All In

The same time I started the BAT program Ian and I started doing CrossFit, and for a while I thought I was a little insane to be changing my daily activities so much and all at once, but now I'm looking back realizing that I'm incredibly grateful to have started CrossFit when I did. Sometimes you just have to go all in.

My schedule for June was class/lab 8am to 3pm Monday- Friday, and CrossFit Tuesday, Thursday, and Sunday evenings, and studying/practicing assessments every hour in between, and eating and sleeping somewhere in there too. July through August was not much different except for the actual clinical experiences with live patients and more sign-offs including catheter's, medication administration, and head to toe exams thrown in.  I think all of us (the BAT's) were exhausted with our day to day schedules and could barely find time to breathe, never mind time to keep up with work, social lives, or a new exercise schedule, I even had to miss a dear friends wedding back home because I had two exams the following Monday, and I know I'm not the only one in the program to have missed out on exciting events with friends and family. We are all certainly making sacrifices to be successful in this program but I am more than sure that it will pay off 10 months from now when we can ourselves nurses. I was worried that there wouldn't be time for CrossFit, that it would wear me out more than the commitment of the BAT program itself but it has actually turned out to be the opposite and I make sure to have time for it.

CrossFit offers me structure, it makes me more accountable, it gives me more energy, it makes me stronger, and overall it just makes my day better. It's been three months now of consistent three times a week workouts, I'm doing things I never thought I'd be doing, like back squats with 125 lbs, deadlifts with 135lbs, and climbing ropes to the ceiling (I finally got all the way to top yesterday)! It's liberating and confidence boosting and most of all it is a lot of fun, even when you're dripping sweat and collapsed to the floor in the CrossFit recovery position you're still having fun, and that's why you come back the next day, at least that's why I come back. I landed myself in the hospital at the beginning of this month (everything turned out okay, and I'm all but fully recovered) and the whole time in house I was contemplating getting a work out in, IV's, tubing, hospital gown, and all. I didn't but I was back at the box less than a week from my initial admission. So, really if you want your body to heal, get your body moving, in ways you weren't sure you could, I promise you'll feel better, at the least you'll feel better about yourself. It's no secret that I have rheumatoid arthritis and it's no secret that this disease does put limitations on me and sometimes stops me in my tracks, for example with a three day hospital admission during finals week, but it's also not the be all end all, of who I am and what I'm capable of, and it's certainly not an excuse not to do CrossFit. And for those of you reading this that are thinking I could never do CrossFit, watch this video of other folks with plenty of 'excuses' not to do CrossFit for some encouragement.

 So, the biggest thank you is owed to mine and Ian's friend Yasha who has his very own CrossFit success story, is now a Level 1 CrossFit coach and is the reason Ian and I started CrossFit (only after two years of gentle nudging ;). Yasha, I cannot thank you enough for introducing CrossFit to me (and Ian) and encouraging me despite or rather in spite of my looming "limitations". And to Leslie and Barry of Southern Tier CrossFit for making it all possible!

Come fall, you can find me still making time for CrossFit despite class three days a week and clinicals four days a week, it may mean a few 6am workouts, which for me is relatively unheard of, but I'm sure it will be more than worth it. I invite you all to give a try!

Lisbon

About six months ago, I submitted an abstract on the cystic fibrosis quality improvement project I've been working on for the past two years to the European Cystic Fibrosis Society for their 36th annual conference being held in Lisbon, Portugal. To my surprise and excitement my abstract was not only accepted but given a presentation slot in a workshop on partnership with patients in adult care! I had planned on attending and presenting, worked out a flight schedule that would have allowed me to go to Lisbon present and only miss two days of school. But after careful consideration, I decided that missing two days of nursing school was two days too many and so my work is being presented on my behalf. 

This work says that there are unmet needs in the end of life care for adult cystic fibrosis patients, that healthcare professionals find unique challenges in providing quality end of life care for cystic fibrosis patients, that patients, their families, loved ones, caregivers, and healthcare providers want improved care and improved communication, and that patients are their own best advocates. 

I am so proud to have worked on this project, to have been able to remember 13 individuals and to have helped their stories influence the future of quality care. I am also proud to have given the nurses, physicians, respiratory therapists, social workers, and dietitians an opportunity and a place to share their experiences caring for these individuals. I am so grateful for the experience I gained through my role in research and as a patient advocate and I am so proud to now be a nursing student. 

So tomorrow as I walk into my nursing assessment lab to practice respiratory, cardiac, and abdominal assessments with individuals who share my passion for nursing, my work on improving end of life care for adults with cystic fibrosis will be presented in front of individuals who share my passion for cystic fibrosis in Lisbon, Portugal. 

