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!)

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!!! 

There Are Multiple Kinds of Stress......

Today i had an anxiety attack. I couldnt breathe. My stomach was sick, twisted into knots that seemed permanently tied. I felt the heat in my face trying to hold back the tears pushing their way through and for small droplets of water theyre decievingly strong.


The entire day ive felt a bit tired and worn, ive felt the pressures to get better and kick the cold i had been fighting this whole week. I felt like my health was spiriling back down and the inevitable time alone in a hospital bed walking the same circle through the halls sent a slight wave of depression over my already struggling mind. This is medical stress.

Today i had an anxiety attack. my negative thoughts raced a million miles a minute, far too fast to even give the reasonable ones a fighting chance at being heard. I thought about my weekend and feeling like an inconviniece with all my medical equiptment and treatment times, i felt bad because a sinple 5 to 10 minute walk would have me bent over the side walk dry heaving from the intense coughing fit id have before i crossed the half block line. This is social stress. 

Today i had an anxiety attack. I realized i rely too much on one person like hes the last one on earth who can calm my nerves, although sometimes i feel like thats true. I forget he has a life of his own and its taking off faster than either of us thought it would. The joy i feel that his life is on track and that hes finally happy is overcome at times with feeling left behind, feeling pushed away even if its not true. Thats just where my mind goes. The reassurance becomes less frequesnt and the silence on the other end of my panicky text seems to go on forever. This is personal stress, as in my personal life. The things i hold most dear to me. 

All of this had somehow combined within an hours time tonight, blending together all the aspects of my life and twisting them like a hypothetical pring tornado ripping though the perfect town i imagine in my mind. My brains main street of friends, family, and love blown to pieces only to be picked through when the calm came and the storm was over. I feel as if fragments of my life are slowly being rediscovered from under the piles of debris but to rebuild from this will take time

Im not ashamed to publicly show the devistation that seemed to come out of nowhere, triggered simply out of nowhere. I believe its a part of life to feel stress adn anxiety but i also know that its not normal to feel hit by a granade. To have your breath taken away so sharply all you can do is sit on the floor and wait for your medicine to kick it, breathing deep, focusing on small objects till your mind eases back to normal. 

CF life comes with lots of side effects, i see doctors every week sometimes multiple times in a day, but what i wasnt prepared for was the mental aspect. All i can do is do my best to handle these situations on my own. Not everyone can handle a sick girl. Mentaly or physically. Thats just how it is. 

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

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

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

anyways....

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

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

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

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

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

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


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

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

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

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

Im Rachel Whidden and these are my excuses.

ex·cuse

verb

ikˈskyo͞oz/

1. 1.

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

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

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

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

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

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

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

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

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