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.

Were tired. Were exhausted. Were sick. We are NOT lazy.

Im tired. Im so tired i feel like my limbs weigh 30 lbs each. I feel as though the lids of my eyes are made of lead, and all i can do is fight to keep them open for a little longer. I inhale coffee and energy drinks despite the bad effects to be able to get a little bit done throughout my day. Im labeled as lazy. Sometimes the jokes are thrown around without thought and its hard to fault a person for making a genuine mistake, but it hurts. Real, physical, and emotional exhaustion takes over my body on a daily basis and heres what you need to know about it.

1) im not a lazy person. my bedroom and living room tend to reflect that of a poorly organized college student with clothing flung about, jewelry on random tables and nail polish bottles on every surface. The blankets are a permanent fixture of my couch for quick naps and times when i need to lay down and they almost never get put away. This sounds lazy, i could clean. i absolutely could im not saying i dont have it in me but depending on my day i may not have the energy for it. "the spoon theory" is a great example of how my body works on a daily basis and i urge you to check it out. It basically states that on any given day im allotted a certain amount of spoons, each equal to a task or chore or anything i might need to do that day and when they run out, so do i. i can no longer get the things done that i need to. Hense the clothing piles and the dissaray. sometimes its just not in the spoons.

2) when i make plans i make small plans not because i dont like you, not because i dont wanna spend all night living it up and going out but because my body literally cannot handle it. By 8pm i am usually spent (yes, despite the nap i took a few hours ago) and i need to go home and lay down. My heart and my lungs pump at such a high rate to keep my body moving it takes all of my energy to do even small tasks and outings. I need to wear my oxygen and recharge and let my body catch up to where im at. Breathing treatments need to be done to open my airways so i can get the proper amount of oxygen flowing through my system. My social life is barely there and believe me in not happy about it either. Im quite depressed to be honest thinking back on my days and nights downtown living like a 20-something should be.

3) i need to cancel plans. all the time. i make them hoping that ill have some energy to go out but i dont. i make plans to go to your house or go to dinner but i can barely muster taking a shower at times.This type of pure and utter exhaustion is overwhelming and hard to control, a cup of coffee will not solve it but i promise you that the second i feel well again i will raincheck those plans and be there for you!!!

4) most importantly, understand. try your best to understand where im coming from. My illness takes a toll on me that i never thought would be possible. i never imagined by body would need to work this hard to simply stay just enough afloat that i dont drown. I never imagined that one doctors appointment at 9am would mean spending the next few hours sleeping and hoping that when i wake up i can just get this one load of laundry done. I myself never saw a future on oxygen as common as it is. i never saw my friends leave simply because i can never go out, or when i do its mainly chair dancing and just talking because anything else is simply too tiring. Please be patient with us, its hard to have friends and family who struggle and to watch them go though that but its harder to be the one whos struggling knowing how frustrated the people around you are getting.

Lately ive had a lot of trouble with this topic. ive been so tired to the point ive lost entire days, my family tries their best to understand but sometimes the eye rolls and jokes come out and its painful to know what they think of me. It hurts to know they think i lay here for no reason while my clothes pile up and its hard to hear my niece jokes on how messy i am or how she constantly brings up the times i sleep till late in the day. i want so desperately to have a working body that doesnt need the rest that this one does. It crushes me at times, I can try harder, but i also know my limits. I know when i need a break.