Another Unexpected Hiatus, My Bad!!!

ive been notably absent from the writing world as of late, for a few reasons really. First and formost id like to start off by thanking everyone who supported, read, and shared all of my CBS posts i absolutely loved my time as a contributor for such an amazing network but it officially came to a close about a month or so ago (its been a looong time im so sorry!!!). I then decided to write with a site called ChicagoNow, an amazing site if your looking for other blogs to read, and then also decided against that soon after for some of the same reasons i strayed away from CBS.

I started writing again months ago thanks to the encouregment of a dear friend and also to relieve my stress and m anxiety and because i felt i had so much to say i wanted to vent it out somewhere and it was such a cool bonus that all of you signed on to read what i had to say!! Im still blown away by that! However when the writing began to be edited, or expected to be on a regular basis, say every wed or so, it became a task. It became less of my venting and my hobby and my escape and more of an assignment. while the attention it gained for CF awareness and our lives living with a chronic illness was amazing, it just wasnt worth it for me personally. I will now continue to write here and post it on my social media page Living Breathless In the Windy City

Writing is my happy place. Its my zen. Its my escape from daily stress and anxiety its my own little place where i can say whatever i want to and i need that back, but i need it on my own terms!! Ill be posting a real post soon, but my point?? YO GUUUURL IS BACK!!!!

My Perfect Week in a Perfect Nutshell

This is what pure happiness looks like, no oxygen, hands up, smiling like a fool after scoring a strike at cosmic bowling with my family and a good friend of mine. This is a feeling i wont soon forget.

This week has been filled with fun and laughter. My niece had her spring break so it was great having her home every day and to be able to go out and do things (like bowling) with her! I made a few trips to Milwaukee, one for a birthday dinner with one of my best friends, who also has CF, and one during the week for a Milwaukee brewers game! 

The Brewers game was fun ive never seen a game at Miller stadium before and i liked it although im not sure about the whole concept of tailgating a baseball game, in Chicago we tailgate football and for everything else we drink on the train on the way there like normal people, baseball tailgating was a new one for me and i was a baby about the cold so i skipped it haha but i went with a few friends and met some people there as well, one of which i have been waiting to meet for a very long time now. If you like my blog you might like hers as well, The Living Breathing Wendy. She is really the reason i got back into blogging in the first place and i have her to thank for inspiring me to keep writing about my life and my experiences and meeting her was a top moment. She also has CF and as cheesy as it is to say, shes a huge inspiration to me not only as someone with CF but as a person in general. Shes fun and full of life and im so lucky to be able to call her a friend! 

Possibly my best day however was going downtown to the CBS Chicago studios to meet the woman who came to me about being a contributor to the website and who made all my CBS blog posts possible. ( which you can read all here : Rachel Whidden for CBS ) I woke up early and got ready and havent stressed about what i wore for a day in about 8 years haha. I took the train downtown with my oxygen cause i figured thered be a ton of walking and i was right im glad i brought it. The studios were awesome, the control room had so much going on and everyone seemed to be doing 900 things at once it was pretty cool to see all that, then i got a little tour of the make up room and a green screen room and then i got to sit in the studio while they finished up the live news and get a picture with 2 of the anchors (one of which actually covered a bit on my blog a while back so it was fun to actually meet him!) The icing on the cake was being able to sit down face to face with Wendy (the amazing woman who got me started there) and pick her brain about the industry, and my blog. Being able to talk to her about a plan for school and my future was huge, shes a big role model for me so hearing her tell me she thinks my plan is good and giving me recommendations for schools and tips for my writing was invaluable. 

I had a few nights out with friends, and one downtown playing Harry Potter trivia and a few just hanging out at my house playing video games with my sister and hanging out with the kids, who are a riot and a half! The baby is at the funniest age and my niece is a whole lot of sas so together its pretty entertaining! The point is ive woken up excited for the day ahead and then  went to sleep with a smile on my face every night and i couldnt be happier for how things are going. I cant wait till i can post again about the next set of amazing things making my life what it is. Stay tuned. Its gonna be good.

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

Im Rachel Whidden and these are my excuses.

ex·cuse

verb

ikˈskyo͞oz/

1. 1.

   attempt to lessen the blame attaching to (a fault or offense); seek to defend or justify.
2. -google dictionary

This morning i woke up not to the obnoxious "good morning" song i use for my alarm tone, but to the sun coming in my window. I was in a warm bed with too many blankets and my puppy sleeping in my arms as always...a seemingly perfect morning, yet i could barely open my eyes. I felt physically exhausted, possibly from the work it took to breathe all night or possibly from the constant cough attacks waking me up every few hours. Without thinking i reached down to the nebulizer that hasn't left my bedside in days and poured a vial of albuterol into the cup knowing it'd be almost impossible to start my day with airways that refuse to open. I have a list of things to get done today, a few things id like to do just for me, and a list of "excuses" 10 miles long already forming in my mind for why i can only do half of it. I'm not ashamed to use them, they're perfectly valid, and heres why.

