Ellen Bass: To Love Life

I StumbledUpon this poem one night and found it very fitting for my situation, but also relevant for most people in life.  The author is known, Ellen Bass, but I could not find the source.

A New Home Among the Mountains (Asheville, NC)

So after two years of living back at home with the parents, I have moved out on my own.  Two years ago, to the month, I was living, working and traveling all over the west coast.  But then in the blink of an eye, my whole life turned upside down and I had no other option but to return home. So the past two years were spent trying to get through some tough life struggles and return to my healthy self.  Just in the past couple months, have I finally felt strong enough to take the plunge, to move out, and live on my own.  This was a big decision in many regards.

For one, I have never lived by myself, I have always had a roommate of some kind.  Whether it was five or one, there was always someone else around.  Also, my health is still not 100%, nor will it probably ever be, so I will always need to reside near a hospital; that means no more living out in the middle of nowhere Montana.

Deciding on where I first wanted to move was the easy part.  I still had to be a short drive away from my doctors and my parents, but I wanted to be in a place where I knew I would enjoy my time, and the process of meeting people would be relatively easy.  The answer was clearly Asheville,NC, as there are really no other options near Greenville,SC.  I was tired of living in the city where I grew up, seeing the same faces and places.  Although Greenville is a very nice city and a great place to live, I am one who tends to get bored with my sorroundings and therefor needs new environments to learn, grow and to peak my curiosity.  For those who don't know, Asheville is set in the middle of the blue ridge mountains and is quite the hippy town with microbreweries, drum circles, vegan and vegetarian restaurants, a terrific music scene, tons of great local art, and a variety of unique shops.  It has many resemblances of a small verision of Portland, so as one could imagine, I feel quite at home in this city.

Around April or May of this year, I had set my mind on moving out of my parent's house by the end of the year.  I searched daily all over the web for housing, but for months had no luck.  I knew I didn't want to live in a college apartment or an apartment complex at all for that matter.  I was set on living in a house of some kind or a duplex.  I also wanted to be in walking distance of downtown, which is very hard to find at an affordable rate.  But in early September, I spotted a gem on Craigslist.  The post had no picture, just a brief three sentence description of the place.  A one bedroom, walking distance to downtown set right in my price range.  I gave the guy a call and arranged to see the place the following day.  When I went to take a look at the place, I immediately knew I wanted to move in, so I filled out an application.  Sadly, just in the fifteen minutes I was there, there were about eight other people who came to look at the property, and everyone wanted to rent it.  I could only imagine how many other people checked out the place throughout the day.  I was absolutely confident I was not going to get the place, especially with my bad credit that I have because of my medical bills that sent me into bankruptcy.  So I went home and watched the first Gamecocks football game of the season, thinking that was that, until my phone rang.  It was the landlord.  I was flabbergasted.  Sure enough he was calling to let me know he chose me to rent the place out.  ME!!!! Out of all the people, I have no idea why he chose me, but he did, and I was and am so very happy for that.

My house is less than two blocks from Whole Foods, about a quarter mile to downtown, and less than a mile to the Orange Peel.  It is everything I could have hoped for. I have a great neighbor, a roomy place with a big kitchen, a front porch, and a fenced in back yard.

But as happy as I am with the place, I still have had to deal with bad anxiety. The first two weeks living in my new place definitely had me on edge.  I was becoming frustrated with many things, and I was somewhat lonely at night and I just didn't feel comfortable, and I wasn't quite sure why. Most likely it was because my security net had been lifted.  Living at home with my parents, and having my aunt and uncle right next door, I knew if anything were to happen, someone would be around to help.  Now, if something goes awry, especially if I get shocked, I'm on my own.  I guess the unknown has probably been the hardest part of ridding myself of anxiety.  Waiting around for that next shock, waiting to go into V-Tach.  I'm expecting something bad to happen at any moment, because for two years something bad did seem to happen just about every month.  It's been an adjustment just to get back to being used to and comfortable with being healthy.  So I decided to re-enlist in Cardiac Rehab, so I can get back to exercise under the supervision of nurses, and for that, I am excited.

So besides the unneccessary and unhelpful worrying about the future, about bad things that may or may not happen, everything else seems to be falling into place.  I feel healthier, stronger, and more positve about the future, my health and my soul.  I just recently returned from a week long vacation, and while I was gone, I actually missed my house, and Asheville itself.  That is a very good sign!!! The future is looking bright.  Next on the list...finding a job!

