How many races are you gonna do?

   When I first wrote this introduction 6 years ago, I was 3 years into the diagnosis of hypophosphatasia and life had only just begun to change.If you sat next to 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 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 used to do a whole list of things: 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, worked as an EMT, work as a caregiver, was a full time student.

That all looks different now.

My name is Julia, and I am 25 ¾ years old. The ¾ matters because that’s another 9 months that I have lived and I feel like that those months matter a whole heck of a lot. If we just stopped at the 25 mark we would be ignoring some of the biggest ups and downs that life has thrown my way in the past, well nine months.
In 2011 I had stress fractures that didn’t look great on MRIs and certainly were not healing. A few gut instincts of amazing physicians lead to going down a rabbit hole of bloodwork and then genetic testing. That’s where I got my diagnosis of hypophosphatasia at age 17. At the time I was still playing competitive tennis and would get to even play my freshman year of college with some minor adaptations. My life looks completely different than it did when I was first diagnosed, because hypophosphatasia is a progressive disorder.

I stopped counting after 38 fractures but in the past year I have lucked out. Really only 3 “ish” stress fractures and one traumatic fracture (not caused by overuse). This all comes down to  that life has changed. I physically can no longer run without fracture. Even the modest mile could lead to a stress fracture let alone walking could do similar damage. I don’t do any contact sports, at all. No rec basketball, soccer and no more skiing for now. I could go on the list of the crappy things but I think the real reason you want to read my story is because I took what my best friend told me and ran with it (well rolled with it). “You are competent and capable, you will be wildly successful and it just might look different.” -Katie Eckert

She was right. I was going to be WILDLY successful. Like do a marathon in under 5 hours wildly successful. She was also right it would look very different. 

In January of 2019 a friend encouraged me to pursue what is called pushrim, the wheelchair adaptive equivilant to running. Special gloves are used to punch or push-rims to move the chair forward. Keep a look out for the sport at the beginning of all the major marathons and the Olympics too! Tatyana McFarden is one of the most famous push-rim athletes for many great reasons!

A few calls, way more than a few actually, later I found myself setting up an appointment with a recreation therapist at Craig hospital. Craig is a world renown hospital for spinal cord injuries and traumatic brain injuries, but also really amazing in supporting the community. Chris, my now rec therapist, took me to the “toy room” at Craig which houses all of the athletic equipment. We briefly looked at handyclces (most people were encouraging me to do this at the time) before I spotted the pushrims and ignored everything else. I told Chris, I want to do push-rim. 

The first day I just got to sit in the two chairs at Craig and see what it was like. I remember the joy and the butterflies in my stomach. I get that same feeling at every start line I touch with wheels now.
A few months went by and Chris and I were able to do some fitting as best as possible in a chair and take it around outside the hospital briefly. April rolled around and weather allowed us to take the chair, the one that kind of fit but not really, to the track. I will never forget how ridiculously hard it was to push the chair around 3 laps over close to an hour of time. Literally less than a mile took forever. It was hard it sucked and I absolutely wanted more of it.

The following months were not without challenge of their own. I spent a total of 65 days in the hospital from January through July. I battled sepsis from my port after being on multiple rounds of antibiotics in attempt to prevent the sepsis. The worst of flairs from my other disease, mast cell activation disorder, consumed my life. My friends became pros at knowing where the closest hospitals were and what to do when I turned blue. They knew what to say to doctors who said “she’s doing this for attention,” and how to support me through it all in the best ways possible.

In July came a breaking point. I wasn’t making wise decisions and took a huge risk that had huge consequences. A trip camping out of state led to a two-week hospitalization for sepsis in a whole other state. Almost alone. Family friends that I had met only once visited every other day during those two weeks while all of my closest people were hundreds of miles away. I wasn’t a stranger to hospitalizations or being far from home home but I had always had friends nearby in my college days.I missed a lot of important things during those two weeks and came home very sick. With a boot on one foot, supposed to be on crutches, a central line in my chest hooked up to IV antibiotics 24/7. . .I began to truly change the direction I was headed. After years of barely managing my world and mainly putting bandaids over things that needed stitches and seriously healing; I started to truly take the time it requires to recover. A luck of the draw with circumstances led me to dive deeply into stand-up comedy as I took baby steps to recovering. 

Laughing over how crappy I looked with a hole in my neck (my permanent trach), my IV line, an broken foot, gave me traction to keep moving forward. The support I found in my community of comedy was just what I needed to find reason to make the wise choices that would lead to some pretty amazing opportunities.

With a central line in my chest still and on iv antibiotics, I reached out to Lisa the Green Events Race Director out of Fort Collins, CO. I simply asked if it would be possible for me to race in the human race 5k in a pushrim chair. With no experience with a pushrim, she did the research and made it all possible. I borrowed the chair 3 days before the race (remember with only ever having done ¾ of a mile around the track) and set my sights on my first 5k. I remember going over and over the course. It really wasn’t complex. A down and back with a slight uphill (which I quickly learned would feel like the biggest climb of my life) for the first mile and half than a slight downhill. By slight I mean any normal runner on two feet would think you’re crazy if you mentioned there was a hill. 50 feet of incline over a mile and half is nothing to fret. So in my head I decided I really was only doing a 1.5 miles. If I could do .75 I could double that. It might take forever but I could.

