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

Thank You Champ Camp

To Whom This May Concern:

            If you take any from this letter, let it be: give to Champ Camp. By the end of this novel, you will want to give everything you can: time, energy, prayer, financial support, or just to shake the hand of anyone who has given to champ camp. You will want to have the autograph of some of the people in this letter and have your picture taken with them. They are famous in their actions, not because they have been on the news, but because there are ripples everywhere from what they have given to this world.

            I don’t know exactly what “god’s work” is, but I’m pretty sure Champ Camp would fall under that category for those who do know.

            I was not a camper at Champ Camp, which if I went back to that 11 year old me I would have dragged her to camp no matter what she said about asthma. I wish I was a “lifer,” but I’m happy that I went to camp at some point. I was a camp counselor for a total of 10 days. The most important 10 days of my life. Someday I will be singing the banana song again, but for now I can only share why you should care.

            Here is my story of how champ camp saved my life in more than one way, and why you’re going to pull out your wallet right now. Sign the check. In the line that says who to, put “American Lung Association of Colorado, Champ Camp.” In the line that asks what you’re giving leave it blank for now. Now you don’t actually have to do this, but trust me you will at some point. If you’re hearing or reading this you’re a part of the champ camp community in some way and you’re already probably giving. Even if you can’t give financially, I can tell you that if you give time, you’ll get your own gift back. (You will want to give something to Cindy and if you don’t want to its only because I told you, you will want to and you’re just as stubborn as I am.)

            From the very beginning I learned these people—Champ Camp: counselors, campers, leadership, respiratory therapists, nurses, and doctors—they’re special. I can only hope to grow into ½ the person that each one of them is already.

            The first year I went to camp was when I was 17. It was the first year in 5 years without a hospital stay, an exacerbation of my special powers, and the first time I would be at a camp in 5 years.

            The last time I had been at camp I had welled up and my throat had closed because what we had thought was an environmental allergy. *Spoiler alert* I went the whole entire week without problems. I actually got to run, I mean go for a run, kind of run, awesome, with some of those special people, one of which was “stewie,” my favorite RT. (Okay Guy you get 1^.25 place).

            Taking a step back to orientation. . .

            The day I drove down for orientation I was so nervous, I had no idea what I had gotten myself into. I just knew the word camp was involved, and I was going to get volunteer hours, not that I actually needed more, but at some point it would end up on a resume. Little did I know it would become my life passion. What Cindy and others may not know, (Cindy probably does because Cindy is Cindy), I got a call on my way down to Denver that morning. My Dad asked my mother and I to pull over and to call when we were in a safe spot. My 24 year old debate coach, and mentor was killed in a car accident. As one sanctuary seemingly was taken away I was given another. My mother asked if I would like to turn around. I stated no I had to go to orientation. I could not miss orientation. (Turns out you can miss orientation, there is a second one or something like that but that’s an insider secret so this part will probably be edited out).

            I was right, naturally, I did need to go. For 8 hours (more like 4 I can’t remember) I learned about the place I would come to know as the most amazing place on this earth. I had lost one of the greatest influences in my life, and was given a smile by these strangers at the time. Not because I shared what had happened, but because they opened their hearts blindly and shared funny stories and showed me a community that is so profound.

            Kyle was not the only person I had lost that year. I went to 5 funerals, and missed 2. I should have had to go to 8, but every other day I get to thank god that I my sister is alive. On the odd days I ask why am I not an only child, but even than I’m greatful. August 1, in the previous year my sister was in a car accident and had a severe traumatic brain injury, TBI. Until recently I lost my older sister whom was replaced by a different younger sister in the same body. It wasn’t until the end of the week that I had learned one of the most amazing people at camp also worked at Craig. I also discovered another leader at camp had a sibling with a TBI and our siblings had literally missed overlapping their stays at craig by days.

            That first year at camp I learned more about how to lead with actions rather than words, mainly because I lava bubble blew up in my mouth during our training, but that’s a side story. I also learned more about leadership and being a role model from the 14 year old girls I was so blessed to hang out with and spend time with. Sunshine, and my other co-counselor, Karisma, showed me more about friendship and life than those who have never been to champ camp simply cannot begin to understand.

