Miss Me?? Im back, im off Orkambi, and im fighting harder than ever for the life i deserve!!!

if your reading this youve stuck around through my more than sort break from this blog, which was much needed for various reasons, so thank you!!! I had a lot of hardships in the medical sense and i was doing pretty poorly for a little while and really needed to take my time to focus on my personal well being and health, and it payed off!! ( i was still keeping up with writing for CBS2 Chicago so hopefully you caught all those posts!)

I also struggled with finding my topics. I know there is a lot to write about, as lots has happened this past month, however i wanted to try to stay away from too much of the medical mumble jumble and if youve spent any time in a hospital you know that maybe to you the addition of rainbow jello on the menu instead of just orange or cherry is a huge deal, but maybe other people dont really care if your food now matches your hair. Even though it does. and its so flipping awesome your really missing out on that one!!!

anyways....

So my crazy month of medical downfall began as i started taking Orkmbi, supposedly a miracle drug and for some it really was. It helped lower hospital stays, raised lung function, did wonders for weight gain and general breathing!! It was truly amazing and i was approved for it! It took so long to get approved and finally get it delivered but i was ready for the change. I had been feeling great, doing small workouts everyday and working my body and my lungs to the max to try to get to a place where id be considered healthy enough to take a hold from being actively listed for new lungs. (a topic ive gone into before and can always touch up on again if there is any confusion as to why id want to hold off as long as i can. its a tricky situation. always feel free to send me emails and comments and i will do my best to explain to you the details that goes into a decision like that!!)

I knew from speaking to as many people as possible that there would be a rough patch but i wasnt sure how to gauge it as it seemed to hit everyone differently. Some people felt sick for a few days some felt it for weeks, and some, like me, had hospital stays and serious complications. I tried to stick with with, we tried to play with the dosing but it got to the point where i was admitted for a week, then let go for 2 extra weeks on home ivs then on orals for a week, and back in the hospital for another 2 week course of iv antibiotics which was very scary for me.

I have a general routine when i go in for ivs and since ive recently switched hospitals there were a lot of new protocols and changes i had to get used to. I had way more doctors caring for me from many different specialties and while the care was amazing and i felt i was in the best possible hands it was confusing to hear so many different things from so many different groups of doctors. It was a t a point where my meds were changed on a daily basis, and one combination left a whole half of my body totally numb and my head spinning to the point i could not leave my bed without assistance. I was absolutely terrified.

Heart monitors were keeping track of my high pulse and my low oxygen levels were becoming a concern and that familiar flash of panic that this could be the time i walk into the hospital and never walk out was constantly on my mind. Im very happy to announce that after 2 weeks they had figured out all the causes to these issues and found what medicines were making what symptoms appear and we ultimately decided Orkambi was not going to work for me. It was a tough blow to take considering i watched so many peoples lives bloom into something so surreal, something they never thought that could happen, and i never got my chance,

Im getting back to a place now where i can start little work outs and yoga again and try to work my lungs back up to the healthiest they can possibly be right now. This is no easy task and i cant stress how hard it is to sit in my bed on a weekend, at 25 years old, and scroll through my friends plans and pictures on facebook living it up and wishing so badly to be there with them. Im making a promise to myself to try to get involved with more plans, maybe initiate dinners or movie nights as much as i can. Ive always been adamant about not wasting my life and what i have left of it. I want to lay down and take my last breaths knowing that i did everything i wanted to. So far im right on track.

Im not sure the direction i wanted this post to go, it doesnt seem to have a plot, or much of a point, its just some general ramblings but i needed to get them out!! Which was the ultimate point of my blog in the first place anyways haha. My next few i have a couple topics i want to cover specifically and im playing around with the idea of doing a few video blogs as well. If theres any topics you think would be good for me to cover or any sortts of questions you have that i can talk about im always looking for suggestions!! please feel free to email me at any time!! i love hearing from all my readers!!


also make sure to make a stop by my CBS posts and give those a read, and visit my facebook page as well, it has day to day updates adn pictures and links to my CFF fundraising page which im very passionate about!!! Thank you all for sticking through my rant post here haha, im excited to get back into the writing game and get back on track!! <3

Great Strides donation page
http://fightcf.cff.org/site/TR/GreatStrides/45_Greater_Illinois_Chicago;jsessionid=34044FF6E24A8837669793923E31E59B.app212a?team_id=47045&pg=team&fr_id=4942

CBS Chicago Blog pages
http://chicago.cbslocal.com/2016/03/07/when-the-sick-life-wears-you-down-25-with-cystic-fibrosis/

Facebook page
https://www.facebook.com/breathlessinthewindycity/?ref=aymt_homepage_panel

The Other Side of Your Support System

"Support system : a network of people who provide an individual with practical or emotional support." 