She believed she could so damn right she did. 

I did my first 5k in pushrim coming it at 37 minutes and guess what?! I won my division and was invited to do my next 5k. In October of 2019, the real blessing came when I found Achilles International, an origination dedicated to making accomplishment possible for athletes with disabilities using mainstream activity. I did my first 15k which quickly turned into doing a half marathon and then the craziest of things happened. I traveled out of state to do my second half marathon in Las Vegas and I didn’t end up in the hospital! I made wise choices, had the support and turned my can’ts into cans and dreams into plans! The next craziest thing happened I did another half marathon in another state! This time I traveled alone, but was never alone that weekend. I even got to perform stand-up comedy on a showcase in the same city I was running in!

Two weeks ago, to the day, I did what I thought was just a crazy idea. With lots of training, binge listening my favorite podcast (Ali on the Run), and a whole heck of a lot of support and sacrifice. . .I did 26.2 miles as a pushrim athlete in 4 hours 54 minutes. I was the first female physically challenged athlete to cross the finish line in Phoenix, Arizona!
So yup, I break easily. I struggle with the basics big time right now. My life is completely changing in how I do it. I am going from the girl who could play 6 hours of tennis competitively to the girl who uses a day chair to go to class and get around campuses. But the difference between shoes and wheels is the difference between walking the driveway and 26.2 miles.

Let me finish with this.

You are capable, you are competent. You will be wildly successful. It is beyond okay if it looks different than the person next to you or the plan you had yesterday. Celebrate what is possible.

“Start where you are, use what you have, do what you can.” -Arther Ashe.

San Antonio End of Day 2 and Oh My Pie The Half is Here on Day 3:

          The start of Day 2 came very early (so early I can’t even remember, I just know it was before 5am). I had to pick up my bib day of due to the delayed flight the night before, but glad I could at least race. The original plan was I would get to meet up with Lauren, a friend of a friend through November project and Team Hoyt.

Which we did! We got a picture through barricades 10 minutes before the start. The true best surprise was seeing the Angels team!!! Stephanie walked up to me in the start corrals and said “You were in vegas, right?” It was instant laughter and friendship with another team from there. We got a picture with Des Linden too! For those who aren’t in the running world she won the Boston in 2018 and is a 2 time Olympian. The start of the race as always was phenomenal, those 3-5 minutes on the course where we lead the pack and are the only ones is pretty special.

                The course overall felt pretty easy, though there were some significant hills for sure. After the race I connected with Angels Team and we made our plans for dinner. A not so quick visit to the expo and I walked out with another hat (I guess this is going to be my think with my races?). Exhausted I went back to my Airbnb and slept. I really needed more sleep but only got a couple hours. After a nap I headed to old navy. I am breaking the cardinal rule and wearing leggings I’ve never worn before (yikes!) but that’s better than being super cold and guaranteed breaking out with hives. Anyways after that I went downtown and hung out on the river walk and did walk around their mall. I know where I’m going today (mararitaville, baby). I mean I don’t know but it sure sounds like a great motivator for after the half marathon this morning. My dad says I’m weak for drinking alcohol since he has been on a no alcohol kick since his time with cancer this year. I pointed out how he regularly tells me he doesn’t know how I have overcome what I have and that he couldn’t, so I deserve a marg.

                Speaking of this year. Wow. It was 11 months ago that my year started on some of the toughest times literally starting with new years day. Sometimes I get asked why I roll. I race and roll because the time I’m in the racer its about bettering myself and it gives me a reason to get out as much as possible with some of the greatest people I have ever met. After losing almost every sport I’ve ever gotten to be good at, I found something new to push myself in. I like the way a friend said it recently “You’re intrinsically athletic, and there is an awareness you have about your body to do things that don’t seem possible for you (to others).” I race because I love that runners high and it gives me a challenge (I don’t have enough. . .obviously). Seriously though, racing gives me a chance to choose my challenge. I love the feeling of being ¾ of the way through and my body goes into endurance mode, or whatever you want to call it. The past 5 months of races are directly correlated to my ability to hit remission again so I’ll take today. I’m going to try not to take a moment for granted today and be gentle with myself. The last picture is of this morning because having the shit I have means waking up early to pre-treat. No lung function drops today is the goal.

San Antonio Day One End and Start of Day Two:

         We left off when the flight was delayed which is the perfect timing to make friends (my airport buddies can attest I have no problem with breaking the ice). I spent about an hour talking to a wonderful individual whom happens to be the director of a phlebotomy department at a major hospital in Denver. Come to find out their brother and they went to CSU back in the 70s (not a surprise). The real surprise is as we talk I mention my passion for Craig and they state they are very familiar, their sibling was in an accident during their time at CSU and makes annual visits to Craig still!!! Even crazier, the sibling was an RA at CSU and no surpise, CSU made a non ADA building ADA to make that a reality. After our talk I made the promise to look into the PA program at Rocky Vista. I still feel like I don’t know what I am doing next year let alone 10 years from now even though I declared I would go to nursing school. And that’s okay, the beauty of this journey is taking the exits that I choose to and following the roads I want to follow.

