Having a 


in Your Own 



My Blog

Strong people stand up for themselves,

but stronger people

stand up for others...


Building Trusting Relationships Between Patient & Physician

December 1, 2018

Building a trusting relationship between yourself and your physician can often become just as difficult as building a house...most marriages end due to the stress of building a new home, so it would only stand to reason that the stress between a patient & physician could just as easily be destroyed while building a relationship.  I know.

We're taught to go into all of our relationships with an unconditional love & trust.  Often times that same type of love/trust is not reciprocated.  That's when there is no trust, no respect, and definitely a lack of communication, all of which damages and eventually destroy's the relationship.  I liken it to an emotional car crash.  Yes, there are many emotions that go hand-in-hand when forming a relationship with a new physician.  You've heard such wonderful words and praise for your new physician, yet when the visit actually takes place you find the physician to be arrogant & lacking of compassion, as he or she rushes through your exam like a horse at the Kentucky Derby.  You walk out of the physician's office in a state of shock, replaying the visit over-and-over again in your head while driving home.  Many questions are left unanswered.  Did they really say that?  Was I not clear enough about my symptoms?  Should I have said more...said less?  You feel as if you've just lost your best friend even though you only knew them for a good five minutes.  Your expectations were high, as well they should have been, and that fall from grace, leaves us, the patients, empty.  No patient should ever leave a physician's office feeling this way.  

Don't despair and don't give up!  They say there is someone out there who is meant just for each one of us, which also includes physicians.  Like when building a home, there is need for partners to communicate so that the room sizes are correct, the wall paint is just the right color, and that the end result is one that makes everyone happy.  When there is no communication, or especially lack of listening from both sides, the home begins to crumble.  No one survives.

If you are starting fresh with a physician and their attitude is patronizing as they minimize & scrutinize what you are trying to tell them, it's time to stop building the house, and/or car, and get out before it crashes.   

I encourage all patients to never give up if they're struggling in the area of having an open dialogue with their physician, new or old.  There truly is a physician out there just waiting for you, who you can trust, have communication with, be able to ask questions of & get answers...one who will build that House of Trust with you, by earning it! 

Healthy Body/Healthy Mind; Healthy Mind/Healthy Body

September 27, 2018

You cannot have a healthy mind without a healthy body and vice versa.  It just doesn't work that way.  One has everything to do with the other.  

From my own experience, I have found that if I have remained faithful to my workout routine, that I can think better, and handle the most frustrating, frightening details of my life.  I have also found that keeping my mind alert by reading, learning, and utilizing my cognitive skills, my  overall physical health benefits as well.  

Having heart disease can often be a deterrent to following through on my own advice.  I hate when this happens!  On those days that my body just won't allow for exercise, I find it much harder to write, or think appropriately.  The other side of that coin is those days where I am mentally exhausted, I find it difficult to follow through on my exercise routine.  It took me some time to connect the dots between my body & my mind, but now that I know the two are deeply connected, I push just a little harder on the bad days.  And then there are those days where it's just not going to happen, I have learned to lay back and relax, reading a book, meditating, or just resting.  Getting your body & mind to work together is work.  Each person is different and therefore has to find what works for them individually, which may not be anything like my routine.  The key is to recognize your own body and mind's ability to function under pressure, and then to figure out what work's best for you.

Find a physical exercise that you enjoy doing, or you won't stick with it.  I do pushups for upper body, along with hand weights & hula-hooping.  That's right...hula-hooping, a long forgotten art.  For $4 I found that using a hula-hoop was a great all-around body exercise & it's FUN!  Who would've thought?!  When I can't get outside to walk, I have a small step-climber and a sit-peddler to take the place of walking so that I can get my cardiovascular workout in.

Cognitively, when I can't concentrate on writing, I pick up a book to read.  Not an educational book that will make my mind work harder, but a book just for entertainment purposes.  If I don't have a book handy, then I go to my go-to magazines, where I can check out all the latest fashions...I keep it simple.

Don't forget that eating healthy and getting plenty of sleep are also important factors in keeping the body & mind working properly.  My next blog will go into more detail regarding these two key components of leading a healthy lifestyle.

So get started today!!  Get your body moving & your mind turning, and be the best you can be :)

Drinking & Driving DO NOT MIX!!!!

September 16, 2018

When I was in my young adulthood, neither I, or any of my friends, thought twice about getting behind the wheel of a car after having had a few too many.  If an accident ensued, even if a fatality was involved, that's exactly what was placed on the police officer's report...car accident.

We now know however, that getting behind the wheel of a car after having a few too many, which can be as deadly as a gun if mishandled, is NO ACCIDENT.  And if a fatality is involved, most likely there will be jail and/or prison time for the drunk driver, as well as there should be.  Even more so for those individuals with numerous priors under their belt.

It took my 18 yr old grandson being hit head-on by a drunk driver one week ago for me to blog about Drinking & Driving...it shouldn't have.  My grandson walked away from the photo on this post, but only by the Grace of God!!  The officers on the scene told the family & I at the hospital that they all agree my grandson is truly a "Walking Miracle!"  I agree.  My daughter, his mother, and I have posted photos of my grandson's car, along with commentary, on Social Media in the hope that someone will realize that drinking & driving do not mix and can often become deadly as a result.

