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

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.

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 

Last Post Of The Year!!!

Goal achieved. I was home for Christmas! I wasnt too sure if id be able to stay home for the holidays this year as i came down with a pretty bad cold, sore throat, runny nose, horrible horrible cough, couldnt catch my breath for anything, the whole 9 yards. Its hitting me pretty hard and just tonight my lungs have decided they had enough and have all but given up on me, i have 1 day till NYE and im very determined to make it till the new year at home! I need to tone down my stubborness, im well aware. Im once again hooked up to my oxygen concentrator cause my oxygen levels without it are dropping down to the 88%-89% range (down from 94%-95% last week) and im thinking an admission is inevitable no later than Jan 2....boo. On the bright side i had an incredible week! Christmas Eve at Sarahs was...well...entertaining haha. It was kind of a clusterfuck but hillarious at the same time, i had a great time! Then i slept most of the day on Christmas day then that night Joey came by and we watched a movie. Thursday night we went to dinner and then watched Hot Rod, which is hillarious and one of the best movies ever and he didnt really agree..but then again he likes Adam Sandler over Will Ferrell so Im not gonna read too much into his opinion there haha, Friday he met up with me and Michelle at Tobys and it was a great night and then we put Harry Potter on and were lazy all Saturday morning and went to Maki Sushi tonight :) Definitely the best few days ive had in a while! I havent been so happy in a loooong time! Tomorrow will be spent planning NYE with Allie and sitting veeeery still lol.

                               

me?? oh ya know, 29%. FML.

    WARNING : PITY PARTY ALERT AHEAD!!!
     PROCEED WITH CAUTION!!!
Im excited to start the new year and hope its just as amazing as this one was with him, Allie, Michelle, Sarah, and everyone else who made every day incredible. Im hoping my lungs dont fail me too quickly so i have time to make that happen, and im hoping all the friends ive made in my CF communities are happy and healthy too, it breaks my heart when i log on an almost everyday someone else is gone, someone else lost the battle, and im scared that it might be me next year. The breaths i take are shorter and my heart is beating faster and im tired more than im not, I wanna go out and keep up with everyone but my body wont let me. It makes me sad but not for myself, for Sarah who loves and cares about me more than anyone i know. For my mother who doesnt always know how to be my mother but would be devastated none the less. For my niece who lights up my world and my brother in law who im so glad joined our family! Hes good to Sarah and Gwen and they deserve the best :) Im sad for my best friends who are positive to the point of pure denial. The only person im not sad for is myself because ive had just about enough of not being able to breathe, not sleeping at night, eating all day just to lose more weight in the end, hours of meds and tons of pills, and missing out on life because im so tired i just cant move. Maybe im just having a rough patch...a year long rough patch...and i will fight as hard as i possibly can to the very end but if i should lose, im at the point where im okay with that.  Heres to making the best out of this new year, whatever it should bring, i resolve not to let a single day go by that i didnt make the absolute most out of.

Spoiler Alert : Not My Most Exciting Week

So i havent posted for a little while and i feel like i have a lot to say but ATM all im thinking about is how much my throat hurts and i just keep wondering when this cold, if thats all this is (knock on wood), will end!!
                             But....life updates-
lets seeeeeeeeeee, last friday i saw The Hobbit and it was my first IMAX experience and i was scared i might fall asleep for a little but then i found out just how loud and ridiculous an IMAX movie is hahaha, needless to say theres no way id have fallen asleep. (Id like to add that i was just really tired, the falling asleep has nothing to do with what movie it was). Saturday Allie and i went to TBOX (twelve bars of christmas) downtown and had an amazing time! We wore our finest Christmas attire and headed to Wrigleyville around 8ish and everyone was T.R.A.S.H.E.D. by the time we got there. I mean like ridiculously belligerently in your face smashed. It was obnoxious, but little did we know wed end up exactly the same way by the end of the night haha. This week was a little slow as i didnt feel too great but I went to Houlies on Monday and Gene and Judes on Tuesday with Brent ( aaaaaaand then theres X Factor last night and tonight and the people i wanted to win won!!! I am so obsessed with Alex and Sierra their just too damn cute!! I wish theyd adopt me into their relationship....
                                  Now CF updates-
Ive felt really tired for the past few days to a week and just recently ive started to get a bad sore throat and i went thought like an entire box of tissues in one day which is horrible, and im hoping its just a cold but im not sure. Im gonna take it easy and hope it goes away but if not ill call my doctor after the new year. and yes after the new year CF will NOT take these holidays away from me!!! Ive been working really hard with doing my meds and eating as much as i can although if i had a better appetite itd be easier, this cold is really taking a toll on me, i did just eat a whole meal equaling 1,002 calories though! 2,000 left for today to make my goal!! (yeah....) My breathing has gotten worse im having trouble just walking to my car and im coughing constantly. Im hoping things improve soon but either way i will get better at posting!!

