A Road Trip to Starting a New Life

http://www.gofundme.com/ontheroadtolove

My boyfriend, Sterling McBride, who is moving all the way across country to be with me, set up a GoFundMe page to support our road trip out west in order to start our lives together. Unfortunately, we have not been able to see each other since the first week of January due to us living on opposite sides of the country.  We have dealt with many ups and downs, probably more downs than ups in the past few months, but not being able to be together makes those downs that much worse.

We have known each other since 2007 and have been dating on and off, off due to living in separate places, since 2010.  Sterling finishes up Grad School at the end of April and then we are meeting at the ARVD Seminar at Johns Hopkins in Baltimore, MD on May 1st.  I am drowning in bills, but more specifically Medical Bills.  He is drowning in student loans.  After an Associate Degree, Two Bachelor Degrees and a Graduate Degree, he will be paying off loans for a very long time.

His GoFundMe page was in hopes of raising some spending money for our drive out west to our temporary home in Jackson, WY.  After the summer, we will have to move again to Denver, CO which will also break our bank.  We are moving so he can begin his career as a high school history teacher and so I can be closer to better medical facilities.

I know I have not posted in a while, but between moving to Jackson in December 2014, being shocked by my ICD in February and having an array of other serious health issues, I just haven't found the time nor the motivation.

I've already filed for Bankruptcy once in 2011 due to me owing over $500,000 in medical bills, and due to my health issues preventing me from finding a decent career, I have been relying on my parents, which for most 28 year olds' is not ideal.  This trip is for me and my boyfriend to catch up with each other and experience what the world, more particularly America, has to offer.  This is his first road trip and first trip out west and I would like for the both of us to be able to make the most of it.

If anyone can help out in any way, even just a dollar or two, that would be more than amazing. After Baltimore we plan on staying a night outside of Cleveland on one of the Great Lakes, then stopping in Omaha for a night, followed by two nights in Denver and then back to Jackson.  

Also, if anyone lives in Denver and will be able to help us in anyway in regards with housing, school district information, and an office administrative job for myself, that would be just as helpful. Travelling is my passion but unfortunately it is also very expensive.  My boyfriend is amazing and the love of my life. He evens me out, and as most of you know, I need some evening out.

[Side Note] I have unfortunately put in my resignation at work, which has been the best job that I have ever had, working with the best law firm in Jackson, but unfortunately with all my health flare-ups, and all my doctors being over two hours away and the lack of flexibility at work, I had no option but to resign. Not only that, but Sterling and I will be moving to Denver at the end of July.  It's one of the few places that has available teaching positions while also having state of the art medical facilities.

For all you ARVDers out there, I was shocked recently.  My first shock since 2011, and my first shock since having my epicardial ablation.  I have had extreme and debilitating anxiety accompanied with panic attacks due to the shock.  I plan on writing a new post on the health struggles that I have incurred since moving out here to Jackson, WY a few months ago.  The last couple months have been extremely hard on myself but will hopefully only get better when I have Sterling, my wonderful and amazing boyfriend, joining me on this journey through life.

Thanks for reading, and thanks for any and all support.  And I hope to see some of you up at the Seminar this year.

Much Love,

Kiele Binsted

http://www.gofundme.com/ontheroadtolove

Working with ARVD

Back in the Unemployment Line:

The Story of Finding Work with ARVD

So it appears that I have not written anything in over a years' time.  Looking back on it, I may have thought I had nothing noteworthy to speak of.  However, in the last two months, I have received long e-mails from individuals and families suffering from ARVD. Those individuals sparked a bit of inspiration in me to continue to share my story with others.  So one topic I have yet to touch on involves working and finding a career while managing ARVD.  I'm asked frequently about lifestyle effects from the diagnosis. The physical and exercise limitations of course are the most drastic effects for the majority of patients, but I would never have imagined the impact it has had on my employment situation.  Ever since I became ill at the end of 2010, rejoining the workforce has been a very complicated and difficult and most of all, frustrating experience.

From as far back as I can remember I was always the tomboy type, anything that involved playing outside or competition, I wanted in.  So naturally, physical jobs were more of a preference for me.  As I grew into an adult, I knew I did not want an ordinary 9-5 job.  I had and have no desire to sit stationary inside a cubicle for five days a week.  From lifeguarding and working in a kitchen to catering and events, my jobs have always demanded a certain level of intense physicality. One could classify them as "on your feet, go, go, go" type of jobs.

In May of 2013, after almost three years of unemployment and a galore of health issues, I was finally able to return to work.  With much excitement and enthusiasm, I acquired a job as a Part-time (20hrs/wk) hand-tossed pizza and sandwich maker for EarthFare, "the healthy supermarket." My first week there I was already scheduled for 40-hours instead of the promised twenty, a grueling schedule that finally ended when I quit three months later.  I was the only team member trained in every aspect of the prepared foods section which included more manual labor and more hours than I had signed up for. After a few others quit and I was not given sufficient breaks during the day, I had no option but to quit, leaving me to look for work once again.

