Friday, October 21, 2016

"Yes, I swim with a Trach."

What follows is my practice essay for part one of the CLEP college composition essays. I had 30 minutes to write my essay ( I used 40 but handwritten so I’m hoping that I can give myself some slack for the first practice essay). The challenge is to respond to the prompt:
There are no challenges so difficult, no goals so impossible, as the ones we set for ourselves.

I have attached the link below for the rubric the essay would be assessed on. Please feel free to comment with feedback or email me.

Scroll down to First Essay: Directions and Scoring Guidelines
https://clep.collegeboard.org/exam/college-composition



I whispered to my mother (with an accompanying heavy glare) “No, stop, I already know.” I didn’t really know the answer to the question. I had spent endless hours thinking about it and doing research. I did know the answer Dr. Mathew Clary would give.
               “So, can she swim with the trach, should she?” my mother posed the question I’d spent all of my time pondering.
               “Yeah, sure, I mean keep the Trach capped but a few splashes should be fine.” Dr. Clary openly responded.
               “No, no, swim, like laps and such.” My mother corrected Dr. Clary’s landscape he’d so quickly painted. I received the equivalent of a doctor’s “professional” spit-take in the form of a facial expression.
               “You’ve got to be nuts!” I grinned, I knew this was the perfect challenge for me. “You are out of your mind.” Dr. Clary, still, profoundly flabbergasted by my persistence to swim with a trach, continued to utter statemenets reflecting amazement, but not exactly a presecription for exercising in the water where death loomed in the unknown. I had my end goal laced into my mind. I would one day find myself jumping off the starting blocks racing my way through the water with a tracheostomy in place. While there is nothing easy about the goals I place in front of myself, the challenges that line the path are merely impossible to those unwilling to try or those on the outside. I have found the goals other individuals set for myself are the impossible.
               I am the younger of two type A incredibly driven females, comparison came naturally. My older sister by 4 years competed as a student athlete, achieved honors academically and athletically throughout high school, so there would be to expect nothing less from “Little Beckley.” By th second month of my Freshmen year, it was evident I would not trace my sisters footsteps in achievements as the expectation I had felt from others. A month before conference championships in high school swimming, medical problems that appeared to be deadly reactions to many things, including the pool, kept me on the side of my sister’s steps. I quickly began to take myown untraveled path. I still ahd my own dreams and goals but they were focused on my view of possible and my passions. In the end I too graduated with academic success and athletic success in my goals.
               I didn’t swim competitively again until my freshman year of college. I found myself struggling with health again; however, this time I had a continuance of broken bones plaguing my dreams. I was not excluded from swimming in the first meet but I was not cleared either as a potential underlying fracture had not been evaluated. When the assistant coaches asked if I would be swimming as I loaded the bus, I grinned, “S***, I’ve forgotten my suit, I’ll be right back.” I swam my fastest 50 free at my first college swim meet with what later showed as a stress fracture in my left foot.
               As I smile nostalgically at my past with swimming, I see the goals I’ve achieved and the ones I did not. The goals set by others were truly impossible. Each challenge I tackled to my own personal goals, was not easy but I made my it all possible. The spirit of the statement “There are no challenges so difficult, no goals so impossible, as the ones we set for ourselves,” reflects the human nature to push boundaries which is also reflected in my own goals; however, as a romantic I believe anything is possible.
               6 weeks later I returned to my ENT’s office. Before leaving I pulled out my phone “Oh, I would like to show you something.” I pressed play. A neon inverted video proceeded of a girl swimming, accompanied by words and music. (https://www.facebook.com/beckleyjulia3/videos/vb.1369626920/10205343264445652/?type=2&theater)
               In a different wave of astonishment Dr. Clary looked at me “That’s you?”


               “Yes, I swim with my trach.”