            I wish the 2^nd year was no different, but I got very very sick. Thankfully whatever angels I have watching over me made sure I had the right people there, though the timing certainly did suck. I don’t remember much, but I am reminded of a few things on a regular basis by my camp mom, PJ. I am lucky to not be a cat and to be a Julia, with a few extra lives. I am also reminded that I push limits a little much. Supposedly I called Cindy the next day an hour or so after being extubated to let her know I would be back at camp the next day. I was supposedly quite upset that I had already missed two days of camp. I may have still had some sedately drugs in my system, but if that call were to be true I would tell you that it was all from the heart. Apparently I may have also argued about going to the hospital in the first place, but like I said the details are fuzzy and I’m pretty sure there is some embellishment here. I am not that stubborn. Thankfully Cindy is a mom too, and all the people I was surrounded by care more than I probably even know and saved me physically that day. I didn’t go back the next day, but I am still alive to share this story with you and make sure you give that check to Cindy.

            I wish I could tell you that I’ve been cured, the doctors figured me out. Apparently I’m special in that way, I’m a little bit of a puzzle piece or puzzle. Unfortunately I’ve used a few of my other extra lives, but someday I’ll get to pay it all back as an EMS provider, nurse, whatever I can do for this world. I laugh when doctors talk to me about counseling and support, not because I don’t believe in either. I laugh because I have had support in ways beyond their imagination. They have no idea where I have been in my life. I have support through a counselor but my greatest support has come from those 10 days. Not just because I am still great friends with everyone I have met (unless they’re not on facebook of course, because only good friends are on facebook), but because of the memories I have from those 10 days. When I struggle in anyway, breathing, or mentally, all I have to do is play some music and look at pictures from my time at champ camp. I go to champ camp and hear the songs, and see the blue skies and smiling faces. Those 10 days will always be with me, wherever I am. I love hiking, being outside, and doing everything (especially things that I’m told no about), but if I had to I could live in a square room with only pictures of champ camp. Though I am sure I would quickly be more insane than I already am.

            I really should have gotten to volunteer at champ camp, I should have had to pay to go to camp. The idea that I got to spend 10 days in heaven for free is just crazy. So until I find a winning lottery ticket, I cannot pay for the entire cost of camp. I truly wish I could, but the best part is because I can’t people like you have the opportunity to be a part of champ camp and know that you’re helping lives everywhere.

            If I never got to go to camp again, I would be sad, but camp is the people not the place. Anyways I’m pretty sure that one day I’m going to be healthy enough and both Cindy and PJ will let me come up and play. Those special people have come to me in so many different ways, through facebook, or even dropping everything and flying 700+ miles to sit with me in a hospital.

            I am only one of thousands and millions of champ camp stories. Look around and you’ll see each and every one of the camp counselors, nurses, respiratory therapists, doctors, or American Lung Association volunteers, they have a story and they are there for a reason. I’ll give you a hint it has to do with blue skies and smiling faces, not a paycheck. Each kid that comes to camp has a story of their own and fighting battles that no kid should ever have to fight. Champ Camp just brings us together because we have asthma.

            When I tell some individuals about Champ Camp, as soon as they hear asthma they laugh. They make jokes as if I haven’t heard them before. I laugh too, because they don’t know how cool it is to have asthma because you get to go to champ camp. We do more rock climbing, ziplining, swimming, hiking, running, and breathing in of life than any other camp does. The best part, the real secret, everyone is learning or being reminded that having control over their asthma empowers them, even the counselors. Yeah we have asthma education once a day, but this learning is secretly in every smile that’s created at camp. I remember the day another camp counselor turned to me and said, I want to have asthma and an inhaler. We include everyone, but if you know that asthma is what ties us all together you’ll be jealous too because we make asthma look good. There is nothing that stops any of us.

I can’t share everything. You will have to go out there and find it out for yourself.

            Do me a favor, give more than what you think you can give to Champ Camp however that may come, because Champ Camp is literally fighting every battle and cause I stand for, and I stand for a lot of causes (just look at my facebook).

            10 days changed me and I’m not even the one camp is really for. Camp isn’t free, we wish it was, but there are still costs even though the volunteers come paid only by the blue skies and smiling faces. If I could give one place a winning lottery ticket, Camp would be that place most definitely.

            All it takes is a deep breath and I can hear the sounds of camp, and see the blue skies and smiling faces. If you think I’m something special, look at camp because I am a star compared to the galaxy of stars champ camp is. Those people, they’re my favorite people, they’re special.

