to the doctors who know it all and the patients who live it

After being admitted on Monday morning ive had the same issues i always have when im here. orders for things i dont need or use, medication mix ups, and the worst of the worst-bad allergy management. I was laying awake last night (half clawing my dressing off and half being super careful not to cause its the only one i have that i can semi tolerate) i started to think about why a certain person on my tx team isnt really doing much to help get me the relief that i need and i came up with this.

I like to use a comparison of students studying say, spanish, in high school or even college. the doctors and nurses are like those students. studying formal language and dos and donts of a culture they've never seen. they watch films of life in Spain that were made in 1992 with horrible patterned t-shirts and over excited kids giving thumbs up all the time. worksheets and text books tell them everything they need to know and that information is gold to them. then there's us, the patients. we're the students who take a summer abroad in Spain. we personally feel the weather, the energy of the country, the feel of local life. we pick up the day to day language and lingo and learn expressions. we live and breathe it and we place ourselves in the middle of it all and that type pf personal experience is more valuable than anything a classroom could ever teach.

tie this in to life with a chronic illness. my doctors have spent years and years studying the medical field and cystic fibrosis, they know a lot, I give them credit for that, but they've never been immersed in the day to day c.f. life. I'm the student abroad, I've lived this life since day 1 on this earth. I know the books and I know the definitions of my disease but most of my knowledge comes from experience. I know my body inside and out. I know what to expect from every medicine I take, which ones will give me what side effects and which ones I can't tolerate. I know when my body needs iv's and I know my allergies and I know what to do to fix them. I'm not a textbook I'm an individual with individual needs. all I need is an open mind to hear me out.

it's rare to find a doctor who also "studied abroad" and understands that people living with illness on a daily basis, not just c.f. but any chronic illness, probably knows just as much if not more than them about the disease in question. we know what we need. what our bodies need to get better. we know our highs and lows. 

i believe a big part of the issue is that doctors tend to get big heads. they have a professional degree so when someone comes walking in and telling them what needs to be done its almost a bit of an insult in way. theres a power struggle between the patients and the doctors over who is right and who is more qualified to make decisions and unfortunately the doctors win every time, because of said degrees. (which all spoonies should totally have cause were pretty damn qualified to know what is and isnt good for us haha)

my specific reason for this is due to over a year of pure frustration and pain from allergies to both adhesives and cleaning agents. by the end of any 2 week course of antibiotics my chest is red. covered in blisters and bleeding, looking almost like the skin of a new burn victim. the allergic reactions i get are slowly getting more intense the more i need ivs. over the course of 1 year we've established that a dose of benedryl doesn't cut it. my skin falls off to the point that I'm left with scars. my arms and chest covered in little dots from where my skin has burned away under the dressing meant to protect me. hydroxyzine helps but still my chest is still torn up. iv benedryl is the only time I've felt relief from the constant itching and burning and it's frustrating that my nurse practitioner refuses it to me every time, because she is the student in class. her textbook tells her that it's a don't. however the one experiencing this annoyance first hand is in a constant state of discomfort. i can understand that her books tell her it has addictive properties, and it makes sense to be cautious. i have a fear of addiction since ive seen how it ruins lives and the lives of loved ones around you through first hand experience. i am slightly confused why with any pain they feed me morphine and norco like its water yet this one is so far out of reach. (id take pain over itch any day, pain i can handle. a persistant throb is more tolerable than intense buringin that keeps me awake till all hours.)

I know many of my spoonie family has gone through similar situations. they feel ignored or uncared for, they are labeled drug seekers when they go into the ER. their symptoms are not taken seriously. it's an issue that people in the medical field need to be aware of. 

there are also always 2 sides to a story and on one hand i understand the uncertanty (especially in an er setting) where drug seekers do tend to be an issue, however if your patient tells you specific issues, or tells you they have a condition you should either get someone who knows more about it or do a little info searching on your own. we need to start being treated like people who matter, whos symptoms are very real and despite the risks sometimes we just need to take that chance for relief.

I cannot tolerate these allergies. something needs to be done if I'm to finish my courses of treatment. i need a team that is proactive. I need doctors who understand that each case is different. I need a team to look at me and my personal needs and treat them personally. c.f. never had 2 cases that are the same, and so we shouldn't be cared for the same. Theres no reason i should have to put up a fight everytime i need something. 

classes teach you a lot. books are filled with info. but talking to a person and understanding what they tell you is just as valuble. gold, some may say. sick of the tape and the wires and the tubing, hopefully breaking out soon and my next post can be about something amazing haha, ill hang in there!!

