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!!! 

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.

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.

There Are Multiple Kinds of Stress......

Today i had an anxiety attack. I couldnt breathe. My stomach was sick, twisted into knots that seemed permanently tied. I felt the heat in my face trying to hold back the tears pushing their way through and for small droplets of water theyre decievingly strong.


The entire day ive felt a bit tired and worn, ive felt the pressures to get better and kick the cold i had been fighting this whole week. I felt like my health was spiriling back down and the inevitable time alone in a hospital bed walking the same circle through the halls sent a slight wave of depression over my already struggling mind. This is medical stress.

Today i had an anxiety attack. my negative thoughts raced a million miles a minute, far too fast to even give the reasonable ones a fighting chance at being heard. I thought about my weekend and feeling like an inconviniece with all my medical equiptment and treatment times, i felt bad because a sinple 5 to 10 minute walk would have me bent over the side walk dry heaving from the intense coughing fit id have before i crossed the half block line. This is social stress. 

Today i had an anxiety attack. I realized i rely too much on one person like hes the last one on earth who can calm my nerves, although sometimes i feel like thats true. I forget he has a life of his own and its taking off faster than either of us thought it would. The joy i feel that his life is on track and that hes finally happy is overcome at times with feeling left behind, feeling pushed away even if its not true. Thats just where my mind goes. The reassurance becomes less frequesnt and the silence on the other end of my panicky text seems to go on forever. This is personal stress, as in my personal life. The things i hold most dear to me. 

All of this had somehow combined within an hours time tonight, blending together all the aspects of my life and twisting them like a hypothetical pring tornado ripping though the perfect town i imagine in my mind. My brains main street of friends, family, and love blown to pieces only to be picked through when the calm came and the storm was over. I feel as if fragments of my life are slowly being rediscovered from under the piles of debris but to rebuild from this will take time

Im not ashamed to publicly show the devistation that seemed to come out of nowhere, triggered simply out of nowhere. I believe its a part of life to feel stress adn anxiety but i also know that its not normal to feel hit by a granade. To have your breath taken away so sharply all you can do is sit on the floor and wait for your medicine to kick it, breathing deep, focusing on small objects till your mind eases back to normal. 

CF life comes with lots of side effects, i see doctors every week sometimes multiple times in a day, but what i wasnt prepared for was the mental aspect. All i can do is do my best to handle these situations on my own. Not everyone can handle a sick girl. Mentaly or physically. Thats just how it is. 

little ole me just goin on and on.....

I have a ridiculous amount of started posts on my blog site right now and it seems lately i cant organize a single thought in my head. I start to write about one thing and then decide i dont even know where im going with that one and start all over, saving it and hoping maybe itll come back to me later on. I have lists of things on my phone i wanted to address on here but havent really gotten around to that, ive sat up in bed late at night unable to sleep and unable to put my thoughts into order like i was doing so well for so long. My anxiety and my depression are becoming a little more overwhelming every day it seems.

I often use this blog to talk about the thoughts and feeling thats come with transplant and with having cystic fibrosis and i know ive stemmed into the mental health aspect of it before during my long hospital stay. I think that was really beneficial because so many people who suffer from chronic illness also suffer from a range of emotional problems as well. Ive stemmed into the side of love with a chronic illness and how it just never seems to work out how youd like it to, ive gone into rants about people perceptions of my illness and all that good stuff but today its just kind of everything.

In summary? Im in a rut. A bit of a life-rut if you will. Things have been very medical based lately with new meds, new routines, tons of doctor visits and a lot of time spent in the hospital. Ive gotten into this weird wake up do meds, eat, do meds, take a nap, maybe go to the store, eat, do meds, sleep, repeat. Over and over. Sooooooo ive been making some plans. I dyed my hair, lots of colors although for some reason the whole top of my head is insistant on being green at the moment :/ i did my nails, i did things that made me feel good on the outside and as for the inside? well that parts gonna be tough,

I have so much going on right now in my personal life, ive been trying to decide as of late if i should give up on my previous relationship and start to date again (like its that easy to do hahahaha) or if i should still hold out a little hope for the future. im trying to not lose my cool over a mom who likes to seem like shes not, but is totally bat shit crazy and now living with us (maybe more on that one later?) plus im having a hard time figuring out my feelings about transplant. BOMBSHELL : IM WAVERING.

ive been rethinking it. i know a lot of it is due to stress that im under right now and its hard to tell if id be able to hold it all together through such a big procedure if im barely holding it together right now. I feel  a little but like my support system isnt as strong as it was when i was first listed, which kind of makes sense after all its been 7 months people are just kind of complacent with the idea now. Im also just very tired. Im physically exhausted from taking care of myself on a daily basis. I live with family but they also have their own lives and cannot always be there to help me when im tired or sick. Im afraid what after the procedure will be like and if ill even make it through. How will i feel if my lungs reject? I have clinic in a few days where ill speak to my entire team and also to my therapist and try to figure out what i really want to do. 

For now its up in the air. Its just something im thinking about, and who knows maybe when i can fix this rut ill be all gung ho about it once again, excited for life and new adventures, not filled with fear and anxiety. Stay tuned my friends. 

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!!!