So, last week I talked about some of the tips and tricks I use to help me stay healthy, Dysautonomia diagnoses or not.  To be honest, I think many of the tips I shared would be helpful for most anybody looking to live a healthier life.  I also gave a brief description of Dysautonomia and my specific diagnoses there as well.  So, if you're reading this and wondering what in the heck Dysautonomia is or are curious about the tricks I use to hack my system, you can find more info on both in my last post here.

Today though I want to get vulnerable and share a little bit more about my journey and how living with Dysautonomia has shaped my life.  I'm a little different than many with this condition in that I have had it for as long as I can remember (many, not all, with this condition have onset later in life).  I don't recall life before fainting, dizziness, and a feeling of generally disorientation from time to time.  As a matter of fact, managing fatigue and dizzy spells became a way of life for me early on.  Before being diagnosed (at almost 24 years old) my family referred to my faints as "something Amanda sometimes does."  Sure, as a small child it scared my parents.  I was even hospitalized in first grade to try to find the cause after a particularly scary fainting episode at school.  However, doctors had no idea what was going on with me so it just became a way of life.  As the faints began to happen more often, I realized I could actually feel one coming on.  At first I'd just try to get to the floor for fear of falling, but over time I noticed that if I got to the ground fast enough I could sometimes keep myself from fainting all together.  While that's powerful information for anyone with a fainting condition, it felt especially powerful as a small child who could go unconscious at any given moment.

Between no diagnosis and my management techniques I was able to have a pretty "normal" childhood.  I'm often thankful that my parents didn't realize what was actually going on in my body because it probably would have altered my story in ways that may not have benefited me in the long run.  I had sleepovers, attended school (with honors), took gymnastics, was a cheerleader, went to dances, and fought with my brothers and sister like any other adolescent.  That said, I did have my struggles.  I was often made fun of by classmates for laying in the floor when I felt a faint coming (I sometimes wonder if I had actually let myself faint in front of everyone if they would've shut their big fat mouths or if they were just so fucking mean that it wouldn't matter either way.. who knows!).  I also remember my body feeling so tired sometimes that I didn't think I could go (especially once I hit my pre-teen and teen years - I think hormones had something to do with it).  There were times my mom let me go into school late because I simply could not get myself going in the mornings (luckily I made good grades and could do this on occasion).  I was often yelled at during cheer practice because I "spaced out" or suddenly had no energy for a tumbling sequence I had just done minutes before. Sometimes getting through a school-day felt like torture and  I couldn't wait to get home so I could sleep for an hour or two, sometimes more.  At one point my mom had me tested for mono, sure I had to have it as much as I was sleeping.  Guess what? I didn't.  It was just the truth of living with a chronic condition the we didn't yet know I had.  Yeah, I'm sure all teenagers feel this way sometimes, but for me it was different; almost debilitating.  Still, somehow I kept going.

As I got older the exhaustion grew.  In college I worked a part-time job and remember being so tired that I could literally barely get myself there.  Then, I couldn't wait for my break so I could drive home to take a 30 minute nap before going back to finish my shift.  Yes, I was that tired.  I'd sleep every chance I got.  It felt like I was living to sleep.  Then, my last year of college something changed.  I started having episodes of tachycardia.  My heart had never really raced before, so this was disturbing.  The dizzy spells and near faints were becoming more commonplace again as well.  If that wasn't enough I was having severe pain in my ribs too - probably due to Ehlers Danlos Syndrome, another condition I was unaware of at the time.  This is when things shifted for me and I decided I really needed to get to the bottom of what was going on.  Graduating college meant I was embarking on the rest of my life and how exactly could I do that if I felt so horrible? 

