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!!!!

New Music: Americana Edition

This edition of new music features bands that blend the lines between the musical genres of bluegrass, folk, americana, blues, roots, and a hint on New Orleans style jazz and big band.  It highlights string music as well as songwriting and vocal harmonies.  I will start with one of my favorite albums of the group of artists, and that comes from the hilarious Steve Martin and the talented Steep Canyon Rangers, called Rare Bird Alert.  All of these wonderful musicians are featured on iTunes and have their own MySpace page. And remember, you can also check out all their songs and music videos through MusicTonic.Com, which is a website that I love.


Featured:

Steve Martin & The Steep Canyon Rangers: Steve Martin is of course very well known, but not very well known for his musical talents.  This album is well-constructed from start to finish. There’s definitely no shortage of toe-tapping, knee-slapping, spoon-playing, traditional bluegrass excellence on Rare Bird Alert. The title track and “Northern Lights” are gems that even the longest listening bluegrass veteran has to appreciate. Tracks like “The Great Remember (For Nancy)” and “More Bad Weather on the Way” are gentle and intimate at times, quick and affecting at others, and remind one of everything from Bill Monroe to the Flecktones. Alongside such oddities as the mountain gospel goof-off “Atheists Ain’t Got No Songs” and a remake of the 1978 novelty hit “King Tut,” Steve and the Steep Canyon Rangers also offer kick-grass progressive and traditional instrumentals and simple, lovely melodies on “You” (featuring the Dixie Chicks) and the silly but sweet “Best Love,” earnestly sung by Paul McCartney.  The following video is a highlight of the band at Austin City Limits performing my favorite song off the album.

"Atheist Don't Have No Songs"

New Music I Found:
Sarah Jarosz: A bluegrass, multi-instumentalist, singer and songwriter.  Her approach to acoustic music is invigorating; she gives equal attention to playing, singing, and writing, choosing songs that embrace both old timey and modern sounds.  She has the capability of playing 8 different instruments and wrote all but two of her songs on her latest album.   She also included two instrumental songs to showcase her talents as a musician and not just a singer, and one of the songs was nominated for a Grammy. As far back as junior high, she was taken with Gillian Welch’s old-timey compositions and Shawn Colvin’s neo-folk confessions. “I have been so influenced by both of those styles of writing,” The bulk of the recording of the last album was done in Nashville with some of the acoustic world’s finest pickers and singers, including Béla Fleck, Jerry Douglas,  Edgar Meyer, Viktor Krauss, Vince Gill and Darrell Scott among others. She is heavily influenced by the music of Radiohead, the writing of Edgar Allan Poe, Bob Dylan, Bill Withers, Tom Waits, Alison Krauss, Gnarles Barkley, and many others. She has also shared the stage with Punch Brothers and Mumford & Sons numerous times and did an amazing live performance on Austin City Limits.
Songs: Run Away, Annabelle Lee, Come On Up to the House, Peace, Tell Me True

Kelleigh McKenzie: Armed with a banjo, guitar and amplified stompbox, Oregonian-turned-New Yorker Kelleigh McKenzie has a way of mixing folk, blues, old-time and rock into a music all her own. With a whimsical voice and soaring melodies, she takes the well-worn roads of Americana to unexpected places, thumping and plucking out original tales that veer effortlessly from a graceful social consciousness to lusty romps and sinister seductions.
Songs: Call It A Day, 2017, The Bus Song, Eleanor Rigby

Adam Hurt: His music is instrumental, and he can be considered a banjo virtuoso.   At age 27, Adam has already placed in or won most of the major old-time banjo competitions including Clifftop, Mount Airy, and Galax, and won the state banjo championships of Virginia, West Virginia, and Ohio, as well as the state fiddle championships of Virginia and Maryland. A respected performer and teacher of traditional music, Adam has played at the Kennedy Center and conducted banjo workshops at the Swannanoa Gathering, the Augusta Heritage Center, and Appalshop, among other venues around the country and abroad.
Songs: John Riley The Shepherd, Indian Nation, Fortune, Say Old Man. I Want Your Daughter, Garfield's Blackberry Blossom, Old Dangerfield

