Southern Ground

It has now been a full year since my emergency hospital visit in South Lake Tahoe requiring me to be zapped a few times to keep me alive.  Like I mentioned in the previous post, I have been feeling much more stable, and haven't had any cardiac episodes since my last surgery in July.  I have spent the past couple months taking advantage of my new health by visiting friends and attending multiple concerts. My last trip, that I just returned from, was a trip to Charleston where I stayed with my brother for a few nights so I could attend the Southern Ground Music & Food Festival at the Blackbaud soccer stadium.  I went primarily to see one of my favorite singer/songwriters, Brett Dennen.  I wanted to see him in Athens,GA a couple weeks prior but he happened to be playing the same night as the Fleet Foxes, whom I had already bought tickets for.  So, I discovered Brett Dennen was playing in Charleston and was accompanied by a few other bands that I'm a pretty big fan of, such as The Wood Brothers (from Martin, Medeski, and Wood), Fitz and The Tantrums, and Blind Pilot.  Also playing was a reggae band called Steel Pulse, five other smaller bands, Train, and the Zac Brown Band.  However, I did not stay for Train and the Zac Brown Band.  I had already been there for eight hours, and it went from an empty stadium all day to a packed house right before Train took the stage.  The doors opened at 11 but most people didn't show till a little after 5 (they missed some great music).  I had also already seen Zac Brown Band perform when he played for free in Five Points in Columbia.  The day was perfect, weather and all, and I was able to see the bands I desired amongst a small crowd, so I decided to call it quits and spend the rest of the night with my brother.  All in all, the trip was wonderful. I was able to stop in Columbia for a couple nights and see some friends, I got to hang out with my brother for a few days, I saw some great musicians, ate some delicious food, and soaked up some warm rays, and caught a beautiful sunset on the Ashley River.   I still have more shows coming up this month. Todd Snider in Asheville, Lykke Li in Asheville, and String Cheese in Atlanta.  I can't wait.  Good Times now and Good Times ahead!!!

Below are some pictures and videos of my weekend in Chucktown.

This is the wing on the right side of the stage for VIP's who were served food during the performances by top chefs. Sadly, no one showed up until the end of the day when Train was about to perform.                                               

This is the VIP section, that allows people to be close to the stage.  I was standing behind the gate, they used to keep us non-special people out of that area.  As you can see, there was hardly anyone there all day, but by nightfall, the VIP pit was filled as well as the wings of the stage.

This was the gate that kept us out,  it may seem deceptive, but I was behind this gate.  The stage also had a long catwalk protruding from it, that many of the artists kept making fun of.  You can see it in the left of the picture.

Just hanging out, listening to the Wood Brothers.  I couldn't believe people would pay hundreds of dollars for the VIP tickets and choose not to show up all day.  They had no idea what amazing music they were missing.

This is towards the end of Fitz and The Tantrums.  Train would be getting on stage about 40 min after this picture was taken. 

Fitz and The Tantrums put on a good show as I knew they would, but they pissed the Charlestonians off when they called the city Charlotte twice.  But the crowd sucked anyways, they wouldn't dance, clap, or anything.  The lead singer started calling people out individually which was hilarious.  They were not the only band to get annoyed at the lack of enthusiasm amongst the crowd.

All these people magically showed up right before Train was about to hit the Stage.  This field was empty about 45 minutes earlier.

I had to move into the bleachers because the bass for Steel Pulse and Fitz and The Tantrums was too much for me.  I could literally feel the bass pulsing within me, and I was afraid it might set off my defibrillator.  So I played it safe.  I've been to many shows, but I have never heard bass as loud as this, ever.

This is Fitz meeting and greeting people after his performance.  I think he did it because he pissed off the crowd thinking he was in Charlotte. He was the only one to do this. 

The following pictures captured my last night in Charleston.  My brother lives right beside the Ashley River, and this dock that lies on his street is open to the public.  There, you can catch pretty consistent gorgeous sunsets.  And that's exactly what I did.