Ellen's Last Chapter

Contribute to the world.  Help people.  Help one person.  Help someone cross the street today.  Help someone with directions unless you have a terrible sense of direction.  Help someone who's trying to help you.  Just Help.  Make an impact.  Show someone you care.  Say yes instead of no.  Say something nice.  Smile.  Make eye contact.  Hug. Kiss.  Get Naked.  Laugh.

Laugh as much as you can.  Laugh until you cry.  Cry until you laugh.  Keep doing it even if people are passing you on the street saying, "I can't tell if that person is laughing or crying but either way they seem crazy, let's walk faster."  Emote.  It's okay.  It shows you are thinking and feeling.

Find out who you are and figure out what you believe in.  Even if it's different from what your neighbors believe in and different from what your parents believe in.  Stay true to yourself.  Have your own opinion.  Don't worry about what people say about you or think about you.  Let the naysayers nay.  They will eventually grow tired of naying.

-Ellen DeGeneres

The Life of the Lonely and Lost

Below are a few writings of mine, that have all been written in the past week.  I am pretty sure this was just me going through withdrawal of leaving my home in East Glacier, and all of my friends out there, who are actually more like family.  They understand me, they let me be who I am, and they encourage it.  There are no judgements, there is no dislike.  It is a place filled with love, adventure, and buckets of laughs.  So journeying back to the Carolinas was sad, disappointing, and not what I wanted.  So after some Red Wine by myself, this is what my mind in accordance with my hand has produced.  It's not obviously for enjoyment, considering it doesn't have much of an uplifting message.  It is more of me releasing my feelings, my emotions, my thoughts, so I am not burdened by heavy thoughts.  It is simply freeing.

I.  It's the lack of laughter, the absence of adoration, the deficiency of direction that stirs my loneliness.

II.  The soul is consumed within a drought. Dried up clinching on to life, thirsty to live. The heart is lost in the deep dark crevasses of life.  Discovering a hint of light if it looks up, but it is mainly lost, lost in the dark.  The mind is simply wandering in nothing less than a maze, not knowing whether to go left or right, North or South.  Directionless and frustrated, wondering where the end is.  The body cries out just to be touched.  Weeping to be in the company of another soul that will bind the two together.  The body is lonely.  The body is lost.

III.  I have no one to share a laugh with.  I have no one to be adventurous with.  I have no one around that knows me.  I have no one to share a drink with.  I Have No One.  I have no one to be intimate with.  I have no one to love.  I have no one to share an inside joke with.  I Have No One.  I have no one to be nervous around.  I have no one to be crazy around.  I have no one to share a deep thought with.  I have no one to cry with.  I Have No One.  I have no one to explore the world with.  I have no one to explore me.  I have no one to travel with.  I have no one that will travel to see me.   I Have No One.

IV.   I'm lost, I'm empty.
       I'm scared,
       I am a blank.
     
       I have no goal
       I have no dream
       I am just a lost soul

       I am agitated
       I am frustrated
       I am stressed

       Lost is what I am

New Music

Well as the summer starts to draw toward an end...maybe not so much temperature wise, however.  There have been a number of amazing new album releases from some veteran artists, below are a few of my favorites.  So let me dive right in it.  And towards the bottom there are two new Indie-Folk bands that I have become a fan of...I posted their hit singles below so make sure to check them out!

Andrew Bird:
Album: Break It Yourself

Regina Spektor

Album:  What We Saw from the Cheap Seats

 
Fiona Apple
Album: The Idler Wheel Is Wiser Than the Driver of the Screw 
and Whipping Cords Will Serve You More Than Ropes Will Ever Do

Dispatch
Album: Circle Around the Sun

Slightly Stoopid
Album: Top of the World

Leftover Salmon
Album:  Aquatic Hitchhiker

Passion Pit
Album: Gossamer

*****And there have been two new bands that have emerged on to the scene that have started to gain attention.

Milo Greene
Album: Self-Titled
Bio:  A five member indie-folk ensemble that has great harmonies.  Each member can play various instruments, so they tend to mix it up on stage a good bit.

The Lumineers
Album: Self-Titled
Bio:  Another new indie-folk band with the same amount of people as Milo Greene.  Mainly lead vocals by a guy backed up by a girl and a couple other guys.  Hit single has some similarities to Edward Sharpe and the Magnetic Zeros song "Home".

ARVD Definitely is Genetic

So my cousin just got a confirmed diagnosis of ARVD as well.  She has two little boys so they soon will be tested.  My cousin and uncle still have to undergo an EP study to see if they have any arrhythmias or whatever else.  My dad who got his defibrillator just less than a year ago, his disease is progressing.  Within just a couple of days he had 7 episodes recorded, one included him experiencing syncope and the other caused him to be shocked for the first time.  He will now be admitted into the hospital to start the anti-arrhythmic Sotalol.  So as my ARVD has reached a stable point, my dads has quickly progressed.  Now we're just waiting for our other family members to finish their testing.  I'm hoping my cousins' little boys of course do not have it, but the likelihood that they do is very high, at least one of them.  My cousin too, will probably need to be getting an ICD after her EP study, because although my uncle, her father, carries the gene but is not affected by it, she has experienced syncope a couple times.  So we are all very anxious to get the rest of the results.