Saturday, October 1, 2016

The Chapter I am in: Learning to Dance

     We walked around the tennis courts at City Park in Denver looking for the perfect spot. I knew this park well from years of playing tennis there against Denver East High School; however, today's visit was different. Megan, a dear friend from Coe College, was visiting for the week. She had never been to Colorado, and per tradition needed to go dancing in Colorado to check the state off. We would spend less than 30 minutes going over the basics of Lindy Hop (a type of swing dancing). Following dancing lessons with a brief intermission for food and than off to Baur's to listen to the Spicy Pickles while dancing the evening away. I only danced for a few songs with Megan throughout the evening but it was the start of something incredible. Surrounded my a new community to for myself and Toby, I found happiness and hope; the intangible feelings I had been short on many times throughout the past year. A couple of days later we went dancing again at the Mercury cafe, and Megan helped make sure I was prepared. I pre-treated, taped my ankles, and felt great going into the dancing. I got to dance with a few very experienced dancers making it easier to follow.
     The importance of my dancing story is not just how happy I was and am dancing but how I have applied this to my life most recently. In the second grade I remember learning how to dance, I don't know exactly what type of dancing but I do remember something about "the pretzel." I thought I was happy with the level of my dance knowledge as is and didn't feel that I could really dance anyways if I tried (not just intellectually but more out of physical fear, and I still have this struggle). After recent conversations I was reminded of this idea of freedom from illness and health, living much more than I have. More and more that feeling of freedom has appeared in little bits and I've thought about having better grasp over health. This idea has always been the goal but I feel that I am coming into a season of which I will learn to live again but not without obstacles. So I've decided to think about this in comparison to learning to dance "again." While I may have known some basics years ago of dancing and life, I am learning the basics all over again. Listening to both the music and my body I will learn to follow the rhythm. I will find pattern in my feet and breaths I take to have better autonomy and management of how I move my body and flow through my life. I will learn the basic movements and basics of living all over again. In the end of this chapter I will find myself with a different level of life and dancing.

Thanks to Brooke Jostad, for posting a question on Facebook of "what would the title of the chapter of life you're in be?" Please feel free to respond in the comments or email me at joulesandjules@gmail.com or fb respond! Prayers and love to all!

Thursday, September 8, 2016

Changing the Game

          Packing my bag frantically I ran through my head everything I would need to bring. There was the the obvious survival needs, clothes, food, and Toby. After the essentials most 22 year old females would need I pulled out the big teal bag, "the drug bag." I packed 3 different nebulizers (2 portable and their charger and the charger that allows them to be plugged into the car, and than the big nebulizer too). Why would someone pack 3 nebulizers? Because the mesh cap has failed before, the batteries have died, and so many things that seem preventable. That word "preventable" haunts me. Several weeks ago an idea had popped into my head, a metaphor. I've realized over time my thought process has been warped to where I have scenarios that can play out in my head as sometrihing starts to go wrong and I typically try to optimize the "having a life" aspect figuring that even being the most of proactive I'd end up in the ICU at some point or the ER or whatever you have it. I have been living in a pinball machine. No matter how hard I try to change where the ball goes it ends at some point. I have gotten very very good at playing pin ball too. Remember the last two flippers right before the end? I've mastered the art of pushing that ball back into play when it seems like its doomed. 

        I look at how my friends play pinball. I listen to their challenges they all face and declare I don't want to do it that way. I declare I don't want the world to see me as a pinball player and I wouldn't make my facebook all about playing pinball, and than it happens. The game ends or I need advice on different moves, and than I judge myself. It seems so simple right? Just walk away from the pinball machine. Or "just get a job" and make some money and you'll be fine. 

        I have no answer to this problem tonight but I wanted to start writing some and just share. I wonder if I can change the game. I wonder if I can de-construct the machine and change how it ends. I wonder if people who've played it once or twice can give me the best advice. I wonder if those watching for years on end can make a difference. This is by no means the perfect metaphor but it was a starting point for writing.

       Friday I was so excited to go see the concert with Jules and even more lucky to spend a good hour talking with the Flobots after and getting to sign with them. You see 6 years ago I went to my first official concert, the Flobots, at New West Fest. Rachel, my sister, was in a coma at the time. Each band member signed a shirt for her with a personal message. The shirt hung in her room throughout her recovery and at home too. 6 years later and she had just returned from teaching in France. I got to share that they were apart of not only her recovery but my own journey. I quickly learned that one of the band member's wives is a speech pathologist too as I went to cover my trach to talk each time but was consistently reassured it wasn't gross and I didn't have to do so. I also got to sign with a lot of them as they too are asl students. It was the most incredible night but it had its concequences. So what if I hadn't pulled back on the plunger to push the next ball into the pin ball machine game that night? What if I had stayed where I was. Would I be fulfilling the plan for my life or was I going against the plan? Is this my fault? 

