at me! talk about success im alive. im 26 and im alive when at birth the average age of survival for a person with cf was around 18 years old. ive been through the ringer yeah but im here, no amount of money can top life. dead men dont need cash or credit cards. a successful life is filled with experiences, which ive had plenty of. im not successful because i have a high paying job and live in a nice apartment but because ive never taken a day for granted. when i wake up i inhale as deep as my lungs will allow. i fill my chest with air and with each expansion of my rib cage i smile because i have one more day. i can fill it however i want to and lately ive decided to fill my days with a new kind of success : making an impact.
The thing with my disease is that its terminal. yes transplant will extend my life but it wont take away my cf. ive heard a lot of people say that they dont fear death they fear being forgotten. they want to make a difference. they want to make an impact on the world and leave their mark before they go and i do too. Aside from my work with Aleppo ive been working very hard for the CFF. every year i renew my team for the cystic fibrosis foundations annual great strides 5k and ive put my all into it this year. (not that ive slacked in the past weve always done well) but im really going for it.
Sitting at my computer making phone calls setting up events while also putting together a humanitarian project is exhausting and tiring but ive never been happier. i feel like im making a difference in the world again. so heres the word of the day. i feel successful.
no matter what you do please dont underestimate yourselves. dont underestimate the power you can have in the world. with illness its easy to feel like a leech but just by living your life to the fullest, doing what you can to help others who need it, and realizing your own personal accomplishments matter you are a success.
Showing posts with label goals. Show all posts
Showing posts with label goals. Show all posts
Wednesday, November 30, 2016
Tuesday, June 28, 2016
Adulting Awareness Week-Balancing Health and Life
Today i need to talk about a very important issue overlooked by many, Adulting Syndrome.
Adulting Syndrome : suffering from being an adult with real life responsibility.
Symptoms : knowing the right thing to do/recognizing daily obligations and actually doing them.
Treatment : suck it up.
The last week or so has been a little bit crazy for me. I started the process of finally finishing my education and getting my G.E.D and starting school. I want a better life for myself, not just financially but also for the reward of accomplishing something. While most of my friends joke about how i get to sit around all day they dont understand how worthless that can make a person feel. I Im ready to making a difference. (and to make enough to buy my dog rubies and an exact replica Sherlock Holmes outfit...but anyways...) My initial pretest scores were high enough that all i need are a few review classes then i can take the test and hopefully start College in the fall!!
Heres the hard part : I still have CF (duh). The day to day with CF can be hard as is, the treatments daunting and the work to keep my health and fitness in a good range takes time and a lot of energy so adding in anything extra has to be done, in a way, carefully. Its good to push yourself to a certain extent however overexertion and stress can do more harm than good in some cases, and as always germs can play in a big role especially in a large public place like a school.
Although i believe my current health and lung infection isnt related to school or what ive been doing lately (its summer, downtown and beaches are happening!!!) but instead more of a tune-up or a flare up of the bugs i always carry in my lungs i know that i need to be careful with my workload. Approx 5 years ago i had to leave my job because i was draining myself and couldnt handle doing even simple tasks anymore due to the low lung function i had, and ill admit im nervous that ill be doing a repeat performance with my education but i also know how many people i have rooting me on and helping me in any way to achieve my goals.
Im also slightly intimidated by the other people and the questions i know ill probably get about my port and what it does since its currently accessed. Last time i was in school i hid my disease like my life depended on it and while ive been open about everything my disease is and carries with it i still have that little part of me that is terrified of being labeled "the sick girl". Days when i might need oxygen or ivs are gonna be a little scary to me, but the silver lining is that ill be able to use that to spread a little awareness to my classmates!!
Im absolutely tired at the end of the day and my $1 mccafe coffee holds me together through my THREE HOUR night classes (ugh!) but in a way i feel great. I feel like at the end of the night when i go to bed ive gained a little more knowlege. Ive spent those 3 hours (seriously...ugh) learning and bettering myself and working towards a future i can be proud of. I want new lungs..one day...and i want to live out a life that means something with them.
Adulting is hard. Its drainging. Its annoying....but its also awarding. Im very excited to see what happens later on down this path!!!
Thursday, June 23, 2016
Back to Student Life
school was never a priority for me, i struggled in my teens with a lot of family issues, self esteem problems, and what i recognize now as major depression. It was a tough time for me and being in class was never top of my list of things to do. part of this decision was the crowd i hung around with. The crowd who thought life would always be one big party and that rules were more like guidelines, the crowd who lived for the moment and didnt see going to class or spending time on homework as something beneficial. Unfortunately school wasnt the only thing i was skipping, my meds and treatment times slipped into that category as well and since i felt fine i thought i was fine. doctors didnt know what they were talking about right? my teenage self knew it all.....or so i thought.
After turning 18 and having no choice but to leave my fathers house and not being able to return to my mothers due to her lack of care for anyone but herself and her insisting on smoking up the whole house i didnt see it as as issue that i had to live on my own, i can get by on a job at the mall right?? nope...didnt go so well for me either.
with no high school diploma and having spent years skipping meds and assuming i was fine i became sicker than sick and eventually found myself jobless, constant hospital stays and a very bleak future ahead of me.