CF Life is Hard, But Not Just for the Patients, Welcome to the Support Role.

"I didnt mind waiting, sleeping in a chair isnt that bad, its watching you in that much pain that hurt me the most." - Shawn after spending 8 hours with me in the ER and then another 45 mins in my room once i was admitted and settled in.

Saturday night i felt good. Despite my port not working i had gotten a midline placed so i could still stay at home and not miss any of my plans or classes and i was very grateful for my medical team for giving me that option.

A little past 1am while out celebrating my beautiful smart perfect little sister, Hannah, my arm, which was already sore since placement, was in a great deal of pain and very obviously swollen and red. At that point i knew something was very wrong but i did my dose of ivs and headed into the er, driven by my friend Shawn who has been so amazing since we reconnected (taking me to almost every appointment i have, holding my hand when im nervous, scared, and in pain, and always making time to stay with me in the hospital so im not alone). Once there we sat waiting for 7 hours total until they decided i needed the line out and they were gonna put in a peripheral iv to give me my antibiotics and work on fixing the damage to my arm and getting me a new port.

It was very painful and if i fully extend it i get shooting pains all down the arm and my hand goes numb and i get pins and needles, which leads the team to believe ive gotten severe nerve damage from the meds going into the midline and instead of staying in my vein, leaking into the muscle in my arm. So Sunday morning i started morphine to control it, and was admitted.

Next step was to get my port replaced as that seems to be the only option especially through transplant ill need lots of ivs and blood draws. They bumped me in to surgery in the IR on Tuesday (being a holiday weekend made the wait a little longer) and while under twilight sedation i got my shiny new port.
7 hours
The site is still painful and since ive essentially lost function in my right arm, having a new port on the left side doesnt help me get even the smallest tasks done. So heres my tie in.

Shawn, Nick, Katlin, Jake, Sarah, and countless online friends have stepped up their game. the second they knew what i was going through my phone blew up with messages and texts and my facebook was filled with well wishes and prayers that i heal soon and the pain is only short term. These people are all working their butts off to help me continue as normal of a life as possible. I tend to think at times that because its happening to me they cant possibly understand, and perhaps they dont. What they do instead is ask questions, they learn how im feeling and they take the time to listen to my doctors and nurses and do what they can whenever they can to help me when im in need.

Bringing food and coffee to the hospital, helping me run errands and pick up prescriptions,even helping me to clean up and take care of my dog is showing support and love unlike any other. I have a huge support system who goes through CF just as much as i do. They may be able to breathe but the hurt and stress that comes with watching me struggle so hard, the joy they feel from seeing me succeed, and the pain they feel when the tears begin to fall down my cheeks is all to real for them,

CF is not always personal, it takes a village. Im forever thankful for mine and i cant imagine the feelings some people go through who dont have that sort of support and love in their lives.

There is a small flip side however. There will always be friends who dont understand how much effort i put into my day to day life and will still get angry if i dont see them or talk to them much and i suppose i understand that too. My life is a never ending green light of go go go between plans workouts school and everything in between. Ive recently cut out some very negative presences in my life and ive noticed my stress begin to ease.

The ones left sleeping in hospital chairs holding my hand for 7 hours are truly selfless, the ones who wake up and leave on a moments notice to get me to an appointment or a school seminar because i cant drive, the ones who keep the house clean as can be and dust free for my fragile lungs, the ones who spend countless hours checking in on me and making sure im doing as good as can be and are always there with an offer to do anything at all the make my life easier. Its people who know i need help and send me goodie bags with anything they can think of to make me as comfortable and happy as possible.

Friends and family also aside theres my nurses. Nurses who go out of their way to page doctors over and over to get what you need, the nurses who literally tuck you in at night, the nurses who take their lunch break to watch a little bit of tv with you when your feeling lonely. They crack a joke just to see you smile for even a second and are always on your side.

Support systems are the glue that hold me together. I could never do this on my own. I could never go to a party downtown and end up in severe pain 3 hours later all alone. I encourage you to reflect on your support systems. note the people who are always there for you. The ones who whole heartedly understand, and try their best to if they dont. Surround yourself with positivity and your life, while maybe shorter than most, will also be more fulfilling.

CF caused me hell these past few days but i dont think im the hero. They are. They always will be. The ones who have my back through thick and thin and the ones who love me unconditionally. Thanks to them i was out of the hospital and back in class (dont worry i got a ride, there was no Norco driving for me!!!) in no time. Ive said it before and ill say it again, nothing in this world is going to stop be from achieving my goals!!