     What I do know is I have to believe I have purpose for my life. I have to believe that I am getting better even if it is simply my ability to handle hospitalizations. I love what I have done and my regrets lie in the relationships lost and the people whom I've harmed through my choices. I apologize quite humbly to those who've been on this journey and no longer can tolerate me. Thank you to those who are new to this and those who are old to this. Here are to more days of playing the game, and hopefully changing it too.

Thursday, January 8, 2015

What it Means to Be Here

                If we're going to have this talk, I'd like to prepare you a little bit. I want you to know that if I could redo the past 20 years I would most definitely take different turns. I do not believe would be who I am without the difficulties that I have had, nor would I have developed the same relationships I have had.
                My most recent difficulty has been that I stopped sleeping due to the angioedema, and bone/joint pain. I injured both my shoulder and tail bone in the previous months which has led to significant amount of pain. I didn't want to ask or take narcotics because I do not believe narcotics are the solution for my pain 99% of the time, and I have no interest in becoming dependent on narcotics.  Considering the amount of sleep issues I had I don't know if this is one of the wrong turns I took.
                As a result or perhaps well deserved I also ended up getting pretty sick from the asthma and allergy side of life this past month and that was difficult. Finally I had emotional stressors and physical stressors that I pushed through. As a dear friend has told me "You tell your body what you want it to do and it will do it, but what are the concequences of doing it?" So I struggled on the physical, mental, and spiritual side greatly in the past couple of months and I asked for help but kept getting arrows of getting help else where. Finally the week of Christmas my mind and body broke down completely.
                Christmas eve was enjoyed over multiple ED visists and a final admit on christmas morning only to quickly get discharged (my request due to anxiety of being in a hospital and knowing that was a contributing factor). We (my second sister, Emily) and I drove than to my "Aunt's" house in Denver. I attempted to make it home from there and ended up on another ambulance to swedish where I did at least get 4 great hours of sleep. After being discharged Emily and I made our way to her apartment where we made it through a swelling episode. Unfortunately I took on someone else's problem that night and not only had to call an ambulance for someone an hour away and horrible snow conditions, but got my car stuck and bought myself another ambulance as no one is going to leave a 20 year old in a snow storm with her car when she is swelling and her BP is dropping. Got quickly discharged from Sky Ridge (hospital number 4/5 of the month), once again at my request.
                My parents rightfully worried did not allow me access to the car that had all of my medicaitons in them as it was towed. Me in a manic state had the taxi driver take me to walgreens. I knew that I could at least get medication that was needed and due at the time. My next step was that we would drive through Boulder and Longmont up to Fort Collins where I needed to take care of a Dog as well as where my house was. There are more family dynamics that complicate the issue, but nothing that my parents or any family members have done wrong. (remember everyone has the same goal but there are 40 ways that look like they might get us there and 10 are sketchy, and 10 are frustrating and 20 are a coin flip).
                So back to the 26th of December, I was in the taxi monitoring things with my new bp cuff and new pulse ox. I had some apple juice to make sure my body had some energy to deal with the swelling that was occurring. I wrote on my new whiteboard some affirmations to make sure I stayed with it and got through everything. I knew I needed a nebulizer treatment as I had the flu and knew that I minimum needed an albuterol treatment. We made it to Boulder and I begans tightening up more, (anxiety most definitely a factor), but I had no medication except for epinephrine pens to use which I didn't want to. I also had the swelling but the trach was in and it was open. The final factor is my brain has recently been throwing in some pretty scary neurological symptoms, which to my knowledge I believe was my brain's way of saying "I'm done bitch, give me help, I can't cope any longer." Perhaps there is a more legitimate medical reason as well. So the result was we called an ambulance and from my memory talking with dispatch I couldn't say what exactly was going on and repeating phrases became incredibly hard.
                This time in the ED the doc in charge quickly discharged me with anxiety. I quickly rebounded in front of the patient advocate and called dispatch such that there would be record of how this went down. At this point remember I had 4 hours of sleep in a 24 hour period. Incredilby stressed not only because of my own health but its been a month of trauma all around (putting a dear friend's cat down, finals week, and having a friend in the ICU). So I was put on an M-1 hold and a different doctor saw me. I don't actually really remember everything but I continued to get more physically sick. I got taken care of physically but was taken of steroids abruptly. If you were my friend my freshmen year of high school you might remember some of the mania I had than after abruptly being taken of steroids. It is apparent now that most likely I have a form of Bipolar, and as doctors have said a very mild form; however, it is complicated by steroids and the medications I tend to need regularly.
                I spent around 7 days on the mental health floor to get me back to baseline physically and mentally. The hardest part for me is accepting that I most definitely suffer from a mental illness. Even though I have tremendous coping skills from all the trauma I have been through it was time that I got help in pulling those coping skills out as well as giving me a break from family dynamic stress. I also didn't have to deal with my angioedema alone for the entire week and I saw no friends suffer by watching me go through it. It sucks that I needed that much help but I will say I had been askingaserious pyschiatric help for the past couple months in doctors appointments as many will note. I met some amazing people and truly had a wonderful time growing on the behavioral health unit. I could not thank AMR, PVH EMS, PVH, MCR, UCH, and BCH enough for the help and kindness that has been shared despite any severely abnormal behaviors I had.  If you're reading this and have been a provider for me at some point in time, note that your work will never go unnoticed in my life. I will always be paying it forward; however, it is time that I take over my own care and hopefully learned the lessons needed to be truly successful. I do ask that you don't use me sharing that I have Bipolar as a way to justify anything you thought was weird about me, perhaps use it to recognize my strength instead.
                To end this note I'll type the poem I wrote while I was in there. It is incrediby important to me share that I am proud I was there as I start my EMS career. I recognize that not all may see it way. I encourage you to try to see it as a benefit to my growth as a provider especially considering our current crisis with not only providers experiencing depression but also patients throughout our nation. I was never in a state that I considered ending my life, but my self harm became forcing my mind and body through more than it was able to handle. If I asked or ask you for help and you say no don't feel bad at all, I am incredibly cognisant of boundaries and would prefer to have boundaries than for you to break your back picking me up.
What being here means:
It means I didn't give up,
It means I raised my hand for help,
It means I have people who care about me,
It means I never gave up,
It means I am loved,
It means I love myself,
It means I love my future.

