“Life is a journey, not so much to a destination, but a
transformation. Looking back, doesn’t it sometimes feel like our richest times
come right in the midst of our hardest? But God made us to live in community,
to laugh and cry. To hurt and celebrate with each other, no matter what we’re
going through. And transformation is tough, and we don’t always end up where we
think we will. But we have to remember, that even when we struggle to believe
in Him, He always believes in us. He fills our lives with purpose and passion, if
we just let Him. And the best part of the journey, is that the God of the
universe, sometimes allows us to play a part in changing the world. Isn’t that
a trip?” -To Save A Life
I’ve started my anniversary posts
with this movie quote I don’t know how many years in a row that it has almost become
a tradition-I feel it exemplifies so much of what I feel on this day and what
this day is all about. Seven years ago today, I was diagnosed with Postural Orthostatic
Tachycardia Syndrome.
If you know me whatsoever, you’re
probably thinking “Did Ashley really write her seven-year anniversary blog post
during the first official day of March Madness?! What is happening to the
world?!” Do not fear! This blog post is a compilation of thoughts that I’ve
journaled over the last few months and I’ve just decided to highlight a few in
this blog post talking about some of my thoughts and experiences since I was
diagnosed on this day, March 21, seven years ago as a freshman in high school.
For those of you wondering about my Q&A and requested blog topics, I have
about 50ish blog posts I want to write about (lol) and parts of those may be
addressed here, but most of those topics deserve more time and attention and
detail than I can give them here.
On a positive note, for the first
time in five years and for only the second time in seven years, my Spring Break
was not spent in hospital and I went on our first family vacation since we went
to San Diego my sophomore year of high school-our family went to Colorado! My
dad’s roommate and best friend from college and best man in his wedding, lives
in Denver with his wife and two kids and they have a house in Winter Park. The
last time I went to Colorado post diagnosis was for a family reunion the summer
after I got diagnosed and it was ROUGH-I had a miserable week. Despite Colorado
being my Dad’s favorite place, I personally had not returned in the trips he
had taken with my brothers as I was afraid of having another terrible week. We
were much smarter in our planning of this trip-allowing myself two days in
Denver to recover from travel and adjust to the altitude, taking a full day to
adjust to being in the mountains, knowing my body will have three or so “good
days” in the time we were there and taking advantage of it, shopping at Whole
Foods before we got in the mountains, etc.-and it paid off!
Yes, there were several days where
I couldn’t get out of bed or do much but sitting by the fire overlooking the
snowy mountain caps was a welcomed view. I got to spend quality time with my
family and saw my first ever snow fall! It even snowed eleven inches one day we
were there! My family and I enjoyed some time coming in town from the Hilty’s
house to the Winterpark resort to enjoy the beautiful snow fall and walks
around the neighborhood. We had a family game of Uno that lasted a whopping 45
minutes, college basketball #ChampWeek watching, hot tubbing, making meals together
and even a family Bachelor Finale night! (Side note: I had never watched the
Bachelor before going to college and began watching during Kappa pledgeship
because since all my other sisters were doing it and I wanted to be informed
too! Well…I’ve been hooked ever since. My brothers have been giving me crap for
the last four years about it for watching it and what do you know…now that the
twins both have girlfriends who watch the show, they watch the show too!
However, the highlight I think was watching it with my Dad, who specializes in pre-engagement/pre-marital/marital
counseling. He had never seen the show before and his comments were hilarious. Maybe
I’ll make him watch every week with me!)
One of the most incredible parts of
our trip was that I got to go SKIING! Yes, you read that right! Back in 7th
grade pre-diagnosis, our family went skiing in New Mexico and on the first run
of the first day, I blew out my knee (which we know now was because of my EDS)
and got to have the lovely pleasure of being driven down in one of those
emergency carts-done for the trip. After receiving my diagnosis, I really didn’t
think I would ever ski again. My dad and brothers were planning on skiing for
four days, while my mom and I did other things around the area. On Monday, we went
to the resort and were looking for a place to get a snack, found a place, and
then were looking for a ramp for me to get in. I saw a sign that said, “National
Sports Center for Disabilities” and I told my Dad, “well you know there has to
be a ramp nearby!” We found the ramp and decided to walk in and talk with the
front desk.
I was quite apprehensive to put my name on the waiting list,
as I am not an adrenaline seeker, but I was so amazed by this organization and
their ability to get anyone, regardless of type of disability or severity or
age, down the mountain. Saturday morning, I got to go on a snow cart by a
company called Tetris that was developed by a doctor out of the University of
Utah who worked with spinal cord patients and was frustrated at them not being
able to ski. I hope to share some videos on social media soon, but essentially
it’s a wide cart with skis underneath and I control it by a joy stick (left for
left turns, right for right turns, backwards to slow down and forwards to go
faster) and there’s an instructor behind me tethered to me in case I go too
fast, are headed in the wrong direction, headed into a tree, etc. and another
instructor skiing beside me with a joystick that can override my joystick should
I do something wrong, have a health issue or start to become unsafe. It should
be mentioned that this is only one of three in the world right now and is on
loan to Winter Park until March. The University is hoping to get feedback from
these three and then raise enough money to build 25-30 more and then give out
for free to resorts around the country.