Below are videos of the three artists I mainly wanted to see at the festival.  They are in the order in which they appeared.  Each act was followed by a smaller band on a smaller stage that performed for 30 minutes each, while the main acts each played for an hour.  The videos are not entire recordings of their songs, but long enough for you to hear their sound.  If you like them, make sure to check out better quality videos on YouTube.

The Wood Brothers

Brett Dennen 

"Blessed"

Fitz and The Tantrums

"MoneyGrabber"

Leaps and Bounds

Since mid-September I have taken huge leaps and bounds in my recovery process due to the fact that my health has returned enough to start getting me out of the house and enjoying some of what life has to offer.  Just in this past month, I managed to travel across the states solo, attend a couple different concerts, hike up and down stairs, carry around heavy objects, and go apple picking in the mountains.  These various activities act as stepping stones toward a healthy recovery. Some small and others more significant, but regardless of  the size of the step, each one is an attempt at regaining some kind of normalcy and confidence back into my daily life, and so far so good.

First of all, apple picking and climbing stairs may not seem like much to most , but it's quite a big deal for me. The reason why is because the orchard sits in the mountains, which requires a good bit of walking through fluctuating hills while carrying large weighted bulky pales of apples.  In the past 11 months, my total mileage walked probably does not exceed three or four.  Of course this is just a guesstimate, but when it comes to physical activity, including walking and even climbing stairs, I truly have done little to none in the past year.  I even have to take a ramp or elevator when accessible otherwise I get out of breath and overcome with anxiety, although, ever since my last ablation my heart has remained stable enough allowing me to walk about a bit more, and even lug some things around (groceries, luggage, apples, etc.).  So since I have been feeling stronger and healthier, I decided to set out on my first cross-country trip by myself, followed by a couple of concerts when I returned. So far I have had no incidences and therefore I have been somewhat successful in regaining some of my confidence.

The biggest milestone of my recovery so far was the decision to actually go through with the cross-country vacation out to Glacier National Park in Montana.  The purpose of the trip was to gain back some of my confidence, prove that I had the health in me to start traveling again, and to visit all my wonderful friends while relaxing in the crisp fall mountain air of East Glacier.  I chose to fly out of Atlanta,GA because the airport offered the cheapest fares and I got to stay with one of my best friends for a few nights. Three nights were spent down in Atlanta before I departed, but only one night before I had a total nervous breakdown.

See, my friend (Jonathan) lives on the second floor of an apartment building.  Prior to this visit, I had only walked up a flight of stairs a handful of times in the past year, and one of those times,  I almost went into cardiac arrest and died down in South Lake Tahoe.   Needless to say, I lost my breath reaching the top of the stairs triggering some strong and noticeable PVC's (skipped heartbeats), although I don't think the hot and humid weather helped much.  The PVC's elevated my anxiety levels a great deal and got me over thinking, scared, panicked and ready to call an end to my trip, which hadn't even really begun yet.   So I cried and cried some more, and started playing the 'What If' game with myself.   I was afraid if I was having bad PVC's walking up steps in Atlanta, what would walking up steps in 4000ft+ elevation going to do for me, what if I go into v-tach, what if I get shocked and the nearest cardiac care is 90 minutes away?  Those thoughts raced a mile a minute in my head, so I made a few phone calls to get others' opinions and advice.  I proceeded to call my mom, my brother, as well as my friends in Glacier.  And the following day I talked to the doctors at Johns Hopkins and some other friends online and the conversations were unanimous, I must go, and so I did.

I talked about the decision with doctors and discussed the possibility of getting shocked.  They helped calm my nerves a bit and reassured me if my device did fire that means it's doing its' job and saving my life, and yes it will hurt, and yes it will be scary and emotionally draining, but it will save me from a far worse outcome.  Luckily, I never was shocked.  Other than my usual PVC's and constant anxiety, the trip was very relaxing.  It was medicine for my emotional health. This trip not only boosted my confidence but it restored my mental stability, it restored who I am, my personality.  It was good to socialize with friends and just be silly and laugh, and it was equally good to sit in silence and stare at the mountains, and soak up the fresh crisp cool air while reading a book.  I'm just so lucky that I have friends that support me, and let me visit them and annoy them.  It was a much needed vacation, and I had a wonderful time.