Saturday, November 22, 2014

Thanks Mom and Dad

Mom and Dad,
Where to start, well I suppose I should explain this letter is typed because I couldn’t write the amount of words that are going to come out down without hurting myself nor could I keep up with my mind. Oh and don’t cry either.
No this letter is not some psychological break through, crazy enough to believe especially considering the words that are about to be said (don’t worry its good stuff, I promise (yeah I do lie a lot, but I really am not here)).
Second warning, this is not well edited so Dad don’t take your fine tooth come through this letter it’ll get stuck on the first line.
Third warning, you’re probably going to want to pull this out from time to time, and I suppose you can but remember that I may or may not appreciate that but whatever that’s your life choice.
Okay here’s the meat and potatoes if you take one thing, well actually I’d appreciate it if you took more than one thing, so here’s my bullet points.
·       You can be right approximately 99.99999% of the time. (I was going to say you’re right, but I’m afraid you might take that as me saying you’re always right, two very very different things. I am still your daughter so I can’t admit that you’re always right yet). That .000001% of the time that I disagree with you and turn out be right matters though okay.
·         Stop worrying. You’re friggen parents of the year already okay. I think we can stop with the stupid ER/ICU/Doctor visits and just call you parents of the lifetime. Despite how much I might of f’ed up (yes that is fudged, I am an angel). You’re amazing.
·         I am grateful for every second that you have poured into my life whether that be through thought, or actual time. No matter what I have said in the past lets just unring those little bells and ring the big ben clock so you hear me. I love you. I am grateful. I am the luckiest kiddo in the world to have not only you for parents, but to have had the incredible family that I have.
·         I’m going to screw up again. I probably already have and you’re just waiting to tell me or waiting to find out, but forgive me please. You’ve got 30-35 years on me and its just not fair because I want to be as smart and as amazing as you and even more so.
·         Thank you. That’s as simple as it gets. Thank you for the effort you have put into me and my life and my sister’s life.
  • ·         Oh that’s the last thing. Rachel and I are no longer “teen” power, we’re “young adult” power. Watch out. Now that we really not only get along but truly see the value in each other, well lets just say the tramp stamps are not the only thing we’re going to work together on for mutual benefit.
  • ·         Oh one more thing. I will gladly take care of you in your old age, but I’m totally going to be just as a pain of a but you are to me if you get alzheimers. Just saying so that we’re clear. I also charge at least 12$ an hour for any caregiving, but don’t worry I owe you a lot more than what you’ll spend on me so we can call it even.

