Tuesday, April 30, 2013

The Journey to a Diagnosis

     If you are reading this as a patient with autonomic dysfunction or because you know someone who is this  won't be a surprise for you, but autonomic dysfunction is often misdiagnosed or overlooked completely.  I consider it a miracle that I was able to get my diagnosis when I did and as quickly as I did, at a mere twenty-one years old.

     I started getting more noticeably sick and fatigued in high school, but like so many teenagers I chalked it up to going to school, participating in extra-curricular activities, doing homework, and working a part-time job on only six or seven hours of sleep a night.  I would throw up and pass out at least once a month, but I learned to anticipate it.  I would avoid too much embarrassment by calling my mom to pick me up from school.  Within the first month of high school I had had an episode in the middle of class, and after that I would do anything to avoid repeating the experience.

     Imagine sitting in class feeling okay one minute and in the next minute feeling terrible.  The teacher was in the middle of an explanation, and as a timid freshman girl I didn't want to interrupt to ask to be excused.  I thought I could make it until the end of class, but instead I suddenly fell out of my chair, passed out on the floor, and awoke with just enough time to grab the trashcan as I started to hurl.  I didn't want to be labeled the sick girl or bulimic or anything terrible like that, so I quickly learned to heed all warning signs with a wide breadth of caution.

     After getting sick and missing school regularly enough, I went to see the family doctor.  He is a good man who couldn't find anything wrong with me and sent me to see an OBGYN.  She was nice, and after a few tests to make sure nothing was out of the ordinary, she started me on a birth control.  It seemed to help just enough that I didn't have to miss as many classes, which was really my main concern.

     I finished up high school and moved on to college but I kept getting sick more and more often.  Over the next few years I saw a slew of general physicians and physicians assistants.  Most of them tried their best to help me find answers, all of them were eager to order tests, and I got a wide range of misfit diagnoses.

     Thankfully, I am studying medical laboratory science, so I know the lingo and how to question doctors.  Unfortunately too many of the doctors didn't want to admit that they didn't know what was going on, so they would slap on a label and send me on my way.  I am grateful that I knew enough to not accept their diagnoses and not give up.

     I finally got my big breakthrough from a nice PA who was kind enough to listen to me, believe me, and admit when she doesn't know something.  During a checkup, she thought that she heard a heart murmur.  That combined with my high heart rate was enough of a red flag for her, so she sent me to the hospital for a round of tests.

     When my test results came back, the cardiologist said that everything was normal except I have bradycardia.  I pointed out that I have tachycardia, the opposite of bradycardia.  So off to a different hospital I went.  After another round of tests and getting referred from one cardiologist to another, I finally got my answer.

     The entire appointment took about fifteen minutes, probably the shortest appointment yet.  I was set to see an electrophysiologist cardiologist in between heart surgeries, so he was in a hurry. He came in, did a poor-man's tilt-table test, then told me I have Neurocardiogenic Syncope, NCS, and Vasovagal Syncope.  He said that I fit the profile perfectly and it would explain everything I have been going through and all of my wide-ranging symptoms.  He then handed me a copy of some literature and a prescription then told me to make a follow-up appointment for six weeks.

     I had heard of POTS before, and I knew that NCS was similar.  I was just relieved that I had a diagnosis.  I went home and read up on dysautonomia and felt more and more relieved.  I knew that the journey to good health would be hard and long, but I knew the diagnosis was right.  Everything made sense and I felt so happy to finally have an answer.  I am so glad that I was found.

Wednesday, March 13, 2013

Challenges Have Shaped My Life


     How do we act in the face of trials?  It is my personal belief that if we are to survive and thrive, we adapt to whatever circumstances we find ourselves in.  Change may not always be fun, but in the end, I believe that it can make us stronger, better, and more than we were before.  We each go through difficult challenges in life.  As masochist as it may sound, I would not take back the hard times I have had.  They have helped shape who I am today, and without them, I wouldn't have grown into the person I am now.

     I didn't pick my challenges.  In fact, if I had been given the chance to pick my lot in life, I'm not entirely sure I would have had the courage to choose the trials that I have gone through.  Since this blog is dedicated to topics concerning living with chronic disease such as autonomic dysfunction, AD, I will give examples specific to my experience growing up developing neurocardiogenic syncope.

     I didn't realize how much of my childhood and development was affected by my autonomic dysfunction until I got my diagnosis and learned the extent of the symptoms.  I have never had mono, and my autonomic dysfunction was probably present to some degree the day I was born.  I recognize that I was not fully symptomatic until recent years; I did have the beginning of a few of my symptoms associated with AD.  While many of my experiences are extremely personal, I will share a few.  

