the invaluble friend.

today im thinking about friendships, specifically friends of or in the chronic illness community. friends are different when your chronically ill, they need to be a certain kimd of person. not that there's one type of person who's better than another, just in certain situations one needs understanding, care, and patience and these are traits that can be hard to find. 

i unfortunately see many posts on my news feed or in different groups im a part of where people feel left out of life because they cant always keep up. this can be heart breaking, not just the feeling of being left out of an activity but because its due to something so far out of your control. i myself have had many experiences with this feeling and its not one i wish on anybody. I think the idea of being sick for most people is a few days on the couch with nyquil and soup, but they can push themselves when needed. things get complicated when your every day is hard and when your sick its almost intolerable. for example, in my own life i like to go to dinner and movies and things like that, but i have a hard time doing these things later at night because im so tired, the work that my body needs to do to just get through the daytime is exhausting and so i either have to miss out on plans, or i go but i cant really be the energetic person my friends knew me as before. (ive now fallen asleep at multiple outings and cubs games.....). Theres also the times when i know i should stay home but my FOMO gets the best of me, i go anyways, and end up worse off. 

people within these communities are (almost) always there for you and supportive of this because they understand wholeheartedly what being in that position feels like. its a blessing and a curse to have so many people understand you and your situation but not be able to see them or hang out with them and be around people who really get your situation. the outpouring of support at times from these communities can be overwhelming. the love from complete strangers is mind blowing and very humbling. Before i joined any of these groups i felt very alone in my diesease and my situation and finding out that there were so many people walking in my shoes was something ill never take for granted. the people ive met online have become life long friends. 

there are exceptions to this situations where one might feel left out. there are people out there who see you for you and not your illness. i have a best friend Katie who would take a sleepover at the hospital with me over a night out. painting our nails and watching our favorite shows and having lattes in the morning can make a night in the hospital feel like a normal night at home. the fact that shes totally fine with hanging out here and missing something else going on elsewhere that might be way more fun is not something that is lost on me. i have Jake, a man who i used to date and while things didnt work out due to our lives moving in different directions he has continued to be my absolute rock, doing everything and anything to keep my healthy and happy. hes always down for a movie night on the couch in lou of a few drinks at the bar and a home cooked dinner when going out just isnt in me. hes one who will always invite me out and make me feel included in events even though he knows theres a pretty good possibility that well both end up spending the night sitting down and not really in the action. i have a frind Nick. a man who ive known for years adn years who never hesitates to bring by food when im sick, cheer me up with his goofy animals he always brings me, and never once complained about pushing me in a wheelchair all over comic-con for an entire day just so i could meet the weasely twins hahaha. he has accepted every part of me and my illness the good and the bad since day one and to this day i can say hes definitely someone i have total trust in to always be there for me. hes never wavered. i have my little sisters, my best friends in the entire world, and not just because theyre family but because i can feel how much they love me every time i see them (which is much to far and in between). i have my older sister who never ceases to mother hen my ass when i need it, cook a meal when im sick, help keep things clean, and help me manage my appointments and meds when my brain fog kicks in. shes always inviting me to dinner out with friends and did i mention shes an absolute blast to hang out with?? i can always count on laughing till i cry just about anytime i hang out with her!!! my point is that there are good people out there. the invalubles. the ones who make this life worth it. 

on the flip side yes, theres the partiers. the ones who stay out too late and take shots like they contain the key to immortality and if you cant keep up the invites out become far and few between. it happens but dont dwell on it. see it as an oppertunity. the stress that it caused you and your health yo try to keep up with these people was not worth it. nobody is worth your life you are far too important for that. in life people come and go, its inevitable. find peace with the support and love that you do have and hold on to it dearly. focus on the good parts of life. focus on the people who love you and the people who are always reaching out to you. those are the ones that matter in the end. (but by all means if the party pants fit for the night put those suckers on and wear this shit out of them, we all deserve a night out! even if its to remind us why we never go for nights out hahaha)

try not to get down on the days in the hospital with no visitors, even though thats a hard one to swallow, dont dwell on that friends who always seems to be too busy for you, shes not too busy for you shes just busy with life i almost guarentee it. please try to not jump to conclusions and stress yourself out over your social life, it will pick up and it will die down you need to find the medium. this is somethingi struggle with as well im not just preaching about it for no reason i promise!!! 

your going to miss events, birthdays, holidays, anniversaries and weddings. your going to miss a lot. its your life, thats how it goes, its not fair in anyway, but thats life, its never fair you just need to find those loopholes that make it all worth it in the end. remember its not whats on our table its whos around it. mine is filled with love, once i stopped to notice.

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.

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!!


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