A Small Thank You

i like to look for the silver linings, i think its important in moments of darkness to try to see the good that surrounds you. lately ive had trouble seeing through the smoke to find such things. today however i woke up to messages and texts and voicemails of support and love, ive had multiple offers to take the place of my main caregiver and i saw the little glimmer of light throught the dense smoke that filled my mind.

my decision to possibly not accept transplant is not one i take lightly, and its not about petty fights or heating bills. i love my sister and my last post was written in a lot of anger and anxiety, however there still stand a lot of outside circumstances that make transplant very difficult. 

id like to believe that while i wait i am able to stay calm, to keep my anxiety low, and my depressive episodes in check however i cannot do that at the moment. im once again being very diligent with my medications and im keeping all my doctors appointments, even adding on a few more to ensure i make this decision as informed as possible. 

i appreciate all the support and i would like to ask you all to please stop telling me itll get better after new lungs seeing as this is not about my health right now. i will not go into details as it has upset my family when i did last time but things are not stable and i dont feel my tx will be successful as of right now.

im staying positive, well, as positive as one can be in this situation and im continuing my work on the Aleppo project and my fundraising for next years great strides walk and team Raising for Rachel (which needs a better name now that we have multiple cfers on the team!!). thank you for all the love. you are my silver lining, your keeping me going, and while online vs real life support is different its amazing the feeling i get when i wake up to a flooded inbox of support. thank you. 

to transplant or not to transplant that is the question

today i had an epiphany. one that i feel has been building for some time but suddenly burst, causing an array of emotions similar to that of a child blowing dish soap through a wand. amazement, curiosity, wonder, and a strange sense of the unknown. ive always been pretty gung ho about transplant i want more life, a better life, i want one that feels more normal, although they say its trading one disease for another it seemed that transplant was the better of two evils,

please know i have every desire to live. i have lists and lists of things i want to do, i want to see my nice and nephew grow into the smartt amazing women and men i know theyll become. i want a family, white picket fence and all, something i never even considered before but now is a goal of mine, a future endevor that i hope i will one day accomplish.

what stands in my way is a question.

"do i feel my transplant will be successful and do i believe and that in my current situation i will thrive with my new life?"

contradictrart to my last post i do feel like a leech. like some scum of the earth bug that hangs out and never leaves. my sister will never turn me out and her husband is growing more and more tired of me mooching off of them day in and day out but theres nothing i can do. i cannot work. i cannot go to school. i feel worthless as a human being and i feel like a waste of space. tonight we got into a petty argument because i wanted a heater for my fish and my dog to stay warm, i cant pay for the bill for a space heater which i dont know how much it costs but i dont imagine its too much and i was told as soon as my friend leaves my space heater for my living room would be taken away.

part of me is my pets no matter how stupid that sounds, i want them safe and warm and im heart broken that i cannot contribute to keep them that way.

today ive been thinking that maybe transplant is not for me. perhaps the strain on not just me popping xanax like candy because my anxiety is heart pounding, breath taking, sick to my stomach intense but because im causing strain on my family. between us and between them. i refuse to be the reason my sisters marriage falls apart. i refuse to be the reason my beautiful niece and adorable nephew grow up with fights between their parents over something such as having to take care of a worthless nonworking noncontributing leech.

yes, i want to live, but not under these circumstances. not where i live in a home that im scared to leave my room. not in a home where im cold day in and day out because i cant afford to pay for upstairs hear or insulation. i want a full life and i feel like ive lived one. my depression is getting worse and my anxiety is through the roof. ive skipped meds and treatments because i just dont care anymore. this is the dark side. this is the side of transplant people dont talk about. the doubt and the worry and the feeling like absolute garbage.

the only people who understand the decision to decline transplant are the ones in situations like this one. situations where fighting is is just too much please know im okay with this and im fully at peace with my decision. ive lived a life full of adventure, i still have plenty of time left and i intend to use it to continue my work with the #StandWithAleppo movement and my fundraising work with the cystic fibrosis foundation.

thank you for all the love and support over the years, i feel this is the best decision for me and for my family, we will all be at peace. please feel free to leave me comments or thoughts but i cant say ill change my mind as ive been thinking on this for some time now. i hope you all respect my wishes.

love to you all.

how do you measure success?

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.

today i wish i could tell my 8th grade self.....

during my 8th grade year we did a segment in school where we were asked where we thought wed be in 5 years, what about 10? what careers would we have what types of lives did we see ourselves living? did we see families or kids? we had to take a little test to see what sorts of jobs matched our personalities and what fields we might excel in. we researched the jobs we wanted to have so we knew what sort of degree we needed and how much experience it would take to get to the tops of our fields should that be what we aspire to. 

i didnt see myself here. i didnt see myself slowly rotting away getting sicker by the day, currently with no chance at a call for transplant due to conditions that are far out of my control. i didnt see myself working for hours on end each day to help innocent civilians overseas gain basic human needs. i didnt see myself curled up in balls of depression on some days fighting back anxiety attacks that threaten to tear my mental well being into shreds. i saw a world of endless possibilities. 

now, today, i see the worlds ugly side and its humanitarian side all at once merging together, clashing like waves on rocks. each side in a never ending battle the waves continue to push for a better tomorrow and the rocks steadfast in their ways. my work through my role model and mentor and her brilliant efforts to help those in E. Aleppo has inspired me in so many ways, its given me a new meaning to my life in a few ways. Ive become more grateful for the medical care i receive and for the abundance of food, water, heat, and clothing i have. for the safety that surrounds me. i take pride in the work i do in the effort to bring awareness, support, and solidarity to the civilians overseas and im so happy to be a part of this movement. i wish i could tell my 8th grade self that i would be making waves, that i would be eroding the rocks that stand tall, eventually wearing them thin.

today i see a new found appreciation for life, i wake up to a new day and the first breath i take in is a miracle in itself seeing as the last one i took before falling asleep could have been my last. my lungs are far from healthy and if we were able to open me up right now im afraid they would just pop. Many have asked about my current situation and here goes : i am on hold and have been for a bit over a month. i went on hold due to a sinus and esophageal infection and continued to be on hold until after i am able to get my qisdom teeth removed, this seemingly simple procedure must be done in an or while i am vented in order to make sure that i am in the safest environment possible should anything go wrong. my insurance is fighting tooth and nail and im about to give them a little bit of my mind in to try to get things rolling a bit faster!!! but until a few days after the teeth are removed i can be reactivated and hopefully get a call soon after. i wish i could tell my 8th grade self that i would be getting a second chance at life in my future. 

