I worry. i hope.

I wake up, my lungs hurt.
i worry.
sleep till 130, wake up again. gathering my meds i cough too much.
I worry.
my insurance isn't covering my home o2. I'm trying to fix it fast but I can't afford to breathe.
I worry.
my homework is really hard amd I have class and must stay on schedule to start I'm the fall.
I worry.
my mother has given up on being our mom years ago, yet it's somehow me and my sisters reaponsibility to fix her problems and life now.
I worry.
i dont get anything in class and I'm scared to hold the class up.
I worry.
I can't walk to my car, my lungs are burning like they're on fire and I can't inhale.
I worry.
I need gas but the $2 I'm my pocket won't do much good.
I worry.

I'm home and the stresses from the day, the day before, the day before that....it all adds up. all the worry. all the stress. it's piled on to me and I feel the small panicky feeling sneaking up. the one id get as a child stuck in my snowsuit slowly getting hotter amd hotter while I franticly put on my boots and gloves so I could lay in the snow, so i could get some relief from feeling like a small rodent trapped in the walls pf a burning house. I'm restless, im uncomfortable despite the mountains of pillows and warm blankets I'm under, with the cool air from the a.c. balancing the temp in my room perfectly.

anxiety sets in full force, I know it's late but I text a a friend, more than that, my rock really. the only person who knows how to handle these situations (which started last year during my 3 month club med stay). he doesn't judge. he says everything I need to hear and makes sure I'm okay before going to sleep.

my life, at this moment, is feeling out of grasp. the more I feel better the more responsibility I take on and I'm turn the more stress builds up in my life. clogging my head and running my thoughts a mile a minute. this doesn't help my health. stress is a serious medical problem. my anxiety and my depression are overwhelming. my Xanax use barely takes the edge off.

because I worry. and i dont know how to stop. this ia another obstacle I need to climb over to continue my journey to a better life. tonight however it's going to consume me and my thoughts. I will worry.

but then I will sleep, I'll wake up to a puppy, I'll make a big breakfast, I'll study hard and do my best to get the ball rolling on my insurance issues. I'll do what I can to eliminate the worry. I'll hope it works.

I'll hope.

ill hope.

ill hope.

ill hope.

ill hope.

ill hope.

and soon, the stress and the worry will calm. the anxiety will lessen. my mood wont flip on me out of the blue. ill be back to watching the sky catch fire over the lake that lines my beloved city. Ill be walking my dog down a forest path blissfully unaware of the world around me focusing only on the breath my lungs are allowing me to breathe. 

i wont worry.

just hope.

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               

The Other Side of Your Support System

"Support system : a network of people who provide an individual with practical or emotional support." 

It sounds so serious at times, it sounds almost intimidating to me, and while i like the idea of it, the idea of a group of people in my life who together make up a system of constant love, support, and encouragement i also know that for people living with challenges like, but not limited to mine, this system can be very complicated. I'm not saying that the average healthy person doesn't have social problems but adding in chronic illness, constant hospitalizations, and stress through the roof doesn't necessarily help. Going into transplant one of the things they asked me about on my very first appointment was who do you have that you can lean on for support? Who do you have in your life that you can talk to, vent to, who can help you in hard times? My list went on and on. I had everyone. I listed my sister who's been my absolute rock for years and still is. Shes the only person i can honestly say i have absolutely zero doubts about leaving me in any way shape or form and who would run through a brick wall if she needed to. Shes strong as hell and shes a constant source of love and support. I listed my parents, who despite our rocky pasts and admittedly rocky present can be counted on for a certain level of support and help. I listed all of my friends and i listed my boyfriend because despite the hundreds of outs i gave him he swore it was worth it. I was confident in my list of people i was confident that this would be hard but that my support system wasn't something i had to worry about. Turns out i did. Here's the complicated part, the last 3 months I've gotten an out pouring of support online from different people, communities, companies, you name it all on my side wishing me well letting me know they're in my corner that they're behind me in my fight 100% and reading the love pouring in from all over the world melts my heart. To know that complete strangers care enough about me to to take time out of their days to send me a message or send me a package or a letter to brighten my day blows my mind!! Yet at the same time the people who i see on a regular basis are here feeling the stress and its overwhelming for them. I always thought of the people around me as the true heroes here, because while this is my life and i have to live it they have a chance to walk away from it and they never did, but lately a few have taken that walk. So while i have this online community rooting for me every day my personal support system was crumbling fast. The world keeps moving my friends have lives, they're 25 their finding their dream jobs, getting married, having children, going out on weekends, living it up like they should be and its not always ideal to sit in a hospital room. My boyfriend is an amazing man, I've never met anyone so caring and loving and constantly there for me no matter the situation but after 3 months stress builds, and he has his own well being and life to worry about and i cant be there to be a part of it and that puts a lot of strain on us as a couple. I  was caught up in my own version of what my support system was and what it meant that i forgot that the people in it are feeling this pressure too. I became too reliant on them. I lost my own sense of strength and i forgot the girl who walked into clinic head held high knowing i was gonna kick ass and come out a healthier person, able to travel, and live, and breathe like everyone else. Your support system can only be as strong as you let it, if you lose support for yourself they will feel it. its okay to lean on people and to need them but they cant be your only source of good. This process took it out of me, but I'm hanging in there. It took losing the people i leaned on the most to realize how much I'm capable of leaning on myself and since then I've been happier and healthier. Find the balance between asking for help and support and relying on the people around you for everything. Don't underestimate your own strength and will power, don't get to the place where your sitting in a room waiting for those people to come back because you just cant be you without them. Recognize that you need to support them too, take a little walk in they're shoes, understand the stress that this puts on them, and your rock solid support will stay diamond strong. 