My grandson is slowly healing both physically & emotionally, but my daughter & I are still struggling in the emotional department, as we know that one week ago yesterday evening, a young man chose to drink & drive, and almost killed my daughter's only child, and my first-born grandchild.  We could have been planning for his funeral this past week, rather than for his future.  The drunk driver who hit him had two prior OVI's, walking away from one, and with one conviction.  He was convicted of the first OVI in 2016 and placed on Adult Probation for three years.  His second OVI resulted in injuries to both the driver and their passenger after he crashed into the back of their vehicle, then fled the scene.  He had no driver's license or insurance, and to this day, the victims have not been compensated.  In my grandson's case, this same drunk driver happened to be  driving his dad's truck, who thank God, had insurance.  This repeat OVI offender is in jail, where he will remain throughout the course of my grandson's case, and eventually be transferred to prison where at least for 1-3 years we know he won't be able to hurt or kill anyone else.

You do not want to be my grandson, and you do not want to be the drunk driver who hit him, so on behalf of my grandson I say...PLEASE DON'T DRINK & DRIVE!!!

September 11, 2001 - NEVER FORGET!!!

September 11, 2018

As Americans, we have learned to take many things for granted.  We wake up, eat, walk, talk, see & hear which allows us to move through our day freely & and for the most part  smoothly.  The expectation that the next day and all the days that follow will bring us the same routine, make us become complacent, having a false sense of security, and taking each day for granted.

On September 11, 2001 that type of thinking came to a crashing halt for all Americans...some more than others.  Some innocently sat in planes & buildings never realizing that for them, life would soon be over in a split second... some suffered unimaginable pain, fear & the knowledge that they would not be going home that night.  Others never knew what hit them. 

There are times in our lives when we remember exactly where we were when a horrific tragedy occurred.  For example, when President John F. Kennedy was shot and killed, I remember sitting in my 6th grad class at my desk when the loud speakers asked all teachers to come to the auditorium immediately.  When our teacher returned with tears streaming down her face, she turned the classroom television on, telling us that our country's President had been shot and killed while riding in a motorcade.  Those images on the TV remain embedded in mind even today.  

On September 11, 2001, I remember exactly where I was when the first plane hit the North Twin Tower in NYC, soon followed by yet another plane crashing into the South Twin Tower, killing everyone aboard both planes & many who were in the towers working.  The next plane hit the Pentagon in Washington, D.C. killing all passengers and 125 pentagon workers.  Passengers on the fourth & last plane knew they had been hi-jacked, frantically calling family & friends, learning of the other plane crashes.  It was then a few of the passengers realized that they could just sit and wait for it to happen, or they could attempt a take-over of the plane, knowing it might cost them their lives, but they were quickly running out of options.  So, with amazing courage a few passengers after getting the go ahead by Todd Beamer who's "go code" was 'let's roll' went after the hijackers, but were outnumbered and the plane ended up crashing into a field in Somerset County, Pennsylvania killing all 40 passengers & crew.  In a matter of a few hours, 2,996 innocent victims lives were lost, with more than 6,000 injured.  

The events of 9/11/01 were catastrophic and even to this day, American's across our great nation relive that day over & over again, but none more than those families who were left behind to grieve & try to make sense out of what will always be a senseless American tragedy.  We, as Americans should NEVER forget that day, and the many lives that were taken in the matter of a few hours.  Many tears were shed that day, and have been every day since.

I pray that this type of terrorist attack never again happens on American soil, and if it should, and if I am on a hijacked plane by any Terrorist group, that I can put my fear aside, putting America first & foremost before my own life.  And, like Todd Beamer I hope & pray that God would give me the same strength he gave Todd on September 11, 2001 to be the one to shout "Let's Roll"...


Every Dog Has It's Day...

August 30, 2018

Arf... Arf...  And yesterday was my dog's day.  Actually most dog's days are much better than the one I had yesterday.  Why?  Because they're expected to sit, lie, eat, sleep and just be happy, so they do.  Just sitting, lying, eating, sleeping does not work for this dog, but my bad days demand that I do just that...like yesterday.

Many individuals talk about how they took a day just to be "lazy," and do nothing at all unless it was something that brought them calmness & peace.  I don't have lazy days, as I do not enjoy my bad days, and I find myself jam-packing my good days with the errands and demands of my daily life, in order to play catchup from the bad ones.  When I tell friends and/or family that I went from the bed to the couch for the whole day, to them that's considered a lazy day.  For me?  It's considered a bad day and brings me no relaxation nor does it bring me a reprieve from difficulty breathing and extreme fatigue.  I hate it.  The thought of wasting yet another day of my already shortened life makes me want to scream, but I'm too exhausted to even do that.

I am not sharing this as a pity party or an oh, please feel bad for me moment, but to let others who are not chronically ill  better understand the world that many of us, who do live with chronic illnesses, do experience.  There is no way to get those bad days back, and I find myself praying that God will place me on a deferment plan, like banks do with monthly payments, allowing my bad days to extend to what would have initially been His expiration date on my life.  I'm sitting here laughing, because what I just typed made me think of that joke "If you want to make God laugh, tell Him YOU have a plan."  I'm expecting the sound of thunder any moment now, which I will choose to define as God's laughter.

I have now added to my "Bucket List," yes, I have a Bucket List, a Bad Day Deferment Plan designed by God & God alone, and without any help from me... Arf!

Patients Over Profit... Or Is It Profit Over Patients?

August 27, 2018

I recently read an article in our local newspaper regarding hospital revenues rising.  It was entitled "Fewer hospital stays but revenues rose."  Well, duh!  Most insurance companies only allow a patient so many in-patient days, and will stop payment on any days past that cut-off point.  For chronically & critically ill patients it is a necessity to incur extended stays with many insurance companies refusing to cover the costs.  

