Health/Life update!!

i apologize for the lack in posts, however (pardon my language) my life has been a clusterfuck this past month or so.

Ive now been on ivs 6 of the last 7 weeks but am hopefully done on the 16th (4 more days!!!) and can be free of needles, crazy itchy port sites, and antibiotics that are due at the worst times! during this time my meds have been changed 3 times and i cant say im happy with any of them, one made me extremely feverish, sick, and made me feel pins and needles throughout my body for about 5 or so days till i finally couldnt take it anymore and was switched over to a med that made me so dizzy i couldnt walk for a week and now my face in numb and i cant eat or even keep my tube feeds down....win. *rolls eyes*

luckily im beginning to start climbing the health ladder again but im not quite out of the woods. I have appointments with a psychiatrist and a psychologist on monday to help conrol my stress, anxiety, and depression that seems to have gotten worse ten fold lately, then an ENT appointment on thursday to make sure the sinus infection i seem to have had for about 89345093845342 years is under control, and then the cherry on top : transplant clinic on friday. this is a big appointment because after all the ivs if my lung function has continued to drop, reactivation on the list might be necessery. im holding out as long as possible but im not sure how much longer that will be.

the most upsetting part is that this all came out of nowhere, a post not long ago i was talking about how much i was loving hiking and being off of oxygen, i was making waves in my workouts and i was stronger than i ever have been. this is a prime example of how one small bug can change your health overnight. It can come out of nowhere and bite you right in the ass and next thing you know your hooked up to ivs, feeding tubes, oxygen, with nebs going while you watch the x-files in bed for 10 hours straight only getting up to wobble your dizzy ass to the bathroom and back.

its been a ride. somehow through all of this shenanigans i also managed to finish summer glasses and im proudly just a few tests away from finally getting my GED!! i plan to finish these last tests on sunday and then ill be all set to start school to become a pharmacy technician!! i only missed 2 classes due to being in the hospital but caught right back up and through hard work and some help from my friends im well on my way! Relisting or not i plan to start my schooling with online classes and a few on campus so that when the time comes for my shiny new lungs i have something to do with them!! (work, become a baller, buy my dog rubies, and take him on a trip around the world. ya know. stuff like that)

ive also just wrapped up a project i did with PAWS Chicago to help bring awareness to rescue pups and to cf all in one shot so stay tuned for that ill be posting it as soon as its done!! Im also working on a few more posts about some topics near and dear to my heart so expect a few of those soon as well!!! thats about it for now, my health update and my super smart self finally getting my book learnin on!! thanks for reading as always, and feel free to check out my facebook page and my instagram to keep up on more current and frequent things, both of which are listed to the right under the about me and stunning pic (im so humble!)

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.

Adulting Awareness Week-Balancing Health and Life

Today i need to talk about a very important issue overlooked by many, Adulting Syndrome. 

Adulting Syndrome : suffering from being an adult with real life responsibility. 

Symptoms : knowing the right thing to do/recognizing daily obligations and actually doing them.

Treatment : suck it up.

The last week or so has been a little bit crazy for me. I started the process of finally finishing my education and getting my G.E.D and starting school. I want a better life for myself, not just financially but also for the reward of accomplishing something. While most of my friends joke about how i get to sit around all day they dont understand how worthless that can make a person feel. I Im ready to making a difference. (and to make enough to buy my dog rubies and an exact replica Sherlock Holmes outfit...but anyways...) My initial pretest scores were high enough that all i need are a few review classes then i can take the test and hopefully start College in the fall!! 

Heres the hard part : I still have CF (duh). The day to day with CF can be hard as is, the treatments daunting and the work to keep my health and fitness in a good range takes time and a lot of energy so adding in anything extra has to be done, in a way, carefully. Its good to push yourself to a certain extent however overexertion and stress can do more harm than good in some cases, and as always germs can play in a big role especially in a large public place like a school.

Although i believe my current health and lung infection isnt related to school or what ive been doing lately (its summer, downtown and beaches are happening!!!) but instead more of a tune-up or a flare up of the bugs i always carry in my lungs i know that i need to be careful with my workload. Approx 5 years ago i had to leave my job because i was draining myself and couldnt handle doing even simple tasks anymore due to the low lung function i had, and ill admit im nervous that ill be doing a repeat performance with my education but i also know how many people i have rooting me on and helping me in any way to achieve my goals. 