Well thats all for now! Sorry for the boring post but my life is a little less than exciting at the moment.

couple more winter photos...(alot of them are in bathrooms...my apologies. For some reason we do that)

Minor Set Back

Since getting off my IVs a few weeks ago ive felt pretty great i had some nights downtown and really started feeling like myself again and Thanksgiving was nice i spent it with my sisters family and then slept over at her house Thanksgiving night and did some black friday shopping (at Half Price Books hahaha) with her and her family :) It was fun and i loved spending the holiday there i love them all so much! Then last night i decided to go to Winterfest (stores give out hot chocolate and brownies and things and the town is decorated for Christmas) and also went to Houlihans to watch the hawks game and it was fun but even while getting ready i noticed i was really out of breath and couldnt stop coughing, then by 8ish i really started to feel it so as soon as the hawks game ended i went home and set up my oxygen and went to sleep but kept waking up with a HORRIBLE headache! It woke me up at least twice and is one of the worst headaches ive ever had. Every time i cough it sends shooting pains through my head and i just wanna cry :( It feels like a pressure headache and im still having trouble breathing and starting to get aches all over so even though I just got out of the hospital a few weeks ago but im thinking it might be time to go back already i feel terrible and it doesnt feel like a cold to me but im gonna give it a few days and see how i feel then if im not improving ill call my doctor and set up an admission and another course of IV antibiotics (which also means another picc line if they can start one and if not, then i have to get a port...boo.) until then its sleep and oxygen for me! Love to all of you i hope your holidays were good!!

xx

When Bouncing Back Isnt Realistic....

Well im ecstatic that my PICC was pulled just now seeing as it was driving me CRAZY!! I think i might have started to develop an allergy to the tegaderm dressing or the chloraprep (cleaner they use) because although my lines are never comfortable this one was almost unbearable, it kept me up at night and i thought i was gonna scratch my arm right off :( Soooo glad its gone, however it hit me last night as i was trying to catch my breath while walking through my apartment, that i was trying to catch my breath while walking through my apartment....

Allow me to explain- June of this year i went to the Apostle Islands thanks to my super amazing wonderful sister who surprised me with a trip she knew i wanted to do before it got too hard for me. I wanted to kayak through the sea caves on lake superior so badly and she planned a whole vacation, drove 8 hours, rented an incredible cabin with a private dock, planned hiking trails (one with a pretty waterfall you could go behind (see bottom of page for said happy times), fished with me in a half deflated raft, and paddled her superstar ass off in a kayak in a rain storm in 40 degree water so that i could do it. Words cant describe how much fun i had and how lucky i feel i saw something so beautiful and got to spend a few days just hanging out with my family and what that meant to me is priceless. I hiked up to 5 miles uphill most of the way and i ran and was able to kayak through the waves and i felt good. I felt really really good. Now its 5 months later, my lung function is a mere 28% and after 2 weeks of IV antibiotics and a 5 day hospitalization im still gasping for air while trying to sweep my living room floor. Its disappointing to say the very least. This is the first time that ive finished a course of treatment and still feel short of breath. Usually i feel unstoppable and this time i just feel the same. I knew this day would come, when i didnt come back like i used to after antibiotics, but i didnt think it would be at 23.  Looking back on how my life was not only a few years ago but just back in June is heart breaking for me. What else will i have to give up? I live for weekends out with my friends dancing and having fun but im scared those days are coming to an end soon as well...Scary stuff!

A Day In The Life of Meeeee!! ( and stupid cf)

I tend to feel alot like this....

Im getting increasingly annoyed with CF, and i dont think people understand just how difficult it is especially right now when im on iv antibiotics and how much time and energy it takes to keep myself feeling as well as i do, which isnt even that good most of the time, so i thought id take you all through a day in the life of Rachel!! :) I have to also watch how much i eat every day to make sure i get all the nutrition i can as im trying to gain weight and have been my whole life. I need at least 600 calories and 33 grams of protein at meals to make my daily goal of 3,000-3,500 calories and 150-200 grams of protein. My snacks need to be around 400 calories and again around 33 grams of protein. Although i dont always make my food goals and admittedly some treatments go missed as im so exhausted i tend to fall asleep a few times throughout the day my doctor, nutritionist, and I made a generic plan of how a typical day should go which is what ive included. So heres my day!!

6 A.M. ~ wake up to do Piperacillin which runs for 30 mins through my picc line

10 A.M. - Wake up again!! Time for more meds

• 1 pulmozyme nebulizer treatment (10 mins)
• advair inhaler
• 1 adek vitamin
• 1 vitamin d
• 1 zithromax
• 1 albuterol nebulizer treatment (15 mins)
• use my VEST machine for 15 mins
• 3 creon enzymes
• eat a breakfast of at least 600 calories and 33 grams of protein

12 P.M. - it usually takes me till now to be dressed and ready for whatever i have to do that day, i move pretty slow so i dont cough so much and it can be fairly difficult to do things with a picc line in my arm, but before i do anything else i have to eat again, and do more meds.