The whole article addressed ONLY hospital profits & percentages with patients only being mentioned in the context of money, not  type of, or quality of, care their patients received.  At one point, the discussion led to a statement being made "We're putting off getting stuff fixed."  That "stuff" being referred to is the one-in-same medical equipment (MRIs/CATs/Echos/andmore) that we patients depend on being trustworthy & good working condition, resulting in true readings.  If the "stuff" isn't being properly maintained, cared for, or is out-dated, the patient will be the last one, if ever, to know.  

The author of the article was delving into those challenges of Ohio's marketing strategies of hospitals and health insurers only.  He also discusses Ohio's changing horizons in health care.  I would like to remind the author that without patients, marketing strategies & changing horizons in hospital health care would be a moot point...we, the patients are why there are physicians, hospitals, and health insurers with profitable businesses.  Take us out of the equation, which most do, and profits & percentages mean nothing.

Are there caring & compassionate physicians, medical staff, hospital personnel?  Yes.  But, through my own personal experiences, they are sadly becoming, each & every day, few and far between.  If profit continues to come before patients, eventually patients will have no choice but to forego costs of insurance, medications, treatments, and will choose to just die.  Is there anything more sad than that?  NO, there isn't!!


Time Flies

August 16, 2018

My how time flies when you're not having fun.  And trust me when I say the last two months...scratch that...last two years  have NOT been fun. 

When my friends and I were younger, we were told by our parents that life would get easier as we got older...WRONG!!  Maybe it did for them back then, but in today's world, not so much.  The distractions available with today's technology, not to mention the "me generation," are overwhelming at best, and often get the best of us!  Minutes become hours, hours become days, days become weeks, weeks become months, and months become years.  Before we know it, a decade has passed and we can't remember where we were, what we did, or who we are any longer.  

I've been back in my hometown now for the past two years, and other than those "special" moments that truly fly by like a shooting star, those two years have been a nightmare.  Drama.  Drama.  Drama.  And more Drama everywhere...family, friends, country, the world itself.  I often find my mind wondering off into a place of PEACE, one where there is a beach, the sound of an ocean, island music playing, but most of all peace, total peace.  A place where I can achieve what I set out to achieve in life...becoming an author.  I love to write, and have so many ideas running through my mind that sometimes I feel as if my head will explode because I can't get those ideas and thoughts down on paper.  Writing has always been very cathartic for me, bringing me total peace even without the beach, sound of the ocean & island music.

When I looked back at my blog and saw that June 26th was my last "completed" blog, I was blown away.  How did that much time go by without me even writing one blog?  I saw where I started a blog on July 4th, but never finished it...I did today, August 16th.  People say that we just have to say no to those distractions that keep us from doing what we love, but when some of those distractions are actually the people we  love & care deeply about, how does one say no?  One doesn't.  All families have dysfunction in one way or another, but in my life, dysfunction has now become a way of life, not an option.  I have even put my own heart health on hold in order to take care of immediate business at hand, and when I say immediate, it has the potential of making the difference between life and death...I'm just putting my life & death on hold.  No, I'm not a martyr by any means, but I have a conscience, and the guilt of not being there for those who can't help themselves would place such a huge guilt trip on me, and not one that would take me to a beach with an ocean!

I am writing in my blog today, because I feel as if I am making some progress in sorting out the difference of those needs of others & my own.  However, I will take it slow, as I know that dysfunction is cowering somewhere around the corner just waiting to rear it's ugly head once again.  I'm not being pessimistic, just trying not to get my hopes up...been there done that.

They say that faith can move a mountain.  But right now a "little faith" is all I have...


July 4, 2018

HAPPY FOURTH OF JULY!!!  Thank you to our servicemen & women who have served & those who continue to serve our country, allowing us to enjoy those freedoms that are often taken for granted...God Bless You All & May You Return Home Safely to Your Families!!!!

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Does Your Facial Expression Correspond With Your Disease?

June 25, 2018

Happy...smile.  Sad...frown.  Pain...grimace.  Frustrated...scream.  Sounds easy enough, right?  Well, it's harder than that for those of us living with a chronic illness.  Many of us smile when we're sad, frustrated, and in pain, giving the wrong impression, just so others don't have to feel it.  We can't expect others to be mind readers.  If we don't use the corresponding facial expressions with what we are truly feeling, then we can't expect others to know.

As chronic patients we need to understand that we are not responsible for how another person reacts to our honesty when asked the question, "how are you doing?"  Not wanting to be seen as a complainer, a downer, we smile and say, "I'm doing great!" which couldn't be farther from the truth.  It's okay to reply, "today is not one of my best days, but I hope that tomorrow will be."  Depending on who is asking you, and you are comfortable enough to be honestly blunt, say what I say, which is, "Although I know I am truly blessed, today sucks...I'm having difficulty with my breathing, and I feel as if there are 50 elephants sitting on my chest!"  If the person on the receiving end can't tell how much you are hurting, exhausted, and frustrated, that's okay.  Sometimes just telling it like it is becomes cathartic for oneself.  After all, it's not about them, it's about you.  They asked, and your response should be respected.

I often return home after checking off my daily to-do-list, sometimes feeling as if I cannot even take one more step out of exhaustion and having difficulty breathing, yet it never fails, a well-meaning neighbor catches me before I reach my door wanting to chat...trust me when I say, that's the LAST thing I wanted to add to my to do list!  However, I stand there smiling as if I slept with a coat hanger in my mouth overnight, nodding appropriately, because I'm too out of breath to answer.  Having grown up to be a "people pleaser," I find it hard to do, but I have nonetheless learned to immediately let them know I'm not feeling well and need to lie down.  I have yet to have anyone resent my response, at least to my knowledge.  Maybe they're just good actors?  Hmmm...