Im also slightly intimidated by the other people and the questions i know ill probably get about my port and what it does since its currently accessed. Last time i was in school i hid my disease like my life depended on it and while ive been open about everything my disease is and carries with it i still have that little part of me that is terrified of being labeled "the sick girl". Days when i might need oxygen or ivs are gonna be a little scary to me, but the silver lining is that ill be able to use that to spread a little awareness to my classmates!!

Im absolutely tired at the end of the day and my $1 mccafe coffee holds me together through my THREE HOUR night classes (ugh!) but in a way i feel great. I feel like at the end of the night when i go to bed ive gained a little more knowlege. Ive spent those 3 hours (seriously...ugh) learning and bettering myself and working towards a future i can be proud of. I want new lungs..one day...and i want to live out a life that means something with them. 

Adulting is hard. Its drainging. Its annoying....but its also awarding. Im very excited to see what happens later on down this path!!! 

Cf May Not Run My Life But It Has The Power To End It

I cant hold a job, its almost impossible for me. The amount of sick days would pile up so fast my boss would be dumbstruck, not to mention i cant walk very fast, some days i need oxygen, id need breaks to do nebulizer treatments and at times IV antibiotics, and the toll it would take on me would land me in the hospital more often than ever. Thankfully i can work from home : welcome to life as a babysitter.

My sister goes to school and her husband works his butt off day in and day out doing different construction and plumbing type jobs so i watch the baby and sometimes her older daughter as well when she gets home from school. Im lucky in the sense that i can still earn money and also that to go to work i dont even need to change out of my pjs (my living room doesnt really have a dress code). I make the baby breakfast and then we play till his snack time, then we play some more till he gets a bottle and goes down for a nap. Its not strenuous work and if i dont feel well i can easily relax on the sofa while he toddles around playing with his car and his legos. Its the perfect situation for a girl in my position.

That all sounds great right? I mean it is, but it also makes me incredibly sad. He loves the park, he loves the outdoors, and he loves being active. It breaks my heart at times that i cant be someone who can chase him through the field or hold him for long periods of time when he wants "up". Im stuck in a limbo that i cant get out of. My goal is to hold off transplant as long as i can but that also means more time of not being able to dance with my niece or have cartwheel competitions in the yard.

Looking into his eyes today while he drank his ba before nap time i was suddenly hit with the sad realization that i may not be here to see the inevitable trouble he'll cause when hes older. I may not be able to laugh at the ridiculous things he does that gets him in trouble but we secretly laugh about later. Who will my niece be? What kind of clubs will she join in High School, will i be able to watch her play softball years down the line?

Cystic Fibrosis doesnt run my life but it does hold the power to end it. I need a cure, i need some hope. The Cystic Fibrosis Foundation is dedicated to finding just that and to developing new medicines and treatments to help extend lives. The work they do is fueled by the donations they receive and every donation helps. This year like all the previous ones before it im going to load up my oxygen, take it slow, and walk 3 miles at the Great Strides walk just outside Chicago. Ive spent the last few months developing my team and raising money to help fund this amazing organization.

Ill include the link below for anyone who is interested in helping the cause and the search for a cure. Imagine the fear and sadness of wondering if youll get to see your family grow up, if youll be able to travel, to finish school. Cystic Fibrosis is a villain that always seems to escape, we need to catch it and stop it before any more lives are lost.

Rachels Great Strides Page               

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.

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

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!! 

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.

Donations : Why Its Actually Important

The holiday season seems to be filled with people asking for things, its a time when charities play on your giving card and get what they can and it can be overwhelming and even annoying at times, but heres the thing. They need it. I raise money for the CFF every year at their Great Strides walk event because its obviously a charity close to my heart and i rely on the research and programs they provide to keep me and all my Cystic friends alive as long as possible!! I get angry sometimes at charities that become "popular" and seem to be a fad or a trend or dont really give the donation money where it needs to go because that hurts my own efforts, its hard to know exactly where your money goes at times. Money is tight and sometimes even the thought of giving $5 to something that doesnt give you personal gain is kind of hard, but think about the people who need it. Think about all the people battling to get meds that their insurance wont cover for whatever reason, think about the people who spend birthdays and holidays in the hospital because they happened to be born with a disease that you werent. Your $5 makes a difference, i usually post about things that are bothering me or causing me anxiety or topics i feel i need to vent about but this one is about bringing attention to the CFF and raising money for an important cause. The link to my Great Strides page is below, click it and make a difference for the thousands of people out there who need a cure!!!