Before long (and very unexpectedly) I received a job offer that moved me to a bigger city.  At the time, I had no idea how much of a role the new job and new city would play in my diagnosis.  The main reason is because a new job put a lot of stress on me which brought on more symptoms.  This was necessary for me to learn some of my triggers and for my doctors to capture what was happening in my body.  The new city also opened the door for me to meet different doctors that would support me on my search for answers.  In a new city, surrounded by coworkers who were mostly military or had different healthcare needs than mine, I wasn't really sure where to begin.  As I looked over the doctors that accepted my plan I chose one whose name and picture jumped out at me.  No, this isn't very logical, but it felt right in my belly.  So, I called her up and booked a physical.  At my appointment she took inventory of all my symptoms and ordered a few tests, including something called a holter monitor where my heart rate was monitored during episodes.  Once those results were in she felt it necessary to refer me to a cardiologist who performed several more tests.  Among them was another holter monitor which I wore for a longer duration, an echocardiogram, an EKG, and eventually something called a Tilt Table Test (TTT).  If you haven't heard of a TTT it feels like torture to someone with Dysautonomia.  In order to complete the test I was strapped to a table and then tilted to different angles while my blood pressure and heart rate were monitored for changes.  A person with certain forms of Dysautonomia will have abnormal responses to the stress of being tilted in comparison to someone without it.  My response was the shortest the nurse had ever seen, an almost immediate faint with complete asystole.  Yes, my heart stopped.  I guess this would explain the convulsing and greyish-blue shade that overcomes me when I have an episode.  From there, I had a follow-up with my cardiologist where I was diagnosed with Neurocardiogenic Syncope (NCS), prescribed a Beta Blocker, and sent on my way.  Before long my racing heart was long gone.  There was one new issue though and it was MAJOR.  I was sleeping more than ever.  I had just started a new job and I could barely make it through 8 hours in the office without crashing.  Once work was done, I'd drive home lay on the couch and sleep until time to get in the bed.  It was a horrible existence. I could hardly stay awake long enough to even eat dinner and many times I'd awaken and not be able to feel my body.  Of course being the stubborn Taurus I am I thought this had to somehow be my fault and that surely I could "fix" my exhaustion.  I tried exercise, caffeine, different foods... basically everything. Then an epiphany.  My heart wasn't constantly racing.  As a matter of fact a person with NCS often has bradycardia (low heart rate) and when my heart wasn't racing my heart rate was in a pretty normal range.  So maybe the Beta Blocker was bringing my heart rate down too much, making me more exhausted.  After much research and introspection I ended up weaning off the meds and looking for other ways to heal.

As I investigated I made my way to the internet.  There I found websites where others with my diagnosis were talking about their experiences and learned that in Europe many doctors were treating NCS through diet and exercise alone.  Since Beta Blockers didn't work for me and the only other option my cardiologist had suggested was a pacemaker (which didn't feel right either), this was very appealing.  That's when I decided to take matters into my own hands.  I got on a disciplined, less intense workout regimen, started eating more whole foods, continued an increased water and salt protocol, and cut sugar completely from my diet.  Within a week I started feeling a difference.  As time passed I just kept feeling better.  Still, I must admit there was a part of me that thought feeling better could not be this simple.  So, I tested my doubt by eating an ice cream cone.  I slept for three days.  If that wasn't undeniable I don't know what would have been.  Evidently, diet did have something to do with my newfound health.  Now this was 2003 and 15 years ago most people weren't thinking about food as medicine.  So, when I said this was how I was treating my condition I got lots of strange looks and most doctors wanted nothing to do with me.  

Still, I continued on the straight and narrow for years.  Drinking loads of water, eating extra salt, staying away from sugar, and eating a fairly healthy diet overall.  For the most part I felt pretty good.  Then something happened that rocked my world.  I unexpectedly got pregnant.  That was a game changer.  While I had every intention of continuing my eating plan, my body was no longer my own.  Let me tell you, those hormones cravings are REAL.  Maybe worst of all, my sudden need for sugar.  Eventually I caved and, no surprise here, before long I started having health issues again.  I hadn't seen a cardiologist in years and knew I didn't want to return to the one I had seen previously.  He just wasn't my jam.  This hippie mama needed an open minded doctor! So, I turned to my Ob/Gyn for references.  After all, she did know me pretty well and I trusted her to refer me to someone that could balance my need for alternative therapies with modern medicine.  Luckily there was an Electrophysiologist who she knew and thought could really help me.  She sent a referral over and being pregnant meant he got me in pretty quickly.  So, in Spring 2007 I was at my first visit in 4 years.  He started by asking me the changes I had made before the flare and pretty much pinpointed the issue right away.  SUGAR.  One visit and I was back on track.  As emotional as it was for this pregnant mama to give up sugar I knew it was the answer to many of my problems.  So, begrudgingly I did it.  Laugh if you want, but giving up Graeter's Black Raspberry Chocolate Chip ice cream is no small feat when you are with child.  I actually have a pretty hilarious memory of busting into full blown tears as we passed a Graeter's after that appointment.  Kevin couldn't help but laugh and the more he did the bigger my tears got.  Before long I was in the midst of a full on hormonal meltdown.   