One week after returning to Greenville, I headed back down to Atlanta for a small show at a restaurant/bar called The Earl.  This was my first concert in 11 months, my first concert since my ICD (defibrillator), and my first concert since being officially diagnosed.  The artists put on an amazing show, yet I wasn't able to fully immerse myself in the music as I usually might.  Patrons showed up primarily for the last band, Shovels and Rope (Cary Ann Hearst & Michael Trent), which is an extremely high-energy duet with beautiful vocals, similar to The White Stripes. However, I did not make the trip to Atlanta solely for Shovels and Rope, I was also there to see the opening act, Big Tree; an up and coming folk band that is fastly gaining popularity amongst college students.  They have wonderful harmonies and an organic sound and look to them.  But, I had a problem,  as much as the crowd seemed into the band, no one was dancing.  They made this apparent by giving the band a loud round of applause at the end of each song while remaining very statuesque during the entire set. I don't know if I was more pissed because I couldn't dance or because no one else was.  Even the headlining act kept raving about how good Big Tree was, and it was definitely dancing music, so why was no one dancing?

The crowd needed a catalyst, someone with no cares or worries to lead them up to the front of the stage, and all I wanted that night was to be that catalyst.  I wanted to walk right up to the edge of the stage and start rocking out with my hippie skirt in hopes that the rest of the crowd would follow, but sadly I was unable to do so.  I had the inability to do so because of the lack of confidence and trust not only in my device but also in my heart..  And hearing stories of other patients getting zapped while dancing admittedly doesn't help me get back out on the dance floor any sooner.  But a switch must have been flipped somewhere in the bar because as soon as Shovels and Rope started playing their first tune, the crowd rushed the stage and started grooving to the music, singing along.  The crowd was at least 6 rows deep, so I grabbed a chair and sat against a wall right by the corner of the stage with a great view, but it certainly put a cramp in my style. My personality is not to alienate myself by sitting off in a corner watching everyone else have a wild time.  As much of you already know, I am quite the extrovert.  I like to be in the center of the fun, especially at a concert; front row, dancing with wild abandonment, connecting with the music, and so far it's been about the opposite of that.

Two weeks after my second trip to Atlanta, I went and saw Fleet Foxes in Asheville, NC.  Before the show began, I met a super cool chick from Ohio,but as soon as the music started she was up on her feet dancing, but not me, nope.  I didn't have the energy, nor the confidence in my device to dance. I know she was thinking I was totally lame for not dancing, but what was I to do?  I did however manage to stand-up for the encore and jive with the music a bit, but at the cost of some high anxiety.   I find it interesting to think what others perceive of me in those situations.  Here is a healthy looking twenty-something sitting by herself.  Why isn't she dancing?  Why is she just sitting there, she's not even drinking?  See, it's a bit of a conundrum and an annoying one at that. Everyone tells me how healthy and good I look but my insides tell a different story, I just wish people could hear or see that story.  My looks are misleading everyone!

Despite a few minor glitches here and there, my recent activities have helped me start feeling like myself again. On the other hand, they have also helped me realize, although the thought was always in the back of my mind, that my life is categorically changed forever.  No longer will I be able to participate in many of the things I love.   No more hiking or climbing or dancing or even sports for that matter. I will never again be able to go for a run, or a swim workout, or play a game of ultimate or basketball.  I guess I'm still having a hard time grasping the fact that I will never  be able to exercise again, EXERCISE; what a primal and necessary function of life.  This Earth and our lives on this earth are so physical, that being active is such an innate part of us all. It is not only hard to come to terms with being disabled and inert, but hard to actually resist the urge to participate in the aforementioned activities. I've also realized my late nights and bar stays and party plans are pretty much extinct as well.  It's just too hard to hang around people raging while I sit idly by.