GREAT STRIDES 2016!!!! RAISING FOR RACHEL!!

navigating the 20-somethings, chronically ill style.

I'm a funny girl, i have wit, i can make you laugh. I can take your jokes and throw them right back at you without skipping a beat. I'm intelligent. Ill keep a conversation going for hours and really get into it. I'm beautiful even when i first wake up and look like i just got off my flight from Poland after binge drinking for 3 days. I'm 25 years old and I'm single and i have the whole world and everyone in it directly in front of me and here i sit doing nothing with it. I'm not a lazy person i didn't skip college to live in my sisters house and leach off of her. I'm not a druggie who cant hold a job or make a commitment. I'm not a girl who found a man to buy her whatever she wants and spends her time sitting back with her hand out waiting for favors. I'm a girl who has a chronic illness and being sick is my full time job. Lets go back to intelligent and do some math. i take, on average, 42 pills per day. I do, on average, 2.5 hours of breathing treatments and chest physical therapy a day, and each night I'm hooked up for 7 hours to a machine that force feeds me nutrition formula. One week for me is 294 pills, 17.5 hours of breathing treatments, and 49 hours of feedings. Add in grocery shopping. Add in time with friends and family. Add in taking care of myself and my dog, doing things i need to do around the house, running errands, and constant doctors appointments. With my lung function these small tasks become big tasks that drain my energy fast and leave me exhausted. My meds suck my energy, others make me shaky to the point that getting anything done is pretty hard, they mess with my mood and my motivation.

Lets jump to being 25 with the world in front of me. My friends are finding stable jobs, they re moving out and getting engaged, they re having children they re becoming the people that most people become and i love that, i love to see how well my friends are doing and i love to see what they've accomplished but a small part of me is jealous. I should have the world in my hands. I should be out doing great things, but when someone asks me what i do i have to look at the ground and say nothing. I dont do anything. Which of course isn't true i just told you what i do, i keep myself alive and its a big job, but for all intents and purposes in this situation its nothing. The gut reaction is that I'm a bum. I see it in their eyes and yes i can explain all the math and the pills and the treatments, and the whole carrying oxygen around a work environment, and the exhaustion, but lately Ive been saying nothing. Dating is damn near impossible with tubes on your face and hospital visits that last months, but there are good men out there who can look past all that....until they realize that with you a future may not be possible. Kids aren't gonna happen, no white picket fence with 2 babies and a dog. Trying to navigate life is hard, In these years meant to figure out what i want from life and where i want my life to go im barely breathing waiting on a call for new lungs. These extra obstacles are making it even more difficult.....yet I'm not all that mad. I feel like i should be, i should be asking why on Earth do i have to go through this but I'm not. I have a perspective not many people have, I don't work so when a friend is free i usually am too and with limited time in this world i take all the opportunities i can get to see the people i love. I get frustrated about not having an income but i always make it work. Its hard to get a date and hold on to em but I'm a firm believer that a piece of metal i drag behind me in no way reflects my personality and i wont be alone forever. I see statuses about student loans and normal life hardships and i realize that everyone has it tough right now. Its part of being a 20-something, and each persons struggles are just as bad to them as mine are to me, theres no such thing as a life thats just a walk in the park. This is my normal. All i can do is navigate it the best i can and hope that in time my new lungs will come and i can log onto this blog and complain to all of you about how hard it is to be a 20-something in the real world working and paying for college. I think that all in all im doing alright, im getting through it, sickness adds challenges but i always come out stronger than when i went in. Ive got this, and im looking forward to seeing what the rest of my 20's has in store for me. Fingers crossed for a bit more normalcy though!!

What nobody told me about transplant

"She never complained, always had a smile on her face and was positive up till the very end!"