Well, it wasn't easy, but I did steer clear of sugar (for the most part).  I may have had a piece of cake at my shower or something, but sweets were very limited if I had them at all.  Before long, it was time to give birth.  I had no idea at the time that childbirth can bring on a whole slew of symptoms for someone with Dysautonomia.  Luckily (or maybe because it wasn't my expectation), that didn't happen to me.  After the birth of my son I was doing surprisingly well.  This issue with childbirth and Dysautonomia can be attributed to the sudden drop in blood volume, but for whatever reason I adjusted well.  I was doing great and my doctors (and I) were super happy about it.  

Somehow I made it through the stresses of the next few years with no major episodes.  The closing of my business, a move back to Dayton, a divorce, going back to work, leaving my house, raising Jagger pretty much on my own, going back to school, none of this triggered full blown issues.  However, looking back it's easy to see that along the way my body was giving me signs to slow down and I was simply oblivious to them.  I thought I was practicing self-care, and in many ways I was.  It just so happens that in the excitement of my new life I had also forgotten how fragile my system could be.  I was having moments of dizziness and fatigue all along the way and I attributed them to being a single parent, working out too hard, and a vegan diet.  So, I made small changes to my workout routine, took days off work to sleep, and started eating meat again.  Those things worked for a bit, but then something interesting happened.  I started having stomach issues.  I'd dealt with constipation most of my life, but nothing like this.  The pain I was experiencing was keeping me from eating and I was losing weight.  It was the final straw.  My body couldn't take any more.  So, one morning I went to work and that was it.  My body had had enough and let me know.  Right there, in my group office area, I had a near faint.  I got to the floor in time, elevated my legs, and lay there shaking until my body had a chance to recalibrate.  Thinking it was a one time thing I took the afternoon off work to rest.  The next day it happened again and I instinctively knew it was time to see the doc.

It was now Spring 2012.   I hadn't been to my Electrophysiologist in 5 years, so it took me a couple months to get an appointment.  Since I was having ongoing issues, my supervisor was kind enough to allow me to work from home until I could see my doctor and get the fainting spells under control.  I'm still grateful to her for that.  Once I saw the Electrophysiologist he prescribed medication to raise my blood pressure and help me get back on track.  I assumed I'd be back at work within a few days.  I had no reason to think differently.  However, it took some time to get the dosage worked out and I was continuing to have other symptoms like extreme fatigue and what felt like near inability to move my arms and legs.  So, I continued working from home full-time for a year or so.  After many doctor appointments and a lot of rest I was finally well enough to try going into the office 2 days a week.  I still struggled with energy and because I had to create a set schedule of which days I would be in the office, I couldn't choose to go to the office on "good" days and stay home on "bad" ones.  This sometimes made things difficult.  Still, after another year or so I felt ready to add a day of in office time to my schedule.  My doctor asked me to give it another month or two to make sure I was completely stable as not to end up worse off.  Around that same time upper management changed in my office.  With that change came changes in protocol.  They had decided they no longer wanted anybody working from home.  Now, I worked for the Federal Government and our union had a Telework Agreement that specifically covered my work arrangement.  So, in the beginning I thought I'd fight it.  However, with the stress of that my health began declining more and after ending up in the hospital I decided maybe it was time for me to leave.  There's a meditation story here that I'll have to share sometime.  Anyway, long story short, I ended up putting in my letter of resignation on a Monday and Friday was my last day.