     I was a very serious-looking young child.  I have a letter my grandmother wrote about me when I was a year and a half old and she described how surprised she was that I was a very sober and content child.  I have always been able to be happy around people as well as on my own.  That hasn't changed.  I love good company, but I also value my time alone.  I can be content so easily.  This picture shows that I certainly did always look pretty serious.  Looking at pictures of myself when I was little just makes me laugh because as sad as I looked, I had such a great, happy childhood.
I look sad, but I was happy, I promise!

     While I was born with a more serious temperament, I am grateful that I have been able to expand myself and take the leaps of courage to open myself to others and the world.  I am naturally guarded, and I personally believe that part of that comes from growing up with some autonomic dysfunction.  As far back as I can remember I have felt sick every morning.  I never realized, however that what I felt wasn’t normal.  When it was really bad, I would complain to my mom, but my poor mother probably just assumed that I was a whiney child because I always complained right before going to school, and I never had a fever or threw up or anything.  She would just tell me to eat a Tums and go to school.

     Even if my mom could have seen the future, there is nothing she could have done for me.  Taking that Tums was really the best thing for me.  It eased my stomach ache, and I go on with my day.  When I learned about AD and told my family, I realized my memories were anchored in something real, and my mom apologetically explained that she always just assumed I was whiney sometimes.  I’m sure that my childhood memories of this are exaggerated in my mind, but this is how it felt to me.

     While feeling sick every day may not have seemed ideal, I learned at a very young age to be happy no matter how I felt.  To this day, I may literally feel like I am dying but I could have one of the best days of my life.  The two are completely disconnected.  I thank my mom for teaching me to be tough.  As she constantly reminds me, we can do hard things.  Thank you, mom, for teaching me to live by this, our family motto.

     I love being outside and everything to do with nature and especially biology.  As a daughter of an enthusiastic geologist, I had plenty of opportunities to climb mountains, wade through streams, learn about the stars, admire living creatures, and examine the detailed workings of this amazing world.  I still cherish my love of nature and I am currently studying medical laboratory science at university.

     Through all the walking, skipping, and climbing, however, I was always more eager to stop and look at things on the ground than get to the top of the mountain.  I never liked to run or even walk great distances.  My dad actually pointed this out to me with the thinking that my AD may be why even then I never much liked standing up for long periods of time, much less hiking at high altitudes.  All that time spent examining things on the ground, and my dad’s patience in not trying to rush me up the mountain but rather answering my unending stream of questions fueled my love of nature.



     Thanks to not wanting to stand all the time, I learned my love of biology.  In fact, I love everything microscopic so much that I want to make a career of it.  I may not ever be able to summit some mountains, but partly because of my AD, I love and appreciate the small things I see around me.  Thank you, dad, for being willing to take the time to examine and explain the little things with me.

     While my daily battle with AD isn’t the most fun way to pass the time, the time in my life will pass no matter how I choose to live.  I figure that I might as well be thankful for my life, and I recognize that my AD will forever be a part of my story.  I thank the Lord everyday for my journey.  There is a very good chance that I will grow out of my AD, but if I have AD for the rest of my life, I am okay with that.

     It will always be a struggle.  It is a struggle every day.  I have good days and plenty of hard days too.  That may not change, but I do have control over the rest of my life.  I am grateful for how my AD has helped me grow and adapt.  I will always choose to be happy in spite of anything my body throws at me.  AD will always be a part of me, but I am not my AD.

     Yes, I am somewhat broken, but I am also so very whole.  Life is beautiful!  I’m so eternally blessed to have the chance to live on this amazing earth no matter what condition my body is in.  Becoming more takes effort, and I am willing to make that fight.  After all, as Elisabeth Kübler-Ross so simply pointed out, “beautiful people do not just happen”.

Have a great day!

Love,
     Emily

Wednesday, March 6, 2013

Ikea Trip

     Shopping and malls are a sure for anyone with autonomic dysfunction, AD.  I’m sure anyone with AD can relate to how stressful shopping trips can be.  The food court is great of course, but shopping means lots of standing up with no place to rest or sit down.  Department stores are especially bad:  trying to find a bathroom is like a high stakes game of Where’s Waldo.  My friends have learned that if we are going to go out, I will need to use the bathroom, even if it seems like I just went.

     I love doing things with my friends, but there are some activities I know I just can’t do without getting really sick.  Thankfully, my friends always understand, and they invite me to things like hiking and camping, even though, in some cases, I haven't gone once in the years I have known them.  Even if I can’t go hike that mountain with them, I feel so included that they still invited me.

     A little while ago, a few of my friends and I made a day trip to our local Ikea. I love Ikea, but I feel like i still under-appreciate it.  Not only is Ikea the best place to buy well-priced furniture, home goods, and Swedish food... Its layout is the perfect for shopping with AD.  Are bathrooms scarce?  Sure, but the store provides a map, and shortcuts make it easy to find a bathroom quickly.  Is walking around still trying?  Sure, but there are sofas, armchairs, and seating everywhere you go.  Half the fun if the store is just looking around and having fun in all of the different apartments set up for show.  Sitting down is part of the experience!