today i feel sad. as juvenile as that sounds. i just do. i have a lot on my mental plate. i recently started dating someone which is, in general, a happy situation, however my old relationship was one for the books and with my soul bared here its a little hard to bring someone new into my life in a romantic way. hes a wonderful man, very kind and sweet and treats me with all the respect in the world but this means creating some space from my ex and that in itself is a little sad to me. im happy were able to be totally open about it and he knows my feeling on the whole situation. my anxiety is hard to cope with lately as some med switches have left me with some tough days and more than my share of anxiety attacks that are not treated as they should be. i wish i could tell my 8th grade self to be more assertive with my doctors because you know your body and you need to speak up. mental health is serious and you need to take care of your mind as well as your body. 

all in all i wish i could tell my 8th grade self a lot of things about the next 5 to 10 years, some things id leave out as they made for some fun surprises!! some i may want to warn myself about or prepare for, some id leave just as they were, we cannot tell the future and we cannot change the past but we can do in the present what we think is right and what we need to do to make ourselves happy and healthy, so i say to you, where do you see yourself in 5 or maybe 10 years? do you like what you see? if not now is the time to change it! but keep in mind we cant change everything. war and crime will happen, heartache builds us into who we are, sickness can provide us with a view on life that the healthy will never know, mental illness while hard to handle and, at time, can be a weight that crushes us can me managed. always know you are not alone. if you dont like the picture youve just painted of your future now is the time to change it!! this is your life, live it to the full possible extent and dont look back! 

Ive also renewed my walk team this year Raising for Rachel for the Great Strides CFF event!! please please feel free to click on the link ive provided below and make a donation to my team to help benefit the cystic fibrosis foundation!! one day cf will stand for cure found we just have to get the research on the same page!!! thank you! 

Raising for Rachel

again i encourage all of you to reach out to me via the contact form if youd like to get involved with the movement in Aleppo. id be more than happy to answer questions, point you in the direction of some great websites, and include you in any twitter storms projects etc etc. if you wanna get involved and share stories and tweet your elected officials please do so and make sure you include the tag #StandWithAleppo. thank you!!! 

sitting ducks

they say positivity is key, we need to look forward we need to look for the light in the dark of the situation. i always try to find the silver linings. i close my eyes and i list off the things i have. i list off the people in my life who have stood by me through thick and thin. i take myself back to moments in time when i didnt think that id ever be that happy or that content but there is still a darkness in my life that creeps in like smoke under the door of a  burning building. my room isnt on fire but the smoke chokes me and the windows, stuck shut, make me feel like theres no escape. we are not stronger than the rest of the world we just have no choice but to continue on and do what we need to do to live.

this morning waking up i felt an annoyance that rolled over from the night before. my medicines cause havoc on my mood. i can cry and i can laugh in the same 5 minutes. i can be so angry i feel the pressure build up until i want to explode and i can hit lows that i didnt think were even possible. i am content at times, although lately those times have been a bit further apart. my self love is fading as my body image changes. weight gain and moon face makes me hate the mirror, getting dressed can cause stress as my closet full of clothes stretches tightly and jeans dont zip up like they used to just weeks ago. this is the ugly side. this is the side i dont normally post.

my sister once reminded me that facebook is a snapshot of life. its a glance into others worlds and its not accurate. people will post what they feel proud of or happy about you dont see the tears and you dont see the crushing depression where they sit in bed for a day. you see the smile in a hospital bed when friends visit during the day but not the tears that come at night when the loneliness creeps in.

today is a hard day and i dont feel like sugar coating it. i feel like screaming at the top of my crumbling lungs but at this point i dont think they could even handle such a feat. i need new ones, but the hoops i need to jump through are getting smaller and harder to fit through. im currently still inactive due to said hoops and it scares the hell out of me that im not even just waiting but sitting. im a lone duck in a clear pond with a rifle aimed right at my head and i cant do anything about it.

transplant is my last option. im end stage. my life expectancy is under 2 years if i dont get lungs. its scary and im scared. being on hold makes it worse. my anxiety is through the roof. nobody tells you how emotionally hard this is, you get folders and books and info packets and attend classes but nobody tells you how draining waiting for an organ is on you.

like i said, im not stronger than you. im not inspirational. im living my life and trying to extend it as long as i possibly can but there are days where i wish i could push a button and end it all. hospice has crossed my mind. im tired. im depressed. im barely hanging in because i want a life back where i wake up with energy and take on a day. i want to have a job i want to have a family i want to live like the lot of you. my stubbornness is my lifesaver, but its not extraordinary. its not that im some sort of hero for going through it all.

rant over.

family goals

i have seen both sides to the should a cfer have children knowing theres a change that child could have cf as well or be left losing a parent but also that we deserve happiness and families like everyone else, and both sides make good points. i was never worried about that because i was pretty set on my life staying as it was, dating, maybe finding someone and having a couple of dogs and thats that so i never put a whole lot of real thought into it. 

my last relationship changed my views and my goals almost overnight. i began to see myself with this man down the road, married (something i never wanted to do again), with children believe it or not. when i look at my life down the road now id like to be able to have a family a nice house in a nice neighborhood, and still those couple of precious little chihuahuas haha but is that a selfish choice? 

while im currently single its been about a year since my last relationship ended and ive been feeling getting back out there, finding someone who isnt chased off by a diagnosis and im struggling with the fear of all the obstacles that are no doubt going to get in the way. the closer i get to transplant the more hospitalizations and sick days, meds and procedures ill need to go through and putting that sort of strain on a new relationship is going to be a pretty big challenge. furthermore the family discussion needs to happen earlier than a typical relationship because with cf having a family is going to be anything but simple. i will not be able to do a traditional pregnancy id have to do surrogacy or adoption, both of which im open to, but that was a major part of my last relationship (with no blame and no bad feelings, it was pure honestly and i have nothing but love and the utmost respect for the man). also the fact that having a family with me could (just being realistic) end up leaving my future husband or boyfriend alone to raise a family if my transplant should fail me.

i see the side where people say its selfish because your child could absolutely have cf and that is not a life id wish on anyone, especially my child. but i also see that i deserve a family and happiness and to follow my own path and not let this illness define what i want to do or how i want to live my life. 

im 26. my friends are getting engaged, some are married, some are expecting. i have moments where i wonder if ill get those moments. if ill find someone willing to look past everything i have and see the woman i am underneath the oxygen tubing. i need to believe that one day ill have a hand to hold that wont let go when things get hard. i feel like ive done a lot of growing the past year and im ready to find someone to grow with. im ready to move on. im ready to find my own path and write my own story and i dont want to write it alone. 

ive come to realize that i deserve happiness and normalcy but i also feel a little selfish for wanting these things. like im dragging others into my illness in a way. because its not just mine then, it would belong to my partner and to my child or children. the hard days would be hard on them, working around my hospital schedule and medical issues would become a family affair. 

as i said there are two sides. i see them both, but in the end i need to take the one thats best for me. i suppose finding a man who doesnt wanna run would be a good place to start......