• 2 creon enzymes
• cayston nebulizer treatment (5 mins)
• eat a snack of at least 400 calories/33 g. protein

2 P.M. - my second dose of piperacillin. (30 mins)

3 P.M. - by now im relying healvily on coffee or energy drinks to do anything and i feel like i could drop over and sleep for hours, the lectures about how bad they are for me are annoying..please stop. :)

• IV dose of tobramyacin (1 hour)
• albuterol nebulizer treatment (15 mins)
• 3 creon enzymes
• lunch of 600 cal/33 g protein

5 P.M.

• cayston nebulizer treatment (5 mins)
• 2 creon enzymes
• snack of 400 cal/33 g. protein

8 P.M. - i may move this down to 7 if i have plans :)

• advair inhaler
• 1 vitamin d
• 1 adek vitamin
• 1 albuterol treatment (15 mins)
• 3 creon
• meal of 600 cal/33 g. protein
• 15 mins on VEST machine

10 P.M. - ^same as the last one, it might get moved to 9.

• piperacillin (30 mins)
• cayston nebulizer treatment (5 mins)
• 2 creon
• high protein health shake

11 P.M.-6 A.M. i use 2 liters of oxygen overnight and will hopefully be getting a salt machine as well which ill use all night!! I heard amazing things about them!

So thats about what i have to do every day, some days i add on cipro and prednisone every 8 hours but luckily im off of those antibiotics for right now and in the summer i drink a gatorade with a teaspoon of salt in it every 5 hours as im extremely salt deficient, but this is a lot. It can take up my entire day and eating that much food can make me feel so sick i dont even wanna move, i work really hard at taking care of myself all week because my life literally depends on it. Saturday nights are soooooooo needed to blow off steam after that! haha, so when i sleep in the times i have no meds or i dont have to make a snack or a meal im not lazy, & I dont not have a job or go to school because im lazy or i dont care, i wish i could. this is exhausting and really takes my days away from me. Im quite proud of everything that i am able to do, but i need to buckle down and follow my meds a bit stricter as i can feel myself getting sicker. Maybe one day people will get that and wont judge us CFers so hard for the ""lack of effort we put into things" as ive heard it called many many times. 

Hospital Day 2~3 !!

Weeeeelllllll as far as a hospital stay goes this one is kinda not so terrible, kinda. But it also is.

MONDAY!!!

So Monday i didnt get the picc line as planned because the new resident is a dipshit. To be perfectly honest she really was. She insisted that they try to do it bedside but that never works cause ive had so many and the only option is to go down to IR and have the surgical team place it and she doesnt know what shes talking about and it took my doctor and all the nurses and me bitching at her to get her to see that. I also had a fever again during the day so my nurse cranked up the heat and brought me 6 blankets, i asked for a puppy as well but she couldnt do it....boo :(

She makes the best faces!!!

My mom came by and my sister too, she brought me Panera which was absolutely delicious and waaaay better than this shit food they have here haha and although she had more fun taking pictures of herself than talking to me i had fun!! She also decided to write "patient has 3 symptoms of crabs" on my white board haha. So that was Monday......



TUESDAY!!

 I was woken up super early and was not happy about it then when my breakfast got here so did the guy to take me down to IR for my picc, They were getting ready to do some dye thing (i cant remember the medical term) and an angioplasty and the pain meds + and empty stomach did not really feel good!! But they got it in okay and the surgeon played counting crows while he worked which reminded me of someone <3 and ive gotta say thinking about them the whole time made it waaaay easier!


then as soon as i got upstairs i ordered lunch but guess what...as soon as it got there so did respiratory. Awesome. After that tho i turned up pandora and did my nails (as girly and stupid as it sounds haha) and they came out super cute! It took forever tho but its not like i have anything but time in here ha



Later Michelle and Allie came to see me and brought me cards and gifts and Panda Express! It was delicious and we got ridiculous fortunes that made no sense at all haha, They also made a "kegger in room 1456" sign on my white board hahaha trying to top Sarahs sign but lets be honest thats probably never going to happen. Love them to pieces they are such amazing bffs!


I def had issues with one nurse though who insisted on treating me like her 10 year old daughter, around 5 she came in and said " Are you planning on eating tonight?? i know how doing your nails can be and sometimes you get really involved and lose track of time so can you do me a favor and order some dinner?? "  

im sorry what?!?!

Then i told her my friends were bringing me dinner and she brought my enzymes so i could just take them whenever but she brought two and when i told her i need 3 she acted like she didnt believe me and said she had to go check, comes back 10 mins later and says "you know what rachel i was looking at your chart and i saw your supposed to have 3 of these..." YEAH I KNOW I JUST TOLD YOU THAT!! annoying!! theeeeeeen i asked her for a cup of coffee at 9 and she asked if i was trying to stay up for something and she asked if ill be able to go to sleep soon...to make it worse sarahs webcam broke so i couldnt skype my puppy but she sent me a video of him!! THE PRESH!! 

Last time I checked i wasnt on the peds floor....which must mean im on and adult floor, as an adult, who is capable of making decisions about what i eat and drink and when i eat and drink them as well as when i want to go to sleep, im 23 i dont have a bedtime lady. Now go home. Okay okay rant over! Tomorrow Joey is coming by after work <3 he told me to make a list of things i wanted him to bring me so im trying to think of the most ridiculous impossible things to ask for haha but i think i might go for some real food as well, i really cant stand the "food" they have here! itll obviously be the best day of the week. Im def excited to see him :) Goodnight all!