today i wish i could tell my 8th grade self.....

during my 8th grade year we did a segment in school where we were asked where we thought wed be in 5 years, what about 10? what careers would we have what types of lives did we see ourselves living? did we see families or kids? we had to take a little test to see what sorts of jobs matched our personalities and what fields we might excel in. we researched the jobs we wanted to have so we knew what sort of degree we needed and how much experience it would take to get to the tops of our fields should that be what we aspire to. 

i didnt see myself here. i didnt see myself slowly rotting away getting sicker by the day, currently with no chance at a call for transplant due to conditions that are far out of my control. i didnt see myself working for hours on end each day to help innocent civilians overseas gain basic human needs. i didnt see myself curled up in balls of depression on some days fighting back anxiety attacks that threaten to tear my mental well being into shreds. i saw a world of endless possibilities. 

now, today, i see the worlds ugly side and its humanitarian side all at once merging together, clashing like waves on rocks. each side in a never ending battle the waves continue to push for a better tomorrow and the rocks steadfast in their ways. my work through my role model and mentor and her brilliant efforts to help those in E. Aleppo has inspired me in so many ways, its given me a new meaning to my life in a few ways. Ive become more grateful for the medical care i receive and for the abundance of food, water, heat, and clothing i have. for the safety that surrounds me. i take pride in the work i do in the effort to bring awareness, support, and solidarity to the civilians overseas and im so happy to be a part of this movement. i wish i could tell my 8th grade self that i would be making waves, that i would be eroding the rocks that stand tall, eventually wearing them thin.

today i see a new found appreciation for life, i wake up to a new day and the first breath i take in is a miracle in itself seeing as the last one i took before falling asleep could have been my last. my lungs are far from healthy and if we were able to open me up right now im afraid they would just pop. Many have asked about my current situation and here goes : i am on hold and have been for a bit over a month. i went on hold due to a sinus and esophageal infection and continued to be on hold until after i am able to get my qisdom teeth removed, this seemingly simple procedure must be done in an or while i am vented in order to make sure that i am in the safest environment possible should anything go wrong. my insurance is fighting tooth and nail and im about to give them a little bit of my mind in to try to get things rolling a bit faster!!! but until a few days after the teeth are removed i can be reactivated and hopefully get a call soon after. i wish i could tell my 8th grade self that i would be getting a second chance at life in my future. 

today i feel sad. as juvenile as that sounds. i just do. i have a lot on my mental plate. i recently started dating someone which is, in general, a happy situation, however my old relationship was one for the books and with my soul bared here its a little hard to bring someone new into my life in a romantic way. hes a wonderful man, very kind and sweet and treats me with all the respect in the world but this means creating some space from my ex and that in itself is a little sad to me. im happy were able to be totally open about it and he knows my feeling on the whole situation. my anxiety is hard to cope with lately as some med switches have left me with some tough days and more than my share of anxiety attacks that are not treated as they should be. i wish i could tell my 8th grade self to be more assertive with my doctors because you know your body and you need to speak up. mental health is serious and you need to take care of your mind as well as your body. 

all in all i wish i could tell my 8th grade self a lot of things about the next 5 to 10 years, some things id leave out as they made for some fun surprises!! some i may want to warn myself about or prepare for, some id leave just as they were, we cannot tell the future and we cannot change the past but we can do in the present what we think is right and what we need to do to make ourselves happy and healthy, so i say to you, where do you see yourself in 5 or maybe 10 years? do you like what you see? if not now is the time to change it! but keep in mind we cant change everything. war and crime will happen, heartache builds us into who we are, sickness can provide us with a view on life that the healthy will never know, mental illness while hard to handle and, at time, can be a weight that crushes us can me managed. always know you are not alone. if you dont like the picture youve just painted of your future now is the time to change it!! this is your life, live it to the full possible extent and dont look back! 

Ive also renewed my walk team this year Raising for Rachel for the Great Strides CFF event!! please please feel free to click on the link ive provided below and make a donation to my team to help benefit the cystic fibrosis foundation!! one day cf will stand for cure found we just have to get the research on the same page!!! thank you! 