what are your thoughts on families in a chronic illness setting? how do you manage your spouse and children while keeping yourself healthy? do you think its selfish to want the white picket fence life when you know you could rip that away from the ones you love at any time? 

this is new territory for me.

there are very few people who are good at waiting. patience isnt a quality thats commonly found, especially in todays world things are so fast. traffic, slow Internet, people strolling down a sidewalk can put a city walker into a rage! waiting for your food at a restaurant or for a package to come in the mail is almost anxiety inducing to some......can you imagine waiting for a new organ??

ive never been a patient person, i drive too fast when i have nowhere to go. im not in a rush to get groceries but i speed down higgins like my life will end if im stuck behind that prius for one more second. i dont know why im in such a rush. when my facebook doesnt load fast enough or my food takes too long to cook its awful to me, and ive spent the last year of my life waiting for my phone to ring telling me that there is a pair of lungs waiting for me. waiting for someone to tell me my life will never be the same because i will live longer and have a more fulfilling life.

however ive just received news im too sick at the moment to receive this call. i was put on hold until my meds are lowered and my multiple infections are under control. this is a crushing blow for an inpatient patient.

when you cant work or go to school theres not a lot to do with your day. i spend a lot of time sitting in different spots around the house, reading, watching bad tv, watching good tv when luck has it, waiting for friends who have real lives to get off of work and hope they have a free night to hang out. ive began going ot church more for the community and social interactions and structure than the religion, looking for classes that dont cost and arm and a leg that i can take to get me out of the house.

im waiting and thats all i can do. i cant make my lungs or my other organs cooperate like id like them too all i can do is hope for the best and its beyond a doubt the most difficult thing ive ever had to do. knowing now that i dont even have hope for that call to come in (at least not right now, ill get back on that list im very determined to do so and these are just infections, they can be treated!) its even harder. it drags the wait on and it prolongs the anxiety.

i admire the people currtently waiting and the ones who have gone through the wait. this is no easy task and those who have to experience it have strength in them like nothing else. ill be here hoping for the best, but a little crushed at the moment.

im back baby and ive got some views on the pain killer game

So my absence is hopefully ending now, its been a rough few months total but im on the mend and feeling better than i have in a long time!! Whatd you miss?? now a whole lot to be honest, lots of doctors appointments and the usual CF life. Some bigger ones are that im being evaluated to get gerd surgery to fix my acid reflux and also getting my wisdom teeth pulled, so those are some fun procedures to look forward too that hopefully will go smoothly as ill be knocked totally out for the whole lot! smooth sailing. i also seem to have a lot of swelling in my sinuses and were gonna start on some steroids (a higher dose..joy) and see if that helps, if not were considering another surgery to clear out those top sinuses again. but till then more debrievements and just trying to keep things clear!!

on the fun front ive gotten out a few times and had some nights in just having dinner and sleepovers with friends, watching movies and what not. i have to say the fact that i was able to attend the bridesmaid brunch for my best friend and daisy that you all know as katie was probably the highlight though! she got engaged recently to her boyfriend jim and the wedding is set for next september!! weve all been waiting for this one i think!! it was phenomenal and delicious and i had too many mimosas so it was a perfect afternoon! it was nice to get out with some girls and chat and eat, it was at alittle french place called nellcote and i had lobster hash which is now my new favorite benedict in the city! she made us beautiful bridesmaid packages with a personalized bottle of champagne and 2 bracelets which are gorgeous and well all wear them at the wedding )which im now under pressure to not loose!!!)

also i got out to the pumpkin farm with jake which i was so upset i had to miss last year it was great to make up for it, also the weather could NOT have been better for us!! i went a little crazy feeding the animals and petting the giraffes but i held it together pretty well haha. he has a few of my favorite pics on his phone so i cant post them right now but i fed a little kangeroo and a girafee and it made my life pretty much complete!! i got a few small pumpkins and love the little fall look it brought to my living room!

ive been feeling like myself more and more i cut my hair a bit and redyed the mermaid magic into it!! i feel way more like myself!! i odnt know why growing it out was ever even an option, not having colored hair just felt weird to me!! im having more and more days where i feel up to getting dressed and ready and doing my hair and makeup and making cute outfits (with the clothes i fit into....thanks water weight) and all in all id say im doing well. last i heard im still second on the transplant list so were still waiting on those lungs. im still using 2 liters, 3 with activity, and also i started cpap overnight and have been sleeping better than ever. all in all things are good and i appreciate all the love i got during my break as i didnt have the energy to keep up on posts.

on to my post : painkillers. this is a touchy topic for some, as the chronic illness community experiences such vast differences in levels of pain and needs for medicines to control it its a wide topic. I originally got going with this a few weeks back when i started needing more pain management myself and then tonight i watched the latest episode of John Oliver and it was on, you got it, opioid addiction. Some of the things i totally agreed with and were spot on but he did have a few misconceptions and annoyances to say the least.

starting with my own deal, i began having severe chest pains from the amount of coughing i was doing a few weeks back (these meds can cause some serious brain fog so please excuse my timeslines) and i was put on a 72 hour fentanyl patch, hydrocodone for breakthrough pain, and then a cough syrup with codeine to control the cough long enough to let the muscles and organs relax and hopefully help stop some of the pain at the source. its been very successful im still using the patches and the hydros but im done with the cough syrup as i know how important it is to be able to cough the junk up out of my lungs and i cannot cough effectively when i take that one.

ive been weary of pain meds for as far as i can remember because of addiction in my family (to other things) and i didnt want my life to become like theirs where they are dependant on a substance, but i was also sat down with and talked to about how controlling the pain is important to live a life not only in comfort but to be able to exercise or cough hard like i need to i need to be pain free for the most effectiveness. if that makes sense...i really hope it does haha. when my lung collapsed i was on high doses of morphine, fentanyl, and dilauded, and oxy, and everything else in the book for 3 months and i did develop a slight physical addiction and needed to withdrawl from that which was very difficult and now makes me even more weary of taking these kinds of meds.

using pain killers is a personal choice, some people have a high tolerance and really like to hold out, some have chronic pain and its a big deal for them to go without pain meds and its important to them that they use them as little as possible. others have a small tolerance and what may be a 4 on the pain scale to me could be more like a 6 or above to them. its all different per person.

