you got me....im sick and im lazy

The word lazy has always been a big deal in communities of chronic and terminal illness. to these communities its a word thrown around by people who have no understanding of the illnesses that we deal with on a daily basis. Im not just speaking about those effected by cystic fibrosis here, but people suffering from any chronic or terminal illness. theres a generalization that were young, or we look healthy, so we must be just fine. That we dont work or go to school because were simply using our diagnosis to get out of being a contributing member of society and we just want to lounge around day to day watching television and using the governments money to buy our way through life.

we fight the term lazy and make grand statuses and announcements about all the hard work we do to just make it from one day to the next, we feel the need to defend ourselves from the misunderstandings and the negative comments aimed our way, from people who two minutes prior to shooting us down posted some meme about how naps and pizza are life. 

well here it goes. im sick, i dont work and i get aid from the government and sometimes, i am extremely lazy. 

let the backlash begin. 

im saying this because its true, sick or not sick we all think the napping netflixing and loving tacos memes are all about us. people can work a 40 hour week and on saturday and sunday do you think theyre the epitomy of community service and all things good?? no. they hang out with friends, catch up on that show they love, toss a few back and relax. yet we feel the need to constantly be reminding everyone how hard we work every single day and we are never ever lazy!!! 

stop. just stop. 

you dont need to prove anything to anyone. your allowed to wake up one day feeling perfectly fine, your illness isnt making you feel ill at all and all you want to do is binge the whole season of "stranger things"(no seriously you should its a great show) and eat your way through any and all things delicious in your house and you should, you should do it and you should not have to explain one goddamn word of it to anybody for any reason. 

the need to explain what we do and why we do it has in a way taken over some of our lives. We feel guilty or we feel like were worthless for not being able to contribute, the struggle is too real sometimes. i hope you know you matter, to the people who love you you matter. to people who know you you matter. to people online in these communities you matter. and all of them know your doing the very best that you can. let go of the need for the approval of some idiot who thinks you can do better (keep in mind they cant be too happy themselves if they need to tear you down to make themselves feel better....) and just know your doing the best you can. and while you dont go to a traditional job you work your butt off everyday. so sometimes, yeah, you deserve to eat a tube of pringles with a stuffed crust pizza on the side and not move for a stupid amount of time. you earned it.

 

Moments.

Heres a question for you, when is the line crossed between bad days and depression? At what point do you realize that maybe you arent moody? Maybe its clinical. Most importantly how can you fix it?

My week this week hasnt been spent sitting bed looking longingly out the window, and i havent once had my dog whine at me with his leash in his mouth waiting to go for a walk like the drug commercials depict. I dont take a pill and suddenly im playing with the kids and playing fetch at the park it doesnt work that way. I smile i laugh im me in every way from a bystanders point of view. Internally i feel nothing, i feel the world spinning away from me, i feel my friends creating a gap that slowly enlarges with each fake laugh i try to force out when were together. 

CF kills my lungs, it destroys my pancreas, my kidneys are shot and my liver is hanging on for dear life (although my days of parties and bar hopping probably had a bigger impact on that than CF ever could). I cant blame CF for this recent mental unbalance and constant need for reassurance directly but i suspect it played a part. 

'

loving a Mississippi river view on a beautiful morning!

I have brief moments like driving through to Iowa for a wedding and passing fields of wild flowers that seemed to stretch for miles. Old farm houses that took me into daydreams of coffee on the expansive front porch bright and early. I passed river trails and nature preserves and was immediately engulfed in the pure contentedness i feel when walking through endless trees feeling like the only one in the world at the time. Listening to only the sounds of birds and the occasional crackling of sticks from something i must have startled. 

I have moments when i see my little sisters (which is too far and few between for my liking) and the laughter becomes genuine. Spending weekends being totally comfortable with who i am because while we dont see each other often i feel a comfort in being in their presence. I feel like they accept me and all of my quirks. "I like you because your so weird." said Jenny a few weeks ago, and i felt that i am weird, im different from most, i dont have the views and opinions of most and my hobbies and interests are not considered normal, yet this was the greatest compliment ive ever Enjoying a received

I have moments where one person can make me feel like a celebrity in my own little way. I have a best friends Grandma who was so genuinely excited to meet me it melted my heart right out of my chest. Enjoying a glass of wine and a conversation with her lifted me up in a way i havent felt in some time and i truly hope that i see her again. 

These moments are the ones that keep me on he ground. When my mind races so fast it could propel me straight into the atmosphere. Its going to be work. I need to be proactive and put myself out there, i need to surround myself with these seemingly small yet grand plans that lift me up. Pills help, im not saying theyre worthless but its up to me in the end. I know im strong, i know i have potential, and i know that when motivation strikes im unstoppable in every way. My last few weeks have been a roller coaster, but im never one to turn down a ride. I will beat this, i will persevere, and i will win. 

I guarantee this.

Finding a Future

Id like to start this post with a small warning that its not the easiest post to read. It may be a bit of a rant at times but Ive been doing a lot of thinking lately about my current life and my future and how my past as brought me to where i currently am and where im going. I dont usually bring my past up as its not a typical story and i suppose that some would consider it almost shameful or embarrassing but ive become very aware that its made me exactly who i am and its contributed to where i am in life and in my health, and so im making it a part of my story.

At an early age i understood there was a life expectancy for myself. I understood that my life would never be the same as everyone else my age (thats a bold statement as there are thousands and thousands of chronically ill children and teenagers in the world but im hoping you understand where my thought process is headed here), and i understood that perhaps the types of futures that others were planning would be a bit of a pipe dream for me to achieve.

