Ignorance is bliss and awareness is hell

Excuse any crazy errors I have, i recently began to blog from my phone and I haven't quite figured this app out yet ha (including addi n pictures, but as always in have links to my fb page and my Instagram if your interested you should check them out.

However I'm hit hard today by the lack of compassion from a few rididculous healthy people, but also blown away by the love and support from people who either live a chronic lifestyle or took time to understand it.

As I wrote previously, I was apprehensive about being open with my C.F. in school as I was bullied pretty hard at times for being sick. I was hoping that being in a class of adults they would have common decency. They almost did. One classmate had argued that my illness was no excuse for the things I haven't been able to do. Like I'm lazy, like I just gave up and there's no excuse for me to be 25 in a GED class (I suppose he forgot he's in the same class??)

It got to me. I left for a bit and calmed down on the bathroom. Came back to class amd continued to pay attention only to my work at hand.

My point here is that ignorance is bliss. When you dont know the facts it's easy to go gung ho on your position and not acknowledge another person's points or struggle. (Which he ironically showed when he refused to do an assignment because he didn't like the side of the prompt he was given....hes gonna go far).

Awareness isn't any easier. Knowing the truths and struggles and having them thrown in your face as an "excuse" Can be heartbreaking. I picked myself up. I realized I'm sick, on iv antibiotics , juggling hours of treatment a day, keeping up a fitness routine, managing my general health, helping my family, keeping an amazing social life, and showing up to class on time doing my work and most importantly : being a bad ass bitch who doesn't need to take that.

This man will struggle with social situations and in a work place setting with an attitude like that. Downplay my life, call me lazy, but walk a day in my shoes.

I got this. I fight hard and I show no mercy. I will succeed. Watch me kick ass while waiting for a double lung transplant, then look me in the eyes and tell me my illness is invalid.

Haters gon hate.

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!!! 

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!!

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.