                The flight was pretty boring, I met a family with kiddos with severe food allergies and we bonded (surprise surprise). Than I made my way off the plane and to my wonderful rental car. I was tempted to pick the VW Tiguan but I drive that everyday so I am in an equinox. A short 15 minute drive to my cute Airbnb that is quite the set up! So peaceful, I have my own room in a large house that is accommodated for around 8 airbnb rooms, all individually booked it looks like. Anxiety was high so I pumped up the tires in the racer and hit the road for 20 minutes. After quick shake out run, I called a few of my favorite people including Dr. Pastor Russ Brown. I couldn’t have been happier to share the progress I have made, but also mention the hesitations I have this weekend. The name of the game is “margin for error” as my dad would say. Making choices for the long term and no “screw it, I want to do it” decisions.

With that in mind I called my other fav, Sam, and we prepped for my short 4 minute set at the Blind Tiger (shout out to Jay Whitecotton for letting me  on his amazing showcase)! I stuck around through half the showcase but had to go to head off for breathing treatments and bed time. I loved the room at the Blind Tiger, and am so very proud of my growth as a comic! If you want a see a glimpse shoot me a message and I’ll send you a clip. For now I am wrapping up my nebulizer treatments and am rocking a solid 350 (perfect score for my breathing test without treatments so I’m doing great managing). Hives are moderate and come and go so we’ll stay on top of the benedryl and hit the ice packs hard post race. Goodnight from San Antonio, in the green room! (literally bahaha)

San Antonio Rock n Roll Marathon Weekend- Day One: Part-Let The Shenanigans Begin

Let me just say I miss my traveling companion (Katie. . .and the friends we made Anthia and Bridget). . .and so the adventure begins! A 4:00am alarm was the start of the last chance to squeeze in some work. The plan was getting at least one airport ride, a few other side rides and make a couple hundred dollars to pad the trip. A few rides in all was going well and I got an airport trip, but something felt off with the car. I couldn’t tell immediately what was wrong. A kind stranger rolled down their window and said they noticed my right rear tire was looking a little flat. I told my rider that I’d need to pull over and check the tire, if it was indeed running flat, they wouldn’t need to pay for the distance I’d driven them, and another driver would pick them up. Sure, enough it was flat. I had pulled over at Jiffy Lube where they happened to be coming into the shop at that time. The guys were kind enough to swap out my spare tire for me for free and observed there was a screw in the tire. A quick trip to Big O Tires where they fixed it for free just in time for me to go home pack and head out the door. The budget is a little tighter than preferred and we will just have to make do with that.

                An easy trip to the airport was followed by my first solo experience of going through airport security with the racer. I made the decision that it would be easiest if I could carry everything and sit in my racer. Somehow all fit in the bags and balanced well enough that I got through security easily. I even ran into fellow Kohawk, Palmer!!! The only hard part about traveling in the racer instead of another chair is it doesn’t fit super easily in all elevators, something Katie and I learned going to Vegas. Again we’re making do and its working out. A very anxious me settled into my gate where I am writing about the beginning of this adventure. The flight of course is delayed which means I will have to pick up my bib for the 10k tomorrow morning (an even earlier morning unfortunately). I will get into San Antonio around 7pm tonight. Hopefully getting my first ever rental car goes smoothly and getting to the AirBnb goes smoothly.

I forgot what it feels like to be super anxious until this trip, haha oh the irony

that I can’t even begin to explain here. So for those of you that watch my facebook, blog or whatever and think I’m superbly confident and fearless, I am absolutely not. Half the time I am using some therapy technique to accomplish my dreams, which are definitely big ones.

 I am getting ready to finish my lovely lunch after meeting a really nice human at the airport who not only helped me grab my lunch (lines with the racer aren’t exactly easy) but treated me to it as well (all to kind!). We exchanged Facebook info and quickly expressed how we both made each other’s days! Natasha will be coming out to races this summer to see me and whenever I’m at the airport I’ll get to say hi!