And just a side note, to anyone who has just had an epicardial ablation or is struggling to find the right amount of exercise as to not progress the disease but enough to feel active, I strongly encourage cardiac rehab.  It's just working out under the supervision of nurses with a portable heart monitor to keep a constant check.  It has, more than I expected, greatly reduced my anxiety, which has helped just living day to day.  The Johns Hopkins team suggested I keep my heart rate under 115 but I've been keeping 122 bpm as my max.

An End is Only a Beginning

So after three months of cardiac rehab, including the three weeks I missed, I finally graduated.  I will continue to attend the HeartLife rehab facility as a member, which allows me to work out under the supervision of nurses, although I will no longer wear one of their heart monitors.  However, they will spot check my pulse occasionally.  That is why, after suggestions from the nurses and other ARVD patients, I have purchased my own heart monitor from a sporting goods store.

Most heart monitors in the consumer market are just watches that detect your heart rate while placing two fingers on two sensors of the watch, that responds in a matter of seconds.  But there are a couple watch monitors out there that also come with a chest strap.  The chest strap is capable of constantly monitoring the heart, without the use of finger sensors.  The one I purchased also gives me the option to set a personalized heart rate zone, and will beep anytime I go over my intended maximum heart rate.  I am very thankful for this, because without it, I most definitely would get my heart rate way above what I am allowed, which would then cause more scarring of the ventricles, and there is no reversing that.  So with this monitor, I am able to set my maximum heart rate at 120bpm and be alarmed by the watch when I exceed that, which also helps keeps my anxiety at bay, and makes me feel more comfortable while being active.

The past three months have been very encouraging.  I have made incredible progress, physically and mentally.  When I first started rehab, at the end of February, I was barely able to walk on a treadmill.  Mainly because of my disabling anxiety.  On my first day in rehab, they put me on the treadmill and had me start to walk at 2.5mph.  After 15 minutes they increased it to 2.8mph, and at that point I was too scared to do anymore.  At the time it seemed very fast.  But as the days progressed, and I continued to have no symptoms, my anxiety decreased, enabling me to push myself further.

By the end of it, I was able to do more than my heart was capable of.  Whereas, in the beginning, I wasn't even close to reaching the limits of the disease.  Now, I am able to walk at 3mph at a 7% incline, of course not for very long, because of my heart rate limitations, but still more than I ever thought about when I first entered the program.  Just in the past week, I was able to work out on an erg machine (indoor rower) for about 10 minutes, which I haven't done since 2008.  Like I said, the only limitations I have now are the ones my doctors set to limit the progression of my heart disease.  I am no longer chained and shackled by my anxiety.  I feel comfortable being active, and I now feel comfortable playing 18 holes of disc golf.  That was my goal.  Before rehab, I was unable to get through a couple holes before freaking out a little, now I'll complete 18 holes and want to do another round.  It feels good.

Cardiac Rehab was a huge step in my recovery process.  Without it, I would still be afraid to even walk.  Last September, I visited Glacier and only stayed in the apartment.  Five months later, I was back in Montana, back to being myself again.  I was able to get in a lot of walking without any problems.  Rehab has given me the chance to become more independent, more comfortable with my disease and even more confident in my abilities, and most importantly, given my peace of mind back.  I am very grateful I was given this tremendous opportunity and thankful to all those who have helped in my recovery.

Written Version of My Speech

If you are reading this, you probably know that I gave a speech at the annual ARVD seminar this year.  The seminar is an all-day event and most of it is filled with presentations given by doctors.  Toward the end however, a few people affected by ARVD present their story of living with the disease.  Last year, four people shared their story.  This year, it was myself and another guy, Killian, that presented.  It was a wonderful experience, it opened up the opportunity for people of all ages to come talk to me to discuss and share what we have been through, and how we've tried to cope.  Killian's story was very, very good, and he mentioned many things I had to leave out due to time, so our two presentations complimented each other well.  So below is the written version of my speech!

Well my name is Kiele Binsted, I just turned 25, and I’m from Greenville,SC. So I have a lot to say in a little amount of time so I’m going to jump right in. It wasn’t until Early last year I was officially diagnosed with ARVD, but I’ve experienced tachycardia and other symptoms since the 6^th grade.