            Each is fight every single important fight there is: bullying, stigma, disease, (sadly this includes cancer), Alzheimer’s, TBIs, just to name a few that I know of. Giving to camp is more than skipping a rock. The ripples are overwhelming and do not miss any corner of this world.

Sincerely,

A grateful champ camper.

The Beginning in The End

          A couple of weeks have gone by and a lot has happened. I am so proud of completing the Whole30 Program yesterday! Last time I wrote was a few days before my trip started and about a week and half of whole30 left. Just like everyone's life, my life got a little hectic and through me some curveballs on completing my whole30. My most improtant lesson was just to (1) plan my "emergency snacks." My second lesson of the past couople weeks was (2) listen to the encouragement surrounding me. 
          Most of last week was spent in Rochester, Minnesota at the Mayo clinic, but a lot of challenges happened a long the way. I knew traveling would be hard because there are so many traditional habits of mine such as having ginger ale on the plane, or eating sweets, but I managed. I brought cashews in with me and I planned on drinking ice tea, or apple juice in ice tea. At the airport, instead of buying chocolate covered pretzels, or any treats I enjoyed two hard boiled eggs from the news stand. (I was so excited to find protein in the airport that I knew was safe for my whole30). On the plane I slept most of the way so food was not on my mind. Once we got to the airport I may have become a little more "hankry" (hungry+angry) and my mother might have been as well. The cinnabon store, chocolate stands, vending machines, and caribou coffee (another tradition of mine when I visit the midwest) suddenly grew to be bigger than big in my eyes. I started looking on my phone to see where I could get food to eat nearby with my mother. A Whole Foods was pretty close and I knew there was "safe" food there too. Because we weren't in Minneapolis for the whole trip, I had to plan again! I wasn't quite sure if Rochester would have a natural foods store, so we bought food for the week, here was my list:
Applegate brand lunch meat, uncured turkey bacon (uncured is important because it is free of nitrates), lara bars (only have fruit, nuts, and dates are used to sweeten them), hard boiled eggs, La Croix sparkling warter, Cocounut yogurt (plain), fresh guacomole, cut cucumbers, cut celery, baby carrots
          The last two days of my whole30 might have been the hardest. I ended up in Cedar Rapids to visit my amazing school friends and tennis family. I thought maybe I just stop now and let it go, but I didn't want to give up and fall into habits again. I wanted to prove to myself I could maintain distance from unnecessary snacks at school. Thankfully I had support that also wouldn't let me just quit either.
         Now that I'm done, I would do it again in a heart beat. I think the greatest change is I'm happy to be me today, and I want to be stronger tomorrow. I don't need a number to reinforce that I am getting stronger every day either. I now strongly believe that for at least me, when it comes to weight, I don't need to weigh myself every week, every two-4 weeks is plenty. I want my food choices to be about feeding my body nutrients to make my body stronger. I also have relearned how much I can control my "cravings" just by planning my alternative options. Going to a movie doesn't mean a bucket of popcorn. Going to a christmas party doesn't mean a plate full of deserts.Going to school doesn't mean eating cookies at lunch. I feel so empowered. I'm not undereating, I'm not overeating, I'm eating just to the right point and feeling great.
      The only step back for me the past couple weeks has been lack of excercise mainly because I have been going from appointment to appointment litterally from 7:30-5, and than the past couple of days I have been graced with spending so much time around friends. I am okay with this step back, and look forward to taking two steps forward throughout the next week as I continue my preperation for my sevend day ride. I don't quiet yet know what my next mini goal is but I think its to do a 70-100 mile bike ride before spring break.
     For now I also have to start fundraising! I am officially registered to do the ride in June, but I have to raise $3,000 and so does my riding partner! If you can help us out here are some awesome ways:
http://www.tofighthiv.org/site/TR/AIDSLIFECYCLE2014/AIDSLifeCycleCenter?px=3044054&pg=personal&fr_id=1630
-collect change every day until May and send us a check or deliver the coins to Colorado or donate online the total amount
-buy a spoke on one of our wheels (selling for $100 each) we'll put your name on the spoke or anything you'd like so long as it is appropriate (email me: beckleyjulia3@gmail.com) to do this
-donate to pay it forward
-donate as a present for someone else
-buy babysitting time in certificate form for 8$ an hour (normally I charge 12-15$ an hour)

We will have other opportunities to help out including events :) if you have any ideas don't be afraid to share!
Thanks for your support however it may come through words, money, or thoughts and prayers :)