Through maybe 13 or 14 i barely did my meds. Confessional time. I rarely did a nebulizer treatment and i was NOT going to be the weird kid taking pills before i ate. I hated my disease and i felt the need to hide it. Since i felt healthy i thought i didnt need it, i didnt realize how critical that would be to my health later in life. My mother never enforced my treatments and turned a blind eye when i said id do them later and never did. I wish now that she had kicked my ass, but she was also the type to sit around smoking knowing full well her child was sick...so wheres the surprise.

By 15 i was taken from her home and placed with my dad through Child Protective Services not just for medical neglect but because i wasnt showing up in school. I was getting in trouble i was mixing in with the kind of kids you dont need to be friends with and she wasnt capable of being a parent at the time. I was on a bit of a downward path and while at the time of the move i was furious and i felt ripped away from my entire life and uprooted, looking back at it that was the day that my life was saved.

My father forced me to do my treatments and while i still insisted on not showing up for class at least i went more often than not. I regret my teen years. I regret them so much, the bad decisions i made for myself would effect the rest of my life. My sister was my only constant rock through all this time.

By 18 i had moved out of my fathers house, in with my boyfriend of them time, dropped out of school, and then gotten married. I still wasnt doing my treatments and the parties we threw filled our apartment with cigarette smoke. I was a mess and i was slowly killing myself. By this time i had given up an on any type of future for myself and i was winging each day, this went on for a few years until i had a very bad medical scare in 2013. I caught the flu and within one week i found myself in the ICU on bipap and no sugar coating. They didnt know if i was going to make it. my lovely husband came to see my twice for about 20 mins each in the entire 2 weeks i was in the hospital. I didnt know about the online CF community i was alone, i knew i did this to myself, and i was afraid.

This was when i opened my eyes, i saw the fear in my sister that i wasnt going to make it, i saw my mom realize how bad my illness had become and i know a part of her knew this had all stemmed from the past. I made the decision during that stay that i wanted to live more than anything else on this planet. I wanted a life and i wanted a future, and not just any future, but the best possible one i could have.

From then on my husband and i split up. I began to do my treatments diligently and took every pill i had to take every day. I ate as much as i could to gain the weight i needed to keep off infections and i found the online Cystic Fibrosis community. Finding people to talk to who knew exactly what i was going through made life easier, some helped hold me accountable for my medicines and appointments and i did the same for them. It was life changing. Im so proud to call so many of these people my friends now, im not sure where id be without them.

My main point of all of this is that growing up i didnt see a future. All of that stuff that happened worse me down and i wasnt in a good place, i had given up. I had decided CF would win and that was that. However a few days ago at my transplant clinic after being listed for almost 8 months and having less than 29% lung function i blew a 32%FEV1 and my doctors agreed that i was healthy enough again to be listed as inactive on the list.

I felt tears welling up as it was evident that over the past few years the hard work and dedication to exercise and medication schedules has paid off. I was gaining back precious lung function which to me is equal to time. For the first time i saw myself in the future not just existing tangled up in oxygen cords or in a hospital bed but doing something i love. Today i sign up for GED prep classes to finally get started on finishing my high school education and hopefully be able to start taking college courses in the fall. For the first time im doing something with my time that i feel is worth while and meaningful, im writing a blog for CBS which is beyond what i ever thought id accomplish.

In a way my sickness is both killing me and saving my life. I gave up for a long time on myself. I let life get the best of me and i sunk down, i didnt have the support or encouragement that i do now though either. Im proud of myself and the decisions im making for the first time in a long time. Im going to make something of myself despite my illness. Im going to hold from transplant as long as i can and accomplish the most i can and post tx?? the sky is the limit for me i have no doubts now.

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

Plans For The Year

For the first time in a long time i went to a Mary Kay meeting and we talked about goals and staying positive and how your attitude can determine your life and I kept thinking of ways to make this year as amazing as last year and i have so many things i wanna do and as soon as i get excited about it all i remember why last year was so great...because i knew i couldnt do all that this year! Lol so i need to take it down a few notches on the trip planning which is hard because i reeeeally love going new places, but i thought id come up with a few goals and things id like to do this year So here goes :

1).....a few trips. LOL! But not like last year so i think i can plan for a couple without overdoing it! I wanna do the spring holiday with Allie for sure. Were so excited for that and although we were excited for Bermuda and island shenanigans i think staying in the U.S. is a good idea, not only would a road trip seeing new places and things be really fun but at this point im not sure leaving the country is smart at all. Setting up oxygen and medicine transfer and everything would be tough and If something happened there id be in trouble so road trip it is!! (def have out of country plans though for a later date). I also wanna do some smaller ones like Nashville and i think we were talking about California too.
2) I wanna get my fev1 up past 35%. It seems almost impossible lately but i think i can do it. If i focus really hard on getting my weight up and keeping it up, and really put work into exercising and making sure i dont miss one single little pill or treatment i think i can do it. I wanna put transplant off as long as possible because to be honest it terrifies me and i dont want it. Im really motivated to do this and im gonna work my ass off to get the results i want. Making serious changes to reach this goal!
3) Stop letting negative people and situations influence my life. Im happy overall but there are a few things that really get me down and I finally feel like im ready to clean house and get rid of the negative relationships i have with some people. Im ready to let go of all the things that im hanging on to even though i know they're no good for me. I know that ultimately itll make me happier and so its worth the sadness of letting those things and people go and moving on with my life. I have so much good in my life i need to focus on all that from here on out. :)

Maybe ill make some more but for now thats it, those are my goals, a few things i want to accomplish some in the next few months some throughout the year, very happy with this list and im determined to stick with it!!