So in 2009 I graduated college and became a seasonal worker.  I was living the good life, a worry free life. I travelled and worked in all kinds of different cities and resorts.

In the fall of 2010, I just finished working my third summer in Glacier National Park, Montana, when a couple friends and I moved to South Lake Tahoe to work at Kirkwood Ski Resort. But three days after our arrival into Tahoe, my plans suddenly changed.

We had just signed a lease for a new apartment and had only been unpacking our cars for about thirty minutes when I went into ventricular tachycardia. Since this has been happening to me since the 6^th grade I was very familiar with it, and usually, I could make it go away by sitting down and resting.  This time was different.  This time I didn’t pass out and literally had to gasp for every breath.  I was taken to the hospital and given a couple shocks. Later, I had been told I was minutes away from full on Cardiac Arrest.

I was eventually transferred to Reno, NV, which is where the closest EP to Tahoe was.  I stayed a month in Reno, half the time in the hospital getting my first ablation, and my ICD implanted, and the other half with my parents in a hotel room, who were kind enough to fly out from SC.

Now to catch you up to speed in lieu of this incident, like I said before I’ve been suffering from Tachycardia since the 6^th grade. During my sports especially basketball my episodes of Tachycardia caused me to blackout where I would still have control of my body, but I would lose complete eyesight.

The same symptoms continued all through college until my sophomore year in 2006, when the disease started to progress causing me to pass out.

I did see a Cardiologist for about 6 years but b/c all my tests came out negative he was convinced that I was dehydrated, and so I was convinced even after my Tahoe incident, I thought it was merely dehydration.  I was in complete denial that something more serious was affecting me.

Then, in the beginning of 2010, my symptoms started to become very sporadic. I was living in Portland at the time and passed out twice in two months.  The first time was out of nowhere as I was walking to work, and a month later, I passed out again after giving a four hour swim lesson in a heated pool. I ended up having a severe concussion and a month of vertigo.

Then two months after my last syncope episode in Portland, I decided to move back to Glacier for one more summer. The first night in town I had a bout with Tachycardia that led to syncope.  But instead of returning to sinus rhythm, like I usually had, this time when I awoke I was still in VTach for a couple hours. That was the only time I experienced syncope that summer, although I was still plagued by many episodes of Tachycardia, usually when I was playing Frisbee or basketball, but thankfully never when I was out in the middle of the woods climbing mountains. 

So after the season ended in Glacier, in September of 2010, that’s when my friends and I moved to Tahoe, and that’s when things got chaotic.  After my month stay in Reno I was stable enough to fly back to South Carolina. Shortly after getting home I kept going into VT so I had my ablation in January of last year. It helped some but not enough.

Because a couple months after the ablation, in March, my defibrillator went off for the first time.  It shocked me four times.  I handled it well, and carried on as if nothing had happened.  It wasn’t until a month later that things took a turn for the worst, when my defibrillator went off for the second time.  It unexpectedly shocked me twice while I was in bed about to fall asleep. It frightened me to think that I was not safe even in my own bed, that I could be shocked anytime or anywhere.

Since nothing obvious, triggered the shocks, doctors finally discovered an underlying genetic kidney disorder that only aggravated my ARVD.  Basically, my kidneys don’t hold on to my potassium or magnesium, causing critically low levels that produce arrhythmias.

After my last round of shocks, I had extreme anxiety.  I couldn’t sleep in my own bed for a couple weeks, I couldn’t sleep at all for that matter, and when I could I suffered from phantom shocks, so I didn’t even want to fall asleep. I thought every pvc was going to turn into another shock and sometimes I still think that.  I started to analyze each and every heartbeat.   I had no peace of mind.

That’s when Brittney and the Doctors here decided it was a good time for me to have an epicardial ablation.  Hearing that was music to my ears.  The procedure was done last year in the first week of July, and it was an all-day affair, it was very successful so as soon as it was over Dr.Tandri immediately took me off my anti-arrhythmics even though I was unbelievably apprehensive about it, but I had complete trust in him. Afterwards the procedure my sleep returned, my energy returned, and most importantly my heart has been stable.  So I am very thankful for all their hard work.

It wasn’t until a couple of months ago that I was really able to get active again.  Not only was my anxiety still high, but I was plagued by a number of different health issues.  It seemed like my whole body wanted to breakdown.  I even had to get my gallbladder removed just one week after the last ablation.

But for the most part, my health has been stable lately, so I’ve started taking trips back out west to see my friends, I’ve started attending concerts again but most importantly I’ve started Cardiac Rehab.