Okay so yes this letter so is not organized, but that’s my brain and well you two made that life choice 21+give or take years and months ago to have me and well I’m what you have.
I know its taken you 40 years to get me to age 20, but I couldn’t be more grateful that it took so long because that means I got 40 years of life with you and if theres anything I’ve learned in the past 20 ½ years its life is short. Love every moment that you have even if it means loving the fact that you can hate the moment that you’re in.
I sure hope my kids are easy, or at least I hope that they have you around for grandparents because I can’t do what you have done alone at all.
I wouldn’t trade the world for any other situation if it meant I didn’t have the gratitude and love for the family and life that I have.
Thank you for letting me be stubborn, independent, tenacious, or whatever word we’ve called it besides
brat well and brat just so that’d I would make it to this point in my life and realize how much I have been given by whoever is in charge of this world (steelers, or god, whatever you pick I’m grateful). Thank you for fighting for me no matter the cost and thank you for stepping back and taking care of yourselves so that you could continue to fight for me later on.
Thank you for never giving up on each other and showing me what love looks like no matter what you go through or how much growing you have done.
Thank you for teaching me to always love my sister, even if that comes in “love” bites. Lets be honest we’re all happy I outgrew the biting phase (life could be worse ya know?). I will always be grateful for every moment I have ever spent with her and I am grateful to have become an older sister in some ways but more importantly to recognize how much I can learn from her. Thank you for making me say sorry to her (I don’t actually remember this but I’m guessing it occurred, even if it occurred with an eye roll), because I actually am sorry for anything that I ever did that would harm my sister. I promise no matter what I will always look after her as my sister (so good luck with the parenting crap cause we’re not easy and I ain’t trying to help anymore).
Thank you for never ever telling me no to my dreams. Thank you for telling me some things aren’t possible so I could prove you wrong, though I’ve learned I don’t always have to do this and its totally okay for me to listen to you every once in awhile.
Thank you for standing up for me when others have tried to put me down.
Thank you for pushing me to be the best human I can possibly be and encouraging me to have the heart for others that I have.
Thank you for teaching me how to laugh in the face of fear and struggles because its made life a lot easier.
Thank you for giving to others more than what we thought we could give whether that be friends who need a meal or the biannual fundraisers that you indulged in.  Oh and thanks for shaving your heads too. I don’t know many families that can say they all shaved their heads for kids cancer research but no kids in their family had cancer prior to doing so.
If I thanked you for everything there wouldn’t be any reason for you to listen to me anymore so this is where the letter ends. And its late. And I’m tired.
I guess it all comes down to if this was the end it’d be a happily ever after, so it’s a good thing that we have a lot of years left ahead of us until I turn 40. Good luck. Maybe the next 40 years will be a little easier now that we’re closer in the pages we’re on in the book of life.
Love you both. Don’t forget I’m still 20 so this doesn’t change everything. I still have sass to give and lots to learn.
Xoxoxo

juju

Tuesday, November 18, 2014

I'm Still Learning

If you choose to read this post there are a few things that I ask.
1.      `.Don’t feel the need to give me pity. Messages of support, and encouragement are always welcome; however, I do not need pity. I am incredibly happy and have a phenomenal support system as well. Thank you for your support in whatever realm that looks like.
2.       Please do not give me any message of criticism. I already am well aware of the consequences for the choices I make and I am not sharing all of the details that led to the choices that were made.
3.       Thank you for taking the time to read this and I appreciate that. Feel free to share, but please do so kindly.