I don't think it could be better than that.

I'm gonna be a nurse!

Welcome. Good Luck. Rest Now. Study Hard.
Those were the most common phrases being thrown around at my Baccalaureate Accelerated Track Nursing Orientation last Thursday. All of the faculty continually warned about resting now because you won't have time later and they weren't kidding. Just reading through the syllabi is a challenge and trying to fit all of the readings and assignments on to my calendar never mind in to my life is already proving difficult. BUT wahoo! I am going to bust my butt for this year and I already know that it will fly by and then I'M GOING TO BE A NURSE! Today was our first day of classes and lab. Not even 5 minutes in to my pathophysiology lecture I had this, oh my freaking gosh moment, after the professor said, "the patients you'll be taking care of as a nurse will be..." and in my head it was finally real, I'm going to be a nurse. I was signed off to make a bed with proper mitered corners, no wrinkles or creases to prevent pressure ulcers and to improve aesthetic, and then of course on proper medial aseptic hand washing technique.

So it's real, I'm here, it's started. I can tuck you in with clean hands and I am on my way to becoming a nurse. 12 months to Bridget Quinn, RN, it will be a hell of a ride.

"I want everyone to know, you don't have to find out you're dying to start living..." -Zach Sobiech

I woke up this morning to a number of posts on FaceBook relating to this video on UpWorthy and when I got the chance to watch it I was honestly blown away. Zach Sobiech is a 17 year old young man who passed away yesterday on May 20th, 2013 after living with terminal cancer since the age of 14. In this documentary he speaks of finding closure, of finding peace and he advocates for everyone to pursue one thing, to try and make people happier. What a lesson to learn and to teach in 17 years on this planet. There is such beauty captured in this 22 minute video, that I can only imagine what life was really like living with Zach as a brother, as a boyfriend, as a son, as a friend, how much of a presence he had in their lives and how much he left behind to help fill the void in absence.

I am left thinking about living life despite death and it is allowing me to reflect on a few of the more difficult moments during the past year and on a message I hope I have left behind. Too often we see things as black or white, as life or death. And I personally think that the choice is not between life or death, but is about life despite death, whatever that means for each individual. My frame of reference at this point in my life is cystic fibrosis, it is as many of you know, a chronic and life-limiting disease and just as in many other chronic diseases there comes a choice in end-stage disease to pursue more aggressive treatments or to (for lack of a better term) focus on quality of life. For Zach, who suffered from osteosarcoma, he had an option for surgery but this would have meant losing his leg and half of his pelvis and he would be left not even able to sit up, so his mother said at that point we began to focus on quality of life. In cystic fibrosis end stage disease leaves most individuals with the option to pursue lung transplant and too often I've heard that this is a choice between life and death. Too often I've heard if you want to life you have to get a transplant. I don't believe that. I believe more than anything that what you chose to do with your time and your body at any point in life, but particularly when suffering in end-stage disease, is a deeply personal decision, that perhaps no one but that individual can fully understand. It is not a flip of a coin decision, it is not for most an obvious decision either. My cousin Marissa, in her death, taught me one of the greatest lessons I think I will ever learn particularly for what I want to do with my life. Marissa was 27 years old when she died of complications from cystic fibrosis, she didn't choose lung transplant, instead she chose life despite death. And when she died, she was able to say that she had done more than she thought she ever would, and that she was happy. I only hope that we can all feel that on our death beds. Choosing lung transplant for many also means choosing life despite death, it can mean an opportunity to pursue bigger and better dreams, to do things you never thought you would be able to, or to spend more time with loved ones. In either case, in all cases, there is no right or wrong decision, and there is no choosing life or death.

Zach Sobiech's story teaches us, to live your life as you want it, live it with love, with a smile, and with the goal of making someone happier, maybe that someone is yourself, maybe it's a stranger on the bus, maybe it's a floor of hospital patients, or maybe it is your loved ones.
This young man's life is a testament to the human race and what individuals are capable of. Zach Sobiech, his friends and family, are an example of unconditional love, and a lesson on compassionate support and honest communication. His words and music, his life and story are a demonstration of empathy, love and beauty. I thank him for sharing his journey with the world. And believe that having heard his story will surely make all of us better people.

The End of a Chapter

Today marks the end of a chapter of my life, my role as the research coordinator for the adult cystic fibrosis center has ended and my role as nursing student will begin in just a few short days. It's hard to believe and it has been quite the journey.