I love Rehab, nurses monitor me while I’m in a relaxed environment which makes me feel at ease when I exercise. I now am aware of my limits, and I am comfortable with an elevated heart rate.  So because of Rehab, my anxiety is not controlling me anymore and I’ve gained back some of that peace of mind I lost. But I will say there’s still not a single day that goes by when I don’t think about getting shocked.

Like many of you, the other biggest struggle I’ve had, besides the anxiety, has been the absence of physical activity.  I’ve been a competitive athlete as far back as I can remember, whatever the sport, it didn’t matter, even my jobs were physically demanding.  It’s been quite the dramatic lifestyle change. 

It’s hard to know that I can’t go on a long run, or get in a good swim workout, or play a pick-up game of Basketball or Frisbee.  but thinking about that only gets me down so I’m constantly reminding myself that “Life could always be worse.”  I remind myself that there are plenty of people in the world who are suffering much greater than I am and somehow that always manages to put life back in perspective for me.

It helps me realize I still got it pretty good. Even if I can’t participate in all the fun and games I once knew, I can still read and write and take pictures, I can go for walks, spend more time with the family, do Yoga, go out with friends, travel, create things, further my cooking skills, make art, learn to play an instrument. The possibilities are endless.  I’ve even picked up Golf and returned to one of my favorite activities, Disc Golf. 

Just because we’re prohibited from strenuous activity that doesn’t mean we are prohibited from discovering new talents and new skills that we may have never once known.

Life is always changing, whether for the good or the bad, so we must learn to adjust and adapt at what life hands us.  Life’s too short to spend time and energy dwelling on what I can’t do and what I don’t have, so I take that time to focus on the things I can do, the things I have, the things that are sure to bring me happiness in life, because life is just too short not to be embraced.

Now, this bracelet that I always wear, is one that I found in my grandmother’s belongings after she passed away.  She battled breast cancer for many years, and the bracelet says to Celebrate Life.  I never take it off because that’s what she did during her struggles and that’s what I’m doing.  You only live once and it’s worth the celebration.  So adjust, adapt, embrace the situation, and carry on, because, remember, it could always be worse.

Double Scope

Scroll to the bottom for results (last paragraph) if you want to skip the reading.


I am so thankful to be over and done with all of this Gastrointestinal nonsense.  Not only was getting the Scopes scheduled a frustrating process, but the prep work, the cleansing I had to do to prepare my body for the Colonoscopy and Endoscopy, was brutal.  It was nauseating, tiresome, gross, and a bit painful.

The day before the Scopes I had to be on a Clear Liquid Only diet.  It wasn't too bad, but because I take a large amount of pills, and many require food to be taken with the pills, I was extremely nauseous all day.  But the real challenge came at 7:30pm when I had to start drinking my prescribed Prep Juice.  It was 6oz of hell, that I had to mix with 10oz of water.  I was aloud to mix the prep with Gatorade or Diet Sprite, but when I opened it, the liquid didn't seem to smell too bad and it was clear, so I thought mixing it with water would be just fine. But oh, how I was so, so wrong!  I had to finish the 16oz of pure nastiness and then down another 32oz of water within the hour.  The mix was so gross I almost threw up four different times.  I luckily was able to hold it down, but I came very, very close to expelling the Prep from my body immediately.  It took me half an hour to get down the first 16oz of mix, which made me feel deathly nauseous for the next two hours.

It was definitely a brutal experience, I was just trying to imagine how I was going to do it all over again in the morning.  Because come 8:30 in the morning that's exactly what was in store for me. Another round of 16oz mix followed by 32oz of water immediately. This time I had learned my lesson, the hard way of course...the story of my life.  So this time, I mixed my prep with Gatorade and after every large chug I sucked on a Lifesaver to change the taste in my mouth.  It worked for the most part. I only came very close to throwing up once.  After I finished, I felt like shit, but I was extremely elated.  No more!  I had gotten through the hard part.  I was very pleased to be done with my prep work. 

So 12:30 came around and we headed to the hospital for the Scopes and I was taken to the back right away.  It's always pleasant when you don't have to spend an hour or so in the waiting room.  They took all my history, put the IV in, gave me some happy meds, and then carted me off to the operating room. Next thing I know, I'm waking up screaming and crying.  The doctors used Twilight sedation as opposed to General Anesthesia, meaning I was still asleep and was able to breath without assistance. So when I was coming out of my Anesthesia, I was actually awoken by a nightmare I was having.  I thought I had gotten shocked, and it sure felt real.

