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

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.

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 3^rd 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