How I Dominated My Spring 2018 Semester

               Throughout this spring semester I am taking 7 credits, though I initially started with 12. I am taking Organismal and Ecological Biology (LIFE 103), LIFE 103 Lab, and Science of Learning.  My background prior to Science of Learning and Memory includes: my associates degree, EMT certification, college in Iowa. I currently am working on renewing my EMT certification, so that is another academic like commitment I intend to use the techniques learned in our class for. Prior to dropping to 7 credits, I was taking American Sign Language which I intend to also maintain my current skills and potentially retake that class in the future. My goals for this semester specifically are to finish my semester with 7 credits, join the honors program as track 2, and achieve a 3.5-4.0 gpa. As far as challenges outside of class, I have attempted to limit my challenges for this semester but know that I will be facing an increase in challenges this fall as I will have an RA position. I intend to apply my study plan directly to this semester but also briefly discuss ideas for my future courses and challenges. This spring my greatest form of adversity is my health. I am transitioning to being a student at CSU, which is a change that can impact health. There is potential for me to end up hospitalized or with ER visits if I do not make wise choices (more so than the average student), and even if I make wise choices I am at high risk. I will discuss how I combat these challenges as well. First, I will describe my course structure. After describing a course I will apply the best fit learning techniques we have discussed in class. Finally, I will briefly summarize my plan with a schedule and further elaboration on maintaining my plan. 

            My most challenging course is my LIFE 103 Lab, or organismal and ecological biology lab. Technically speaking this is combined with my LIFE 103 Lecture grade, but I consider the lab a separate course. I am sitting at an 83 as we go into spring break but would like to improve my grade to an 88 by the end of the semester. The class is composed of: four lab practicals, initial lab report part A, initial lab report part B, final lab report turn in, nine quizzes

(administered every week that there is not a practical). The quizzes are short and worth 10 points a piece; however, the lab practicals are worth 25 points each and the points are broken down into halves often. I find the lab practicals to be the most stressful as it is identifying and memorizing content from labs but several weeks later. My first practical I received a 20/25 and I am awaiting the score on my second practical but am guessing I received between an 18 and 22 out of 25 total points. I would like to get a 23-25 on my next two practicals. In order to increase my score I need to adapt my studying. While I am putting in the time appropriate for studying I believe I am not as effective as I could be. Though I have spaced to the best of my ability in the past I think I have some new ideas on how to better space my studying for the lab practical moving forward. I also think I have some ideas on how to use techniques we discussed including imagery and organization in ways that I have not used already. 

            Moving forward with my biology lab I

Pictured is my hand drawn out version of the laboratory charts that naturally allow me to interleave concepts over multiple sections and organize the material as well.

am going to integrate the following techniques in study sessions: elaboration, connecting to prior knowledge, imagery, organization, spacing, interleaving. While I will space and interleave in my actual study sessions of biology lab, I will also space and interleave with my other subjects being Biology Lecture, EMT Recertification, and Science of Learning and Memory. I will space my content in my study sessions by including old and new information to study so that way as I review I am not just reviewing one concept constantly. I will interleave the old and the new by comparing organisms we looked at previously with current ones. For example I will use the charts we have in our lab at the end of each section that look at different systems such as excretion and respiratory. I will compare the types of excretory systems such as insects use Malpighian tubules while sponges use filter feeding so they do not have an actual system separate for excretion. Connecting with prior knowledge I will use throughout the entirety of learning my subject as well. The second half of the semester will be more difficult to connect with prior knowledge as it is going to be more ecological based and my background is much more organismal and physiological biology. I am hoping to have a more efficient way of approaching class however by watching short videos prior to reading my text that apply to the lab we’re doing each week. For example in past labs I could have looked at dissection videos ahead of time to allow me to see one way of identifying parts. I think this will help me have prior knowledge going in as watching videos is a very visual process and laboratory is very visually based. 

I will use a few different methods of elaboration, though our class is also set up in a way such that we already have elaboration incorporated as well. In the first half of the semester I utilized personal reference frequently as a method of elaboration as I was able to connect a lot of the material with EMT experience or compare information to how my own body functions as well. Sea cucumbers utilize diffusion for respiration which is significantly different than that of humans who use a respiratory system and exchange gases in the circulatory system as well. This comparison is also a way of interleaving as I am comparing two different organisms. I use organization in this class as we have hierarchies to help break down traits. For example, sponges are the most basal animal, closest to the start of the hierarchy, but are organisms and share common traits with even us, mammals. The hierarchies are called phylogenic trees. The images below show different phylogenic trees taken from our laboratory manual. Though our class naturally generates examples, I am going to try to do a better job of using those examples for studying. 

Pictured is a phylogenetic tree taken from my lab manual (Weedman and Prins, 2016)

Finally for imagery in bio lab I intend to take pictures throughout lab (this is encouraged and permitted) and than use those images to create a power point outline of class. I am going to label these power points for things that will be on the practical. While this imagery is helpful, we discussed in class that single images are not necessarily the most helpful. I am going to try to create interactive imagery cards that help interleave topics but also help me remember different words. For example a squid has a part on it called a siphon while a sea star or echinoderm has a part on it called the madreporite. I would draw a picture of a squid swimming away while squirting ink out of its ink sac (the siphon is how it swims away also the tentacles) and the sea star taking in that ink through the madreporite and that flowing through the ring canal all the way to the tubal feet. In this example I have multiple images interacting. I am tempted to also try to use the house of lochi to help me prepare for each practical. I may draw this on paper to save or write it out and add to it as I go along through class. I think this will just allow me to dual code and is just another way to organize the material and practice using it with making deeper meaning versus just rote memorization. I have described a lot of techniques for this class however I have broken this down into before, during, and after studying techniques in the appendixes. I also have mapped out studying times for each class. I typically like to set aside 5 minutes a day to check my calendar and schedule my next day so I will use this to help guide me as I go. I know I will need to be flexible with my study set times, but they are great starting goals. To keep tabs on how I am studying, I am going to try keeping a journal of what my goals are and what I actually accomplish for accountability. 