My dream, I remember it very vividly, had me lying on an operating table surrounded by a bunch of nurses that then used paddles on my chest to shock me [End Dream].  So after my scopes, when I was in the recovery room in a deep sleep, I started to scream and apparently yelled for my mother.  The nurses went and got her and by the time she arrived, I was still half asleep so she was trying to wake me up, even though at this point I was full on crying.  I kept asking if I had gotten shocked and I was informed that I had not, and that my heart was just fine, but I could not wrap my head around this. The shock felt so real, looked so real, that I truly believed I had indeed been shocked.  After the nurses and my mom kept reassuring me that I was fine and that nothing of the sort had occurred, I was trying to understand why my dream was so real.  I have never reacted to anesthesia in this way.  I always wake up from it in a calm, drugged up sluggish way.  But this time was very different.  Anesthesia can do some really crazy things to a person in general, but come to find out the nurses were talking about my history in the operating room, while I was under, about being shocked and they carried on a conversation in general about being shocked. Since I was not completely anesthetized, even though I was asleep, my brain probably picked up on the conversation and I believe that is where the dream came from.  Not to mention, the last time I went under with Twilight sedation*, in Reno, NV during my first ablation, I was shocked.  Like I said Twilight sedation does not completely knock you out, so when I was shocked, I was awake and I felt it, and it was the worst pain I have ever felt.  It is much worst than an internal defibrillator shock.  I cried and cried and then threw up and cried some more until the doctors knocked me completely out. So between being shocked the last time I was Twilighted and the nurses talking about being shocked while I was asleep, that led me to have a nightmare, truly believing and feeling that I had been shocked again, and it was quite a horrific and traumatic experience. It was a terrifying way of waking up, but my heart was stable and that is all that matters. *All other surgeries and ablations I have had used General Anesthesia.

The good news however, is that the doctor did find some things that are probably causing my severe abdominal pain, yet not very serious problems.  He found a lot of inflammation on my right side as well as a good amount of bacteria in my colon which caused two pre-ulcers, as he called them, that he also found.  One near my stomach and the other in the inflammation in my colon.  The inflammation and the pre-ulcers can be reversed with the use of medicine, Nexium.  How long I will have to stay on the medicine is unknown.  Some stay on it for months, some stay on it for life.  So I'm hoping for the former.  The doctor also did a biopsy just to make sure everything was A-Ok and when the results come back from that, I will also be put on an antibiotic to rid my body of the bacteria, which could be caused by the large amount of potassium I take.  But we'll figure that out later.  Sooo... this means I'm going to Montana and Seattle!  I will have to miss a week and a half of cardiac rehab but that is doable, I'd much rather go out west and see me friends. 6AM Monday morning, I'm out!!!

Cardiac Rehab

So far I have attended three cardiac rehab sessions.  Given this disease, I am not aloud to participate in any strenuous activity.  Johns Hopkins spoke directly to my nurses and doctor at Cardiac Rehab to discuss my parameters.  They decided that I am not to lift anything heavier than 10lb hand weights and that my heart rate should not exceed 120bpm.

The first session went well, I spent the first half hour speaking with the doctor about my health issues and the second half hour walking on the treadmill for 2.7mph.  It was a good start.  The second session I was able to get in a full hour of exercise.  I started on the stationary bike for 15 min and then I walked on the treadmill for 35min at 2.8mph.  This past session, my third one, really wore me out.  I spent the first 12 min on the stationary bike and rode 2 miles and then walked on the treadmill for 25min at 3mph, which was really tiring, and then went back to the bike for 10min and rode close to another 2 miles.  While walking, my heart rate rose to 114bpm, which is normal but a bit nerve wracking.  I just don't know how much more exercise I can do if I'm not aloud to get my heart rate above 120.  But it's good to know my heart is staying strong, even though the reality of never being able to participate in sports again is very heartbreaking.

I do indeed love going to rehab.  All the fellow patients look after me, are very friendly, and very very chatty.  Rehab lowers my anxiety giving me confidence in myself and in my health by being able to see my heart react to the exercise. This may not seem like much to most people, but it is a tremendous step for me.  Being shocked by a defibrillator really takes something out of you, it takes your strength and confidence, it can make you fear life and fear all the small things, and most of all it takes your peace of mind.  Every night as I try to fall asleep and I feel my PVC's (skipped heartbeats) all I can focus on is the fear of getting shocked.  Everyday I think about getting shocked, every single day.  So this rehab is not only to regain my confidence and rid myself of anxiety, but to find some sort of peace of mind. That's what I truly want, Peace of Mind.