I
got to go on three chair lifts and everything! The first run went well, but mid-way
through the second run, my right turns stopped working, so the instructor was
making all the right turns for me. Then, her right turn stopped working! I
crashed into a mound of powder and some trees but was all strapped in (I wasn’t
going anywhere!) the struggle just became getting me out of the body deep
powder in this heavy machine! It took both instructors as well as 4-6 other
people to pull me out and for the rest of the run, the instructor tethered to
me decided to just ski me down for safety reasons. Bless his soul, that machine
is not light, and neither am I, and poor guy looked like he could sleep for 24
hours once he finally got me down! All in all, it was an incredible experience and
I loved that my brothers and Dad (and Robby Devlin who was with us) got to ski
me some on the second run and my mom got to see me come down the mountain at
the end. I don’t think that’s something any of them thought they would ever see
again! I had an amazing time and am so proud of myself for doing something outside
of my comfort zone and would love to do it again, especially in the years to
come when they’ve fixed the right turns *insert wink*
A topic that I think needs to be
addressed is that when I first got diagnosed, there was this belief that POTS
would go away once my body was finished with puberty, in my early 20’s. This never
quite made since to me, as I thought-if my autonomic nervous system is wired
incorrectly I don’t think that’s something you can fix? About three years ago,
as my research advanced, we learned that this is in fact incorrect. For some
people, their symptoms may decrease after puberty but that’s often because the
cause of their POTS is puberty itself. POTS can have many different routes
causes-Lyme’s disease, hormones, pregnancy, a car wreck, etc. However, since my
route cause is EDS and EDS is a degenerative connective tissue disorder, my EDS
isn’t going anywhere, and neither is my POTS. My doctor confirmed this fact
about two and a half years ago and while part of me was proud- “Aha! I knew I
was right!”, there was a big chunk of me had a hard time of accepting that,
yep, this is yet. And not only am I not going to get any better, I am only
going to continue to get worse. That was part of the decision to go skiing even
though it was outside of my comfort zone-who knows where I’ll be five years from
now, and to finish school now-even though it would probably be smarter and highly
advised by my doctors to take a break-today is the healthiest I am ever going
to be. That’s a tough pill to swallow, and is hard to think about some days-if
I’m in this much pain at age 21, what is 40 going to look like? Will I even
make it to 70? Will I be able to have a career? Be the type of wife, mother and
aunt I have always dreamed of? Take trips to places and volunteer in ways I’ve
always wanted? However, I’ve come to the realization that if you think about
it, we are all slowly dying, I am just more keenly aware, and perhaps that’s a
good thing-it keeps me on track to focus on the important things to me and take
advantage of opportunities when they present themselves.
Medically, as with most things in
life, I refuse to settle. We upped my antidepressant from 100 to 150 this last
month and I have seen some improvement although I have had the opportunity to
participate in some things that could create a false high-Baylor All University
Sing with Kappa and Spring Break in Colorado-so it will be interesting to see
how my body reacts to the “mundane” everyday life. I have no shame in admitting
that I take medication for my anxiety and depression, I’m pretty sure that if
you have a chronic illness, anxiety and depression often come with the territory,
which makes sense if you think about it. You no longer have the ability to have
the life you dreamed of, people continually leave your life, you’re in constant
pain-all of which lead to depression-and then you can no longer predict or have
any control over what happens next as your body has a mind of its own-that leads
to anxiety.
Sadly (and with more crocodile
tears than you can imagine), I officially “outgrew” Dr. Patel and had to switch
to another POTS doctor. We saw this doctor a few weeks ago and to be completely
honest, I was not highly impressed, but am going to continue to give she and
her staff a few more chances, in part because there’s not many options. Yes,
she spent a good chunk of time with us and yes, I realize no one will ever
match Dr. Patel-ever. I truly believe he is an angel-he has a way with his
patients and making them feel comforted, I never once felt like he was giving
up on me, and even when he was frustrated with my case he never stopped trying.
Doctors and healthcare in general are a mess to me. For the most part, doctors
seem to carry an ego about them and don’t like being told something different,
which I can understand-I would want there to be value to what I say after
spending all those hours and dollars in school! However, for a patient like me,
I 99% of the time know more about my conditions than the doctor and not all
doctors are receptive to hearing that, even when I frame it in a kind way. My
case almost always causes frustration with doctors as my body is such an intertwined
mess no doctor really knows where to begin or even try to improve my quality of
life to get me where I want to be; it doesn’t help that there isn’t much research
done on the conditions I have, often risking me being “the guinea pig”. For
example, unless you’re blind, you’ve been able to see I’ve really struggled
with my weight the last four or five years (separate blog post on that to come
if I can ever get the guts to write it). However, when you are in a health care
system where doctors don’t really work together well or communicate, and in
addition they have most likely not seen a case like yours before, it’s hard to collaborate
when you’re working with a dozen doctors in different offices all just giving
it a shot in the dark. All the while, my weight continues to climb, my self-esteem
continues to suffer, and my frustration grows.
