sitting ducks

they say positivity is key, we need to look forward we need to look for the light in the dark of the situation. i always try to find the silver linings. i close my eyes and i list off the things i have. i list off the people in my life who have stood by me through thick and thin. i take myself back to moments in time when i didnt think that id ever be that happy or that content but there is still a darkness in my life that creeps in like smoke under the door of a  burning building. my room isnt on fire but the smoke chokes me and the windows, stuck shut, make me feel like theres no escape. we are not stronger than the rest of the world we just have no choice but to continue on and do what we need to do to live.

this morning waking up i felt an annoyance that rolled over from the night before. my medicines cause havoc on my mood. i can cry and i can laugh in the same 5 minutes. i can be so angry i feel the pressure build up until i want to explode and i can hit lows that i didnt think were even possible. i am content at times, although lately those times have been a bit further apart. my self love is fading as my body image changes. weight gain and moon face makes me hate the mirror, getting dressed can cause stress as my closet full of clothes stretches tightly and jeans dont zip up like they used to just weeks ago. this is the ugly side. this is the side i dont normally post.

my sister once reminded me that facebook is a snapshot of life. its a glance into others worlds and its not accurate. people will post what they feel proud of or happy about you dont see the tears and you dont see the crushing depression where they sit in bed for a day. you see the smile in a hospital bed when friends visit during the day but not the tears that come at night when the loneliness creeps in.

today is a hard day and i dont feel like sugar coating it. i feel like screaming at the top of my crumbling lungs but at this point i dont think they could even handle such a feat. i need new ones, but the hoops i need to jump through are getting smaller and harder to fit through. im currently still inactive due to said hoops and it scares the hell out of me that im not even just waiting but sitting. im a lone duck in a clear pond with a rifle aimed right at my head and i cant do anything about it.

transplant is my last option. im end stage. my life expectancy is under 2 years if i dont get lungs. its scary and im scared. being on hold makes it worse. my anxiety is through the roof. nobody tells you how emotionally hard this is, you get folders and books and info packets and attend classes but nobody tells you how draining waiting for an organ is on you.

like i said, im not stronger than you. im not inspirational. im living my life and trying to extend it as long as i possibly can but there are days where i wish i could push a button and end it all. hospice has crossed my mind. im tired. im depressed. im barely hanging in because i want a life back where i wake up with energy and take on a day. i want to have a job i want to have a family i want to live like the lot of you. my stubbornness is my lifesaver, but its not extraordinary. its not that im some sort of hero for going through it all.

rant over.

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!)

Orkambi and Health Update

The last time i was at transplant clinic i talked to my doctor about how well my lungs were doing without the bronchial valves i had to fix my recent lung collapse and we agreed that if i can get my lung function over 30% then i can go on a hold from the transplant list. Well my next appointment is in March but 3 days ago at my regular clinic I blew a 31%!!! (i only got above 30 for one out of 3 but it still counts!!) I am beyond excited with my progress! From breathing with one lung to possibly going on hold, from about 105lbs to 124lbs, im kicking ass left and right!!

Blowing away the docs!!! (pun intended!)

Except for the past few days....Ive officially begun taking Orkambi. The newest drug to come out for CF. While all the studies were done with people over 40% lung function, some with lower numbers have still seen results. People warned me the side effects were brutal in the first few weeks and they werent kidding. Sweats, chest tightness, shortness of breath, body aches, coughing up an amount of mucus that i didnt even know could exist in a single body, no sleep, and lower effectiveness with my anti anxiety, anti depressants, and sleep meds. Luckily i felt only half as bad as day 2 so im pretty confident i lucked out on the side effects front!!! For a shot at even healthier lungs i can handle this but i am scheduling an admission in the next week for a tune up. I havent been feeling the best and i wanna catch it while its early so it doesnt turn into anything more serious.

Feeling Orkambi at its worst!

All in all im doing really well thanks to a new diet, lots of exercise and workouts, and being on top of my meds and airway clearance every day. After the side effects wear down and im done with iv's theres no telling what my numbers will be, but im pretty confident in this new med and myself and when March rolls around ill be ready!