Another realization I have made in the past couple months is how much more of a humble person this disease has made me.  I have always been a 'Do It Yourself' kind of gal, always trying to avoid asking for help, believing I know the answers to everything, but this disease has made me completely change my way of thinking.  Obviously I don't have all the answers, but what's more is that I have learned that it is ok to rely on others, to ask others for a helping hand.  At first, I felt like asking for help made me some what of a weaker person, but surviving everything I've gone through, I know that I am a very strong person, emotionally and physically.  Even though I am strong, I still need to learn that it's okay to break down and cry once in a while, that part I still have trouble with.  Crying also makes me feel weak and I feel as though it gives others the perception that I am unable to handle my struggles. But I can,  I can handle my situation, it's just an emotional one.

Like I said, I am in the process of rebuilding my confidence.  I have two more concerts coming up.  I probably still won't be dancing but I will be enjoying myself, because I'm alive and I'm doing well.  I've matured a lot in this past year. I've been forced to grow up much sooner than I expected.  But, life can't be predicted, that is unless you have a deck of tarot cards, that's why plans are best when they are not made.  You just got to learn to roll with the punches and remember that it could ALWAYS be worse.   And we all need to learn to love and be thankful for what we got and stop worrying so much about what we don't have in order to start living life.  I hope you enjoy the music videos below, and you should definitely check out their other videos on YouTube.

Peace and Love Ya'll

Shovels and Rope 
(taped from inside the very modest tour van)

Big Tree  

(YouTube Channel: BigTreeSings)

On The Road to Recovery

Well before I delve into my surgeries and update you on my health, I want to begin by sharing something I wrote a couple of months ago about my experience of getting shocked, and the mental anguish that accompanied it..  The first half of this post gives a good insight into the daily struggle people go through that have been shocked living with a defibrillator.  The second half talks about my surgeries and my recovery.

PART I:
At the beginning of May, my defibrillator went off and shocked me two times leading to a four night stay in the  hospital.  This was the second time I had been shocked by my device, the first set of shocks occurred in late March.  However, this second time, I was just lying in bed around 11pm, painting my sunglasses getting ready to fall asleep, when suddenly I felt my breath taken away from me.  I said to myself, "That doesn't feel right." and then a couple minutes later BAM!  I was shocked. Now the usual comparison to being shocked is like being kicked in the chest by a mule, but I would much rather be kicked in the chest by a donkey than be shocked.  Being shocked is more like being electrocuted, it's like lightning going off inside your body.  It's a very loud popping sound accompanied by a white light that comes over you and the whole effect makes you scream.  Needless to say it is very painful and unnerving.  Ten minutes after the first shock, BAM, I got shocked again. And then another ten minutes passed before EMS finally arrived and transported me to the hospital.  The bad thing about that, is our house is a good thirty minutes away from the hospital, and this didn't constitute as an emergency so we had to abide by the speed limits and stop lights.  During the ride I kept having spurts of V-Tach, and each time I felt as though I was going to be shocked again.  I was scared out of my mind.  So much so that when I was admitted into the hospital and my vitals were being checked, I screamed when my blood pressure cuff began to inflate thinking I was about to get shocked again.  Any sudden sounds, sudden movements were causing me to jump, to be scared, so they eventually gave me a shot of Adevane, which is an anti-anxiety drug, stronger than Xanax, that is fast acting; and it indeed calmed me down.

In March, when my defibrillator went off for the first time, I was shocked four times, but I handled the situation amazingly well.   This time was different, this time I was shocked at night, in the safe haven of my bed.  I was shocked when I was at my calmest, just about ready to call it a night.  The first time I was shocked, I was hanging out with friends in the middle of the afternoon, therefore, I found reason behind the shock, whereas this time I was doing absolutely nothing, there was no reasoning, so I thought.  That is why this past episode of being shock has been a much more tumultuous time, because I was shocked doing nothing. And so now I feel like I will be shocked at any point in time.  It's very hard to think about, the powerlessness and the pain.  There is an electronic device inside my chest wired to my heart and if for some reason my heart beats faster than a certain programmed number then I will receive a horrible shock to my body.

