I wouldn’t consider myself much of a writer, nor do I like
sharing much about my emotions with the general public. However, special times call for special
measures…I guess. This is my POTS story. Now, you may be asking “why are you sharing
this?” Well, good question. October is Dysautonomia
awareness month. I hope that with my
story and the support of friends and family like you all we can spread
awareness of this silent disease so nobody will have to go through the long,
unknown journey of sickness that I had to suffer through.
I was always a healthy person. I played sports, I ate my vegetables (and
some ice cream too), and I always got the perfect attendance award at school. Nothing in my life could have prepared me for
what was to come.
Around November of my sophomore year I started getting
weekly migraines. I found this odd, but
didn’t think this made me different from any other high schooler getting migraines. A couple of months later these went away, and
obviously I went back to having a killer sophomore year. But then summer came along and it all went
downhill from there. I remember the
first time I felt the strange dizzy feeling.
I was waiting to get into the One Direction concert with my friend. She
had just made me get her a water bottle because she was overheated and felt
like she was going to pass out. After
she had rehydrated, we scooted our way up to the front of the mob of screaming
teenage girls dreaming of dating Harry Styles, and waited for the doors to
open. Suddenly as we were standing there
I felt as if I couldn’t stand anymore.
My hands started tingling, my face went completely numb, and I felt as
if the room was spinning (despite the fact that I was outside and there was no
room to actually spin). I immediately made
my one direction adoring friend abandon her amazing spot in line so I could get
out of the overwhelming crowd of people and maybe blame my dizzy spell on excitement
or claustrophobia. Unfortunately, my excitement
of seeing one direction had nothing to do with these strange symptoms. As the summer progressed my symptoms only got
worse, not to mention more strange things kept happening to me.
By the start of my junior year we had already seen multiple
doctors, all with the same response; “there’s nothing we can do, it’s just anxiety.” As much as I respect medical professionals
and all of their hard work, I knew this was not the correct diagnosis, and so
did my parents. I went from being a
normal healthy child to not even being able to get off of the couch. By October of my junior year I had to be
homebound from school; I was too sick to get out of bed. I was having daily migraines, was constantly
dizzy, never slept, always had stomach aches and felt like I was going to throw
up everywhere (sorry for all of the unpleasant imagery, I’m just trying to be real),
my brain was so foggy I couldn’t concentrate, and the list goes on; but as you
can see I just was not myself and was clearly not healthy enough to do
anything.
Through the grapevine of mutual friends, my mom had heard of
someone who had POTS, or Postural Orthostatic Tachycardia Syndrome. Her symptoms sounded very similar to mine, so
we immediately made an appointment with her doctor. Soon after, in November of 2013 I was
diagnosed with POTS. However my journey
was not over there. After this, it took
me two more doctors and I cannot even count how many medications before I was
able to get my symptoms under control and get myself healthy enough for life
activities again.
I ended up missing over one hundred days of school my junior
year of high school, and only went to school for four periods a day my senior
year because I simply wasn’t healthy enough to make it through a whole
day. It took a while, but with the help of
the correct doctors and trial and error with MANY different medications, I am
finally able to say that POTS doesn’t completely own my life anymore (don’t get
me wrong it’s definitely still there and makes itself known all of the time,
but I’ve learned to deal with it). POTS
isn’t something that will go away, for now at least, I still struggle with it
on a daily basis. However, with the
right management of medications and a healthy lifestyle I am able to live a
normal life again, finally! Two years
after my diagnosis I am healthy enough to workout, hangout with friends, and most
importantly go to college (something I didn’t think I would be able to do for
the longest time).
Now you may still be asking yourself, “Why is she telling me
all of this?” That’s still a valid
question, and here’s my answer. I missed
out on a lot. I suffered and had a long
journey to go through. I’m not telling
you this for your sympathy, or for you to think I’m a freaky sick girl (I mean
think what you want…I guess). Don’t let
someone you know go through what I went through! POTS is not a very widely known illness, it’s
nicknamed a “silent disease”. I went to
eight doctors before I was finally diagnosed with POTS, and if my mom wouldn’t
have heard about it randomly, it could have been eight more than that. I wouldn’t wish this on anybody. All I am asking is that you would share this,
verbally, electronically, or however you need to so we can spread awareness of
Dysautonomia and POTS. Educate yourselves
with the link below if you’re interested, wear blue, I don’t know just do something
this month to spread the word! Thank you for all of your support!
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