Florinef

Hey POTsies!

School is finally starting to get more challenging for me, and it seems as though stress makes my symptoms worse.  Does anybody else feel this way?

I’m not sure why it would, maybe it’s all in my mind.

My cardiologist is suggesting I go on Florinef.  Has anyone tried this medication and experienced success in relieving their POTs symptoms?  I’m not one for taking medications, but I feel as if I have no choice now that my symptoms are getting worse.  I would love to hear some opinions on Florinef, and if any weird side effects are associated with it!  

 

Jenna

Hey everyone!

I realized that I have a tip for helping beat the heat that some of you may not have heard of!

When it gets hot out, my symptoms get way worse.  I find that even stepping outside causes me to see double, feel dizzy, and become extremely nauseated.

Some of you may still be on summer vacation, and nobody wants to ruin their summer fun by having to go back inside and lay down…  So I decided to share my favorite summer item that helps control my POTs symptoms:

They are called “Pedialyte Freezer Pops”

These little frozen buddies of mine have helped me immensely this summer.  They look and taste exactly like “Otter Pops”, except they contain electrolytes (which help you stay hydrated, among other things).

Here’s the Amazon link to the product:

http://www.amazon.com/Pedialyte-Electrolyte-Maintenance-Solution-Assorted/dp/B000ARTNNI

Whenever I am having a ‘POTs attack’, I like to grab one of these, and I’m pretty much good to go!

And just between you and me: sometimes I grab one of these to fulfill my sweet-tooth.  Even when I don’t need it.  Shhh. 😉

I hope this tip helped, and I will try to post anymore tips I can think of!  Again, if anyone has anything else to add such as opinions about this product, or other tips they use to beat the heat, feel free to post a comment!

Later my POTsies,

Jenna

So yesterday I …

So yesterday I finally mustered up enough energy to go to class.  Even though I felt ill and exhausted the whole period, I am soo glad I did!  While staying home and laying in bed is always nice, it gets boring after a while.  I craved human interaction, and maybe some stimulation for my brain!

Just as I suspected, my classes seem like they are going to be great -the perfect balance of challenging and fun.

I did have to make a few adjustments to my schedule because of my POTs.  I decided that I would have Late Arrival (as POTs doesn’t seem to like mornings!), and early release so that I wouldn’t be too exhausted when the time came for me to do my homework.  On top of that, one of my classes that is in the morning is going to be streamed to me online so I can watch the lecture from home.

I am so thankful that my teachers and school are so willing to work with me and what I have.  I know that a lot of people are definitely not understanding of this mystery illness, but I am lucky enough to have teachers who are!  🙂

Also, where I live it is 110 degrees and up.  This seems to exacerbate my POTs symptoms.  Walking around outside seems as if it is impossible.  I am increasing my water and salt intake even more, but if anyone has any other suggestions to help me out, I would love to hear them!

Well I have to get going now.  I have tons of homework sitting next to me that’s calling my name!  Hope everyone is having a great day so far!

Xoxo,

Jenna

Hey Guys!  Sor…

Hey Guys!  

Sorry for not posting for a few days, I have come down with some sort of virus.  

In the future, I will make a stronger effort to post more frequently.  

As always, I get sick at the most inconvenient time.  Today was supposed to be my first day of my Senior year, but instead, I have laid in bed all day feeling like my head was going to explode.  I came down with this last Thursday, so hopefully I will be better by Friday so I can at least go to school one day this week!  

My goal for this year is to have better attendance at school, and so far my goal has not been met.  😉  

I almost forgot how awful it is to be sick AND to deal with POTs symptoms at the same time…  But I’m finally starting to feel better!

On a different note, I’m so excited for this year!  I’m taking great classes, plus I have a shortened day.  Unfortunately, I had to drop my Health Care Class due to the early mornings before school where I would have to be on my feet at clinical.  I’m still disappointed with that, but I’m happy for the two years of the class that I did get to experience!  🙂  

Before I close out, here are some inspirational words to get all of you out there motivated:

“It is never too late to be what you might’ve been.”  -George Elliot.

Don’t forget that, guys!  Just because you have POTs, doesn’t mean that you can’t strive for what you have always wanted to be!  It may be difficult to get there, but once you do get there, you’ll be a thousand times more proud of yourself than you would be if you didn’t have the challenges that you had to face.  

I will do my best to post again soon.  Goodnight, my fellow POTsies!  

 

 

A Late Night Thought…

I’ve been thinking about how much I have gone through this year, and it really makes me wonder how much everyone else who has POTs has gone through.

This illness isn’t something that’s easy to diagnose, in fact, most doctors don’t even know about it.  It took me several months to get a diagnosis, but I have heard of people going on for years trying to find out what was wrong with them.

How many people are suffering from this out in the world, but can’t get the help they need because there isn’t enough awareness about POTs?

These people are probably desperately hopping from doctor to doctor seeking answers for what they’re feeling.  These people are probably being brushed off and called crazy, just like I was.  To the point where they actually begin to think that maybe they are crazy.

It’s understandable that the general public doesn’t know much about POTs…  but Doctors really need to be taught about it.  It’s debilitating, and it’s awful, and it’s just as real of a disease as any other illness out there.

It’s been ten years since POTs was really discovered.  Yet the vast majority of doctors still don’t know about it.

It’s rather unsettling isn’t it?

Goodnight my fellow POTsies.

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.