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

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.

My Illness is Invisible, But I am Not.

This morning i woke up and took the puppy out like every other morning, made a cup of tea to drink while i do my treatments, and got all my meds ready. Suddenly i had a coughing fit and when it was over the tissue i grabbed was filled with bright red blood. Yet i dont panic. I throw it away and i finish strapping on my vest and filling my nebulizer cup with the vial of albuterol i pulled out along with all my other meds and start my treatments with a few extra tissues on hand and an old t shirt so i dont stain my pj tank if i cough more up suddenly. This is my CF life. This is something i dont worry about unless it gets worse. This is just something ill mention at my next appointment, but its no big deal. This is what nobody sees. People look at me and see a fairly normal girl, sure i have oxygen on, but i dont look sick. My face is full and i laugh and smile and run errands and go out with my friends. What they cant see is how hard my heart is working to keep my lungs moving. The strain makes my normal heart rate in the 100s at times. They cant see the build up of secretions making me work for every breath i take. Thick sticky mucus that clogs my airways and chokes me on a daily basis. Strangers on the street dont know that ill spend hours today inhaling medicines and working out my lungs just to stay stable at a measely 28% lung function, they dont know that by the end of the day ill have taken close to 30 pills to maintain my weight, mental stability, vitamin levels, digestion, control pain, and fix various other things that my body cant maintain properly on its own. Yet youd never know. This is where the term invisible illness comes from, There are 30,000 other people with CF in this country going through this similar routine and youd never guess. The things we go through seem impossible to most, yet this is our life. This is normal. Lately ive been really aware of the lack of awareness to invisible illnesses, not just Cystic Fibrosis, but so many others as well. Ive gained friends with struggles youd never know about yet they're barely hanging on. If you take anything away from reading this today its just be aware. Be aware of everyone around you. When you see a young girl park in the handicapped spot your not a hero when you tell her she should be ashamed to take that spot from someone who needs it because she probably needs it more than you know. When you see a man coughing dont assume hes a bag of germs and give him dirty looks his lungs may be doing the best they can. Next time you make fun of someone for being skin and bones because "real women have curves" keep in mind all the women who struggle day in and day out to eat as much as they can but their bodies refuse to take the nutrition they consume. Be aware that these struggles exist and just cause you cant see them doesnt make them non existent. My disease is very real and i feel it every day.