Health Update:
I went for a check-up with my Nephrologist, my kidney doctor, and he informed me that my carbon dioxide levels are low.  I've been getting my blood checked every month for about 7 months now and every month the CO2 levels have been low. This is due to my kidneys malfunctioning.  If the levels of carbon dioxide become too low and remain that way, that will cause the blood to become very acidic which could eventually start to corrode the bones.  So once my stomach issues are solved I will have to start taking a baking soda pill to keep those levels under control.

A Story of a Frustrated Patient

Well as mentioned in my previous post, I thought I was sick and tired of being sick and tired.  In actuality, in this past month, I have instead grown sick and tired of not getting the appropriate health care I feel I am paying for.  I am frustrated and infuriated.  I went to my first cardiac rehab meeting on the 15th and the nurses decided that I was not ready to officially start until the situation with my colon and the pain caused by it, was under control.  So the following post is the story of me trying just that...to get my pain managed and discover the source of it.  Well so far, not so good.

Ever since at least July when I had my gallbladder out, if not before, my stomach has been very sore to the touch.  But the last weeks of January, as I started doing Yoga, not only did the pain start to increase, but I was able to pinpoint where the pain was coming  from.  I gave it a few days to see if the pain would subside, but the opposite occurred.  I decided to call my GI and schedule an appointment.  I was seen by a very nice nurse practitioner around Jan 27th, who was not sure what this was, but her guess was an ulcer. She proceeded to schedule an X-ray and an ultrasound within the week (Feb.7th).  If I was in good health the NP would have gone straight to scheduling the colonoscopy and endoscopy, but she decided to rule out anything that could be detected by non-invasive tests first. I was told to follow up with her in one week to go over the results.  Instead the office scheduled my next appointment a month later, sadly I didn't realize this until I made it home.  Luckily, with some persistence, I was able to make the appointment two weeks after I saw her which was somewhat of an improvement, but this time with a different nurse practitioner aT a different office.

So I managed to get a second appointment instead of March 1st, it was now for Feb. 13th.  By this time, my pain was still increasing, but now I had severe nausea accompanying the existing symptoms.  My pain was and is so bad that when the doctor presses on my stomach, it instantly brings me to tears, and I have a pretty high tolerance for pain.  The nurse called in the doctor who was there to briefly check over me.  He prescribed me painkillers and nausea medicine, and scheduled a CT scan the following day.  He specifically told me to follow up in one week with my original doctor who I had seen in July and December.  Instead, they schedule my next appointment another month out to see another nurse practitioner.  I was not at all happy nor satisfied with this, so I demanded to be seen sooner due to my pain.  After a few phone calls they were able to squeeze me in, in one of there nine offices to see yet another nurse practitioner I had never seen on Feb 20th.

The nurse practitioner I saw this time was very brief with me, and treated my symptoms as if they were mild or not so bothersome.  She told me if the Scopes don't show anything  there were no more options, oh and by the way we found a cyst on your left ovary and then she left the room, not to be seen again.  Well I know cysts are common and most everyone women has one, but she could have given me a little more detail, like if I need to follow up with an OBGYN or something?  So I was shoveled to the scheduler for the Scopes and was told May 8th was the soonest they could operate.  This was really when the frustration kicked in.  Not only have I not been able to consult with my doctor about my severe pain I'm in, I have to be in this severe pain for over 2 1/2 months.  That's a hell of a long time to be on painkillers.  They said there was nothing more they could do for me.  After an attempt to contact my doctor directly and a long phone call with his nurse, his office finally squeezed me in between two of his appointments and they also informed me that the cyst is normal but yes, I should get it checked out by my OBGYN.

So Wednesday I go in at 10:30 to see my practicing doctor, the one who will actually be performing the Colonoscopy/Endoscopy.  My goal is that he'll recognize my level of pain and hopefully decide that these scopes need to be pretty urgent.  If not, than I don't know what to do.  Maybe I'll go to another GI practice or check into the ER.  But either way, out of all the many doctors I have seen, this is the most disrespected I have ever felt.  I feel like my pain does not matter, I feel like my health does not matter, and I am sick and tired of this place and cannot wait until I do not have to go back.  In which case I do hope there is in fact a day I do not have to go back to them

So to sum this up, within a month's time I have seen 3 different nurse practitioners at 3 different office locations, one doctor that is not my practicing doctor there, and I'm about to go in for another visit to see my actual doctor, for the first time since my intense pain has started.  Not only that, if I had left the original scheduled appointments as is, I still wouldn't of had my second appointment until March 1st, meaning I wouldn't of had my CT scan until the end of the first week of March.  This is CRAZY!!!  I don't get how they throw me on painkillers and then not be able to do a Scope until May.  I have way too many obligations before hand, a trip to Montana/Seattle, Cardiac Rehab, and a speech at the annual ARVD conference in Baltimore.  I'm sorry but May will not work for me, I need to figure out what is wrong..NOW!