     Although I have never gotten in and out of the store in under 2 hours, I enjoy it.  AD and shopping are fundamentally at odds with each other, but Ikea has managed to bring world peace to the strained relationship.  Well done Ikea.  Well done.  I am a poor college student with AD, but at Ikea I can shop in person and still have a fun outing with friends, not to mention stock up on their amazing meatballs!


Photo credit goes to Mayra.

Sunday, February 24, 2013

The DINET Documentary

     Recently, DINET produced a brief documentary to explain a little bit about dysautonomia.  It is an invisible illness that can be disabling and often goes undiagnosed and untreated.  Many patients grow out of it or go into remission.  Not all cases are severe, and you probably know someone who struggles with this daily.  This is a great video, and I have used it before to try and explain what I go through each day.

     Like the various people represented in this video, we each have different experiences, triggers, and challenges with dysautonomia.  While I have never folded laundry lying down, the documentary does help bring to light and validate physical and emotional challenges that come with being limited by chronic disorders.

     Please note that they use term Postural Orthostatic Tachycardia Syndrome, POTS, instead of dysautonomia or Neurocardiogenic Syncope.  These terms are often used interchangeably to refer to the same overall condition.


     Personally, I applaud the great work that DINET has done.  I highly recommend visiting their site and joining the online community.  Having the support and validation of others that can empathize and understand what I have been going through has greatly helped me greatly.  I am still only beginning to understand how much of my life has been shaped by my dysautonomia.  

     Now that my dysautonomia has peaked,  I especially appreciate the help, tips, and experiences that others have shared with me.  It really does make a difference, and I feel immensely blessed.  So thank you.  I only hope that my posts may help or lift the spirits of someone else who may be struggling.

     If you don't have time to watch a full length video, I would recommend this one to start.  It is only a few minutes and more upbeat.  Enjoy.


Thursday, February 14, 2013

A Valentine's Day Story About Rejection And Getting Dumped

A VALENTINE'S DAY STORY ON HOW I GOT DUMPED:
A Frustrating Tale of Rejection

       It was a brief relationship, sure, but it was still a painful break up.  I had started seeing him last October.  I'm talking of course about my cardiologist/electrophysiologist.  After seeing a list of physicians, physician's assistants, cardiologists, and going through countless tests, I was finally given a diagnosis: neurocardiogenic syncope (NCS) dysautonomia and vasovagal syncope.
       It was like seeing light for the first time.  He was wonderful because he gave me an answer that explained everything that had been happening to me since I was born.  And while I will always be grateful that he was able to give me my diagnosis, I wish he could have done more for me.
       I really shouldn't complain.  There are people so much worse off than me.  I haven't passed out in months... I get close all the time, but I quickly sit or lay down, even if I'm in public.  Since I fainted often growing up, it doesn't even phase me anymore.  Sadly, this is the exact reason that my cardiologist dumped me.  He said that as long as I'm not fainting, my heart is strong enough that I can take it.  He won't treat me for any of my many other symptoms, not even with standard beta-blockers.
       My heart may have been strong, but it felt broken.  He recommended seeing a neurologist next, so after a chat with my primary care, that is what I have been trying to do.  I live in Utah, and I never thought it would be hard to find a neurologist to help me with my dysautonomia, but I have had no luck yet.
       Since I have already made one dating analogy this Valentine's day, I will continue with it.  Finding a neurologist has been like trying to find a date.  I desperately need one, but everyone keeps turning me down.  Not even one little consultation!  Not every doctor knows about dysautonomia much less how to treat it, so it has been hard to be rejected by a knowledgeable neurologist because she "doesn't take patients like me".
       So my search continues.  I have a diagnosis, so all I need now is someone to take me in.  I'm a challenge and a project I know, but I would appreciate it so much!  My Valentines day message is to all doctors:  please give patients a chance.  We pay you, and even a little bit of your time and attention improves our lives immensely.  Please give us patients a chance.

       Love,
              Emily

Monday, February 4, 2013

Thursday, January 24, 2013

Becoming Beautiful People

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths.  These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern.  Beautiful people do not just happen." -Elisabeth Kübler-Ross

     Although, I would dare to say that we do not chose our trials and challenges, they are certainly chosen and designed around us.  Challenges are personal and unique.  I realize that life experiences can only be completely understood by the one who experienced those moments, but I know that I have gathered strength from the experiences, empathy, and understanding of others who have had paralleled experiences.  I have opened this blog in hopes that I might be able to help someone else and help myself by giving a voice to my experiences.
     I hope that I can become a beautiful person.  Defeat, suffering, struggle, and loss come to all of us in different forms, and we each experience handicaps and frustrations.  How we find our way and live day to day is who we become.  May we all become beautiful people.