With every day that passes, it all feels

With every day that passes, it all feels more and more real.  It wasn’t so long ago that I was sitting in my elementary school hallway with my best friend, having my father read “Clifford, The Big Red Dog” to us.  We would beg him to stay longer, even though we were supposed to head back to class, and he would find a nice spot around the corner to read one more book to us.  

And it feels like just yesterday that same girl and I were stuck in traffic exiting the Taylor Swift concert, talking about how in just a few months, we would be officially college students.  I remember we looked at each other in silence, and just shook our heads in disbelief.  

I have registered for classes, chosen my major, and have gone through every advising I could possibly go through.  I even have been assigned my dorm room and hall.  It’s all moving so rapidly; I don’t even have time to soak it in.  

A few months ago, I had decided that I wasn’t going to live on campus.  But after long discussions, tear fests, and late-night racking of my brain, I have come to the firm decision to at least try to live on campus.  I mean, I am provided with the best dorms on campus at Barrett.  I got registered with the Disability Resource Center and they have done and will continue to do incredible things to help me feel at ease throughout my college experience.  They even put me in my very own room so that I can relax and cool down when I’m not feeling all there.  And even better, I share a bathroom with my best friend, and she will always be willing to lend a hand on those days.  

Things seem to be falling in place, we went shopping for decor and had no issues deciding on a color scheme, we’re both the same major, and I actually think I’ve gotten some great professors.  

But my God… I’m nervous.  

I’ve never been good with being away from home, and more specifically, from my mother.

It has been something I’ve struggled with for my entire life, and probably will continue to for the rest of it.  There is no doubt that I improve with every single day that passes, but I hate change. Especially change that involves being away from her and home.  

This whole summer I have been working on being away from her and home, just to try and adjust for University.  (This is partially why I have been MIA lately).  I’ve been staying at my cousin’s condo while he is out of town frequently (where I am right now), and I have been staying at friends’ houses as well.  These, though seemingly simple-sounding, are HUGE hurdles for me to have overcome.  It wasn’t too long ago that I could barely spend a full day away, let alone upwards a week.

But last week I took the plunge.  I never thought it would be that hard.  My boyfriend and I decided to travel to San Diego for 4 days and 3 nights.  I was so excited and not nervous at all. After all, close to nobody calms my nerves like him.  

We drove there with no issues, and we hit mission beach and laughed and ate and simply had a blast.  But then as evening fell, and we hit those California Highways, tears started streaming down my face.  They wouldn’t stop.  Nothing I did worked, and it hasn’t felt that bad since I was younger.  Not even Zach could calm me.  We got to the wonderful hotel and I curled up in a ball and sobbed for hours.  I felt horrible for being such a downer, which only made me sob more.  I was panicking and hyperventilating.  I called my mom and we talked for a while until I calmed down.  In my mind I just kept thinking, “I wanna go home.  Please let me go home.  I can’t do this.  I’m not ready.  College isn’t right for me, I can’t move out.”  

I felt better for a little and then it started again.  This was the cycle for the entire night.  

But I got through it.

It was sadly one of the hardest things I ever had to do.  But it was also one of the only times I really forced myself to do something I didn’t want to go through with.  By the second day, I was fine.  I had a blast.  We created so many memories and had so many good laughs, and I feel so proud of myself.  I never, not in a million years, thought I could have done that.

But I did.

And I feel more ready then ever.  

Oh No, Another One of “Those” Posts

Warning: Rant Post Ahead! 😉 

Why don’t people understand?  I’m so frustrated with my peers, my friends, and just human beings in general.  I feel like there is no such thing as common sense to other people, or even just a bit of sensitivity.  I was told as I grew up to let unkind words simply roll off my back.  That they weren’t worth my time or energy, and that they are usually said out of ignorance or jealousy.  This concept always remains in the back of my mind while I endure the forceful strike of nescient words, yet somehow these muttered phrases continually breach my protective barrier.

Yes, I realize that I may be a teeny tiny bit sensitive, commonly letting upsetting situations replay in an infinite loop in my head every night.  I also realize that people don’t always have bad intentions behind their words.  With this being said, I still can not comprehend how some things get through people’s mental “filter”.