John Olivers segment was more warning on addiction than anything else and how opioid use leads to addiction of other drugs (he was specifically using heroin as his example) and it is true that these medicines are highly addictive and can be considered gateway drugs and even when used as needed and in situations where its totally called for it can lead to a problem. this brings me to trouble getting prescription pain medicines.

drug seekers are out there no doubt but the general population are legitimate patients seeking real comfort. its hard in an er setting to get such comfort because thats where the drug seekers go as a last attempt. it can be hard to look at the doctor and tell thim about a pain that he cannot see but is all too real and get what you need from him or her. ive had my share of doctors send me home on tylenol when the next day my transplant doctor had me rushed back in and put on a pain management regimen because she understands whats happening with my body and that i have a real need for relief.

the pain scale can be a big problem in diagnosing real pain because people dont understand how to properly read and use it correctly, im including a link at the end of my post about the pain scale and proper usage for anyone whos interested but again keep in mind that your idea of a 7 or 8 may not be the same as someone elses. ive always had trouble with pain and ill continue to have trouble with it, not just with the feeling of pain but the availability to get medicines or relief due to addiction concerns and people who abuse the system. im just happy that for right now its controlled and im getting the care i really need and its helping me get my life back on track!!!

it all boils down to the individual patient and the need for the med vs the risk of the addiction and also the doctors ability to deal with the addiction should it form. i was weened off properly and all was well.....it takes a team and a lot of understanding.


pain scale ratings

a small hiatus. short and sweet.

since ive started to blog on here ive gotten some very inspiring messages, and i want everyone to know that while you write to me and tell me how i have changed your perspective and your views and given you a new insight into life you have done the same for me. its a strange mix of emotions to hear that my life has impacted the lives of not just the ones i love but also people all around the world. ive gotten messages from near and far and its humbling to say the least.

i always prided myself on my ability to keep a positive attitude for the most part and ive always been able to find the silver linings in my situations. i know that while things may be incredibly difficult at times that there is always a part of the situation that brings light into an otherwise dark time. whether it be the friends or family who are by my side or the fact that i am receiving some of the best medical care my country can provide for me there is always something thats good.

i feel like lately ive been losing sight of this good as my health declines more and more. i find myself sad and i feel cheated that as my illness takes over more of my body it also takes more of not only my life but the lives of the people around me who care about me. They dont mind taking care of me because they love me, im not a burden to them in any way but it is draining and worry some and i dont like to be the cause of that.

i dont want to let down you, my readers, when i begin to lose hope and so i havent been posting as much as id like to. i dont want my blog to be paragraph after paragraph of upsetting news and worry some thoughts. i dont want to let you down. dont get me wrong i still see  so much good in my life and in this world im determined to fight and live the best life i can for as long as i can but im in a little rut right now and struggling to find the strength i used to have in such abundance.

id like to take a little bit of time off from my regular blog to try a new technique i was taught today galled gratitude journaling. its where you take some time at the end of your day to reflect on it and find 3 to 5 things that you are grateful for that day. it might be hard some days but im confident that ill be able to do it and im hoping it can help me refind the things in my life that i really have going for me. I need reminders of why im fighting so hard to get new lungs and i need a small mental break. writing has always been a great outlet for me and i plan to continue soon. Thank you all for reading and please stay tubed to my facebook page and instagram listed on the right side of the page in my about me section to keep up to date if you so choose!!

ill be back babys mama needs a little break, a little eat pray love deal. stay classy.

impatiently waiting...a look into pre transplant life

i am exhausted sitting here. my eyes are barely open and the fog im my mind has become so thick that the simplest of tasks has become a chore that i struggle to get done. most of this is caused by the different pain meds and anxiety meds and antibiotics that im on right now, but some is just due to constant fatigue. my body is now working harder than ever to just be able to pull in a breath and exhale, to keep my heart pumping, to keep me alive. as we get sicker and closer to needing lungs we need to up our med game, we need more and more antibiotics and machines to help our bodies stay strong enough for this surgery that we can only hope we get the call for in time. heres a little look into my daily routine as of right now.

• 6am- set up iv antibiotic (mix the antibiotic, hang the bag, set up the tubing, flush and connect to my port) these ivs take 2 hours to complete and so im stuck wherever i hang it for a while.
• 10am- do morning breathing treatments, this takes about a half hour to 45 minutes and consists of an albuterol neb, a hypertonic saline neb, and a pulmozyme neb all while i wear my physio vest to help shake things up so i can cough it out easier. i then do a nasal rinse with water and a steroid, a nasal spray, and an inhaler.
• 11am- my breakfast (brunch technically....) with my morning pills, right now im taking 21 pills with my breakfast. 
• 1pm- time for another albuterol and vest treatment which will take a half hour to complete. and then lunch eaten with another 5 pills.
• 2pm- hang my second iv of the day and again im connected for 2 hours i usually do this one while connected to my bipap machine and take a small nap as im so exhausted by the day so far.
• 5pm- dinner time, with dinner i take 10 pills
• 10pm- this is the most annoying one, here we go, i start by setting up my feedings for overnight, i do 3 cans of tube feedings that run over 6.5 hours while i sleep, with these i take 12 more pills. i also hang my last iv for the day, but keep in mind it runs for 2 hours so i need to set an alarm for 12 to wake up so i can disconnect from it. i also do my nightly treatments, (the nasal rinse, the inhaler, the 3 nebulized meds, and the vest one more time) this all takes a good hour or so to set up and finish. i then put on my cpap mask and try to get some sleep!
• 5am- my feeding tube is done and i get up to rinse the line and disconnect before sleeping another hour when i have to take down all the old tubing and re set up my ivs for another day.

all in all i spend 12.5 hours hooked up to an iv pole. i take approx 48 pills per day, and spend about 2 hours doing nebulized treatments and chest physio, and i need to take in around 3,500-4,000 calories a day to keep my body weight up and make sure that im healthy enough for surgery. this isnt always consistent, sometimes im on more and sometimes im on less but this is an average day for me.

being on the list means that someday, hopefully soon, i can get a call for new lungs and cut out a good majority of the things on this list. the amount of pills i take will increase and it will be hard hard work but ill also get a life. theres not much time in between all the things i need to do each day to really live and thats what gets me. i like to think of myself as a free spirit but im so tethered down by all the meds and machines that i feel trapped in my own body right now. i struggle with my family because neither one of us really knows how the other is feeling, and it can be hard.

im very impatiently waiting on my call to come and bring me a new life, and im hoping with everything i have that these lungs work for me and i have many more years with them!!! 

the invaluble friend.

today im thinking about friendships, specifically friends of or in the chronic illness community. friends are different when your chronically ill, they need to be a certain kimd of person. not that there's one type of person who's better than another, just in certain situations one needs understanding, care, and patience and these are traits that can be hard to find. 

i unfortunately see many posts on my news feed or in different groups im a part of where people feel left out of life because they cant always keep up. this can be heart breaking, not just the feeling of being left out of an activity but because its due to something so far out of your control. i myself have had many experiences with this feeling and its not one i wish on anybody. I think the idea of being sick for most people is a few days on the couch with nyquil and soup, but they can push themselves when needed. things get complicated when your every day is hard and when your sick its almost intolerable. for example, in my own life i like to go to dinner and movies and things like that, but i have a hard time doing these things later at night because im so tired, the work that my body needs to do to just get through the daytime is exhausting and so i either have to miss out on plans, or i go but i cant really be the energetic person my friends knew me as before. (ive now fallen asleep at multiple outings and cubs games.....). Theres also the times when i know i should stay home but my FOMO gets the best of me, i go anyways, and end up worse off. 