But we now know the cause of the shocks was due to critically low potassium, which in turn is due to a genetic kidney disorder that I have had since birth, but only now discovered.  My kidneys are unable to store potassium and magnesium on their own, and those two elements are such a crucial part to keeping a heart ticking normally.  The kidney disorder combined with my heart disease makes for a double whammy.  I must say it's a relief to have this finally figured out, albeit it's a little disappointing this was not spotted years or even months earlier, and it is also disappointing that I will have to take large doses of medicine perpetually to keep my kidneys functioning.  Also, there is no home test to check your potassium levels similar to a diabetic even though the technology is out there, so I will constantly have to have my blood checked.  If my potassium becomes too high or too low, I have the risk of being shocked again, and that scares me.


Everyday brews a mental struggle, wondering what will trigger the device and when the next time the device will activate. The unknown is unbelievably frightful, not knowing when the shocks will begin or end.  Being shocked is always on my mind, and when I go to sleep, the night that I was shocked  replays over and over in my mind. Every night I lay awake, scared of a device implanted inside my chest, scared of its' capabilities.   The fact that it can shock me while I am dormant upon my bed now haunts me.  At night, when it's quiet and dark and I'm about to fall asleep, my brain seems to speak very loudly in those times and it is those times where I feel each and every heart beat with great intensity.   With every skipped heartbeat comes a triggered memory of being shocked, which then increases the anxiety to maximum levels, which increases the adrenaline levels, which increases the heart rate.  It's an evil little circle that I haven't quite been able to escape.   I try to think about other things, read books, listen to music, watch t.v., and for instance, write this passage in hopes of uncaging some of the grief that lingers. At the end of the day though, I need to be able to trust the device, to trust it will act appropriately, and act only when needed.  But what I really need to do, is find a way to unleash the grip that fear has on me, so I can start mentally living again.  So I can feel free again.

The past two months, I not only had to deal with my heart disease but also the malfunction of my gallbladder and its' painful side effects.  The pain eventually changed my diet into a soup and cereal diet with some baked chicken here and there.  The symptoms ranged from intense sharp stomach pains, cold sweats, sharp shooting pains throughout my chest and back and the worst of all, it made my heart feel as though it was palpitating, causing extra anxiety.  At times, I was unable to differentiate between the heart palpitations of my heart disease or if it was simply a symptom of the gallbladder.  My gallbladder episodes started to scare me so much that I would start to shake, fearing I would receive a shock from my device.  That's how much, I live in fear of this damn thing, but I need not to.  I need to trust that it's doing its job, that it will only go off when my heart rate reaches a certain number.  I need to believe that I can live my life without fear of being shocked.  I have to somehow break free from the fear, but that I found has been that hardest part of this long journey of mine.  I've never really had any fears, at least ones that I was confronted with, but this one sure has been a ball and chain on my mind and emotions as well as my way of living.  Once I find a way to rid myself of the fear, I feel I will be free again, and back to a stronger emotional state.  I'm walking on eggshells right now, everyday, every minute, I feel as though I'm a ticking time bomb and at any point in time....zap...I'll be shocked again, and that is where all the fear lies, the fear lies in the future, the unexpected, the remembrance.  But I have still held my head up high, I have still laughed and smiled, I have still kept my mind active and my spirit high, I will always remain positive, for there is no other way, now if only I could stay healthy, where there is a will there is not always a way.

PART II:
This will hopefully be one of my last health updates for some time, as I am now healing from two successful surgeries regarding my heart and removal of my gallbladder.  On July 6th, I underwent major heart surgery that proved to be a success as of now. Johns Hopkins, the ARVD Gods, have only been practicing this type of procedure for four years and have only had 25 patients undergo the surgery.  They have also only followed the outcomes of the surgery for the past two years, so due to how new the surgery is and the few number of patients who have had the treatment, the long term outlook is unknown.  Some have been shocked since their procedure and others have not, and some have returned to exercise against doctors orders and been shocked.  So for now my heart is ticking by itself and I am no longer on my anti-arrhythmic drugs, which is a huge step forward.  Ridding myself of the anti-arrhythmics have caused me to feel much healthier, I have an abundance of energy that I have been void of for the past nine months and I feel my head is now clear compared to as before it felt as though there was a pile of bricks in place of my brain.