This is a line that ive read over and over, ive read that no matter what happened there was not a single complaint, not a single moment where they didnt give up hope, and that through all the pain they smiled. Well guess what, im calling it. Im calling bullshit. Its easy to look at a facebook and see a snapshot of someones life and someones struggle and see the inspirational side of their fight and its a whole nother story to be the one fighting. For a while i felt like i wasn't as strong as everyone else and i felt like maybe i had given up and i just couldn't do it. I smiled for company and laughed with my nurses and when everyone left i cried, and i panicked, and i wished so hard that i could be the girl who stood strong and knew without a doubt that she was gonna kick ass and this would all be worth it. People like to be inspired, they like a story where the fighter comes out on top but its not always realistic. Prolonged hospital stays come with challenges that are out of our control, like depression, and anxiety, and panic disorders, and feelings of hopelessness. These are the things we don't normally see online but they need to be addressed. The stress that comes with transplant isn't something i was fully prepared for despite my teams warnings. After talking to members of my team and also a few new friends ive made in the online community im a part of ive realized that how im feeling is actually quite normal, especially after close to 3 months, and can be controlled. The decision to start on antidepressants and anti anxiety meds was a big one for me but im hoping that i can get back to the girl who looks at the road ahead and sees nothing but optimism and hope for her new life. Its only been a few days since ive started but im already feeling a difference in my overall mood and my motivation to go for walks and keep myself busy. I havent had as many times throughout the day where i felt consumed by my mood or thoughts and im getting back to relying on my own strength and will power. Over time i had started to rely on my support system more and more to fix my mood and bring me back up and it got to the point where they started taking on the stress i had and they also were getting overwhelmed and feeling the strain and i lost some people who were hugely important to me, and again felt like i couldn't do it ( i plan on doing a post later about the support system issues so ill touch on that later) but i wanted to shed some light on getting my self reliance back and on the common feelings that go with transplant but that you dont typically hear about. There seems to be a certain stigma in America that goes with psychological disorders that if you take a med to help balance you out your crazy or your somehow a lesser person or even thats its just a bad attitude but just like CF is a disease that i cant control, my depression and anxiety are going to be there and its not something i did wrong that caused it, im not just being negative, and in order to have a successful transplant i need my mind to be on the same page as my body, i need to be motivated and i need to be in the right state of mind. Feeling low and feeling alone are gonna happen no matter how many people message you every day and how many calls come in but im not weak, ya know how i know? i said i was done, i gave up, then i asked for help. You dont ask for help when your done. Bad days happen. They always will theres no preventing them but you can help yourself and let other people help you too. Thats not giving up, thats what fighting is, doing anything you possibly can to get through. Dont take the snapshots to heart. Feel what you feel, do what you need to do, and you can get through it but most importantly know that comparing yourself to someone else isnt realistic. You dont know what their battle really looks like!!! 

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!!

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!!

Appointment/Health Update!

Its been a little bit but i hope everyone new year has started off on the right foot so far! Just to update everyone on how im doing I had a doctors appointment today at 3 and it didnt go as well as i hoped but i wasnt admitted so I definitely not complaining. I lost 2 pounds (down to 96 now) and my oxygen levels seem to be staying right around 94 now. My FEV1 was the same 28% as my last appointment and although its disappointing that its not higher im glad it hasnt dropped. The last 2 days ive been coughing up blood as well but its under a couple tablespoons a day so its not a huge concern right now the doctor just said to call him back if it doesnt stop or it gets worse and hell set up an admission right away. Also ive had a bit of a cold for over a month now but since that seems to be clearing up too im not worried :) all in all i think it went okay but it was a pretty disappointing feeling to have worked so hard like i did and still have lost weight and to have my lung function stay the same...i thought for sure id made a difference! This just means i have to work even harder before my next appointment. My weight goal is 100 lbs (i wont be healthy enough for transplant till i can gain and maintain my weight so is really important) and i wanna get my FEV1 up past 30%, its gonna be really difficult and take a lot of time and work to get there but i have an amazing support system full of people who help motivate me and keep me on track and im so thankful for all of them! Heres hoping guys!
xx

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)

Positivity VS Realistic Thinking

After my last post i got quite a few messages and comments asking why i would have the audacity to use the the phrase "when i die". "Whats wrong with you?" "Are you depressed and thats why you wanna die early??" One of my biggest pet peeves is when people are positive to the point where it ceases to be general optimism and crosses over to pure denial. Let me be very clear CYSTIC FIBROSIS CURRENTLY HAS NO CURE. TRANSPLANT IS NOT A CURE, BUT A LAST DITCH EFFORT TO EXTEND LIFE. 