On the note of interleaving, I am going to bring in my non-CSU class academic commitment, recertifying as an Emergency Medical Technician. In order to recertify this month (March) I need to take an adaptive computer exam at a testing center by the end of March as well as recertify my Basic Life Support accreditation. I wanted to briefly bring this up since I included it in my actual study plan for the month of March, and it also is just too perfect for so many of the techniques we have described. I also needed to plan out my studying for it anyways. I say I am interleaving topics here because as I write this study plan I am imagining how my concepts all overlap and instead of jumping straight to biology I wanted to go to a similar topic that’s also very different. I must review cardiology, respiratory, pediatrics, obstetrics, trauma, physiology, and a few other topics. The exam is heavily focused on pediatric and obstetric versions of all topics.  Because this is my third time taking the exam as I have to take it every two years to recertify, I am advantaged in my prior knowledge. My prior knowledge also comes from my experience both personal and professionally. I am able to generate lots of examples for different topics. To best prepare for this exam I will generally review, but I will also complete lots of practice questions. 

Throughout my EMT recert review I will utilize spacing and interleaving within my actual chunked out study sessions such that I will mix up the topics I am studying instead of going in order. I will also space out the frequency of which I review topics over time. I have set aside nine days that I would like to spend 1-3 hours every day studying. I suspect that I will space that studying time out as well by studying at odd times such as on the bus, meal times, or when I have a few minutes to do some reviewing. As I review I intend to create a house of lochi to study the topics I am struggling with.

 I also will use interactive imagery to memorize words and concepts. One example of imagery is house of lochi could be helping me organize the chambers of the heart. I could picture walking in through the door of the Mayo clinic. As I walk in I see the atrium. This is the left atrium because everyone from around the world is coming into the right (because the patients are always right) atrium and starting out their visit. Then I see a painting by Jennifer Bartlett on the wall. That painting has 3 houses so I think of the 3 different names for the valves (mitral, tricuspid, and bicuspid valves). This will be helpful because than I can think about how left sided heart failure causes pulmonary edema as I can picture patients getting stuck in the subway (underground pathway) representing the lungs. The pulmonary vein is what the blood leaves to go to the lungs after coming through the left side of the heart. In order to memorize medication doses and other numbers I am going to try the pegword technique. I will do this by assigning a letter for each number and than come up for a word or image similar to the way the memory athletes did for memorizing Pi. Pegword is also helpful because I think of the word surplus when I think of the heart and that is SRPLS and is broken down to System-Right-Pulmonary-LeftSystem. I will use other techniques to help me study but would like to keep this shorter than a novel. 

For my third subject, I am going to go back to the topic of biology. This class is structured to help students be successful and I find its “easy” in that I have experience in studying biology, but difficult because I want to push myself to be the best. Going into spring break I have completed 2/3 exams, have 3/6 homework quizzes completed, and 50/100 iclicker points. Beyond the unit exams we have our final exam as well. The class is lecture based Monday, Wednesday, and Friday. Laboratory helps naturally use study tools such as generating examples, prior knowledge, and imagery; however, laboratory does not always directly overlap with class and can be behind or ahead. So far I started out strong this semester by asking my professor how to be successful in class and his approach was looking out three different areas before, during and after class. I have used this approach to break down methods as I prepared for this study plan and have included those as appendixes. My biggest struggle with biology is probably making sure I have the appropriate prior knowledge because I find myself struggling to read the text “easily.” I am going to try a new approach to this and space my reading out much more. I am also going to generate questions as I read the text, even if I’m not able to perfectly answer the question I know that it will help me further understand the material. 

Finally for psychology I intend to use all of the methods except pegword as I just don’t see that fitting very well for me. I will only describe a few that I find specifically important and helpful. After taking the most recent exam I find myself using house of lochi and interactive imagery more so. I remember studying with our professor before hand and struggling to recall easily the types of prior knowledge. I came up with an image of a student playing chess in an FBI hat (I used to have an FBI hat from camp) while waiting for their laundry. This helped me remember 3 different studies we looked at for why prior knowledge is so important. I think I am going to create images as best I can as we cover studies and do my best to have them interacting.

As I create more images I will try to keep track of them and also have them as locations at CSU.