About a month ago I had a doctor’s appointment in which she decided to fill out some forms to help me apply for a handicap plaque.  (This is mainly to be used in the summer and at college next year where parking is horrendous and I would be forced to walk lengthy distances).  I went to the DMV and successfully obtained it.  It was a weird experience.  I walked past the mass amounts of grumpy people waiting for their number to be called, gripping my new handicap plaque close to my body, in an attempt to mask it.  It peeked through and I could feel the sharp stares of these strangers as they followed me with their eyes.  I could just imagine what they were thinking… “Why does she need that?  She looks perfectly healthy.”  “She can walk just fine, she doesn’t deserve that.”

I felt tremendous guilt and shame for obtaining something that is usually reserved for the elderly and people in wheel chairs.  For this reason, I vowed I would only use it when I absolutely HAD to, leaving the spaces for people worse off than I am.

This brings me to one day at school.  I wasn’t feeling well at all, and it has finally hit 100 degrees where I live.  I decided to park in the handicap at school for the first time, since no one ever parks there anyways.  I figured the extra steps saved by parking closer, would provide me some extra energy to perform well in school.

I pulled in and grabbed my backpack and started my trek to my classroom.  Next thing I know, I hear the sound of wheels blazing across the concrete toward me.  I hear a shout, “You wait right there!  Hey!  You!  Come back here!”  I turn around and see my school security guard speeding up to me in her golf cart (which I have yet to see her step foot out of).  “You parked in the handicap space.”, she informs me.  “Yes, I did.  I have a handicap plaque hanging in my window”, I reply.  She proceeds to curtly state that I was not handicapped and that she doubted me when I said I was and that I got it from my doctor. I’m horrible at handling situations where I am being confronted by authority, so I stuttered my way through an explanation of what POTs is, and why I need it on some days.  She gave me a smirk and sped off.  I stood there, hurt, and in awe at what just happened.  I slowly walked to my next class, (art, thankfully), and started to take my frustration out on my painting.  Next thing I knew, there were tears steaming down my face and falling on my paper, creating a tiny puddle that my classmates stared at.  I attempted to wipe my tears away discreetly and pass it off as allergies.  I had never felt so low, and I’m not exactly sure why this hit me so hard.

Just when I began to get over this, my friend asked me for a ride home.  I obliged, and she followed me out to my car.  This friend of mine has never been the most sensitive person, so I shouldn’t have been surprised when she expressed disapproval for my handicap parking.  “Why are you parked in the handicap spot?”  “My POTs, remember?”  “Oh.  But you’re not handicapped…  You don’t really need that.”  I again, tried to stutter my way through an explanation of my heat intolerance and how any energy saved is beneficial to me.  She blankly stared back at me, then looked down at her phone and texted in silence the whole way home.

I’m just sick of people jumping to conclusions and assuming that things come easily to me in life.  That I “cheat the system” and that I just take advantage of what I deal with to get special treatment.  Just this morning, I was talking to my friend  before school.  I told him I didn’t have a class until 4th period, and he asked why.  I told him about my POTs and his only response was, “Oh.  I wish I had something like that so I could sleep in and miss school.”

How I’ve felt lately…How do I get out of this slump?!

I guess that statement is what pushed me over the edge and “inspired” me, (for lack of a better word), to write this post.  I apologize from the bottom of my heart if this post sounds whiny or makes me come off as a “Negative Nancy”.  I just felt that I had to release my frustrations some how so I could carry on with my day as normal.  What better place to vent than to the people who understand what I’m going through better than anyone else?

Thank you so much, to each and every one of you.  You all really keep my going, your comments, your individual posts, your inspiring/motivational words; it really means more to me than any of you probably realize.  Love you, guys!  🙂 ❤

Inspiring Blogger Award! :)

A little while ago I experienced the honor of being nominated for the “Inspiring Blogger Award” by “belowtheradar002“.  I’m am so so grateful to even be considered amongst the list of great bloggers mentioned.  I can not express enough gratitude to Amanda and Katie for brightening my week!  Thanks girls!

The Official Rules of Acceptance are as follows:

  • Display the Award Certificate on your website.
  • Announce your win with a post and link to whoever presented you with the award.
  • Present 15 awards to deserving bloggers.
  • Drop them a comment to tip them off after you have linked them in the post.
  • Post 7 interesting things about yourself.

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7 Interesting Things about me:

1. I’m only 4’11”, (AND 3/4 for your information!), and I’m 100% done growing.  This used to get to me since all my friends are basically model height.  I think I’m coming to terms with being the tiny one in my group.  😉

2. I’m half Chinese. I don’t look like it, but I love the fact that I have it mixed into me.  I grew up with the culture around me, yummy food included!  