Bottom line is, we as chronically ill patients cannot expect others to understand what our days, and many nights, are like for us, or to realize that we aren't the same people we used to be, and that it's okay for us not to smile...it's okay to even frown.  If you're in pain or exhausted, show it, although an astute person should be able to recognize this if we are showing the corresponding face with that of our disease.  We can point that finger of shame at others all day long, but in the end if we're not honest with what we're feeling we need to turn that finger toward the real culprit...ourselves. 

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When You're Chronic Illness Becomes Your Full-Time Job!

June 24, 2018

Once upon a time, I had a full-time, six-figure job.  Then I was diagnosed with chronic illness which has only worsened over time, changing both the description, and the location, of where I once performed my full-time job.  Prior to my diagnoses I worked on the 7th floor of a government building, now I work from a small office at home.  I once made six figures, I now have $0 income.  Everything changed...everything.

My days, once filled with overseeing 136 employees, responsible for over 35,000 child support cases as, well as the staff who handled those cases, have now been replaced with doctor visits, tests, insurance companies, procedures, calls & emails, along with checking my electronic medical records to make sure that the documented information is correct, which is not, resulting in more visits, calls & emails.  And what really sucks, is that you're paying them, not getting paid!  

My fights used to involve delinquent parents who owed back child support and their attorney's.  Now I find myself fighting the medical system on so many levels, it's hard to know where to begin!  Most patients don't fight the system.  They just give up, with many of them dying due to medical errors and medical record errors.  If you don't learn to advocate for yourself, and find the confidence to stand up to the white coat, you will succumb to that white coat one day.  Don't get me wrong, there are many wonderful doctors out there who truly do listen with something more than just their stethoscope, but they are becoming fewer and fewer in a world where it's not the quality of care for a patient as much as it is about the quantity of patients seen in a day.  It has become a system much like that of farm life with much of the time spent by a doctor corralling in the herd.  Don't get lost in the herd, or like cattle, you will end up going to the land of no return. 

It's not only medical errors that can kill you, but those mistakes made in recording your medical record.  EX: I just had a cardiac MRI which stated under "history," that I suffered from Hypertension (high blood pressure), something I have never experienced in my lifetime, yet is now set in stone in my electronic medical records.  I actually have the exact opposite, hypotension (extreme low blood pressure).  The next time I end up in the ER, I can guarantee that the ER staff, based off of my electronic medical records, will attempt to treat me with medications for Hypertension, which could have severe, if not fatal, complications.  I have yet to end up at an ER, and/or after being admitted, and find myself receiving  the correct medications.   Most ER doctors go willy-nilly in requesting tests that have nothing to do with my actual diagnoses.  Well, it could be this, or it could be that.  I am not there to be diagnosed, I am there to be treated for chronic heart issues...it's all in my chart(s), errors and all.  It often becomes all-out war between me and the doctor on duty, usually ending with me kicking them out of my room.  Yes, you can do that, and if you believe a doctor is not listening to you, or taking advantage of you, resulting in you becoming the next guinea pig of choice, SPEAK UP!!!!  Your years in your body trumps that of those years the doctor spent in medical school...if done right, it becomes a team effort with each knowing where their strengths & weaknesses lie, and respecting each other.

Not a day goes by, where I'm not placing a call, email, or messaging one of my physicians or cardiologist regarding test results, that by all means should be under test results in my electronic chart, but instead the words, 'the content of these test results cannot be displayed.  Please contact your physician for results.'  I thought electronic records were supposed to alleviate that step...nope.  So you message your doctor, which can take days to get an answer, or call, which often results in the same wait time.  And my favorite is when they do answer, they don't answer the question(s), but go off on some minor issue tangent that you haven't even inquired about - UGH!!!!!  Many nights I go to bed feeling as if I've been in the boxing ring with Muhammed Ali, which results in a very restless night, leaving me more exhausted than I normally am the next day, not to mention still angry from the fight the day before.  And then I begin the process all over again.  

I could go on-and-on, but it's all the same...if the doctor only took the time to truly listen to their patient, took down the information correctly, placing it on their electronic medical records correctly, alleviating any medical errors, both their world, and the patient's world would be much simpler.  Sometimes it's hard to locate exactly where the problem initiated from.  To save you some time, don't even try.  It's like the phone game we played as children, where the first person in the circle told something to the child sitting next to them, and so-on-and-so-on, until reaching the last person in the circle.  It's absolutely mind-boggling what comes out of that last person's mouth.  This my friends is our healthcare system.  I would welcome you to it, but it would be commensurate with welcoming you into the Seventh Circle of Hell...

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Chances of Dying From Medical Record Errors

June, 18, 2018

If you are living with a chronic illness there is a greater  chance that you will die from incompetency within the medical profession's ability to get your records recorded correctly, than you will from the illness itself.  Many chronically ill patients are so busy trying to stay alive & fighting with their insurance company that they fail to obtain a copy of ALL of their medical records.  And when they finally do, the real shock sets in.  You all of a sudden have an illness you didn't know about, and out of the one's that you do have, there's a good chance that they're all not listed.  Although you've relayed to the nurse over-and-over again, which medications you are still taking, and those you aren't, the ones you stopped taking remain on the list, and the new one's aren't even listed.