 Thats not me being depressed, or negative, or throwing the worlds largest pity parade down the blogosphere's hypothetical Main Street, its me understanding that as it stands right now i will die from CF. There is no if theres a when and there is a very bold line between thinking realistically and staying positive, and while the line is there it is possible to stand right on top of it and feel equally okay with both sides. I dont see the point in sitting around telling myself ill live to be an old lady when i hover around 30% lung function at 23 years old. However i stay positive that while im sick ill live the best life i can and ill fight my hardest to live as long as i can. Perhaps theyll find a new drug or even better, a cure, and perhaps not but im happy with the life ive lead and im completely at peace with it ending early, because you see everyones life ends too early. Whether your 24 or 104 you will feel like you havent had enough time. You will feel like you havent done everything you wanted to do or havent seen all the things you had hoped you would see, because your always looking ahead. People tend to think of what they dont have instead of what they do. Look back, look at what you did and who you knew, and all the moments you laughed, loved, and truely felt alive and youll realize you didnt need half the time you had anyways. Sometimes when im really having fun, or im with the person i love, or im in a place i never want to leave i stop and close my eyes. Just for a minute. I go through each sense and i try my very hardest to remember everything i heard, saw, smelled, felt, and tasted and i dont let myself forget it. Then when i have a hard day with CF or im going through something particularly unpleasant or painful i go back to it, and its like im there again and i can forget about everything else for a little bit. At any time i can go back to the cold inside of a sea cave on a kayak

with my sister laughing because we couldnt paddle backwards or to the middle of a packed dance floor on NYE with dance music blaring and the floor covered in so many beads and puddles it was dangerous just to stand on when

midnight was the spark that jump started the best year of my life, i can be driving downtown with my best friend with the top down in her red z4 singing to all our favorite songs unknowingly on our way to one of the best nights i can remember or dancing on a bar in Nashville to Jason Aldean just because i could, and when i think about my short life i put all those memories ive been saving together and i realize i dont need more time. Ive lived a better life so far in my 23 years than most people do in 70. To me, thats staying positive. Thats me loving my life. I see nothing negative or depressing about a person whos genuinely happy. I do however wonder why everyone wants me to be so sad......

Untitled.

Ya know whats crazy? CF used to just be a thing. Just a thing i had. A word that meant somewhere along the way my genes mutated and created a problem, only it wasnt a problem. It was just a thing. Im trying now to remember when it became a problem, but the lines are still blurry. The hospital was always there, the doctors, the pills and all the treatments, the coughing...Maybe because its worse, because its constant, or because the people around me are worried. Maybe thats why it suddenly graduated from thing to problem. When i die however, it will immediately return back to thing status, if it no longer causes problems it cant be considered one in itself can it? Then its just a thing, that i had, that meant somewhere along the way my genes mutated and unfortunately, caused a fatal problem

Keeping Secrets

I had just finished reading "The Fault In Our Stars" (by John Green) and i could really relate to Hazel, not with the part about cancer, but we share alot of the same issues with breathing, having to carry around an oxygen tank (although hers is 24/7, mine is only occasionally) and the way we feel about knowing our diseases will kill us one day, but also about the way we feel about having other people in our lives. I dont have to use my oxygen 24/7 yet and so when people look at me they see a normal girl and have no idea how sick i really am and i like that, i always hid the fact that i have CF from people. Part of it was that i really didnt want them to treat me differently and also because as hazel describes it "Im a grenade, and at some point im going to blow up. Id like to minimize the casualties." I always kept the secret, it was exhausting. One day i decided that im getting sicker and sicker and its not going to stop so why hide it. Am i gonna trick someone into being a part of my life? How would i cover the weeks i spent in the hospital? Besides, awareness is key the CFF needs donations and people need to know about CF me hiding it does no good, and for a while i got nothing but support. Everyone was there for me they seemed like they were fine with it but the other day i posted on FB about needing oxygen again and my friend kept telling me to rest up, feel better, and let her know if im feeling up for plans we made for later this week....i need oxygen i dont have an infection, i dont wanna sit at home but she was really insisting i "rest eat and sleep". Explaining to people that im fine just a little short of breath always falls on deaf ears they are convinced i need to sit in bed and sleep all day. It reminds me why i hid it all those years i didnt want this to happen. If i feel i need to stay in i will but i hate that people try to decide for me, also might i add that while they dont invite me out because they are convinced im too sick they also arent willing to come over and hang out with me here. Its hard because i know there is no cure for CF and one day it will kill me, transplant is not a cure if it works it adds years but doesnt make CF go away, and they want me around as long as possible but id rather live a life i love and am happy with than live twice as long and sit in my bed all day resting and eating...it makes sense to me. I also get really weary about telling new people in my life about my CF because it makes most of them wanna run, nobody wants to deal with that and if they do stick around i know eventually theyll leave because i will need them more than they need me, and who wants to deal with that? Nobody wants to be with somone who has an expiration date and i dont blame them, i dont wanna be responsible for promising someone forever and leaving them halfway through. Maybe one day ill find someone / friends who dont see me that way, but im doubtful.