About a month after quitting I was told about an opening as a Sales Photographer at the highly esteemed Biltmore Estate.  Experience was not required, so the fact that I had experience with photography, tourism, and sales, gave me a leg up.  After an hour long interview and responding with Ferris Buellers Day Off as the answer to my favorite movie,  I was offered the job.  Not only was the job not physically strenuous, something I was not used to at all, it dealt with something I love, photography.  And on top of that I got to work in a European inspired castle in the middle of the Appalachian mountains.

Being a sales photographer was the first job I've held that truly challenges the mind with almost no physical demands. But after 7 months with the Biltmore, I decided to call it quits with them as well. This time it was the mental stress that got to me. On a typical day we could have anywhere from 1000-7000+ guests come through the Biltmore, of which, every individual passes by the camera to be greeted by us.  And for half of the visiting guests, it becomes an unpleasant experience for them, making our experience that less pleasant as well.  On top of that, half the day is spent outside, which with all my medications, I am not able to brave the heat for too long.  It paid well but it was a dead end job, leaving little to no room for advancement.

After quitting the Biltmore, I found a job immediately with the Asheville Tourists, the local minor league baseball team, selling merchandise in their store known as "The Tourist Trap."  This is the same team that the reigning Super Bowl quarterback, Russell Wilson, played for in 2011 as a second baseman.  I only worked during home games, five nights every two weeks, for minimum wage so I knew this was not the answer.

After much soul searching and figuring out what kind of job my body could handle physically and mentally, as well as a job that could offer me benefits, room for advancement, and transfer opportunities out west where my soul will always be, I decided to apply for a front desk position.  I applied to ten different hotels and after four weeks I received a call from the Holiday Inn & Suites in downtown Asheville offering me a position.

I have now been working at this hotel for three weeks.  There are no physical demands and the mental stress is drastically less than the Biltmore.  I feel comfortable in this position and I expect and plan on turning this job into a career.   The road to get to the position I'm currently in was a long and winding one, but on the way I learned more about myself and my limitations.  It has not been an easy transition to adapt a life-long diagnosis into an already existing life but nonetheless it is adaptable.

Three years is a very long time to be out of the workforce, and to re-enter it without being physically capable of completing jobs that I once had, was hard to accept, but accepting is essential.  There is no moving on and progressing as a person if there is no acceptance.  Even though I am no longer able to work in events, where my passion truly lies, or live at a reclusive resort, I can come close. Life is always changing, for the better and for the worse.  It's easy to let the hard times get you down, especially when it's your own body turning on you.  I felt lost once I knew I no longer could be physically active, but now I believe it's opening new doors for me that I may have never opened myself.  Do what you love, because life's too short not to.



Peace, love, and happiness dawgs!!!!

A New Chronic Disease Diagnosis

Eosinophilic Esophagitis

So on New Year's Eve, I went into the hospital in Asheville, to have an Upper Endoscopy with a 48-hour Bravo monitoring test.  The 48-hour test was given by clipping a tiny electronic reader on my esophagus to test the PH Balance.  I would then carry a monitor around with me for the next 48-hours, recording everything that I ate, when I slept, when I laid down, when I burped, when I coughed, when I had any symptom listed on my chart, in order to correctly measure how much acid I produce.  Well the results came back, and was told I have a mild amount of Acid, so they prescribed Pepcid.  That's good, because if it was a large amount, I would have to be on a medicine called a Proton Pump Inhibitor (PPI) and I have already tried four, and been allergic to each of them.

So while the doctor did the Upper Endoscopy, he also did a biopsy of the Esophagus lining to rule out any other possibilities.  What he found was Eosinophilic Esophagitis.  I still don't know how to pronounce the first word correctly.  Apparently this is an allergic reaction to an unknown food and sometimes other common allergens such as mold.  And the allergic reaction, although the culprit is unknown, causes a swollen esophagus, scaring of the esophagus, difficulty swallowing, severe chest pain, nausea, and a few others.  For this, I was prescribed an Inhaler which I must take twice a day, followed by three hours of not drinking or eating after each spray.  I'm fine with the no eating for six hours a day, it's the drinking I have a problem with.  I drink water all day long, mainly because my medications cause me to be dehydrated, so I don't know how this is going to work.  Not only that, the doctors don't even know what food is causing this.  So even if I use the Inhaler, if I continue to eat a food I'm allergic too, unbeknownst to me, than wouldn't the medicine not work correctly?

This is apparently a newly discovered chronic disease.  Add that to my list.  This will be #4 of chronic diseases, and also relatively new to science diseases that I have been diagnosed with.  I'm not sure what to think about this one.  I'm definitely not too excited to use an inhaler twice a day for an allergic reaction to something unknown.  

At this point, I'm a little confused, frustrated, and tired.  I just want to be free of pain, and to feel healthy.  That thought is starting to look more unrealistic as the days go by.  So if any of my nursing friends, or just anyone has ever heard of this before, or knows someone who has it, I would love to hear from you!