3. I have two birds.  One is a parrotlet, whom I’ve had since I was 14.  Her name is Lulu and she loves to spend every second on my shoulder, day and night.  She’s a feisty one and she hates males… all my guy friends are terrified of her.  She has shown some amazing talents, and as corny as it sounds, has helped me get through this journey of mine.  I recall one particular night where I was sad and curled up in bed with tears streaming down my face.  I heard a rattling around in Lulu’s cage and was amazed when I felt her fly towards me.  She had managed to open her cage, swing the door open using her body weight, and fly to my bed where she waddled up to me and snuggled against my neck.  I’m not sure if she sensed my sadness or if she just wanted to play.  I like to think the first option went through her little birdy brain.  😉  This is what parrotlets look like, just to convey to you guys how cute they are…

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My second bird, Tiki, is a sun conure.  She is a recent addition to my family.  I “adopted” her off of craigslist a few months ago with my Christmas money.  I don’t think her previous owners took the best care of her, as she is still a bit finicky and scared of everything.  Since I’ve owned her, she has quit plucking her feathers out in distress, and is starting to allow me to remove her from her cage.  She’s currently a baby, but when she’s grown her adult plumage, she’ll look like this: 

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My friends call me the “bird lady”…

4. I don’t know if this falls under the “interesting” category, but my favorite movie of all time is the original “Grease”.  I remember one summer where I watched it at least 5 times a day.  When I was younger, I had a huuuuuuuuuge crush on John Travolta because of this movie.

5. I love art, especially painting.  I’m currently working on a portfolio to send in at the end of the year to gain an AP Art credit.  It is definitely something that I am passionate about and wish to improve on throughout my life.  One day, I hope to sell my artwork on the side of my profession.

6. I’m an animal lover and I know for a fact I would be 100 percent content if I were to become some sort of exotic zoo keeper.  (Though I know I would never due to my allergies.)  I have spent hours upon hours researching all the different species and watching youtube videos regarding their behavior.  Might as well delve deeper into my love of animals while I’m at it…  My favorite animal, by far, is the Asian Elephant.  Elephants are beautiful, majestic, and so incredibly intelligent.  Whenever I visit the zoo, I stare in amazement at these creatures.  They possess several human-like emotions, which just blows me away.  I also really like Belugas.  Mostly because they always look like they’re smiling.  And that makes me happy.  On a different note, I’m TERRIFIED of the ocean.  I can only go ankle-deep, and if I feel like something brushed against me, I freak out.  I think this stems from my countless hours of innocent research on the deep seas.  Too many freaky beings out there for my liking…

7. As of recently, I’ve had this crazy obsession with making lists.  Lists of things I love, things I hate, my favorite this, and my favorite that, etc..  This new hobby of mine was inspired by a friend of mine who does something similar.  I now have a good half of my notebook filled with random, mostly pointless lists.  But somehow it makes me feel accomplished and happy.  I actually used this post to make more lists in my notebook ha!  Sometimes an addictive personality can be fun!

Anyway, enough about myself.  Now for the people that this post is really for.  The bloggers who continue to inspire me each and everyday no matter what battle or struggle they face.  These bloggers provide me with creative ideas, motivating words, and helpful advice.  Each and every one of them deserves this award fully.  I can’t thank every. single. one of you enough for creating your blogs for people like me to read, and for…well…for existing!  

1. Life Sucks, So What?!?

2. Bored Sick 

3. Do I Look Sick?

4. Lethargic Smiles

5. Decimawho

6. Musings of a Dysautonomiac

7. Ok, So Far

8. Strength & Saltines

9. The Pillower

10. A Twisted Fantasy

11. Miks Hidden Hearts Alliance 

12. irishdysautonomia 

13. Rocking This Illness

14. My Everlasting Companion

15. Photographing POTs

 

I have some things to tell you all so I will blog again tomorrow!  

Thanks for the love and support.  I truly appreciate you all.

-Jenna 

Hello World!

I’ve been rather MIA lately. I apologize for not being consistent in this.

I have actually missed blogging and communicating with my followers quite a bit. This blog really provides an outlet to vent my frustrations, share my excitement, and to find comfort.

It’s good to be back. 🙂

Anyway, the past few months have been hectic (to say the least). I would love to write what has happened, but that would take far too long and I’m already dozing.