Electronic Medical Records (EMR).  Let's discuss those shall we?  All of my electronic medical records, from each physician I have, fall under the name of MyChart, which means, all of my medical records, visits, test results, health summary, etc.,  are all electronically recorded supposedly for my convenience.  Other than blood tests, I rarely pull up a test result without seeing the words "This result cannot be displayed in MyChart.  To get the result contact the ordering provider."  And I have MyChart "why?"  Another issue with EMRs, is that if a patient should end up in the emergency room, their EMRs are retrieved by ER staff for review, and if there are mistakes on your medical records, those mistakes could result in errors being made by ER staff based off of those EMR errors.  You could be given the wrong medication, or have the medication you need withheld.  You could be treated for an illness you don't have, and mistreated for those you do have.  You could die.  

Try arguing with either a new physician, or ER staff, that your EMR's are wrong.  There's a good chance you won't be believed, but the errors will be, especially if you are a woman.  When a female patient argues with medical staff regarding her medical care, she is often viewed as being difficult and/or having panic/anxiety issues.  Over the past 15 years of dealing with many physicians and numerous visits to the emergency room for my heart, my medical records are peppered with the words "anxiety," and "patient is very difficult to deal with."  Damn straight I'm difficult!  I'm trying to help you to keep from killing me due to errors in my medical records.   

So, who's truly at fault for all of these medical errors being made on a daily basis, then passed on?  Is it the physician?  Is it the nurse?  Is it the medical stenographer?  Is it a medical staff individual?  Better yet, will we ever truly know who's at fault, or will the "hot potato" game continue, having those medical records you're questioning thrown from person to person, never landing on anyone's particular shoulders?

I could go on and on for days regarding this topic, but for the sake of both my sanity & yours, I won't.  If you are a patient, chronic or otherwise, do yourself a favor and request ALL of your medical records from each & every physician you see, and every hospital you have been to.  Then sit down one morning with a nice cup of coffee, and rather than read a newspaper filled with the horrors of the world, read and review your medical records for any horrors...uh, I mean errors, and/or missing information.  It just might save your life...

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Is Social Media Healthy?

June 16, 2018

There has been an ongoing discussion regarding whether  unlimited access to a variety of social media outlets is  healthy or not.  It is my opinion that like any other product that has the potential to turn into an addiction, moderation is key.  But with so much technology in the world, how does one keep it under control? 

On the positive side, social media allows contact to be made with other individuals, especially those in the same field of work, or those with the same interests, and not just nationally, but internationally.  I personally, as a heart patient, love having the opportunity to interact with other heart patients, cardiologists, physicians, nurses, and all others in the field of medicine from all over the world on Twitter.  I have learned so much from their words, their cultures, and the information they forward through their tweets.  I love the fact that twitter is short and sweet, and although we all have at one time or another shared a family photo or two, or beautiful photos of landscapes, and even prophetic quotes, the norm is to stick to health care for all.

I have never been on another social media site other than Twitter, with the exception of maintaining the blog on my own website.  I get asked all the time why I'm not on Facebook, Instagram, LinkedIn, etc.  If I were to be on each an every social media site available, which there are some individuals who are, when would I eat, sleep, exercise, work, complete my book, spend quality time with my family, and most importantly when would I have the time to take care of myself and my heart?  This is where the negative aspect of social media often comes in.

So many social media addicts, yes addicts, become obsessed with the number of followers they have...quantity becomes more important than quality when connecting with others.  And the bullying that occurs?  That's a whole other blog.  Many Facebook users find themselves comparing their own lives to that of others, solely based off of those photos made available, and trust me when I say, the photos you see on Facebook are not always what they seem, thus leaving the lonely, non-confident, conflicted, self-loathing, depressed people of the world feeling even worse about themselves.

We have teens walking into telephone poles and falling into Shopping Mall water fountains while texting on their phones.  Even worse, we have teens dying, and oftentimes  killing others while texting and driving.  People are committing suicide due to cyber bullying, and babies are drowning in bathtubs because mommie is online playing internet games, or chatting with friends on social media.  Then, of course, there are the adults who pretend to be teens just to make personal contact in order to rape, or in some cases even murder our precious, innocent children.

I won't lie.  When I first got on Twitter, and my followers grew, it was extremely hard to shutdown my laptop in order to stop.  I'd say, just one more tweet...just one more look at my new notification or DM (direct message)...just one more.  Alcoholics and drug addicts are very familiar with the "just one more" phenomenon  After about a month of that, I regained control of my actions, getting back into a routine, exercising more, calling friends I hadn't spoken to in a while, and meeting family and friends for lunch or dinner.  I once again had what I refer to as an assemblance of a life...my life. 

If you want to remain healthy, physically, mentally, and emotionally, prioritize which social media you feel you get the most out of and shut down all the others.  Then regulate the time you utilize that social media site, your texting, and all other technologically-driven equipment.  Everything in moderation...everything. 

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Waiting on Medical Test Results

June 12, 2018

I was never much of a "clock-watcher" when I was an employee, but as a patient waiting for test results, I have now become one of them.  I watch the clock knowing what time my doctor's office opens, and when it closes, waiting anxiously for that phone call.  I check my emails constantly just to make sure I haven't missed the doctor trying to reach me thru an email rather than by phone.  I faithfully begin my watch around 7:00 a.m. and continue until about 6:00 p.m.