Megan Jean & KFB: A duo based out of Charleston,SC is comprised of many sounds including bluegrass, jazz, and new orleans big band with a blend of gypsy, circus, americana, and the avant-garde creating a kind of dark tone to their overall sound. To accompany the music is a sort of Andrew Bird/Regina Spektor esque type singing.With Megan Jean on guitar, washboard, and stompbox, and her husband Byrne Klay on upright bass and banjo, Megan Jean and the KFB play a unique brand of gypsy-tinged Americana with hints of rockabilly and Delta blues on their new 11-song collection. Megan Jean's deep voice and Klay's bass work are the highlights here.  
Songs:  Red Red, Cemetery Man, Pretty With The Lights Off, Demons

The Stairwell Sisters: 5 women, all singers, and each being able to play multiple instruments all including guitar, tiple, harmonica, fiddle, cello, banjo, clogging, dobro, slide, guitar, and bass. Bay Area string band the Stairwell Sisters, which just celebrated its 10th anniversary, mixes old-time and original tunes, although its new single is a more rootsy version of Bruce Springsteen's "Youngstown." San Francisco’s all-gal old-time teardown, play a deep and rowdy repertoire of timeless tunes plus a solid standing of smart, original material that is winning praise on a national level.  They crank out acoustic, old-time string music with a punk-rock intensity.  The Stairwell Sisters make such heartfelt and skillfully played music that boundaries dissolve beneath the chugging force of old-time fiddle and banjo, the whomp of bass and guitar, the grit of the slide guitar, and the tight, closely interwoven harmonies.
Songs: David and Goliath, Sleep When You're Dead, Youngstown Little Moses, Weary Weary World

Red June: Their sound touches on bluegrass, roots rock, and traditional country music with powerful harmonies, innovative songwriting and expert musicianship. A trio composed of two guys and one girl writes songs that seem to tell a story while making them very relateable at the same time.  They have shared the stage with countless bluegrass and Americana greats such as James Taylor, Sam Bush, Joe Craven, Jim Lauderdale, Del McCoury, Alice Gerrard, Jim Shumate and B.B. King.
Songs: San Juan Hill, Phoenix, Run Boy Run, Biscuits & Honey

Carolina Chocolate Drops:  This striking North Carolina trio brings a modern sizzle to the legacy of classic African American stringbands and were the first black string band to play at the Grand Ole Opry.  They blend together the sounds of blues, jazz, and old time roots music with a mix of technical strings to produce a sound that revitalizes one that has been lost. Their repertoire is centered around the traditional music of the early twentieth century but also includes original material  as well as a show-stopping cover of Blu Cantrell’s 2001 single “Hit ‘Em Up Style.”   The Carolina Chocolate Drops honed their skills under the tutelage of octogenarian fiddler Joe Thompson, a North Carolinian said to be the last black traditional string band player.  Thompson, who grew up playing at barn dances, “frolics” and corn shuckings, wound up performing in venues across the country, including Carnegie Hall. If you like Old Crow Medicine Show, Avett Brothers, Langhorne Slim, Abigail Washburne check them out.
Songs: Hit 'Em Up Style, Knockin', City of Refuge, Why Don't You Do Right, Escoutas, Kissin' and Cussin', Snowden's Jig

Red Heart the Ticker: This is a husband and wife duo from Marlboro, Vermont. Their music, often compared to Will Oldham, Gillian Welch, and Iron and Wine, is, in many ways, a reconciliation between their verging musical tastes: Robin’s penchant for tradition influenced sixties folk and twangy, old-fashioned country music, (Dave Van Ronk, Loretta Lynn) and Tyler’s love of jazz fusion and esoteric sixties rock (Mahavishnu Orchestra, Leonard Cohen). This musical terrain, rich with tight vocal harmonies, glockenspiel’s, dreamy guitar licks, banjoes, and hand claps, is both atmospheric and image rich. They definitely fall into the Folk category with their soft vocal harmonies, both female and male vocalists,  accompanied with soft strings. The female vocals sound a little similar to Alison Krauss and Emmylou Harris.
Songs: Ballad of J. Murphy, Snakeskin, Head of a Lion, Racing Stripe Winter, I Lift That Boombox: Parts a and B, 

Jillian Edwards: A young and new up comer that classifies herself in the mixed genre of acoustic/folk/indie. She is a singer songwriter with a voice that has a very light and easy going quality to it that is also filled with a bubbly personality with a slight country twang that goes well with her acoustic guitar. Her six string work is more picking than strumming and does not over power her already soft vocals. For a few songs, she has a simple drum kit backing her up. She is probably the most underground artist of this bunch.
Songs: Nonfiction Love Song, July&June, Go Together