people within these communities are (almost) always there for you and supportive of this because they understand wholeheartedly what being in that position feels like. its a blessing and a curse to have so many people understand you and your situation but not be able to see them or hang out with them and be around people who really get your situation. the outpouring of support at times from these communities can be overwhelming. the love from complete strangers is mind blowing and very humbling. Before i joined any of these groups i felt very alone in my diesease and my situation and finding out that there were so many people walking in my shoes was something ill never take for granted. the people ive met online have become life long friends. 

there are exceptions to this situations where one might feel left out. there are people out there who see you for you and not your illness. i have a best friend Katie who would take a sleepover at the hospital with me over a night out. painting our nails and watching our favorite shows and having lattes in the morning can make a night in the hospital feel like a normal night at home. the fact that shes totally fine with hanging out here and missing something else going on elsewhere that might be way more fun is not something that is lost on me. i have Jake, a man who i used to date and while things didnt work out due to our lives moving in different directions he has continued to be my absolute rock, doing everything and anything to keep my healthy and happy. hes always down for a movie night on the couch in lou of a few drinks at the bar and a home cooked dinner when going out just isnt in me. hes one who will always invite me out and make me feel included in events even though he knows theres a pretty good possibility that well both end up spending the night sitting down and not really in the action. i have a frind Nick. a man who ive known for years adn years who never hesitates to bring by food when im sick, cheer me up with his goofy animals he always brings me, and never once complained about pushing me in a wheelchair all over comic-con for an entire day just so i could meet the weasely twins hahaha. he has accepted every part of me and my illness the good and the bad since day one and to this day i can say hes definitely someone i have total trust in to always be there for me. hes never wavered. i have my little sisters, my best friends in the entire world, and not just because theyre family but because i can feel how much they love me every time i see them (which is much to far and in between). i have my older sister who never ceases to mother hen my ass when i need it, cook a meal when im sick, help keep things clean, and help me manage my appointments and meds when my brain fog kicks in. shes always inviting me to dinner out with friends and did i mention shes an absolute blast to hang out with?? i can always count on laughing till i cry just about anytime i hang out with her!!! my point is that there are good people out there. the invalubles. the ones who make this life worth it. 

on the flip side yes, theres the partiers. the ones who stay out too late and take shots like they contain the key to immortality and if you cant keep up the invites out become far and few between. it happens but dont dwell on it. see it as an oppertunity. the stress that it caused you and your health yo try to keep up with these people was not worth it. nobody is worth your life you are far too important for that. in life people come and go, its inevitable. find peace with the support and love that you do have and hold on to it dearly. focus on the good parts of life. focus on the people who love you and the people who are always reaching out to you. those are the ones that matter in the end. (but by all means if the party pants fit for the night put those suckers on and wear this shit out of them, we all deserve a night out! even if its to remind us why we never go for nights out hahaha)

try not to get down on the days in the hospital with no visitors, even though thats a hard one to swallow, dont dwell on that friends who always seems to be too busy for you, shes not too busy for you shes just busy with life i almost guarentee it. please try to not jump to conclusions and stress yourself out over your social life, it will pick up and it will die down you need to find the medium. this is somethingi struggle with as well im not just preaching about it for no reason i promise!!! 

your going to miss events, birthdays, holidays, anniversaries and weddings. your going to miss a lot. its your life, thats how it goes, its not fair in anyway, but thats life, its never fair you just need to find those loopholes that make it all worth it in the end. remember its not whats on our table its whos around it. mine is filled with love, once i stopped to notice.

im not #lit after all : college life for a night

the hype about college was always real, i think the majority of students graduating high school are thrilled at the idea of being away, going to school, meeting new people and experiencing the college life, whether it be a small school or a big 10 campus its a new chapter that so many look forward to. Movies and television seem to play up the crazy party side of school the most and it always seemed pretty over the top to me. dont get me wrong, at 18-21 i could hang with the best of them, i was always out (who am i kidding i was a beast!) till probably about a year ago, and all of a sudden i became a senior citizen. this past weekend however i went to family weekend at ISU to spend some time with the fam and hang with my little sisters. guys its official : i cant hang.

let me paint you a picture of what im sure was a normal night out for everyone, but my crotchety hag of a self saw things a bit differently!!

lets start around 8. my life here at home 8pm means making a snack, putting on some tv and chilling with my dog on the sofa before i go to bed for Hannah and her friends 8pm is hanging out and getting ready for the pregame. i had some coffee and did my best to make my face and hair look nice enough that people would think i was a part of the group and not a bridge troll that followed some kids to the bar. bring it to about 930/10. people start coming over an music is loud, but i dont know a single thing theyre playing, these kids love them some biebs though! (my spice girls got turned off pretty quick, im not sure anyone actually knew what it was but me) and my tired was in full force!! i mean the poloroid was a pretty accurate description of my feelings at the time...again, self admittedly crotchety here.

heres where it got me though : "is everyone ready? were taking the jungle bus downtown"

jungle bus. why? i dont know and i dont know what i expected at the moment but it was not what pulled up. this was an old school bus that shuttled kids to downtown for a few bucks, this thing was decorated like a frat house on steroids. the woman driving was insane and it was the closest ill ever get to riding on the Knight Bus, except there were dogs on it. poodles. any turn couldnt brought a pup to the face it was an honest concern of mine.

so we get there in one piece and the second i stepped off the bus i knew i was out of my element. music could be heard from the streets and lines were forming, no quieter sit down pub atmosphere going on here i was gonna have to put on my big girl panties and suck it the hell up, the only issue was that they didnt wanna let me into the bar because my baby face doesnt pass for 21 let alone almost 26 hahah, my little sister had to convince them i was of age. at that point a drink was pretty welcome, and a few more after that :)

it ended up being a really good night, being able to go out with my little sister was never something i thought id get the chance to do whether it be from family friction or i just wouldnt be around for it im glad i got the oppertunity. it was also kind of a look into the life down a road i didnt take. i left high school to work and i never experienced any part of the college scene so it was cool to be there, if i could do it all over again im not sure if id go somewhere like isu but for ONE night, it was good.

in a few weeks ill be headed to milwaukee for my youngest sisters family weekend, guess i better put those big girl pants in the wash and maybe grab an extra coffee that day!

"the bubble effect"

i like to think of myself as a very carefree spirit, i know what i like and what i dont and thinking my decisions through was never really a strong suit of mine. spontaneous out of the blue was always more my stlye. trips for the weekend or a last minute concert ticket made my life exciting, and i loved the feeling of impulsiveness. i still do, with my cystic fibrosis worsening ive had to make many changes including the roll with the waves type of life i fell so in love with. i need to plan more carefully to make sure my medications and machines will be with me, i need to plan my days around medicine schedules and iv antibiotics, tickets and events come and go while i sit in hospital rooms wishing to be out in the world where i belong. now on top of that, lets bring the bubble into the picture.