It sounds so serious at times, it sounds almost intimidating to me, and while i like the idea of it, the idea of a group of people in my life who together make up a system of constant love, support, and encouragement i also know that for people living with challenges like, but not limited to mine, this system can be very complicated. I'm not saying that the average healthy person doesn't have social problems but adding in chronic illness, constant hospitalizations, and stress through the roof doesn't necessarily help. Going into transplant one of the things they asked me about on my very first appointment was who do you have that you can lean on for support? Who do you have in your life that you can talk to, vent to, who can help you in hard times? My list went on and on. I had everyone. I listed my sister who's been my absolute rock for years and still is. Shes the only person i can honestly say i have absolutely zero doubts about leaving me in any way shape or form and who would run through a brick wall if she needed to. Shes strong as hell and shes a constant source of love and support. I listed my parents, who despite our rocky pasts and admittedly rocky present can be counted on for a certain level of support and help. I listed all of my friends and i listed my boyfriend because despite the hundreds of outs i gave him he swore it was worth it. I was confident in my list of people i was confident that this would be hard but that my support system wasn't something i had to worry about. Turns out i did. Here's the complicated part, the last 3 months I've gotten an out pouring of support online from different people, communities, companies, you name it all on my side wishing me well letting me know they're in my corner that they're behind me in my fight 100% and reading the love pouring in from all over the world melts my heart. To know that complete strangers care enough about me to to take time out of their days to send me a message or send me a package or a letter to brighten my day blows my mind!! Yet at the same time the people who i see on a regular basis are here feeling the stress and its overwhelming for them. I always thought of the people around me as the true heroes here, because while this is my life and i have to live it they have a chance to walk away from it and they never did, but lately a few have taken that walk. So while i have this online community rooting for me every day my personal support system was crumbling fast. The world keeps moving my friends have lives, they're 25 their finding their dream jobs, getting married, having children, going out on weekends, living it up like they should be and its not always ideal to sit in a hospital room. My boyfriend is an amazing man, I've never met anyone so caring and loving and constantly there for me no matter the situation but after 3 months stress builds, and he has his own well being and life to worry about and i cant be there to be a part of it and that puts a lot of strain on us as a couple. I  was caught up in my own version of what my support system was and what it meant that i forgot that the people in it are feeling this pressure too. I became too reliant on them. I lost my own sense of strength and i forgot the girl who walked into clinic head held high knowing i was gonna kick ass and come out a healthier person, able to travel, and live, and breathe like everyone else. Your support system can only be as strong as you let it, if you lose support for yourself they will feel it. its okay to lean on people and to need them but they cant be your only source of good. This process took it out of me, but I'm hanging in there. It took losing the people i leaned on the most to realize how much I'm capable of leaning on myself and since then I've been happier and healthier. Find the balance between asking for help and support and relying on the people around you for everything. Don't underestimate your own strength and will power, don't get to the place where your sitting in a room waiting for those people to come back because you just cant be you without them. Recognize that you need to support them too, take a little walk in they're shoes, understand the stress that this puts on them, and your rock solid support will stay diamond strong. 

People love you, let them when you need it, realize you can love yourself just as much though. <3 

long story short....

Being a chronic badass at my admin!

Hello!! Yes, yes, im still here!! It has been soooo long since i posted!! Sorry about that one...its been a little crazy health wise and ive been sleeping quite a bit but lets see a little after my last post i was admitted into the hospital for just under a week, it wasnt too bad of an admission i mostly had nurses i liked and had very few problems. The first few nights i had a bad reaction to the meds and had a few bad fevers and got really achey (the meds to make me better make me soooo sick!!) and i was also really nauseous for some reason. I did NOT feel good in there! I had quite a few visitors and that def helped the time go by and it was nice not to be alone! Michelle and Allie of course came by, Joey of course was there a few times and...my dad...more on that in another post. They sent home on picc line antibiotics to finish the 2 weeks out. I was supposed to get it removed Monday but was once again feeling horrible and so im gonna keep it for another week. Not too much has happened since then ive been home alot (thank you God for Netflix!!) and i went out a few times with Allie to cure my cabin fever (one night i ran into a total matt smith lookalike!!!) and i had a few dinners with Joey (which were delicious and amazing!) but nothing too special. I have a ton of topics i wanna write about though, ive had a lot on my mind and it hasnt been the easiest few weeks so expect a few rants! But first things first. ALLIE HAS BEEN EXCEPTED INTO WILLIAM AND MARY IN VA!!!! Im so happy for her this was her first choice college and of course she got in theyd be insane not to have excepted her :) Its 12 hours away though and im going to miss her so terribly! Ive already started a jar with ALL my extra cash so i can visit her as much as possible! As selfish as it is im scared that my best friend is leaving because i count on her for so much, shes such a huge part of my support system and honestly id lose my damn mind with everything i have to deal with if i didnt have the morning lattes the weekends the sherlock nights, but im so proud of her for how hard she works and for going after what she wants and im very very happy for her :) We still have st. pats day and our road trip and all summer with nights out concerts and whatever else we do!! Its far from the end of an era, but it feels like it!! More posts to come i have lots to catch up on!!

the view from my room :)

Miss Al and I 

Hospital Stays

When i start really feeling bad i know the best thing for me is to call my doctor and set up an admission, but i still fight it. Every single time! Not because i dont want the pain of all the blood draws, ivs, picc lines, and everything else they do. Not because i hate that someone comes in my room every 5 mins and they usually end up severely pissing me off before they leave, and not because being in my own bed in my own apartment is sooooo much better than being anywhere else....Its because i hate feeling cut off and isolated from my normal life. I hate staring at my phone waiting for someone to call me or text me or hoping a friend comes on facebook. I hate hoping that maybe the next time the door opens itll be a friend not a nurse whos here to poke me with yet another needle :(. Although there are a few people who try to be there for a little bit when they can (aka Sarah, Allie, and Michelle) but i do feel forgotten in there. I appreciate even a quick phone call, its soooooo boring in there and I understand that people without CF have lives that dont include as much free time as ours do and i try to remember that but i still cant stand feeling like unincluded (is that a word? it should be...). I wish us cfers could be around each other because i know alot of us have this same outlook, and if i could id come visit each and every one of my CF friends and id bring them real home cooked food that only contains one type one type of animal per meat item and was not made in a lab and coffee thats not made from pine cones and bits of card board!!! The last admission i had was reeeally hard on me cause i barely saw or talked to anyone...im really hoping this one is different! Feel free to email me and leave me some love!

Heres to the few people i can always count on!!