Julia's Journey
Monday, February 3, 2020
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.
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.
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.
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.
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!
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.
Sunday, December 8, 2019
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.
Friday, December 6, 2019
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.
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!
Thursday, February 7, 2019
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.
Friday, March 30, 2018
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 11th 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 3rd 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!
Friday, January 6, 2017
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
Subscribe to:
Posts (Atom)