The bubble has always been my biggest enemy while going through this transplant process. It never really used to be there, but seemed to grow around me more and more until one day i felt like it had completely encircled me, the air inside was stuffy and suffocating and the film between me and the rest of the world was constant. the more i poked and prodded to get out the more exhausted i became, the film streatched around me never breaking, but keeping me isolated and trapping the frustrations and anger i had inside with me.

the idea of being in a bubble has been an image many chronically ill can relate to, as our lives are often pulled in different directions due to said illness and the feeling of entrapment is almost eminent. the people who love us want the best for us and we cannot fault them for it, its a part of our lives that we should be so grateful for yet at times the frustration of it all boils over and we begin to resent the protectiveness. my main bubble blower is my sister. shes my rock, shes my one true solid support who would do anything and everything to keep me safe and healthy not just for transplant but in life in general. she is by far my favorite person on this planet which is why it makes it so difficult when i feel the anxiety rise up and i want to snap her perfect neck for trying so hard to keep me safe.


it may be a small thing, like my childish amount of giant fluffy stuffed animals that no near-26 year old should have in her bedroom but i am so in love with and refuse to give up, (a 4 foot giraffe?? lets be honest nobody is going to give that sucker up!) its one of my best friends goldfish that she left with me before going to zambia to work for the peace corps that i will not ever give up on or get rid of. morning glory is now my family until she returns. these things that collect dust or culture bacterias that can be harmful to me no doubt, but in the end are still things of mine that i love and i dont want to part with  these things. its another part of my life, be it material, and  minor, they are still a part of my life that i feel cf is taking away from me. these things are the wand dipping into the tub of soap, preparing to expand around me, they are small but they are restrictions on my life and decisions that i dont feel others should make for me. i want to be in control of what i have in my surroundings.

 then there are bigger things, more understandable things. take driving, we share a car right now and i had an incident in which i drove up on a curb a few days ago. i had a strange memory lapse and it was an isolated incident. i feel fine and its never happened before yet because its technically her car and since she doesnt want me driving i cant do much about it. this is when i feel the bubble begin to encase me and with it my freedom are vacuumed out and i am stuck. i am in my mid 20s and feeling like a child, told what to do when to do it and i have rules.

its difficult for me to take orders in a way from someone my own age, im an adult and i feel i should be making my own decisions and its very frustrating to not be able to do that. at the same time i recognize the love my sister has for me and her though process is not to treat me like a child, she doesnt want to control my life and tell me what to do but she wants me to be safe. and i love her for that. our problem is communication over these issues. were both stubborn and heard headed and can find it difficult to see eye to eye on many topics.

i can see the frustration in her face when i fight her on subjects like this, because in the end i know they are trivial. The grand scheme is that i am going though a very difficult process, one that i was well aware would take many freedoms from me for a time, but slowly i would gain them all back plus more. it will be a diffucult road to come to an understanding, post transplant with the steroids on high will be more than interesting and im sure days will come when we absolutely hate each other. but if she can take a minute to try to put herself in my position and think about how her life would be changed and i can take a minute to put myself where shes at and understand that whats best for me isnt always what i want or whats ideal for me i think we can work through this.

i never imagines the stress levels would be this high, but im happy knowing we can snap at a moments notice but come back together just as quick.

my bubble isnt going anywhere, it will get worse, as i get sicker her worry will heighten. shell have all the best intentions in the world and they will drive me nuts, ill hate her at times and shell hate me right back. fights will break out and oh what fun a roid rage fight with me can be!! however ill always be thankful that when my head is screwed on a little backwards shes there to stand her ground and keep me in check.

ill still fight tooth and nail for as much freedom as i can possibly get, it just wouldnt be me if i didnt. i will not lose myself to these setbacks.

you got me....im sick and im lazy

The word lazy has always been a big deal in communities of chronic and terminal illness. to these communities its a word thrown around by people who have no understanding of the illnesses that we deal with on a daily basis. Im not just speaking about those effected by cystic fibrosis here, but people suffering from any chronic or terminal illness. theres a generalization that were young, or we look healthy, so we must be just fine. That we dont work or go to school because were simply using our diagnosis to get out of being a contributing member of society and we just want to lounge around day to day watching television and using the governments money to buy our way through life.

we fight the term lazy and make grand statuses and announcements about all the hard work we do to just make it from one day to the next, we feel the need to defend ourselves from the misunderstandings and the negative comments aimed our way, from people who two minutes prior to shooting us down posted some meme about how naps and pizza are life. 

well here it goes. im sick, i dont work and i get aid from the government and sometimes, i am extremely lazy. 

let the backlash begin. 

im saying this because its true, sick or not sick we all think the napping netflixing and loving tacos memes are all about us. people can work a 40 hour week and on saturday and sunday do you think theyre the epitomy of community service and all things good?? no. they hang out with friends, catch up on that show they love, toss a few back and relax. yet we feel the need to constantly be reminding everyone how hard we work every single day and we are never ever lazy!!! 

stop. just stop. 

you dont need to prove anything to anyone. your allowed to wake up one day feeling perfectly fine, your illness isnt making you feel ill at all and all you want to do is binge the whole season of "stranger things"(no seriously you should its a great show) and eat your way through any and all things delicious in your house and you should, you should do it and you should not have to explain one goddamn word of it to anybody for any reason. 

the need to explain what we do and why we do it has in a way taken over some of our lives. We feel guilty or we feel like were worthless for not being able to contribute, the struggle is too real sometimes. i hope you know you matter, to the people who love you you matter. to people who know you you matter. to people online in these communities you matter. and all of them know your doing the very best that you can. let go of the need for the approval of some idiot who thinks you can do better (keep in mind they cant be too happy themselves if they need to tear you down to make themselves feel better....) and just know your doing the best you can. and while you dont go to a traditional job you work your butt off everyday. so sometimes, yeah, you deserve to eat a tube of pringles with a stuffed crust pizza on the side and not move for a stupid amount of time. you earned it.

 

Health/Life update!!

i apologize for the lack in posts, however (pardon my language) my life has been a clusterfuck this past month or so.