After that I felt lost.  I had no idea what to do with myself.  I'd been working for as long as I could remember.  I had ideas about what I wanted to do, but nothing quite settled.  For about a year I was in complete darkness.  I didn't know who I was any more.  Everything I thought I believed was being challenged.  Facing my new life was a struggle.

I was living with my ex-husband, in a very unofficial relationship.  We had only been on a date or two and I wasn't sure where that was headed.  Yet, here we were and he was taking complete care of me.  So, where did that put us exactly? On one hand I didn't want to fall into a relationship with him out of need.  On the other, he was taking good care of me and I was starting to catch feelings.  Complex stuff.

That was summer, 2014.  Now, here it is February 2018 and we are in a very official relationship.  It's funny how those things happen.  He is still taking great care of me and I'm going to tell you it isn't always easy.  Even when I'm feeling my best I need a lot of help to keep feeling that way.  When I'm feeling my worst, most everything falls on him.  Plus, unlike me, he has a full-time job outside the home.  So, while I can blog and sell DōTerra from bed, he has to be out and about to fulfill his work duties.  When I'm too tired for date night we stay in.  When I'm too tired to cook he does it, we order out, or eat leftovers.  When I'm in pain he gives me a massage or runs my bath.  He follows my diet when at home.  The list goes on for days.  To some I'm sure it looks like he sacrifices a lot to be with me.  Sometimes I feel that way too.  He never complains about it though and he always lets me know how much he gains from being with me.  So, even if I do sometimes require extra TLC, I know our exchange is a complimentary one.   

If that's not enough to think about my friendships can take just as much work.  Sometimes I make plans and need to change them.  Sometimes a friend cancelling can feel like the biggest of fails (because of all the planning I've put into preparing my body for the event).  Maybe I only have one glass of wine when I used to have three.  Sometimes hanging out means staying in.  Having friendships means I've had to get really good at planning my life.  For instance, if I schedule a night out with girlfriends I arrange my schedule so I can rest the day before and the day after (the same goes for date nights).  Sometimes I don't text back because I don't have the energy or my brain just won't come up with anything new or exciting to say.  Sometimes I text the funniest shit ever.  Sometimes I seem unempathetic when I'm actually just exhausted because I'm deeply feeling their feelings and mine.  Thankfully my closest friends know I care.  They know I'm funny.  They know I want to be there for them, even when I can't be.  That's what true friendship is.

Now parenting, that can be a doozy! Besides the fear of passing this on to my son, it can change the ways in which I have to parent.  Sometimes I feel great and we do all kinds of fun stuff.  Other times I don't.  On those days I may need to rest when he wants me to play.  Maybe he has to care for me when I can't get up to do for myself.  Sometimes that feels absolutely magnificent because it's a reminder that I'm raising a compassionate being.  Other times it sucks because I don't want him to be in that position.  Sometimes dealing with "normal" behaviors is completely overwhelming (probably because living with Dysautonomia means your body uses extra energy to regulate bodily functions, leaving less to deal with daily stressors).  It's always an adventure though and my desire for a vibrant relationship with my son is one of my main motivators.  This is why I put so much attention into staying healthy.  So I can get out and play with him and we can make memories. 

Overall, through every high and low, I can honestly look at my life and know it's amazing.  I've learned tips and tricks to stay healthy and am surrounded by some pretty incredible people.  I am fortunate to have a partner and son who love and support me.  They always make room for my health, no matter what it looks like.  I have friends to laugh and cry with.  I have an unbelievable team of people around me, from doctors to healers to friends and family that add to my joys on the daily.  So, even though I may have been diagnosed with Dysautonomia, I don't feel like I am Dysautonomia.  I am separate from this condition and the relationships I cherish remind me of that every single day.  For that I am thankful.

Thank you for allowing me to share a bit more of my journey with you.  Big love! And if you too have a chronic condition or know someone that does please pass this post along, comment, or reach out.  Health and happiness.