-               Throughout this following post to my blog I will frequently be thanking various people who have been there in incredible ways for me over the past couple weeks. The function of this post is mainly for the benefit of myself to cope with what has happened over the past couple of weeks; however, if there is a benefit to the public, great.
On Saturday 11/08/2014, I went up to Glacier View to stay with a friend who I would be dogsitting for throughout the following week. The friend and I are very well prepared in how to handle my health issues in the event of emergencies and very good at doing so such that I am safe and we do not risk anything.  Though I have had some respiratory issues over the past month due to viruses going around I was confident that I would be okay that night. We had a great time watching a movie and talking before she would leave for several weeks and I am incredibly grateful for the moments we shared despite the outcome. I woke up at approximately 3am and felt not so great. After putting on the pulse ox and trying to take a couple of deep breaths I realized something was going on.  My oxygen saturation was in the 70s-80s and not going up any higher and only in the 80s when I was sitting down. After waking my friend and calling the pulmonologist we quickly decided to start down the mountain and stop at a fire station to get evaluated and some oxygen, hoping we would still be able to drive ourselves down. The situation rapidly became dynamic such that my I was then connected to an ambu bag via my trach and being assisted with ventilations though still very conscious. As my face began to swell there was limited concern as I already have an airway. An ambulance from Poudre EMS was dispatched and a helicopter (from what I understand, some details may not be as accurate). Medications were administered by myself in order to eliminate the swelling though this was temporarily effective and my saturations still continued to be low especially during peaks of swelling. The crews that were in charge of the situation made the executive decision to fly me out; though, I was not happy about this at the time I am grateful that they were willing to make that call for my own safety. I was treated incredibly well in the PVH ER and the pulmonary team and ER docs were comfortable with letting me go after several hours knowing that nothing they could do in the hospital would be different from what I do at home at that time.
I continued to follow up with docs throughout the week and we came up with a list of blood work to be done which has thus far come back normal. This past weekend I went down to Brighton (feeling well) to dogsit and at the end of the day decided that it would be in my best interest to go to a clinic to get some steroids on board either IM or IV to hold me over through the night. Thankfully incredibly dear friends were with me and we went to an ER where I ended up being admitted overnight and discharged the next day. Though there were some bumps in the road overall I could not be more grateful for the friends that were there that evening and day.
        Tonight I am at home and resting lots. I am considering my options for the rest of the semester. I fully expect a quick recovery once my body gets over this virus and everything stabilizes again. I have had four amazing months where I have learned more and more about my body’s limitations and what I can do safely and what may not be as safe. I am most grateful for not having had to be in the ER every other day or fear I might lose my airway; however, I have also realized the trach doesn’t fix every problem that I do have.
                In reality I am still a healthy 20 year old girl and am not disabled, my normal is different than your normal and that places me in a category in our society. I am just as competent and capable as my peers. I plan to still pursue my EMS jobs that I have been looking into and have been cleared to do so by all of my doctors. I already see the top doctors in the nation if not the world. I have been down just about every avenue including nutrition, and psychological care so I am not exactly interested in hearing about miracle diets. I am very good about cooking for myself and I am attempting to lose weight however you may catch me on a day that am swollen day or on steroids so yes I look a little fatter than the girl you knew in high school or whatever. I also know that I am finally happy with my body and accept myself for where I am at today and know that I want to be in better shape again. I am doing everything in my power including resting (I know crazy! Julia resting? What is this), seeing a nutritionist, personal trainer, multiple doctors, acupuncturist, physical therapist and etc.
                If you’re wondering what you can do for me there are a couple things. Feel free to text me and come watch a movie while I’m on rest mode (note: do not do this if you yourself are sick unless you are not contagious). I am always looking for people to study basic biology with and basic chemistry. Please don’t tell me you don’t think I should pursue EMS, pursue medical school, or whatever advice you want to give that is encouraging I have enough people that fill that role. Feel free to encourage me to take time pursuing all of these things and take the appropriate steps to be safe. Lastly pay it forward. Even in my worst of health times I have always been one to give to others but not necessarily can. Right now a few friends and are collecting supplies to make blankets for the pediatric floors at MCR and PVH. You can always make treats (preferably throw something healthy into the mix) for your local ems providers whether that be fire or medical too. Thank those in your life who put others before them.

                Finally, I cannot thank the individuals in my lives especially my parents in letting me continue to live my life to the fullest and let me figure out the limitations along the way. My parents are truly incredible individuals and deserve so much that I hope I can return someday down the road. My friends both medical and non-medical are also incredibly supportive. Lastly my instructors at Front Range community college have been phenomenal in advocating for my completion of courses successfully and supporting me throughout this roller coaster. Thank you to the flight crew, ambulance crews, docs, nurses, and non-medical individuals for making my life possible. 