My POTs has been behaving itself fairly well. No horrible flare ups as of recently.

It really gets in the way sometimes, though. I had club pictures for my senior year book the other day and we have to stand and wait in line for a long time, before we have to stand on the risers for even longer… I knew I would pass out if I went, so I didn’t go, and now I don’t get to be in the pictures >:(..

Does POTs ever get in the way of things you really want to do for you guys? Please let me know, because I’m feeling rather bummed tonight..

On another note; it’s 2013, guys! Congrats to everyone, we survived the “end of the world”! 😉 I welcomed in the new year with a big smile on my face.

Here’s to another fantastic year!

What did you do to celebrate New Years/ Celebrate the world not ending?

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Who am I? (My POTS Story)

This blog is for me to connect with others, and the only way I feel I can do that, is to share my story:

My whole life I have felt different from others.  I always wondered why I had such a difficulty doing anything physical.  I always just assumed I was lazy.  (Which I can’t completely deny)  Even in elementary school I was a frequent visitor to my nurse’s office at recess time where I would complain of being dizzy or throwing up due to the heat.  She would shake her head at me, take my temperature (which was fine), and send me back to class.  This occurred practically every day from first grade to 6th grade.  So fast forwarding to High School…  Being an awkward freshman was an almost necessary step in life I had to take, but I wanted to make it easier by joining a sport so that I could make some friends.  My close friend, being the athletic girl I wish I could be, offered to go running with me to train for the cross country team.  Upon my first time running, I puked everywhere in my neighbors yard.  That’s right, my neighbors.  I didn’t even make it past that.  “Man!”  I thought to myself, “I had no idea I was this out of shape!”.  So my ‘training’ continued.  Unfortunately, the more I continued, the worse it seemed to get.  I would throw up the whole day following it, and I wouldn’t recover from feeling awful for several hours post-workout.  It started occurring to me that this probably was not a matter of me being in shape or not.

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Time flew by, and before I knew it, it was my Junior year.  This was supposed to be the most important year academically and I needed every bit of concentration and determination that I could get.  Unfortunately I got just the opposite.  In September of 2011 I made my first ER trip.  I was having awful chest pains that were different than any I had before, rashes all over my body, and difficulty breathing.  My ER doctor didn’t give me the time of day, and to be honest, who can blame him.  So many people come into the ER because of panic attacks, so thats what he wrote me off as.  Just another kid with anxiety and stress in their life.  So after being poked multiple times in an attempt to draw blood, and being told I had “crappy veins”, I went home feeling unsatisfied and sick.  As the days went on, I felt worse and worse.  I wasn’t even able to keep my eyes open during class and my brain felt foggy and sluggish.  I went to my doctor and was diagnosed with mono and possibly a mild case of valley fever.  (She didn’t want to put me through the blood tests to verify that after the trauma my ‘crappy veins’ endured in the ER).  So I went home, rested up, and didn’t feel remotely better for months.  My life carried on, and even though I felt bad, I tried to go to school as often as I could.

I have a huge interest in pursuing a career in the medical field, and during my junior year I was enrolled in a class where I would shadow some wonderful people in different departments at a very prestigious hospital in my area.  I hated missing this class more than anything.  Months after my initial diagnosis, my symptoms of mono were barely noticeable, and I felt good.  That is until I passed out one day on one of my hospital rotations.  That whole morning I felt dizzy and sick, but I was so interested in what I was learning on my rotation that I didn’t want to miss it.  (And I usually felt dizzy every morning, so it was nothing new).  I was standing with a phlebotomist who was performing a routine blood draw that I had seen many times before, and I had been standing for about an hour already.  Suddenly the whole room seemed to spin and I decided to excuse myself to go to the nurses station.  I was searching for some water because I assumed I was dehydrated, and fell back against the wall and slowly slid down.  I passed out momentarily and came to with an extremely friendly respiratory therapist crouching next to me with a cup of orange juice.  He told me to drink it to spike my blood sugar, and just as I sipped some he informed me “But just to warn you, you’ll probably thro-” and at the most humiliating moment in my life, I threw up in the nurses station.  I looked up, and in the doorway was the phlebotomist I was shadowing and my fellow classmate looking down at me.  Never have I felt more embarrassed and ashamed in my life.  It was in this moment that I knew something was wrong with me.  There had to be a reason for me to feel so dizzy every day of my life, and for this dizziness to be so much more severe after standing for a long time.  I went home crying that day, replaying those moments over and over in my head.  In the next couple of weeks I passed out at other random moments when I was out and about, so my mom decided to schedule an appointment with my doctor.  And so began my journey to my diagnosis of POTS.