               So far I am picturing a student studying outside with their laundry going on in the basement of Durward. I could than talk about the elevator for elaboration techniques. I could picture an elevator with 1 student, 0 students, and one with 3 to remember the study that discussed how the more examples you have the more likely you are to remember the topic. I could than talk about personal reference because I think of getting stuck in elevators, and my most relevant way to personally reference all of my current classes is through my EMT experience academically and professionally. I also think using personal reference as a form of elaboration is particularly helpful for me as well because I tend to come up with personal examples and get excited about them. At the beginning of the semester we were talking about study types and specifically manipulation subjected between and within subjects. One technique that I think is well structured into my studying and class naturally, is elaborative interrogation as well as generating questions. Through our discussion topics I find myself asking questions a lot about the material which helps me understand the concepts further. I also naturally ask questions as I go throughout the text, but now I try to ask questions at the end of paragraphs as well just asking if examples are generally true. I do naturally relate this to myself personally as I have medical issues that we briefly cover such as allergies. My favorite topic is mast cells because I understand them so personally and most recently we had an exam question asking what mast cells release in response to inflammation. As I study I find myself using imagery generally as well, though I may try to create more images as I am hoping to take the GRE and MCAT. Long term I find the more deep processing I can do whether through imagery, or examples I am more likely to be able to come back to long term.

Overall, I find this study plan is helping me be confident in how I will finish this semester as well as thinking about future semesters. I think my biggest challenges are over studying in some capacities such that I don’t always give myself spacing, but this can also be a consequence of being hospitalized. When I missed a week most recently I had also missed the prior week of biology class due to my lung infection. Luckily my professor records lectures, but I was having to mass my lectures more than I would like, such that I didn’t have as much space as optimal in between watching the sessions, studying, and attending more sessions. In the end I actually got a 174/200 which is an 88 on my midterm unit exam. This was only 3 questions off of my first exam, and I looked back and found errors that were more test-taking errors than knowledge errors. So I managed to do okay but it was much more stressful. I am proud that I decided to drop my sign language class because that allowed me to not lose my semester and have time for my other classes. I am going to continue to communicate with professors, asking them what I can do to improve in class and utilizing office hours to help me better understand material. I find office hours are a great way to force myself to come up with questions but also interact with the material on a deeper level. I am able to do deeper processing because sometimes we just briefly touch on something that when I go to office hours we can go further in depth on and develop more examples. Most recently I can think of an example where we talked about types of immunity and cells responsible in class and in office hours my professor went over how HIV impacts those cells. I know this is beyond even how we discussed in class thinking about whether or not a word has a certain letter in it to the actual category but I think my example applies. To best describe my plan I have color coded my study sessions and what my focus will be, quiz, unit exam, or final exam. I have not completed my April calendar but tried to go through at least the next coming exam. I do not have my regular schedule on my calendar as that

I have memorized. Every day I have one class either biology or psychology, and on Tuesday nights I have biology lab. 

             

I may have gotten a few lemons but it came with a bag of sugar.

              I have hesitated to share the last month or so of exciting news with extended family and Facebook but can no longer hold out. For the deck of cards I’ve been dealt, it feels like its all magically working out. Less than six months ago I was intent on returning to Iowa, but unfortunately due to my new status as a transfer student lost all my scholarships.

I simultaneously was going through the motions to be a CSU student, and as you all know wound up at CSU. I have absolutely loved my time at CSU and look forward to the coming years as a Ram. Diane Burton (an honors admin) gave me individualized advising before I even met with my advisor. Pending an end of the semester gpa above a 3.5 I will be applying for the Microbiology Honors program at CSU with full support from the honors administration and my current professors. I am excited to share this fall my tuition cost will be completely covered by grants and scholarships as well.

As of a week before spring break I accepted the position to be an RA this fall starting in August (most likely under an incredible Resident Director). When I went through what is called our ExCELS course, I had accidently forgotten my trach cap for the day so I started my introduction with “Hi I’m Jules, I have a trach and normally its capped but I forgot it. . .so you’re going to see me put my finger on my neck a lot. I have health stuff, I’m super open about it and happy to answer questions.” A few minutes later my RD running the session shared that she too has health stuff and how that would impact our day. We had a conversation about what it might look like for me to be an RA and we’re both confident I will be successful.

Don’t worry I’m still nervous as all get out about how this is all going to work out too. I have also accepted a position as an EMT to volunteer a few weekends working with seriously ill kids, and two weeks of volunteering as an add on this summer of fulltime fun.

How is my health you might ask? I haven’t been epi free, but I have been hospitalization free for 31 days. I am back on my full dose of Xolair and expect complete remission from my mast cell mediated issues over the coming months. I have gotten official word that I will start Strensiq (the enzyme replacement therapy for my bones that relatives have known about for awhile) on May 11^th in the Immunologist’s office. We will know within a year how that is going and if it is making the difference we hope to see. In the mean time my biology tutor loves using my medical history as fun facts to get her middle schoolers to pay attention. I love that she is spreading awareness with a very attentive generation.

Finally tomorrow I take my national registry exam to hopefully recertify for the 3^rd time. If I don’t pass tomorrows exam I will have a month to accumulate my CE hours, and I will still have time after that grace period wise to recertify nationally. Here is to hoping one more thing goes my way.

Life has ups and downs and I’ve been incredibly blessed by my professors, departments, friends and family to make my dreams of continuing my education at CSU a reality.