PS. I did not thoroughly edit as I should have so feel free to send edits to me at julesandjoules@gmail.com. Or send any other commentary.

Sunday, November 2, 2014

My Lifes Beginning Chapters

         If you sat in a class with me, there are a few things you might notice right away. I talk a lot, and sometimes way too much. I love learning, asking questions, asking more questions, and getting problems wrong and then right. Most people call me a know it all but I really really hate that about myself that I sometimes come off as if I think I know everything when the reality it is just the opposite. I am an outgoing college female and I am very active. I play tennis, swim, volunteer for various organizations, coach, nanny the occasional ankle biters, cook amazingly delicious meals, have random nights at Walmart with friends, play president of a club, work as an EMT, work as a caregiver, and I am a full time student. There is something that you won’t know about me right away unless I have a lot of confidence that day that we meet. If you look a little closer you might notice the tracheostomy my scarf, or it’ll be staring you right in the eye when I decide I can leave the scarf off.
Coe College Night at The Kernels Game ( My Freshmen Year)

High School Graduation (Yes I had a couple stress fractures, but don't worry I took more than stress from high school)

Crissy (One of my amazing PTs from Rebound Sports and Physical Therapy) High School Graduation Party

Right before I shaved my head for the 4th year in a row- Picture Credit Beucler Family
                My health saga began with a broken tibia in the third grade from a skiing incident; very little at the time seemed abnormal about this incident. The buckle fracture of the tibia didn’t appear on the x-ray for 6 weeks, but it was a buckle fracture so that could be expected. I had another two broken bones before turning age 11. A recess soccer game with the boys led to a broken shoulder and seven months later leaning back in a chair with wheels on it led to a broken wrist. I was active and very good at breaking many things beyond her bones, so having a few breaks wasn’t a problem. At age 11 I developed other health problems, that later were diagnosed as idiopathic angioedema (random swelling/allergic reactions with no known cause), and asthma. Throughout middle school I struggled with these issues, but they really became severe my first year of high school. Half-way through her first semester of high school I could no longer go into the biology classroom without having a severe allergic reaction that often led to difficulty breathing and hospital visits.
Swelling up a little bit (Picture taken prior to tracheostomy)
                By December of 2008 in my freshmen year of high school I took my first trip to the Mayo Clinic in Rochester Minnesota. After the trip I had been placed on new medications but things continued to worsen. I spent 10 days in the children’s ICU for the idiopathic angioedema and another 10 days at National Jewish Hospital. After lots of steroids, new medications, and hospital time I started to recover. I finished the school year over the summer remaining in the competitive International Baccalaureate program at Poudre High School. I entered my sophomore year of high school determined, though I still had minor struggles. Second semester of my sophomore year I finished as a home-bound student, completing the same work as my classmates but with a tutor assisting me for 3 hours of the week. During this time I held her first fundraiser as my personal project for the local Northern Colorado AIDS Project, a silent auction dinner along with a tennis tournament. Every year I have continued to do major fundraisers or philanthropic events including shaving my head for children’s cancer research for the past four years. Spring of 2010, sophomore year, I competed on the varsity tennis team at my high school where my doubles partner and I took 3rd at the Colorado Girls Tennis State tournament and junioir year 5th at state.
Before the Rocky vs Poudre match Junior year

Junior Year we won Regionals again! (Amazing tennis team, next to me on the far right is one of my favorite people in the whoel world my tennis coach of 9 years, Laura Ecton).
                After lots of tennis I had increased foot pain that led me to see a doctor. A posterior tibial tendon tear was treated with a summer in a leg cast. I got out of the cast at the end of the summer and continued to be very active once again. In the midst of chaos before school started my older sister, Rachel, was in a severe car accident and suffered a traumatic brain injury. Rachel was in a coma for the start of my junior year of high school. Right before the school year started I had an incident with my foot leading doctors to believe that I had fully torn the tendon and would require surgery.           Further investigation and an MRI of the foot showed that there was more than tendon issue. I had a stress fracture, after only walking on my foot for two weeks out of a cast. The MRI also showed what looked like soft bones throughout the entirety of her foot. Another cast was on my foot for four more months, and another visit to the Mayo Clinic. Dr. Salman Kirmani, a former geneticist at the mayo clinic, did not think the frequent use of steroids could explain my history of many broken bones at that point (7 up to that point), and the strange results of the MRI. Dr. Kirmani suggested based upon my low alkaline phosphatase that they send for genetic testing for osteogenesis imperfecta and hypophosphatasia.