Ive now been on ivs 6 of the last 7 weeks but am hopefully done on the 16th (4 more days!!!) and can be free of needles, crazy itchy port sites, and antibiotics that are due at the worst times! during this time my meds have been changed 3 times and i cant say im happy with any of them, one made me extremely feverish, sick, and made me feel pins and needles throughout my body for about 5 or so days till i finally couldnt take it anymore and was switched over to a med that made me so dizzy i couldnt walk for a week and now my face in numb and i cant eat or even keep my tube feeds down....win. *rolls eyes*

luckily im beginning to start climbing the health ladder again but im not quite out of the woods. I have appointments with a psychiatrist and a psychologist on monday to help conrol my stress, anxiety, and depression that seems to have gotten worse ten fold lately, then an ENT appointment on thursday to make sure the sinus infection i seem to have had for about 89345093845342 years is under control, and then the cherry on top : transplant clinic on friday. this is a big appointment because after all the ivs if my lung function has continued to drop, reactivation on the list might be necessery. im holding out as long as possible but im not sure how much longer that will be.

the most upsetting part is that this all came out of nowhere, a post not long ago i was talking about how much i was loving hiking and being off of oxygen, i was making waves in my workouts and i was stronger than i ever have been. this is a prime example of how one small bug can change your health overnight. It can come out of nowhere and bite you right in the ass and next thing you know your hooked up to ivs, feeding tubes, oxygen, with nebs going while you watch the x-files in bed for 10 hours straight only getting up to wobble your dizzy ass to the bathroom and back.

its been a ride. somehow through all of this shenanigans i also managed to finish summer glasses and im proudly just a few tests away from finally getting my GED!! i plan to finish these last tests on sunday and then ill be all set to start school to become a pharmacy technician!! i only missed 2 classes due to being in the hospital but caught right back up and through hard work and some help from my friends im well on my way! Relisting or not i plan to start my schooling with online classes and a few on campus so that when the time comes for my shiny new lungs i have something to do with them!! (work, become a baller, buy my dog rubies, and take him on a trip around the world. ya know. stuff like that)

ive also just wrapped up a project i did with PAWS Chicago to help bring awareness to rescue pups and to cf all in one shot so stay tuned for that ill be posting it as soon as its done!! Im also working on a few more posts about some topics near and dear to my heart so expect a few of those soon as well!!! thats about it for now, my health update and my super smart self finally getting my book learnin on!! thanks for reading as always, and feel free to check out my facebook page and my instagram to keep up on more current and frequent things, both of which are listed to the right under the about me and stunning pic (im so humble!)

to the doctors who know it all and the patients who live it

After being admitted on Monday morning ive had the same issues i always have when im here. orders for things i dont need or use, medication mix ups, and the worst of the worst-bad allergy management. I was laying awake last night (half clawing my dressing off and half being super careful not to cause its the only one i have that i can semi tolerate) i started to think about why a certain person on my tx team isnt really doing much to help get me the relief that i need and i came up with this.

I like to use a comparison of students studying say, spanish, in high school or even college. the doctors and nurses are like those students. studying formal language and dos and donts of a culture they've never seen. they watch films of life in Spain that were made in 1992 with horrible patterned t-shirts and over excited kids giving thumbs up all the time. worksheets and text books tell them everything they need to know and that information is gold to them. then there's us, the patients. we're the students who take a summer abroad in Spain. we personally feel the weather, the energy of the country, the feel of local life. we pick up the day to day language and lingo and learn expressions. we live and breathe it and we place ourselves in the middle of it all and that type pf personal experience is more valuable than anything a classroom could ever teach.

tie this in to life with a chronic illness. my doctors have spent years and years studying the medical field and cystic fibrosis, they know a lot, I give them credit for that, but they've never been immersed in the day to day c.f. life. I'm the student abroad, I've lived this life since day 1 on this earth. I know the books and I know the definitions of my disease but most of my knowledge comes from experience. I know my body inside and out. I know what to expect from every medicine I take, which ones will give me what side effects and which ones I can't tolerate. I know when my body needs iv's and I know my allergies and I know what to do to fix them. I'm not a textbook I'm an individual with individual needs. all I need is an open mind to hear me out.

it's rare to find a doctor who also "studied abroad" and understands that people living with illness on a daily basis, not just c.f. but any chronic illness, probably knows just as much if not more than them about the disease in question. we know what we need. what our bodies need to get better. we know our highs and lows. 

i believe a big part of the issue is that doctors tend to get big heads. they have a professional degree so when someone comes walking in and telling them what needs to be done its almost a bit of an insult in way. theres a power struggle between the patients and the doctors over who is right and who is more qualified to make decisions and unfortunately the doctors win every time, because of said degrees. (which all spoonies should totally have cause were pretty damn qualified to know what is and isnt good for us haha)

my specific reason for this is due to over a year of pure frustration and pain from allergies to both adhesives and cleaning agents. by the end of any 2 week course of antibiotics my chest is red. covered in blisters and bleeding, looking almost like the skin of a new burn victim. the allergic reactions i get are slowly getting more intense the more i need ivs. over the course of 1 year we've established that a dose of benedryl doesn't cut it. my skin falls off to the point that I'm left with scars. my arms and chest covered in little dots from where my skin has burned away under the dressing meant to protect me. hydroxyzine helps but still my chest is still torn up. iv benedryl is the only time I've felt relief from the constant itching and burning and it's frustrating that my nurse practitioner refuses it to me every time, because she is the student in class. her textbook tells her that it's a don't. however the one experiencing this annoyance first hand is in a constant state of discomfort. i can understand that her books tell her it has addictive properties, and it makes sense to be cautious. i have a fear of addiction since ive seen how it ruins lives and the lives of loved ones around you through first hand experience. i am slightly confused why with any pain they feed me morphine and norco like its water yet this one is so far out of reach. (id take pain over itch any day, pain i can handle. a persistant throb is more tolerable than intense buringin that keeps me awake till all hours.)

I know many of my spoonie family has gone through similar situations. they feel ignored or uncared for, they are labeled drug seekers when they go into the ER. their symptoms are not taken seriously. it's an issue that people in the medical field need to be aware of. 

there are also always 2 sides to a story and on one hand i understand the uncertanty (especially in an er setting) where drug seekers do tend to be an issue, however if your patient tells you specific issues, or tells you they have a condition you should either get someone who knows more about it or do a little info searching on your own. we need to start being treated like people who matter, whos symptoms are very real and despite the risks sometimes we just need to take that chance for relief.

I cannot tolerate these allergies. something needs to be done if I'm to finish my courses of treatment. i need a team that is proactive. I need doctors who understand that each case is different. I need a team to look at me and my personal needs and treat them personally. c.f. never had 2 cases that are the same, and so we shouldn't be cared for the same. Theres no reason i should have to put up a fight everytime i need something. 

classes teach you a lot. books are filled with info. but talking to a person and understanding what they tell you is just as valuble. gold, some may say. sick of the tape and the wires and the tubing, hopefully breaking out soon and my next post can be about something amazing haha, ill hang in there!!

I worry. i hope.