People love you, let them when you need it, realize you can love yourself just as much though. <3 

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

Life Keeps On Changing, Tell It To Stay Still But It Wont Listen

The timer went off before we expected hahaha

They say time flies when your having fun, and whoever "they" are, they knew exactly what they were talking about when they said that. I had so much fun this weekend with Al! By so
me miracle i felt great all weekend. I danced like i could at 21, i laughed without stopping to catch my breath, and i met someone who made me realize that even if i never see him again, i WILL be happy with someone else again, Allie was right about that one, shes pretty good at stuff like that :). But was over before i knew it, and while i still feel pretty okay right now i know its temporary, it always is. This last year flew by, i feel like just yesterday it was NYE and i was excited for the year to start and i didnt realize that a week later my life would change forever. The flu i caught made me really sick and ive never fully came back from it, it was the scariest month of my entire life.This last summer i didnt take a single day for granted and i went on a lot of vacations and took every opportunity to see my friends and family and now its the end of November, i dont know where all that time went. I very rarely say no to plans and try to get whatever i can out of life, but i dont think itll ever be enough. Ill always want to do more, see more, go more places and no matter how long i have it will always be over too soon! Just like this last year im scared ill blink and be at the end of the line just wanting to go back, wondering where it all went.....such a weird feeling. Real weird.

Alright. Pity parade over. Spamoni im out!

Great Weekends With Great People!

Well its been quite some time since my last post (due to a rare spike in my social life...and also a not so rare lung infection) but things overall have been good! Im slowly starting to figure out how this site works so maybe my blog can be slightly more interesting haha. Anywhoooo so i did get a little sick and during the week i was pretty out of commission but between all the rest i got then and the antibiotics i was put on at the beginning of the month i still felt okay enough to go out on the weekends with my two best friends which was amazing and much needed!! I absolutely love going out dancing with them its like for that night all the stress i feel about meds and eating enough and not feeling well just goes away. im a normal 23 year old girl out with my friends and it feels amazing...except when i cough up a lung haha but in general i mean lol. Lately its been tough to cope with my CF my latest pft's showed an FEV1 of 28% and i can def feel it. I dont know how its gonna be when i cant do things like that anymore its gonna be hard to accept and i know its coming and im really dreading it. At 23 i shouldnt wonder how many years i have left but i do, discussing transplant with my doctors is scary for me cause i know thats a last resort option and it means im running out of time with the lungs that i have and it means that the doctors know i wont live long without something drastic. How is anyone okay with that?? Sticking with the theme here i dont think i could do this without Allie and Michelle. id probably lose my mind and i can honestly say that i couldnt deal with all this without such an amazing support system, mind you its much larger than two people but they make all the difference.