When i first started getting sicker i felt ashamed at the menial tasks i could not complete on my own. I felt like less of a person every time i asked for help to bring the groceries in or heard the snickers from my coworkers saying "shes soooo slow, i swear that girl is made of molasses". The looks of pure disgust when i had to excuse myself from the sales floor to break down after being yelled at for spreading my sickness to customers or the self hatred i formed towards myself as i tried desperately to stifle my cough so the band of assholes following me down the school hallways faking a cough and laughing at me would hopefully disband when they ran out of fuel.

I tried apologizing for my ongoing "cold" and i laughed it off with every joke about how maybe if i didn't smoke so much id be fine. i made every excuse for my illness except for the one that really mattered : i am chronically ill. This itself is technically an excuse. Its a justification for why i cannot do something or why i am the way that i am. Its a reason that i need to sleep and take various pills before each and every social event in order to feel well enough to do said thing. Ive always felt that making excuses based on my illness made me a weaker person. Thankfully i now realize that's not true.

I try to stay as busy as possible but the behind the scenes is brutal. I go to dinner after a 4 hour nap and an anti nausea pill. I see a movie after a small nap and always before 8pm as being out too much later just isn't something can handle. I cancel plans left and right because i know that while id love to go to your birthday party my body cant physically handle being out that night. I make excuses right and left and I'm done apologizing for them. As should everyone with a chronic illness. Know your limits. Know that a 45 min workout two days a week is an accomplishment when every fiber of your being in struggling to keep going. Know that the dinner your going to tonight is a big deal and order that steak cause your a bad ass bitch and you deserve it!! You did laundry today? Your a goddamn rock star and you deserve awards!! Being sick isn't easy. Allow yourself the power to recognize what you can and cannot do. The people who love and support you will understand every step of the way.

I implore you to check out the spoon theory for a well written explanation on how we make the decisions on what to do each day and why we cannot fit as much into our days as you'd like us to.

make your excuses. don't apologize for them. this is your life and your body. own it, do what you can, and accept what you cant. your worth far too much in this world to feel bad about ow others perceive you. the battles you face are long and they're hard but as long as you do what you can when you can baby your golden!!

*as a side note id like to include the links to my new posts ive been writing for CBS Chicago, http://chicago.cbslocal.com/2016/02/10/cystic-fibrosis-lung-transplant/?cid=facebook_CBS_Chicago

 im very excited to bring awareness to the struggles and triumphs of being a 20-something chronically ill woman navigating life between sick days and transplant meeting. The latest post is my third one and the links to the first two are at the bottom of the publication as well as a link to my new facebook page as im no longer accepting randon friend requests on my personal FB. My page will have updates on my health, my blogs, and my day to day for anyone interested in following me!! Also feel free to check out my instagram link on the side of this post in the about me section. Thank you for all the love adn support!! & Thank you for the patience between posts as lately my health has declined quite dramatically and i havent had the time or energy to post regularly as before. I appreciate all the love and feedback ive gotten so far with these posts and its an honor to have impacted so many lives. <3

Rachel Whidden : Chronic Bad Ass, Salty Girl Extraordinaire, & Now Superstar Blogger.

All through grade school, middle school, and high school i did everything i could to seem normal and i laughed off the comments like "are you really sick again??" "go have another cigarette geez!!" because i didnt wanna be the sick girl. I didnt want anyone to know that i had Cystic Fibrosis and i went to some pretty great lengths to hide it.

These days are a little bit different. These days i post the ugly pictures with chest tubes and oxygen masks i post about the fact that i just coughed up a bucket of mucus because not only am i sick of hiding but ive come to realize just how important it is to spread awareness. People tend to think CF is like asthma or COPD, some even get worried its contagious and that ill somehow spread it to them. Ive become quite an advocate for awareness these last few years and im always looking for opportunities to spread more, which brings me to my main point and the most exciting news ive had in such a very long time : im starting a blog for CBS!!! 

Im so honored that my attitude, and my story stood out to a wonderful woman who found me through my Instagram (the link to which is on the side of my blog, under my bio!!! Check it out!!) and gave me an amazing offer to write about what its like being 25 and living with this chronic illness!!! Ill get to share with the world what life is like when your sick and watching the world move on around you, what it feels like to see your friends and family reach their goals and achieve success knowing that you could too but your illness and health need to be your priority. The urge to live life to the fullest and spend every second you can living it up and loving and laughing till it hurts. Ill have a chance to spread awareness about CF and what it is and how it effects us!! Its starting as a trial thing and well see if it takes off but im almost done with my first post (just gotta add a few things and edit it a little bit ha) and im sending it in on Tuesday!!! Ill be posting the link to it on here when i make posts as itll be totally separate and have totally different posts! So now youll have 2 of my blogs to read hahaha yay you!! Im very grateful and excited to start this new project and i cant wait to see where it leads!!