Raising for Rachel

again i encourage all of you to reach out to me via the contact form if youd like to get involved with the movement in Aleppo. id be more than happy to answer questions, point you in the direction of some great websites, and include you in any twitter storms projects etc etc. if you wanna get involved and share stories and tweet your elected officials please do so and make sure you include the tag #StandWithAleppo. thank you!!! 

you got me....im sick and im lazy

The word lazy has always been a big deal in communities of chronic and terminal illness. to these communities its a word thrown around by people who have no understanding of the illnesses that we deal with on a daily basis. Im not just speaking about those effected by cystic fibrosis here, but people suffering from any chronic or terminal illness. theres a generalization that were young, or we look healthy, so we must be just fine. That we dont work or go to school because were simply using our diagnosis to get out of being a contributing member of society and we just want to lounge around day to day watching television and using the governments money to buy our way through life.

we fight the term lazy and make grand statuses and announcements about all the hard work we do to just make it from one day to the next, we feel the need to defend ourselves from the misunderstandings and the negative comments aimed our way, from people who two minutes prior to shooting us down posted some meme about how naps and pizza are life. 

well here it goes. im sick, i dont work and i get aid from the government and sometimes, i am extremely lazy. 

let the backlash begin. 

im saying this because its true, sick or not sick we all think the napping netflixing and loving tacos memes are all about us. people can work a 40 hour week and on saturday and sunday do you think theyre the epitomy of community service and all things good?? no. they hang out with friends, catch up on that show they love, toss a few back and relax. yet we feel the need to constantly be reminding everyone how hard we work every single day and we are never ever lazy!!! 

stop. just stop. 

you dont need to prove anything to anyone. your allowed to wake up one day feeling perfectly fine, your illness isnt making you feel ill at all and all you want to do is binge the whole season of "stranger things"(no seriously you should its a great show) and eat your way through any and all things delicious in your house and you should, you should do it and you should not have to explain one goddamn word of it to anybody for any reason. 

the need to explain what we do and why we do it has in a way taken over some of our lives. We feel guilty or we feel like were worthless for not being able to contribute, the struggle is too real sometimes. i hope you know you matter, to the people who love you you matter. to people who know you you matter. to people online in these communities you matter. and all of them know your doing the very best that you can. let go of the need for the approval of some idiot who thinks you can do better (keep in mind they cant be too happy themselves if they need to tear you down to make themselves feel better....) and just know your doing the best you can. and while you dont go to a traditional job you work your butt off everyday. so sometimes, yeah, you deserve to eat a tube of pringles with a stuffed crust pizza on the side and not move for a stupid amount of time. you earned it.

 

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!

Plans For The Year

For the first time in a long time i went to a Mary Kay meeting and we talked about goals and staying positive and how your attitude can determine your life and I kept thinking of ways to make this year as amazing as last year and i have so many things i wanna do and as soon as i get excited about it all i remember why last year was so great...because i knew i couldnt do all that this year! Lol so i need to take it down a few notches on the trip planning which is hard because i reeeeally love going new places, but i thought id come up with a few goals and things id like to do this year So here goes :

1).....a few trips. LOL! But not like last year so i think i can plan for a couple without overdoing it! I wanna do the spring holiday with Allie for sure. Were so excited for that and although we were excited for Bermuda and island shenanigans i think staying in the U.S. is a good idea, not only would a road trip seeing new places and things be really fun but at this point im not sure leaving the country is smart at all. Setting up oxygen and medicine transfer and everything would be tough and If something happened there id be in trouble so road trip it is!! (def have out of country plans though for a later date). I also wanna do some smaller ones like Nashville and i think we were talking about California too.
2) I wanna get my fev1 up past 35%. It seems almost impossible lately but i think i can do it. If i focus really hard on getting my weight up and keeping it up, and really put work into exercising and making sure i dont miss one single little pill or treatment i think i can do it. I wanna put transplant off as long as possible because to be honest it terrifies me and i dont want it. Im really motivated to do this and im gonna work my ass off to get the results i want. Making serious changes to reach this goal!
3) Stop letting negative people and situations influence my life. Im happy overall but there are a few things that really get me down and I finally feel like im ready to clean house and get rid of the negative relationships i have with some people. Im ready to let go of all the things that im hanging on to even though i know they're no good for me. I know that ultimately itll make me happier and so its worth the sadness of letting those things and people go and moving on with my life. I have so much good in my life i need to focus on all that from here on out. :)

Maybe ill make some more but for now thats it, those are my goals, a few things i want to accomplish some in the next few months some throughout the year, very happy with this list and im determined to stick with it!!

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