PS I am incredibly thankful for the friends, professors, TAs, family etc that have made this possible whether it be getting me to the hospital when I’ve broken a bone, bringing benedryl to me so I don’t have to leave tutoring, helping me deal with harder moments or our frequent karaoke nights to destress. Your support has made it possible for me to get this far. 6 weeks left of the semester!

What it means to be a 3.0 Patient

This post is in progress. Please email myself Julia at beckleyjulia3@gmail.com with any commentary and questions!

Thursday Night :

Maybe I’d just overworked my body and it just needed a little rest. The sore throat probably wouldn’t last long and I have all the perks of a trach and g tube to manage life from home. As my hands were noticeably blue and lips cyanotic, I began to initiate damage control. A nebulizer treatment, some oxygen, and hot tea held my hope together, but only for so long.

“University of Colorado Health, this is Liv speaking, how can I help you?”

I pulled air into my lungs in attempts to have a clear voice, “Yes, can you page the on call internal medicine doctor?”

The conversation continued as I explained the recent couple of days of just minor fever symptoms and discomfort, but the more imminent concerns of hypoxia and change in status over the past couple hours. Shortly after Liv made final instructions to wait for a phone call, I received just that. I quickly recognized the physician was not familiar with my complex case, but tried to describe things such that it would lead to the answer I wanted, “just stay home, and come in tomorrow morning.” I was honest though too, briefly explaining my symptoms and history. I followed my current concerns with “I do have a trach and g-tube to help as well.” I could amost hear her heart beat change in reaction to the information.

The physician quickly covered the basic questions that she would ask any concerned patient. We discussed the need to go to the ER despite my desperate desire to just get even one more day out of the hospital again before an admission. However, I knew she was right, and I knew when making the call I would be able to trust that an ED visit was most likely going to be the “safest” and preferred choice of the physician.

It didn’t take long before en route to the home hospital I became acutely sick (in my mind) with edema and an occulded trach. I maintained a relaxed pose lacking any kind of distress as hand off was given from the EMS crew that’d picked me up along the way. When the resident recognized me a surge of fear ran through me. What was I like the last time she saw me? Was I septic and confused to extremeness? Was I trying to survive another flair of angioedema without any other help only to be defeated when I failed and landed myself in the ER?

I never asked nor did I know the answer to those questions. I did know that I felt the incredible kindness and compassion flow from her heart. I begged for the visit to be short and that was the original plan and goal. It started. A couple hours later and my face quietly became rose colored and my harms covered with patterns of histamine release. While the fever seemed to disappear and oxygen maintained appropriately I was perfectly set up for a discharge only to have a reaction that mimicked Will Smith’s infamous scene of chugging benedryl in Hitched.

I bought myself an admission, but only to the floor. My heart relaxed a little knowing just months before this identical ER visit would’ve been a mandated ICU stay. We had progress, in my books.

Greeted by my family on UCH’s med specialities floor I took in the sight of my loving team members from beyond past to most recent. An overnight stay seemed like it would really take care of most things and hopeful to return to our white picket fence of a yard and playing with my dog. The following morning resulted in a low fever of 38 C. A minor concern in my eyes, random fevers and respiratory buts felt routine. Anna, my RN, continued to laugh and joke and smile with me but stopped talking about “getting out of here to get to go have fun” and focused more on relieving the symptoms as they piled on. Within 24 hours my temperature spiked to 40 C and stayed there. Tylenol and the kitchen sink couldn’t do much. I tried to grin and ask about going home for Christmas but the mood of the room changed. Anna expressed concern that out of her experience being my nurse so frequently I was more than just a little sick to her. She compared my status to that of when I had sepsis last.Days blurred together as Toby sat on the end of my bed only leaving my side for short bathroom trips.

When kids are sick most of the time they cling to mom or dad or family. I have an extended family made up of environmental cleaning staff, CNAS, volunteers, EMTs, paramedics, nurses, nurse practitioners, PAs, respiratory therapists, attendings, social workers, patient advocates, med students, interns, residents, and so many more at UCH. It wasn’t an easy path to come to this point. It involved tears and frustration and arguments just like I’d had growing up with incredibly caring and phenomenal parents. Now I have more trust in providers than I have in the past 10 years, well I guess more than the average. I have the ability to listen more effectively and communicate as well. I don’t give up at the first sign of personality conflict, but try to find common ground. I have discovered the difference between wellness and illness can be an “I” and a “we.” I have a long road ahead of me but I have a team of cheerleaders right beside me, inpatient or outpatient, the latter being preferred. My mind is to my wellness as wind is to sailing.  At the end of the day I feel horrible that I have been almost every type of patient that frustrates all of us, especially myself, the types of patients that get joked about by too many even. I am so grateful and proud to have come to the point where I have. Healthcare 3.0 care as a result of not just one individual, but a family of providers and people. I have learned that even the best of care cannot be 3.0 without the patient’s simultaneous effort to be 3.0

What it means to be a 3.0 patient:

These are just the basics of what I have observed

1.       Communication- everything starts with this. If I as a patient do not present my symptoms verbally or physically (physically, is dependent on my provider being very attentive too), than I cannot expect change. This leads to the first sub point

a.       Honesty comes in all aspects of the care process. Being able to be forefront about EVERYTHING that applies (sometimes its hard as patients to know what to say versus what not to say, and its hard on the other side too to know whats important versus whats not). So both honesty in presentation, not faking symptoms, and honesty in the other parts of the process.