I wake up, my lungs hurt.
i worry.
sleep till 130, wake up again. gathering my meds i cough too much.
I worry.
my insurance isn't covering my home o2. I'm trying to fix it fast but I can't afford to breathe.
I worry.
my homework is really hard amd I have class and must stay on schedule to start I'm the fall.
I worry.
my mother has given up on being our mom years ago, yet it's somehow me and my sisters reaponsibility to fix her problems and life now.
I worry.
i dont get anything in class and I'm scared to hold the class up.
I worry.
I can't walk to my car, my lungs are burning like they're on fire and I can't inhale.
I worry.
I need gas but the $2 I'm my pocket won't do much good.
I worry.

I'm home and the stresses from the day, the day before, the day before that....it all adds up. all the worry. all the stress. it's piled on to me and I feel the small panicky feeling sneaking up. the one id get as a child stuck in my snowsuit slowly getting hotter amd hotter while I franticly put on my boots and gloves so I could lay in the snow, so i could get some relief from feeling like a small rodent trapped in the walls pf a burning house. I'm restless, im uncomfortable despite the mountains of pillows and warm blankets I'm under, with the cool air from the a.c. balancing the temp in my room perfectly.

anxiety sets in full force, I know it's late but I text a a friend, more than that, my rock really. the only person who knows how to handle these situations (which started last year during my 3 month club med stay). he doesn't judge. he says everything I need to hear and makes sure I'm okay before going to sleep.

my life, at this moment, is feeling out of grasp. the more I feel better the more responsibility I take on and I'm turn the more stress builds up in my life. clogging my head and running my thoughts a mile a minute. this doesn't help my health. stress is a serious medical problem. my anxiety and my depression are overwhelming. my Xanax use barely takes the edge off.

because I worry. and i dont know how to stop. this ia another obstacle I need to climb over to continue my journey to a better life. tonight however it's going to consume me and my thoughts. I will worry.

but then I will sleep, I'll wake up to a puppy, I'll make a big breakfast, I'll study hard and do my best to get the ball rolling on my insurance issues. I'll do what I can to eliminate the worry. I'll hope it works.

I'll hope.

ill hope.

ill hope.

ill hope.

ill hope.

ill hope.

and soon, the stress and the worry will calm. the anxiety will lessen. my mood wont flip on me out of the blue. ill be back to watching the sky catch fire over the lake that lines my beloved city. Ill be walking my dog down a forest path blissfully unaware of the world around me focusing only on the breath my lungs are allowing me to breathe. 

i wont worry.

just hope.

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.

CF Life is Hard, But Not Just for the Patients, Welcome to the Support Role.

"I didnt mind waiting, sleeping in a chair isnt that bad, its watching you in that much pain that hurt me the most." - Shawn after spending 8 hours with me in the ER and then another 45 mins in my room once i was admitted and settled in.

Saturday night i felt good. Despite my port not working i had gotten a midline placed so i could still stay at home and not miss any of my plans or classes and i was very grateful for my medical team for giving me that option.

A little past 1am while out celebrating my beautiful smart perfect little sister, Hannah, my arm, which was already sore since placement, was in a great deal of pain and very obviously swollen and red. At that point i knew something was very wrong but i did my dose of ivs and headed into the er, driven by my friend Shawn who has been so amazing since we reconnected (taking me to almost every appointment i have, holding my hand when im nervous, scared, and in pain, and always making time to stay with me in the hospital so im not alone). Once there we sat waiting for 7 hours total until they decided i needed the line out and they were gonna put in a peripheral iv to give me my antibiotics and work on fixing the damage to my arm and getting me a new port.

It was very painful and if i fully extend it i get shooting pains all down the arm and my hand goes numb and i get pins and needles, which leads the team to believe ive gotten severe nerve damage from the meds going into the midline and instead of staying in my vein, leaking into the muscle in my arm. So Sunday morning i started morphine to control it, and was admitted.

Next step was to get my port replaced as that seems to be the only option especially through transplant ill need lots of ivs and blood draws. They bumped me in to surgery in the IR on Tuesday (being a holiday weekend made the wait a little longer) and while under twilight sedation i got my shiny new port.
7 hours
The site is still painful and since ive essentially lost function in my right arm, having a new port on the left side doesnt help me get even the smallest tasks done. So heres my tie in.

Shawn, Nick, Katlin, Jake, Sarah, and countless online friends have stepped up their game. the second they knew what i was going through my phone blew up with messages and texts and my facebook was filled with well wishes and prayers that i heal soon and the pain is only short term. These people are all working their butts off to help me continue as normal of a life as possible. I tend to think at times that because its happening to me they cant possibly understand, and perhaps they dont. What they do instead is ask questions, they learn how im feeling and they take the time to listen to my doctors and nurses and do what they can whenever they can to help me when im in need.

Bringing food and coffee to the hospital, helping me run errands and pick up prescriptions,even helping me to clean up and take care of my dog is showing support and love unlike any other. I have a huge support system who goes through CF just as much as i do. They may be able to breathe but the hurt and stress that comes with watching me struggle so hard, the joy they feel from seeing me succeed, and the pain they feel when the tears begin to fall down my cheeks is all to real for them,

CF is not always personal, it takes a village. Im forever thankful for mine and i cant imagine the feelings some people go through who dont have that sort of support and love in their lives.

There is a small flip side however. There will always be friends who dont understand how much effort i put into my day to day life and will still get angry if i dont see them or talk to them much and i suppose i understand that too. My life is a never ending green light of go go go between plans workouts school and everything in between. Ive recently cut out some very negative presences in my life and ive noticed my stress begin to ease.

The ones left sleeping in hospital chairs holding my hand for 7 hours are truly selfless, the ones who wake up and leave on a moments notice to get me to an appointment or a school seminar because i cant drive, the ones who keep the house clean as can be and dust free for my fragile lungs, the ones who spend countless hours checking in on me and making sure im doing as good as can be and are always there with an offer to do anything at all the make my life easier. Its people who know i need help and send me goodie bags with anything they can think of to make me as comfortable and happy as possible.

Friends and family also aside theres my nurses. Nurses who go out of their way to page doctors over and over to get what you need, the nurses who literally tuck you in at night, the nurses who take their lunch break to watch a little bit of tv with you when your feeling lonely. They crack a joke just to see you smile for even a second and are always on your side.

Support systems are the glue that hold me together. I could never do this on my own. I could never go to a party downtown and end up in severe pain 3 hours later all alone. I encourage you to reflect on your support systems. note the people who are always there for you. The ones who whole heartedly understand, and try their best to if they dont. Surround yourself with positivity and your life, while maybe shorter than most, will also be more fulfilling.

CF caused me hell these past few days but i dont think im the hero. They are. They always will be. The ones who have my back through thick and thin and the ones who love me unconditionally. Thanks to them i was out of the hospital and back in class (dont worry i got a ride, there was no Norco driving for me!!!) in no time. Ive said it before and ill say it again, nothing in this world is going to stop be from achieving my goals!!


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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.