Recently over the past year ive been working hard on my health and focusing on getting my lungs and my body back into shape to live a more fulfilling life, which is finally at a point where i can handle going back to school. I just recently took GED placement testing and sign up for prep classes and the test tonight!!! The decision to get an education and ultimately start a career was a hard one, having lived most of my life on the edge assuming id be dead by now i didnt see the point in wasting time in a classroom for a career id never be alive to have.
For the first time im confident in my ability to live a long successful life, the hard work ive put in wasnt easy and i know adding classes to it will be a new source of stress but in a way i think itll be good for me. Im working towards a future and i have purpose and meaning to that future now. I wish i hadnt wasted so much time being a stupid ignorant child and i wish i had parents who whipped my ass into gear and took more time to help me stay on the right path.
After i pass this test (which ive been studying my butt off for!!) i can register as a student and start my pharmacy technician program (which im thinking the whole CF deal with give me a bit of a leg up in that area hahaha)!!! I cant wait to start this new sucessful chapter of my life and feel the pride from a job well done. To see the benefits of hard work pay off and to have something to work for. A goal that keeps me going day to day, a source of motivation to keep this healthy lifestyle going as long as possible!
Im ready for my new life, i hope its ready for me!!
After turning 18 and having no choice but to leave my fathers house and not being able to return to my mothers due to her lack of care for anyone but herself and her insisting on smoking up the whole house i didnt see it as as issue that i had to live on my own, i can get by on a job at the mall right?? nope...didnt go so well for me either.
with no high school diploma and having spent years skipping meds and assuming i was fine i became sicker than sick and eventually found myself jobless, constant hospital stays and a very bleak future ahead of me.
Recently over the past year ive been working hard on my health and focusing on getting my lungs and my body back into shape to live a more fulfilling life, which is finally at a point where i can handle going back to school. I just recently took GED placement testing and sign up for prep classes and the test tonight!!! The decision to get an education and ultimately start a career was a hard one, having lived most of my life on the edge assuming id be dead by now i didnt see the point in wasting time in a classroom for a career id never be alive to have.
For the first time im confident in my ability to live a long successful life, the hard work ive put in wasnt easy and i know adding classes to it will be a new source of stress but in a way i think itll be good for me. Im working towards a future and i have purpose and meaning to that future now. I wish i hadnt wasted so much time being a stupid ignorant child and i wish i had parents who whipped my ass into gear and took more time to help me stay on the right path.
After i pass this test (which ive been studying my butt off for!!) i can register as a student and start my pharmacy technician program (which im thinking the whole CF deal with give me a bit of a leg up in that area hahaha)!!! I cant wait to start this new sucessful chapter of my life and feel the pride from a job well done. To see the benefits of hard work pay off and to have something to work for. A goal that keeps me going day to day, a source of motivation to keep this healthy lifestyle going as long as possible!
Im ready for my new life, i hope its ready for me!!
Friday, April 1, 2016
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.
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.
Sunday, January 10, 2016
Post Transplant Thoughts and Ramblings.......
Ive always loved open space, feeling like the only person for miles and miles, being in the middle of nature without a single man made noise. My favorite vacations were cabins in the woods where my days were spent hiking and kayaking, sitting on a porch eating dinner watching the sun go down over mountains and tree tops. I love waking up to foggy mornings next to a lake, drinking coffee and hearing nothing but birds. Tonight the dumbest thing happened i was watching X-men Origins : Wolverine and for some reason when it showed his house in the mountains, i got this pang of sadness. My life now consists of being in one spot, near my transplant center, constantly running to appointments and hospital stays. Im connected to my phone at all times in case "the call" comes in or i have an emergency and need to call an ambulance. At times im conflicted over transplant because i feel like it could be too early, like im still healthy enough to keep these lungs for a long time, but then times, like right now, i want new ones so badly, i want that life i love so badly. I want to hike and run and feel free. My oxygen cords are like a ball and chain and i wanna break away from them but i cant. These last few years ive tried to do all the traveling i could because i knew this was coming and as much as i did i still want more!! I cant wait for the day i drive away and stay away for a significant amount of time!!! I love my family i could never leave them for too long but my number one post transplant goal is to live somewhere new, on my own, for at least a few months. I wanna explore a new place and experience new things!!! Its so weird how that one scene got to me so badly hahaha i feel so stupid but sometimes the dumbest things really make ya think!!
If you got a second chance at life, where would you go? what would you do with it? would you wait till you were cleared to go back to your job and keep your life how it is or would you go off for a while? live out a dream for a little while?? Im so excited at the prospect of a new fuller life right now! Terrified....but excited.
brb daydreaming of new lungs, and new life.
If you got a second chance at life, where would you go? what would you do with it? would you wait till you were cleared to go back to your job and keep your life how it is or would you go off for a while? live out a dream for a little while?? Im so excited at the prospect of a new fuller life right now! Terrified....but excited.
brb daydreaming of new lungs, and new life.
Monday, January 20, 2014
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!!
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!!
Subscribe to:
Posts (Atom)