Of course nowadays, we have Electronic means i.e. My Chart to check for any messages from our doctor, or see if there are any test results, that you just haven't been contacted about yet.  Today, I've been burning up the information highway roadways since early this morning, even though I was told that it could take a few days to get the results of my cardiac tests from yesterday.  I then convince myself that if it were anything to worry about, then I surely would have heard something today, right?  Wrong!  A cardiac MRI is the second half of the testing, and here I thought that the 3-hour time spent in a narrow capsule, sucking in breath, just to let it out and hold it, was the crux of the test.  Between the cardiac MRI & other testing yesterday I was there from noon until approximately 8:15 p.m.  which is quite a long day for me!

As chronically ill patients, we want to believe that our health issues are more important than the next patient's but that couldn't be further from the truth.  There is always someone worse off, as I witnessed walking the halls of the hospital while going from one testing unit to another.  It's not hard to recognize who the patients are as we all have anxious looks on our face, without anyone ever having to see our hospital bracelet, our slow pace, and/or the desperation in our eyes.  I am one of those rare chronically ill patients however who doesn't look sick, so no one ever gets past my looks and physic long enough to see the panic and desperation in my eyes or in my quick movements.

It is now the end of the day, way past the 6:00 p.m. deadline of receiving a phone call.  Sleep will not come easy, and even if I do fall asleep it will be restless due to the anxiety both my mind & body are experiencing just waiting for the next day to come.  I rarely rush thru my days, as it just might be my last, so I long for them to last forever.  But after going thru a battery of vital cardiac tests, I just want that phone call.  That email.  That test result to be noted in My Chart.  At least my tests were performed on a Monday and not a Friday, which would mean waiting over a very long weekend, which is excruciating at best.  No one ever hears from their doctor regarding tests over a weekend unless it is a dire situation needing immediate attention.  Better to wait thru  the long weekend to end than to get THAT phone call.

So, until tomorrow, or possibly even the next day, I will stay busy, entertaining myself with my writing, blogging, putting photos of my family, my grandson's graduation this past weekend, and photos of his last three ballgames in their respective albums.  Maybe I'll finish that book I got from the library last week?  Or, maybe I'll just lay in my bed wearing myself out just thinking of all the possibilities my test results hold.

Patience is a virtue... I really need to work on that when it comes to waiting for test results.  

I think I'll go with finishing the book.   

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Why So Many Patients Give Up So Often

JUNE 10, 2018

There are patients, then there are patients.  There are those patients who visit their primary physician once a year for their annual check-up, and who might have a few additional visits due to a sore throat, a lingering cough, or an ear infection during the year.  Then there are patients, like myself, who see both my primary physician four times a year, and my cardiologist who I see sometimes up to six-to-eight times a year, depending on my heart symptoms.

When a patient falls into that second category, it not only takes over their life, it becomes their life.  In between those doctor visits are often times tests and sometimes procedures/surgeries.  The calendar you once had filled with lunch plans, shopping with friends, attending sporting events, and meeting friends for a drink after work, all of a sudden are replaced with doctor appointments, medical test after medical test, procedures, and in some cases surgery and the recovery thereafter.  Many patients who become chronically ill end up not being able to work and soon begin losing touch with friends and co-workers, resulting in sitting home alone, where the phone no longer rings, and no one visits.  If a patient has been sick for some time, there comes a time when everyone is "over it," and they walk away.  As the patient, we don't have that option.  We wake up with our health issues, and we go to bed at night the same way...worn out.

Having a chronic illness, or illnesses, will wear a patient down faster than any job ever could, as it affects them physically, mentally & emotionally 24/7.  It becomes a full-time job with no pay and no benefits.  Patients often feel as though they have become a burden to family & friends, and stop asking for help.  Chronic illness is the "new lonely."  Chronically ill patients no longer know who they are, getting lost in a system that has lost it's way.  Dealing with insurance consents and claims alone is daunting at best.  Phone calls made by a patient to their insurance companies, their physicians, and hospitals can easily take up a whole day, if not more.  

Then we have the bill collectors.  That's a whole separate world of it's own.  They can be relentless, even for those patients who only have a few days, weeks, months to live.  There just is no more fight to go around, so, patients just give up.  They give up fighting to be heard; they give up fighting for a diagnosis; they give up on being tired all the time; they give up on thinking others will help them; they give up on those insurance companies they've paid money to for so many years, who are now refusing to give consent and/or pay for a claim; they give up on their future, their dreams; they give up on trying; they give up on life...


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That Feeling Of Sitting On A Time Bomb

June 7, 2018

We've all had that feeling at one time or another in our lives where we feel as if we are sitting on a time bomb.  You know it's coming, you just don't know when.  In my case it's not even just a matter of when, but how?  

I have numerous heart conditions, but the ones with the utmost priority are my mitral valve regurgitation (moderate level), tricuspid valve regurgitation (moderate level), a left circumflex anomalous artery & a mobile atrial septal aneurysm, all of which are causing serious blood flow issues.  My valves will not repair themselves, but according to my cardiologist, and the opinion of a cardiac surgeon, "I'm just not quite there yet."  You see, I have one more level to reach, severe, before the surgeon will consider doing open-heart surgery.  There are no known additional risks to performing the surgery at this time, at least not for me the patient, but due to the Do No Harm Oath, there is the fear of a lawsuit for not waiting until I reached the "textbook" level of severe.  Nothing about my cardiac health is textbook...never has been & never will be!  The two congenital issues are not serious enough on their own to warrant open-heart surgery, which I agree with, however, they will be repaired during the open-heart surgery, should I ever measure up to their standards of the normal heart patient.  There is a reasonable chance that repairing the left circumflex anomalous artery might just be the culprit in my diagnosis of idiopathic Pulmonary Hypertension...just one more issue I'm dealing with.