So, the question becomes-where am I
seven years in? Most people, especially those I don’t see in person or have an in-depth
conversation with regularly with assume I’m healthier because they don’t see me
in the hospital all the time for extended periods of time when in fact I’m
dealing with a degenerative disease. In all honesty-I’m not in better, I’m just
smarter. My parents are less scared, more informed and increasingly trusting of
me, my gut and my research and smarter in their own decision making. I don’t
trust the healthcare systems and really don’t trust hospitals. I do my own
research. I don’t believe in a “one size fits all” approach for my care as I
know I’m beyond unique and no one doctor, or facility really knows where to
start with me-it’s up to me to find the doctors I want to pursue. I continue to
search for better specialists until I find ones who genuinely care, want to
help my case, are willing to be collaborative and trust me and my experience (I
do know my body the best as I am the one dealing with it every day!)- I deserve
better than mediocrity. I continue to advocate for myself with those around me
and try to use my story to bring awareness to others, so they don’t have to
suffer like I do-I’ve attempted to create Dysautonomia Awareness Day at Baylor
with the Student Body President and want to present to pre-health societies,
med schools, send out info sheets to those in the medical field, etc. I do so
much research and digging and putting pieces together that my brain never stops,
and I really don’t understand why I don’t have an honorary RN and MD already. (half
joking) My body is always trying to tell me something-it’s not meant to work
this way. You can’t force it to do something. You have to be smart. This is
where my child development brain kicks in-I think of Vygotsky’s theory of
scaffolding. Essentially, you want to have goals that are a little bit out of reach
but are attainable with the proper tools and assistance from resources and
other humans.
So, where does this leave me moving
forward? I finish my course work for my Bachelor of Science in Child &
Family Studies with a focus in Child Development in May and will be moving home
to San Antonio to complete my practicum (aka unpaid internship for three hours
of credit required to graduate) this summer. For my practicum, I will be
working at a therapy wellness center, specifically under a play therapist,
which is a field I am considering pursuing. I am VERY excited about it and
think I will be a great fit! I can’t wait to share more as confidentially
allows and I obtain more details as my practicum start date gets closer.
Weddings have become my favorite
form of social interaction and I LOVE that I have entered the “wedding season”
of my life. I had the honor of attending three last fall and have five this
year-one next month for my uncle, one in May in Alabama for a church friend
since elementary school, one in November for a Baylor friend and two in
December-one for my best friend since birth and the other for my roommate of
the last two years. I absolutely LOVE weddings and the social interaction they
provide, and as cheesy as it sounds, they give me something tangible to look
forward to. Until you live with a degenerative illness and every day in pain,
you have no idea how important it is to have things on your calendar that you
know will happen that you can count down to-they give you the courage to keep
going on days that really suck, because you know you have something to look forward
to down the line. In addition, I just really love weddings and always have…In
the midst of all of life’s challenges and the craziness going on in the world,
weddings are the most beautiful reminder of all the good things the world has
to offer. There is nothing more special than watching two people who selflessly
love each other commit to a lifelong Christ like union, while being surrounded,
supported and encouraged by those they love most. I love seeing my friends so
so happy as they marry the loves of their lives, reuniting with other friends
who also love the couple and making new friends as well. Bottom line: If you
want to cheer me up, invite me to your wedding. Kidding! Kind of hehe *insert emoji wink*
The realization of the fact that I
only have eight weeks at Baylor remaining has begun to set in this week as I
sent out texts to friends I want to see on my “farewell tour” as I space out my
time remaining in this city at this school that has blessed me with more I
could’ve ever imagined or dreamed. (Yes, that is another blog post to come). Today
it hit me hard when a friend for an above wedding mentioned she was going to be
sending out her dates and wanted to know if she should send it to my Waco
address or my San Antonio address. My heart dropped like a ton of bricks
knowing this stage of my life that I have worked so hard for is coming to an
end, and my time in the cutest house with the best roommates (yes, another blog
post about that too-it’s about two years overdue) will be over in the blink of
an eye.
If you are anywhere close to being
a senior or graduating, you’ve most likely gotten the question, “So what are
you doing after graduation?” so many times you want to slam you head into a
wall. I promise to make a blog post about my post-graduation plans sometime in May,
simply because emotionally I’m not ready to share with the world yet. What I do
know though, is that Baylor has blessed me with more than I can dream of, and
none of this would’ve been possible-Baylor or the last seven years-without the
relentless support of my family, specifically the dedication of my parents and
the loyal friends who have been there through it all.