The surgery successfully burned/killed off the cells on the outside of my heart that were causing the tachycardia, the racing of my heart.  The surgery lasted ten hours, one of their longest but that is because there were so many problematic cells around my heart.  There were three major cluster of cells causing my arrhythmia's, but one in particular was centered around my major artery.  Due to the severe risk of burning the artery causing a heart attack or worst, the cells on the outside of the heart had to be burned from the inside, which was a very long process.  Now that the cells have been killed, there is no chance they will grow back. Once they are gone, they are indeed gone.  The main concern now is the growth and development of the dysplasia/cardiomyopathy, the scarring of the right and left ventricle. It has potential to grow over the years, and it most certainly will grow if I participate in any kind of exercise.  As with this disease, when the heart expands and contracts, my heart does not always contract.  It stays expanded causing the scarring, and within the scarring the electrical circuits of the heart get trapped causing tachycardia.  So I will always have to have quarterly and annual tests to keep track of my heart rhythms and my dysplasia.  But for now I continue to take one day at a time, and am very lucky that the surgery worked. Not only am I lucky but I am thankful to the wonderful doctors at Johns Hopkins who are more than dedicated to each patient with this disease and I am very thankful to be off my anti-arrythmics.  Anti-arrhythmics are some of the strongest, most brutal, most side effect causing drugs out there, and I feel almost like my old self being off of them.

 Even though I am very thankful to be off my anti-arrhythmics, I am still rather anxious at the same time, mainly because I am scared about getting shocked more so than anything. It is pretty amazing to go from taking a high dose of medicine four times a day just to keep your heart ticking somewhat normal, to the next day having your heart tick by itself with no heart medicine.  Besides the anxiety, my recovery was a little rough. The worst pain was caused by my eyes, one of my corneas ended up becoming scratched causing severe intense pain for almost two days.  My eyes were tapped shut and therefore stopped producing tears during the surgery but they were not expecting the procedure to last ten hours and did not plan on my eyes to be a problem.  Because of the lack of moisture my eyelids ended cutting my eyes causing severe pain.  I also suffered from pericarditis, which is intense chest pain caused from the burning of the outside lining of the heart.  That finally went away after about three weeks.  Between the pain in my eye and the pain in my chest I was being given an IV of morphine every three hours on the dot.  Even with all the morphine I was receiving I was still in immense pain the day after surgery, the morphine was also causing me to have a migraine.  But throughout the day I kept my eyes closed and tried to sleep away the day.

After two nights in the hospital, I was on my way home, but the journey was not quite over.  On top of the pain I was having from the surgery, I was experiencing horrible symptoms from an ill-working gallbladder.  So one week after my heart surgery, out came by gallbladder.  The recovery from that was also very painful and lasted about two weeks, but my insides feel 100% better.  So I am happy to say each day I feel healthier and I feel stronger, and I am just relieved both surgeries went well and that I am now starting to feel like myself again.

I had my one month check up of my heart and so far everything looks good.  My doctor doesn't want me to start going on walks until winter, when the heat passes, so until then I will work on the hardest struggle of my journey so far, building my confidence, and to do that I will just have to take one day at a time.  Confidence is the most important aspect to my recovery, both physically and mentally,  and I am fully aware that I cannot live in fear of this device any longer. And with that said, my plan for now is to enjoy and celebrate the present, and just take it hour by hour, day by day.  So for now I bide my time with different hobbies of cooking, making jewelry, growing chia pets, attempting to sew, reading, playing guitar, watching movies, and spending quality time with my family.  Without the support of my family and all of my friends, this journey would have been much much harder. I just hope one day, I will be able to rejoin my loving free-spirited friends of the west coast! Thanks to all!


MUCH LOVE!!!!