Anyone know someone who does Scopes on the black market?

Well, I went to the doctor today and it didn't go quite as expected.  I still have to wait a few weeks to get my Scopes done, and this doctor said he is not in the business of pain management, so no more painkillers for me. I guess the waiting begins.  I was also bought plane tickets to Montana and Seattle for March 12th-20th but I'm starting to get worried those plans are about to fall through.  Luckily, I bought insurance, but I'm hoping I won't have to worry about that...we will see.  The story of my life!

No...I Don't Have a Job.

The answer is no.  I do not have a job.  I get asked this weekly by many different people, friends, doctors, relatives, you name it, and the answer is always the same, no.  It's one thing when you're making conversation, it's another when you expect that of me while I am still trying to figure out how to comfortably manage my new life. 

I have taken all my health issues and my drastic life changes in stride, but I will admit I am starting to get a little sick and tired of actually being sick and tired.  But what's more frustrating than anything right now, is everyone I come across asking me if I'm back to work yet.  Just a little reminder, it has only been  seven months since my Tachycardia subsided thanks to incredible surgeons and a 12 hour surgery at Johns Hopkins...12 HOURS.  Before the surgery however, it was normal for my heart to race around 180 bpm while simply lying in bed.  That's nearly tripled the normal heart rate. 

Just nine months ago, I was getting zapped by my defibrillator, causing me to have phantom shocks for two months.  I was taking anti-arrhythmics; side effects being sleepless nights accompanied with zero energy during the day. I felt as close as one could to a walking Zombie.  I still have a great deal of anxiety, thousands of PVC's daily (skipped heartbeats), and I can't exercise, which makes my weight hard to manage. 

With that said, I think it will be okay if I decide not to work for awhile.  Not only will it be okay, I believe it is somewhat normal for someone to stay out of work for a year or two after having six surgeries, multiple diagnosis, and a heart that forever will be unstable.  Not to mention I do not have the emotional or physical stability for a job.  Even though I am off my anti-arrhythmics, I am still on a very high dose of blood pressure medicine to keep my adrenaline at bay.  Therefore, whenever I do have enough energy to do something,  I in turn am worn out the following  day or two.  So I ask, how can I possibly work a 40-hour work week when I don't even have enough strength to go out for a walk every day? 

I just want to live simply, like in the days of Andy Griffith and Barney Fife, where it was  suitable to sit by a pond all day, everyday, whistling all your cares away.  I find it saddening that all we do is work.  We work almost our entire lives.  We work when we're sick, we work in poor weather, we work on holidays, we work when family members are ill and /or dying, we work way more than 40-hour work weeks.  We work for decades in order to retire at an age where we are almost too old to even go out and enjoy new adventures we saved our whole lives for.  When will we say it is acceptable not to work? 

With a staggering unemployment rate, even if I was healthy, it would still be difficult to find a job.  And with all the stigmas that come with being unemployed, every time I am asked about a job and I respond, "No, I don't have one," I feel as though it is an admission of laziness.  Well damn it,  I'm disabled.  I have three incurable diseases, I have a life that spun out of control, I have been shocked 11 times,  I have crazy anxiety, I can't exercise, I'm trying to manage my weight through all this as well as my emotions, and this has all taken place in a year and three months, so let me take two years off and collect some damn disability.  

Quit expecting me to go back to work simply because that's what we, Americans, do.  I'll work when I'm fully ready and capable.  Can't people just be sick anymore these days, while having the pleasure not to worry about employment.  I already had to file for bankruptcy to pay for medical bills.  Let me enjoy what little time I can without a job.  Life will never be the same for me, and with this disease I might have to start working at a place I really dislike, which I absolutely do not want to do.  So, I am taking this time to figure out what I want to do with myself, trying to find an acceptable new direction in life.  Because as a year ago, my life got flipped upside down and I will never be able to go back to living and working where I was,  or where I want to be.  I will always need doctors close by and I will always have to have health insurance.  

So if you see me...don't ask me if I have started working.  If I want to talk about it, I will bring it up on my own accord.  I'm still sick.  I probably won't start looking for a job until I am entirely confident in my health, so deal with it.  As long as I'm happy through all this, isn't that the only thing that should matter at this point.  Obtaining a job is not even close to making it on my To Do List as of now.  It's my body, it's my life, and I will make the choices I think are appropriate, and getting a job right now is not the appropriate choice.  However, enrolling in Cardiac Rehab is, and that's exactly what I'm focusing on, as long as insurance will cover it, that is.

Well now that I've gotten that off my chest...I feel pretty good!