Rachel's Second Week at the Phenomenal Hospital Craig Hospital

Rachel's Field Trip to Go Bowling her last week at Craig
Rachel practicing her walking skills at Craig hospital
 My sister is truly amazing :) There isn't a day that doesn't go by that I don't thank God for letting me have a second chance with her and not only show me how much I truly love her but how much I should be greatful for every second I spend with her and every second that I get to spend knowing she is doing something so amazing in the world.
Rachel riding the bike at craig and Pere practicing good posture

              
        As my foot continued to recover at home, the tests were sent out and would be back within 8 weeks. Rachel continued to recover from her accident at home as well, and started taking college courses again that spring. By the second week of tennis season I was playing again and had several months of no episodes of angioedema. Dr. Kirmani called with the test results that showed I had the infantile form of hypophosphatasia, though it was only one mutation that caused the malformation. Though it was scary the reality was nothing new would really come from this diagnosis. A mentor of mine made a point that I had been living with this her entire life and now it was just diagnosed, she had already made life adjustments based upon having lots of broken bones, though these weren’t limited life changes. My doubles partner and I once again placed at the state tournament and also became conference champions for the second year.
My cast at the guggenheim museum in new york

          Going into my senior year of high school Julia began looking at colleges, mostly ones that were greater than 500 miles away. I dreamed of playing tennis for a college as well as studying pre-health sciences and studio art. Coe College became my home for my freshmen year of college
 Cake I made for my fellow Kohawks for our individuals conference tournament



Profile Picture for the Team Roster Freshmen year
where I played tennis, and swam for the school prior to more health complications. Spring of 2013, my freshmen spring semester, I began to struggle again with stress fractures and episodes of angioedema. A total of a month long stay in the hospital in Iowa led me to take medical leave from Coe College.
                Back at home I continued with my courses at the local community college, and made the decision to continue medical leave in order to gain better control over the angioedema. I had always had a strong interest in becoming an emergency medical technician en route to her career in the medical field. Throughout the first year at home I obtained her EMT certificate from the Front Range Community College program, though this did not come without its own set of hurdles. Phenomenal instructors, peers, and friends in the program advocated and mentored me such that I completed my certificate despite circumstances that often placed limitations on my ability to complete clinicals and be present for some classes. In the spring of 2014, though a semester late, I became a nationally certified emergency medical technician and certified in the state of Colorado. Lifelong relationships both mentors and friends came from the EMS classes I was blessed to be apart of. Finally being a patient paid off and gave me a unique perspective as a clinician.       

       My passion is being a provider in the medical field, especially EMS; however, I am even more passionate about giving back to others in every way of my life. I still get the opportunity to go and learn from EMT students as I play a patient for them in their skills labs, and become more inspired. My dreams are to continue into the medical field and be a phenomenally rare provider that I have seen. I also hope to help fill the void in patient care for rare patients in pediatrics through their young adult year’s maybe even just rare patients in general. I hope that one day I am able to be an instructor that inspires others the way so many of the instructors, teachers, professors, mentors, and individuals have in my life. As we learn in biology there are emergent properties of life. You can have all of the bicycle parts on your garage floor but it is not a bicycle and does not function as a bicycle until all the parts come together. I truly feel that my life would not be the same without having had the struggles I have had, and most importantly the people that have helped made me who I am. Today while I am in school studying to be a doctor someday my amazing sister is teaching English in France after graduated from Colorado State University earlier this fall. Every day of my life I have looked up to my sister, even though there have been some days its out of envy. 
One of the Many Halloweens as sisters :) 

Sister Pictures January of 2014, Photo Credit: Janna Dickerson


Rachel's "Birthday" Where She got to Celebrate turning 21, Photo Credit: Jenni Williamson
Rare Disease day 2012, sporting our HPP awareness shirts

A goodbye celebration before Rachel went off to France, pedicures as sisters