12/13/2016

Dear everyone,

I am devastated to tell you that my sister Rachel passed away early this morning in her sleep.

As many of her friends will know, Rachel struggled recently to find comfort and relaxation through her daily pains and worries. However, she spent her last days at home and enjoyed preparing for the holidays. She passed in her sleep while snuggling with Nighthawk.

Rachel loved life. She loved especially her niece and nephew, her family and friends. She left us too soon, and I know that many of you will feel the way I feel- shock and great sadness that future events will be less lively and wonderful without her there. Already, truly, I feel a deep loss in that so much of my identity consisted of jokes, imitations, and fun things that were only shared with her. I am thankful for the time I got to spend with her and thankful that she had such great family and friends.

We will have a memorial service on the evening of December 30^th, place and time to be announced. There will be a Google Drive where photos can be uploaded and displayed at the event. The link will be added to this post shortly, so please check back here in the next couple days. 

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!!! 

Did you wake up safe?

*from 11/20/16*
This morning i woke up at 945 in a hospital bed. not just any hospital bed but one at one of the best transplant and cystic fibrosis centers in the country. its cushy. the walls arent stark white but a calming tan with a pretty leaf design, curtains block out the light so i could sleep in and i was warm, safe, i had the medicines i needed and could order my breakfast from my cell phone as soon as my medicines were given to me and my respiratory treatments were finished. i was woken up gently, with a hand on my leg and a care tech, ice water in hand, saying my name softly. ive been doing this for 5 days and tomorrow i go home to my house. my warm bed. my dog and my family. home cooked meals and again, every medicine that i need to keep me as healthy as possible.

this is an easy stay aside from the moments of anxiety which are, in all honestly, small potatoes.

on the other side of the world a child woke up not to the sound of a tech bringing fresh water gently waking them but to the crash of a bomb. they choked on chlorine gas instead of receiving medical treatment they desperately needed and if that hadnt have killed them then odds are starvation, or another bomb, would have.

today i participated in a twitter storm to bring awareness to the trouble in Syria and east Aleppo and i have not stopped thinking about it all day. my stays here in the hospital used to be hard on me, i hated my illness and the medical treatment i received was pain and discomfort i didnt appreciate. Aleppo's last hospital has been bombed and there are people, children, not receiving the simplest of care they need none the less the cushy western medicine i have on a slow drip and pangs of guilt when i push my call light for Tylenol and xanax for my simple pains and problems hit me like bullets.

the images ive shared on my twitter today will stick with me forever. the images ive seen on the stories in the group im a part of on facebook will haunt me. The stories of the people suffering continents away will stick with me forever.

I wasnt super involved in this movement and to be perfectly honest i had no idea what was happening there until i read some posts by someone who about a year ago became a good friend, mentor, and the ultimate role model not just for me but for women everywhere. shes started the hash tag #StandWithAleppo (which i encourage you all to use, share, all the above) and look into the crisis going on over seas.

We have bombings here, we have murder, and we have senseless shootings and we mourn them as we should, We worry about our rights with this upcoming administration coming into office, women's rights, disabled rights, gun laws, the effects on the minority population and the fear mongering spreading hate throughout our country so we have plenty to fear on American turf. im not saying that America is safe and sound and we have nothing to worry about, but did you wake up and wonder if today was the day you would starve to death? Did you look at your emaciated child and wish they had food in their belly's? did you feel the sadness that your child wouldnt get an education or medical attention that day?

The bombings overseas have left many dead and many scarred. I dont usually use my blog to post about causes such as this but then again ive been a bit blinded by the comforts i have around me and ignorant to the plight of others. ive only recently come to really invest myself in my countries political system, get involved in the rights of not only myself as a disabled woman but the rights of others who dont fall in the 1% that seems to gain the most and has the least to fear. Ive just recently been exposed to the struggles and strengths of people in much worse situations than myself and i cannot stand for these injustices.

I urge you to get involved. I urge you to research and i urge you to check your privileges a little tonight. i have this platform that i dont know reaches many but if i reach even a few, if i make the tiniest little difference than ive suceeded. I wont flood my blog with humanitarian posts and politics (a lot, although like i said this new administration is going to bring challenges and big changes and many of them will effect me directly) but i do plan on becoming more involved. i plan on fighting the things i dont agree on and fighting for the rights of myself, my fellow Americans, and the rights of men women and children in places that are not as fortunate to have the petty problems we have here.

tomorrow i go home. it breaks my heart that so many dont have a home to go to, a hospital to receive care in, a school to learn in, or food to eat. words like rations, genocide, refugees- these are not words we should be hearing. use your voice and help make a change.

im including links and information on the bottom of this post for those who want to get involved. please consider taking action.


passing the caesar bill
Syrian American Medical Society
NYT crisis in Syria and Aleppo
Tweet Your Congress

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.