.

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

When You Reach Your Breaking Point: Its OKAY!!!

For the first time i'm realizing how severe my illness is. This stay I've had a lot of pain, coughed up a decent amount of blood, coughed to the point i need cough medicine just to get a little sleep. I have a ling and sinus infection causing debilitating headaches. I'm getting short of breath after just 1 lap around the unit. My anxiety is sky high and I've felt more depressed lately than i have in a long time.

Do i sound like I'm complaining? Because i used to thing that too. Ive come to realize that its okay. Its okay to break and want to vent about all the things I'm going through. Ive realized that its okay to have days where you need to depend on the support of others. Being strong doesn't mean putting on a happy face all the time it means going through these days and these low points and waking up the next day ready to do it all again. Strength is being sick to a point you just want to give up but taking all our meds and doing all your treatments and forcing yourself to walk and exercise because you want to beat this. With every fiber of your being you want to live no matter how terrible you feel or how many challenges you face.

Tonight sucks. that's it. it just sucks both physically and emotionally but I'm gonna lay down, take some deep breaths, remember the people who are behind me every step of the way, and fall asleep knowing tomorrow might be worse, but hope that it ll be better. One thing i know for sure is that ill wake up swinging. Ill fight for every breath. Ill fight to see my sisters kids grow up and for my future. Ill fight for those new lungs and i will never give up.

That's strength. Anxiety and depression is not weakness. They don't get to win. CF doesn't get to win. I do, and I'm fiercely competitive.

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!!

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

Minor Set Back

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

xx

Hospital Day 2~3 !!

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

MONDAY!!!

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

She makes the best faces!!!

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



TUESDAY!!

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


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



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


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

im sorry what?!?!

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

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

Hospital Day 1

Well day 1 was frustrating to say the least, i was put on the 12th floor which seems like itd make sense because its the respiratory unit but im always on 14 so i didnt have my usual doctors and nurses, im sure their just as good on 12 ad on 14 but they dont know a thing about cf! The doctor kept asking if i was near sick people or construction cause she couldnt understand why i was having trouble breathing if i wasnt sick lol i told her its just normal cf stuff like 5 times haha. Luckily my first nurse has a daughter with it so shes familiar from a parent stand point but then again i dont know her daughters situation im sure its different as everyones is and so she still wasnt sure how to treat me, she got me a room on 14 though so i moved up there around 7 :) My RT last night was amazing too he was hilarious and i had never had him before but he told me jokes and i think laughing was almost better treatment than the physio he did haha. So the day wasnt too bad but then during the night i had a lot of trouble, lets list off everything that went wrong from 9-9 shall we?

1. My nurses name was Ann but she had never seen parks and rec so any and all quotes i threw at her would be pointless.
   
   
   
   
2. I had a fever and crazy headaches all night but there wasnt an order for tylenol so there was nothing they could do but feel bad for me and give me blankets till the doctor came in today.
3. I miss my precious baby puppy.
   
4. They had to draw blood at 4am and couldnt find a vein and had to try a few times before finally getting a good one..in my hand where it hurts the most.

Luckily my fever broke early this morning so im okay now :) Plus my favorite nurse brought me breakfast from Panera and a white chocolate mocha so my morning isnt too bad so far, still tho i fully intend on napping most of the day. I mean, when my mom and Sarah arent here and after i go down to get my picc line placed haha. Happy Monday everyone! 

Clean Out Time

Well its been about 4 months since my last hospitalization which isnt too bad if i do say so myself! But im back :( I came in last night (after a fairly unsuccessful, but still fun, night out at Rush and Division with Allie <3) I had some pretty severe chest pains and a TERRIBLE cough! Not to mention my breathing was shit like usual, ive been trying to kick this cold for over a month now and i guess it finally got the best of me. Sarah took me in to the er around 4 and i got a few breathing treatments, x rays, 2 blood draws, a flow of 4 liters of oxygen, and an iv set up all by 7am. Michelles mom was working in the er so i got to see her shes so sweet im glad she was there! Still i am NOT happy right now!!

So whats the plan??

Ill keep my iv until tomorrow when the surgical team can place a Picc line (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter) and then ill do Tobramyacin and zosyn through there im not sure if theyll add any others but thats all i know of right now, ill stay on 4 liters of oxygen 24/7 unless i have trouble then theyll turn it up to 5-6, and ill get breathing treatments every 4 hours during the day, and hopefully ill get over this cold and it wont turn into pneumonia. Time to get a little sleep ill update daily tho! Love to you all!!