These past ten months represent some of the hardest work I have ever done. I have been certified for sweat testing, study specific spirometry, coordinated over 9 clinical trials, and processed hundreds of sputum and lab samples. I have worked with over 100 patients, each one with a story of their own, I've coordinated home care for IV infusions and hospital admissions, I've located emergency housing and hand delivered medications during hurricane Sandy, I've answered 10pm, 3am, and 7am text messages, and put in 14 hour days. I've witnessed the death of a beautiful young woman and supported two families through the deaths of their loved ones. I've counseled on the tremendous decision of lung transplant and been a patient advocate and ally. I've published three abstracts, been part of a national quality improvement initiative, worked as an interdisciplinary team member, and have my work to improve end of life care for cystic fibrosis is being presented at two international meetings. I have listened without judgement and provided compassionate care. And somewhere along the way I have convinced all of my colleagues as well as myself that I am going to be a great nurse.


I can't find the words for what it meant to work in the clinic where Jennifer and Marissa were treated, side by side with their care team, and in the very hospital rooms where they took their last breaths. I can't describe the feeling I had when I first walked in to that clinic in the summer of 2011 or the feeling I had walking out today. What I can say is that this experience has certainly changed my life, and will forever be a part of the way I practice as a nurse.

I don't think I will ever be able to express what an absolute honor and privilege it is to care for an individual with cystic fibrosis. I thank Jennifer and Marissa for their lives and love, for the strength they have given me particularly throughout this past year and I thank them from the very bottom of my heart for introducing me to this beast of a disease and to the incredible people that live and thrive with it and despite it every day.

So as this chapter comes to a close, a new one begins. And 12 months from now I will be graduating with a Bachelor's of Science in Nursing.

I'm Still Showing Up

A few weeks ago I got an unexpected phone call, that turned in to a very unexpected day, that involved an immense amount of both love and pain, and ended with a tremendous loss.



This person was a young and bright spirited individual, one whose love knew no bounds. This was a woman who had seen the darkest of dark, who had survived through more than most of us will ever have to but still lived with out hate. We had been working together since I started, first on research trials and then coordinating her care to list her for double lung transplant. She had shared intimate details of her life with me, both the pain and joy that she had experienced.

When I saw her that day, she was gasping for breath with eyes unfocused, legs bare, lips blue, and cheeks white. She was grabbing at the bed rails to hold her body up, almost as though trying to remain a float. She knew what was happening, she told me she was scared, that she didn't think she would make it. She didn't make it, but I did my absolute best to comfort her and to ease her fear. And though we can never know, I feel she was at peace when she was passed.  

I genuinely miss her. I carry her remembrance card in my wallet, next to Jennifer's and Marissa's, and honestly, I think daily about how not to let their stories die.

I don't find that attitude to be unsettling or depressing, I find it comforting, I find it gives me more purpose, but I do realize it's heavy. It may not be for everyone, but for me it's part of who I am.

With all of the "heaviness", I am finding that it is so easy to be unhappy, unhappy in general, unhappy with work, with life, with circumstance, with this minute, with whatever. I know I'm not alone in that, but then I am reminded of this beautiful girl, and this overwhelming feeling of guilt and sadness blankets me. What am I unhappy about? I'm unhappy because this has been hard, because it's been a difficult, insanely difficult, past few months, is that fair? Is it fair to be unhappy with things being hard? Of course it is, but that doesn't make it any easier. This girl would have told me I looked pretty, that my outfit was so coordinated, that my job was so cool, that she wanted me to take her to Binghamton with me when I left, that she hoped Ian wouldn't mind her moving in.  She had wanted so much more for her life and I did too, I had hoped for transplant, I had hoped for a break for her, I told her I'd come down from nursing school to see her breathing with those bright and shiny new lungs. She didn't get that break and here I am with endless possibilities for my life, still finding it so easy to feel unhappy. It's hard to reconcile that, and it's hard to get up each day, with the weight of the lives lost on my shoulders. But I can't help but carry them. This year has been hard as hell but at the end of it I'll have survived and they will have died. How can I leave that behind? How can I not want to make more of myself and my life, having lived and worked with them? I don't think it's a feeling that will ever escape me, and I hope at the end of the road, having gone on this journey will make a better, more compassionate, and more human, person. But still, the hardness of it all remains.

So, what can we do? We can try, actively, to pursue the happiness that remains despite all of the heaviness and all of the hardness. We know that all of this pain exists, but people are still smiling, people still find time to dance in the rain, to play on the swings, to go for long walks, to pet their puppies, to hug their children, to plant gardens, to show up every day. Maybe that's all we need.