I am the one living with the daily chest pressure, difficulty in breathing, and the extreme fatigue, and I say "Let's Roll!"  Every day I'm left to wonder if my worn out heart will just give up, and cardiac arrest will step in, putting me out of my misery...every day.  During the last plus years I have been fighting the good fight to get this surgery performed, I have been diagnosed with "minimal" aortic regurgitation, mild dilation of the left aortic cusp, the possibility of the beginning stages of heart failure, and infiltrative cardiomyopathy, all of which have been at the core of my greatest fear...that I would end up with either more heart issues, or another disease, leaving me too weak to have the surgery when they deem appropriate.

Then there's the actual surgery itself, which I sit and anxiously wait for.  Yes, patients-after-patients are having open-heart surgery every day, with wonderful results.  I just want a chance at being one of them, but the longer we wait, the further away a better outcome gets.  The cardiac surgeon from the Cleveland Clinic informed me, through her nurse, "I would definitely need the open-heart surgery at some point, but felt that we just weren't quite there yet."  The surgeon didn't even have the decency to personally see me, or make the phone call herself.  When I do have my open-heart surgery, I want that surgeon to know the color of my eyes, who I am as a human being, and know that I am not just another number on a chart.  Let's just say that the surgeon taking the "wait-and-see" approach will NOT be performing my open-heart surgery!

I fight so hard on my really bad days just to breathe and to move from room-to-room.  I shouldn't have to also fight a system that is more worried about being sued than giving a patient their quality of life back.  My life matters, and it should matter to the medical world as well.  After all, I am 50% of the equation, as I am the one being cut on and  paying for it...financially, physically & emotionally.

I am not a quitter, so I continue in my search of finding a cardiac surgeon who sees my quality of life, or in this case lack of, as important as I do, and I finally hear those two words I've been waiting to hear..."Let's Roll!"


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Partnering With Go Red For Women of Cincinnati, OH

June 6, 2018

Today I met with two of AHA's Go Red For Women Cincinnati staff, Jenni & Courtney, to discuss pulling our resources together, in order to partner in saving the lives of those women living with, or at risk of, heart disease.  It was a great decision!  After all, two hearts are better than one.

I have been a National Patient Advocate for over ten years, and between my experience as a patient advocate & as a woman living with heart disease, it was a no brainer for Go Red & I to join forces against the No.1 Killer of women over all other diseases & causes of death.  I like what they have accomplished, where they are at in the fight, and their vision for the future.  I look forward to the opportunity to work together in every area of Women & Heart Disease Awareness.  It's a GOOD fit!!!

I have been a patient advocate on my own for a few years now, but in reality, it truly does take a village to make a difference, and when you're facing the reality of the affect heart disease has on women, there is power in numbers!  Yes, heart disease is also the No.1 Killer of men, however, women are dying at a faster rate due to being ignored, blown off as having symptoms of panic/anxiety attacks, hormonal issues, or even in some cases, being seen as psychotic.  We've "come a long way baby," but we still have a long way to go.

I look forward to working together with the Cincinnati Chapter of Go Red For Women in order to help bring awareness to heart disease, and to educate female patients on how to better advocate for themselves when it comes to their heart health, as well as to help educate physicians on how to listen to their female patients, presenting with symptoms of heart disease/attack, with something more than just their stethoscope!

Yes, this is most definitely a GOOD FIT...

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WEGO Nomination for Patient Leader Hero

June 6, 2018

Today I was informed that I had been nominated for the WEGO Patient Leader Hero Award.  I must admit that I am both humbled & honored to have been nominated.  This was totally unexpected, yet highly appreciated!  I became part of the WEGO family after attending the #HealtheVoices Conference back in April of this year.  WEGO is a mission-driven company connecting healthcare with the experience, skills and insights of Patient Leaders, and I feel blessed to be a part of their family.

Speaking of family, many of the Patient Leaders I have met through both the HealtheVoices Conference & WEGO, are now a special part of my family.  Although many of us suffer from a variety of chronic illnesses, the support among our group is outstanding!  We all understand that although the person who sat next to us at the conference did not look sick, they were, with some hiding it better than others.  There is just some pain that one cannot hide, and shouldn't have to.  There's physical pain, mental pain & emotional pain, and it was palpable in the common area where we met every  morning, but not always noticeable.  This is why it's important to get together, and get to know one another, so we truly know another person better, recognize their pain, and what we can then do to help. 

I would like to take this time to CONGRATULATE all of those Patient Leaders who have been nominated, as well as those who were not.  We all are an integral cog in the wheel that rolls round and round in our fight to be heard.  My nomination does not make me more important, or better,  than someone who was not nominated...we're all in THIS together!!

Once again, I want to thank whoever nominated me, as well as WEGO, for recognizing my passion in life... saving hearts & saving lives, which I will continue to do win or lose.

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Patients Have Power!

June 4, 2018

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.

After being diagnosed with heart disease, I began receiving requests to participate in medical clinical trials.  Having worked in the field of law and law enforcement, the only trials I had ever been involved in were those trials held in a courtroom in front of a judge.  My first thought was NO WAY!  I'm not going to be anyone's "guinea pig!"  However, just out of curiosity, I began researching the importance of participating in clinical trials, and realized they weren't all bad, nor were they just about my heart health issues, but that I could help other women living with heart disease.  So, I searched for a clinical trial that would fall under the category of women and heart disease, finding one being conducted at the Barbara Streisand Cedars Sinai Women's Heart Center (BSCSWHC) in Beverly Hills, CA, regarding microvascular heart disease found in women.  I had the same symptoms that were provided for the disease, and was a woman, so I made the call.