The next few months I had many appointments with doctors.  I was sent to a cardiologist, who ordered a stress test.  So I went to the children’s hospital to get one done.  Upon arriving at the hospital, they hooked me up to all the monitors to preform the test.  After they hooked me up, they seemed to get a nervous look on their face while looking at my heart rate.  They asked me if I was nervous, I told them no because I wasn’t.  They stepped out and then came back in to inform me that they didn’t feel comfortable doing a stress test because of how high my heart rate was; so they sent me to have an ultrasound done on my heart because they now thought I could possibly have holes in it.  Nothing was found during my ultrasound, so I was sent back to the cardiologist, who didn’t have any answers for all of my symptoms.  A couple of months later, I made another trip to the ER.  This time for severe chest pains, the worst headache I’ve had in my entire life, loss of feeling in my left arm, and a horrible stomach ache.  All these symptoms felt so unrelated, and I was laying on the floor in my room, unable to move because of the pain, just wondering how I got to this point.  This ER trip was better than the last one, probably because they put me in the pediatric ER instead.  (So colorful!)  My doctor found a bad infection in my sinuses through my CT scan, which was the probably cause of the headache.  As for the other symptoms, he didn’t have answers.  He gave me some morphine to ease the pain, and turned the lights off to let me rest.  At this point I was extremely frustrated, and I told the nurse about everything I had been going through the whole year.  She told me that it would be a good idea to see a neurologist.  And thank goodness that she did.  The rest of my time in the ER didn’t go smoothly as I had an allergic reaction to morphine, and had to stay overnight due to my high heart rate.

A few weeks later, I went to see my neurologist.  As soon as I walked through the door he seemed to already know my case by heart.  (Apparently all of the doctors I had seen had been emailing each other about me trying to figure out what was going on.  I felt like I was on House!)  This was the most entertaining doctor’s appointment of my life, as I had to do some of the goofiest things I have ever done.  He turned off the lights and shone a bright light in my eyes.  He told me my pupils barely reacted to the light, and he asked me some questions such as “Do you sweat?” (Which I don’t).  About five minutes later he smiled and said “I knew it the second I saw your case, you have POTS!”  My mom and I were confused, as we have never heard a thing about this disorder.  He proceeded to inform us about what it was, and he told me that my case is one of the most severe he has seen in his career.  He said that my case of mono earlier in the year damaged my autonomic nervous system, and it made my POTS worse.  Apparently I could have had it my whole life, and I just always thought it was normal.  Then he told me the bad news- there is no cure.  My heart broke at this, because there is so much I want to achieve in life, and this makes things a thousand times harder.  But if there is anything I learned through all of this, it would be that everything could be worse, and that I should be thankful that I still have a shot at achieving my goals, no matter what life throws at me.

So that’s my story, and it was long, but I would love to hear each and every one of you guys’ stories, no matter how long they are!

What is this blog about?

Welcome to Teens With Pots!  Despite the title, this blog is for anyone and everyone.  (Not only teens!)

 Let me start off by introducing myself.  My name is Jenna, and I am a 17 year old girl with Postural Orthostatic Tachycardia Syndrome (POTS).  For those of you who don’t know what this is, but are interested in finding out; click here.  I am starting this blog for a couple reasons.  While my diagnosis of POTS was recent, I find that I feel rather alone through what I am going through, despite wonderful support from my family.  While I was wasting my time feeling all lonesome, I had the sudden realization: “I can’t be the only one out there who feels like this.”  I thought,  “Why not try and connect with other people who are going through exactly the same thing as me?  That way they can share their stories with me, and I can share mine with them.”  So that my friends, is the main purpose of my blog.  Also, as most of us know, there really isn’t much information out there about this debilitating illness.  (Most doctors don’t even know about it!) This chronic illness is close to unheard of, and when people do hear about it, it is often overlooked.  Bringing attention to POTS will help everyone around us understand what’s actually going on with us, help those undiagnosed get the help they deserve, and to ultimately aid research in finding a cure.  So along with connecting to others, this blog’s intention is to raise awareness.  As cheesy as it sounds, if we all stand together to raise awareness, change will happen.