When it comes to honesty I believe that being able to communicate with my provider what my concerns are and what my goals are, have the most important component for me. If I can’t address my concerns, including my anxiety, about my care whether that be the next steps or the past, than I am not going to mentally be able to manage either.

b.      Trust- This is incredibly difficult part of care. I wish I could spend more time with my providers giving them more information on why I make the choices that I do, so they could better understand what is going to be successful for my care and whats not. When I think about the “whys” I think about wanting to explain sometimes my verbal reactions to ideas (not necessarily bad verbal reactions, or whatnot). I want my providers to see beyond the 10 minutes that they get to spend with me to understand that the difficulties I have, go way beyond today. I broke my first bone at age 8, and it took 17 breaks to finally come to the conclusion this wasn’t normal. I have a track record with providers that they have said something, and unfortunately my body hasn’t followed suit. That does not mean they did not practice good medicine, and were not right in whatever instance; however, it does have an impact on how much I “trust” the process of whatever is going on ER visit or hospital stay or outpatient follow up. I have recognized this and worked hard to communicate my concerns, and learn that I am much happier when I can find a way to accept the where my physician stands and trust them. Sometimes this means saying “I am scared about xyz currently, I know this might be ridiculous.” My provider responding, yes that’s a little out there and here is why we don’t have to worry about xyz right now and here is when we’re going to worry about xyz.

2.       Attitude

a.       Gratitude

b.      Love/compassion

c.       tenancity

d.      Not getting butt-hurt

3.       Responsibility

I see you not ICU . . .a non hospital update!

Non-hospital update:

I'm so excited that I get to share that I once again judged debate this weekend. It has been an incredible week and I'm just on cloud 9 right now. I have no idea why, well maybe I do, but I am so incredibly happy after debate tournaments.

Denver East ran a great tournament and I have been asked to go be a judge for their team on the weekends and potentially travel with them. Its not anything official but I am honored that they've taken interest in me.

I am also known as the judge who makes jokes and has a cute dog. I hope this is good? I hope students don't feel they are at disadvantage with Toby in the room, I know I have been incredibly impressed with the rounds I've been a judge in so if they are impacted they truly need a disadvantage to level the playing field.

I also have started swimming again which is very exciting for me as well :)By swimming I mean I've gotten in the pool 3 days this week and by the 3rd day swam a total of 500 yards. I am trying to remember to take it easy and one step at a time. I so badly want to be the athlete that I see in my head but even more badly I want this to last and not result in hospital stays.

I also had a wonderful appointment with my doctor this week and we discussed a return to Iowa. I had a phone call with the dean of students at Coe as well. I have been saying for the past 4 years I am coming back so I'm not making any promises about it all but Coe is in the cards.

I am 10 credits shy of my associates degree after FRCC didn't give me the credits I was told I would get but I am hoping to CLEP out of those 10 credits. This means that really the next step is for me to get my bachelors degree and I'm ready to be a student again. My gut says so at least. The biggest hurtle for me will be finances but I have faith I will continue to apply for scholarships, and work hard to make it happen. I have seen some pretty amazing people work their way through college though it may be a little different in my ability to do so, this is what I want more than anything these days (and the past 8 years).

Everything can change so fast for me in a minute that I'm just taking it one day at a time and enjoying my hope.

I have also been blessed with a great bible study group that I have even face-timed with in order to attend and they were the ones that suggested that. To have people who go so far to include me is amazing. I've always been blessed by the people around me and I feel I have been given way more than I could ever even hope to return in a lifetime so I can only continue to pay it forward in hopes I make a difference for someone else.

I am babysitting for a wonderful family in Denver as well just once a week, but its perfect for me right now. I have eased them into my circumstances and feel already very loved by their family and the situation.

Friday I had the best of surprises and had not 1 but 2 phone calls from my my soul-friend Tess, the one in the navy. She said "I needed a pep talk from the strongest woman I know, so I had to call you." I couldn't believe the words she uttered and I repeated them directly back to her. I love getting support others and getting to be a friend and she is one of the greatest things that has happened in my life. Honestly my whole EMT experience really has been that way (Tess and I met in EMT school). So thank you to my EMS family even if I don't get to be on the streets with you and even in the classroom for the most part, know that I smile about the good things and feel very blessed by all of you.

Every day is a fight for everyone. We all have struggles and there is no way to compare them. So know that I am sending love to you all. I have given beyond what I "can" in the past and I cannot do that again. I end up taking way more in the end. So I am here for you but with boundaries.

Love,
Julia and Toby

"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.”

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!

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.