Beta Radio: Beta Radio is the Wilmington, North Carolina Americana/Folk duo of Ben Mabry (Vocals, Guitar, and Glockenspiel) and Brent Holloman (Guitar, Banjo, BG Vocals, Glockenspiel, and Piano). They have been playing music for over ten years but not until April of 2010 were they able to find their sound and therefor release their first album Seven Sisters.When you leave the album, the minimalistic arrangements and the sincerity of the lyrics stay with you and call you back for another listen. The duo list their musical influences to include, Iron & Wine, Sufjan Stevens, Avett Brothers, Nick Drake, Bon Iver, and Fleet Foxes.
Songs: Either Way, Highlight On The Hill, Brother.Sister, Darden Road


Bon Iver: Bon Iver is a band founded in 2007 by American indie folk singer-songwriter  Justin Vernon. Three other regulars of the band include Sean Carey (drums, vocals, piano), Michael Noyce (vocals, baritone guitar, guitar), and Matthew McCaughan (bass, drums, vocals). On his newest album being released, he adds others to the band in order to showcase the sounds of his influencers; and thus on the track "Beth/Rest" and throughout the album, we hear the pedal steel of Greg Leisz (Lucinda Williams, Bill Frisell), the uniquely layered low end of Colin Stetson's (Tom Waits, Arcade Fire) saxophones, the riffing of Mike Lewis' (Happy Apple, Andrew Bird) altos and tenors, and the lush horns of C.J. Camerieri (Rufus Wainwright, Sufjan Stevens). For this album Vernon promised, “silky electric guitars, beautifully intricate keys, and subtle horn and string sections.”  His first album had a much more novice, poetic, solitudal sound to it but was still well recieved. He is similar to Fleet Foxes, Iron & Wine, and Ray LaMontagne.
Songs: Skinny Love, Come Talk To Me, Calgary


I'm Still Really Diggin'
Rising Appalachia:

New Albums
Xavier Rudd- Koonyum Sun
Fleet Foxes- Helplessness Blues
Emmylou Harris- Hard Bargain
Alison Krauss- Paper Airplane

A Blur of a New Life

I wrote this a couple weeks into spring, when everything was in full bloom.  I was driving back from a doctor's appointment and the day was perfect.  It was hovering just above 70, the sun was shining with just a cloud or two in the sky, and the landscape was full of color. Purples, yellows, whites, pinks, reds, and greens.  I thought what a perfect day it would be to go run through a field, but I couldn't.  It saddened me that I couldn't go for a run, or any activity of the like and fully embrace the day, and that I couldn't truly enjoy what spring had to offer my beautiful city.  No, instead I was stuck in my car, at my house, on my porch.  This was the first time I was not able to enjoy life like I really wanted to.  It's like when your stuck at home with the flu and all your friends are out playing, well this flu has lasted for over 6 months. And my friends, well, they have been from the west coast to the east coast and back to the west coast in just that amount of time. They're livin' the life, not me.  But spring has now passed, and it is now hot has Hell outside, so my temporary depression has faded as the heat is just too much for me to bare.  But man, that spring was down right beautiful this year!  I wrote this literally while driving home from the appointment, but I only wrote down the words at a red light. I would have forgotten them otherwise.  I have added a few words here and there, but for the most part this is a poem that came to me while driving on a perfect spring day. And if it seems sporadic at times, that is because I chose not to overdo the editing.  I feel as if I have captured the feelings and emotions I was having on that perfect spring day and I did not want to lose any of the authenticity of it through the use of editing.  And since I wrote it, I thought I might as well share it with all of you, why not, right.



A Blur of a New Life
in this new life i begin to walk through it with a veil over my head
i sit there wondering
where do i go? what do i do?
there is a blur, a cloud, that not even the strongest rainstorm could wash away
wounded, waiting for a new show
no boundaries to explore, no limits to push
feeling lifeless and washed ashore

i want more out of this life i'm living

i want to get in my car and have my wheels turn me back into a free soul
as spring warms and my body hardens
i feel i will soon be swimming amongst the clouds
to almost die just to be saved by the power of man
if it was up to the natural world, six feet under, i would be
but i'm here, with a blur of a new life