With only a few glitches along the way of the 6-year trial, I continue to participate in, I have had an overall good experience.  I was found to have microvascular heart disease, and was placed on the drug Ranexa, which worked beautifully for my issue of chronic angina (chest pain).  Here's one of the few glitches I ran into however:  When I ran out of the Ranexa, the doctor at the BSCSWHC wrote a prescription for me, but when I went to retrieve the drug, it was, with tax, over $500 a month.  I told the pharmacist "I don't think so!"  I called the office of the clinical trial, and was told that they only provided the initial medication, but after that it was up to our insurance to pay.  I explained that my insurance did not cover the drug as it was not offered as a generic.  They did offer a discount card, which was all of $5.00 off the over $500, but that was like putting a bandaid on an arterial bleed.  I called, and wrote, to the pharmaceutical company who manufactured the drug, regarding my difficulty in obtaining their drug, Ranexa, for a chronic heart-health issue.  It took me eight long months of having to fight, all the while suffering from severe chest pain, but I finally wore them down, before I did, and they began mailing me the drug at no cost, not even a shipping cost.  This lasted for almost two years until I went on Medicaid, who did pay for the full amount of the Ranexa.  My fight in getting the medication I so badly needed, is a great example of being your own best advocate. Just goes to show patients DO have power!

The only other downfall to the clinical trial was the additional cost, due to the location of the clinical trial.  There was the cost of the flight, taxi's, the hotel, which did give me a patient discount, and food...let's just say the food in Beverly Hills is not cheap.  I did run into Rod Stewart and Rachael Hunter at a restaurant I was having dinner at, where they sat right behind me, so all was not lost.

I did write to the BSCSWHC clinical trial department, suggesting that Ranexa be written into the budget portion of any future clinical trials regarding microvascular heart disease. I also suggested that there be inclusion of travel, hotel and food costs as well. These are all issues to be taken under consideration before entering a clinical trial, so that there is a full transparency regarding those incidentals involved in participating.

I learned a lot about clinical trials going through this one, but the most important result of participating in the trial, was that I found a drug that although might not have alleviated the pain in my chest altogether, it did greatly minimize my chest pain, making it all worth it.  Participating in a clinical trial is an individual decision, one to be made by the patient, and the patient alone, as it will be their body put through the necessary testing in order to see if the clinical trial has the end result of a worthy one.

I just happened to be one of the lucky one’s...mine was without a doubt worthy and I would do it all again!

If you want to learn more about clinical trials, go to www.clarahealth.com or check out their Podcast at https://itunes.apple.com/us/podcast/patients-have-power/id1321097377?mt=2 for more information.

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Being a Patient Advocate Shouldn't Kill the Patient

June 4, 2018

When a patient, especially a chronically ill patient, becomes a patient advocate, it shouldn't be at the cost of their own health.  It's very easy to get caught up in wanting to help, but many patient advocates, either through putting unrealistic expectations on themselves, or others applying expectations, end up being drawn into social media, patient advocacy organizations, blogging, and eventually find themselves overwhelmed and burned out.  I should know, as I have been there done that, and have now found myself just recently falling down that slippery slope of wanting to save the world.  Well...I can't, and neither can you.   

If you find yourself, as a patient advocacy going down that same slippery slope, take a few days to yourself, staying off social media, not looking at e-mails, and telling yourself it's okay if you don't reach out to those fifty patients in need that contacted you in the past week.  It's called self-care, and there's nothing selfish about that!  It's like what flight attendants say when instructing the passengers...please place your own oxygen mask on before trying to help others.  Basically, if you're not breathing, you can't help anyone else to breathe.

It's hard to admit, but it's time for me to put my oxygen mask on.  To pull away from all the distractions, and once again get my priorities back in order.  First, I need to concentrate on writing more "paid for" freelance articles regarding Women & Heart Disease and Patient Advocacy, as the income from these articles are a part of my financial responsibilities.  Second, I need to FINISH my book!  I have gotten so far away from working on it, let alone finishing it, due to scattering all my energy about like a dandelion seed head in the wind.  I recently began writing for a funding opportunity that would have enabled me to once again begin a Women & Heart Disease Support Group just to realize the task of just completing the paperwork itself has become daunting to say the least.  So, I have decided to "table" it until next year's funding availability.  One down.

Many of the organizations I have met this year, and might I add wonderful organizations, are reaching out to me to blog for them, write for them, become a part of Instagram and Facebook, both of which I am not utilizing and never have, to better connect with patients.  If I connect any better, I'm going to have to start a commune where we all can live together in one big house.  There are only so many hours in a day, and I refuse to sit in front of my computer in order to do so.  I need...yes, I need, to make sure I get cardio workouts in each and every day, eat healthy, and rest as these are all vital to my health since I will be having open-heart surgery within the near future, and need to be strong.  Putting my oxygen mask on first, again.  Two down.

I love to read & listen to music to relax, and even more so, love to spend time with my family.  In order to make this happen, I cannot be everywhere for everyone else.  On my "good days" I have many adventures  planned with my grandchildren for the summer months ahead while they are out of school, and I don't have to compete with homework and extra-curricular activities.  They are growing up so fast, and will be on their own journey of life in the blink of an eye.  I choose my family.  Three down.

Due to my heart issues, I need at least eight to ten hours of sleep a night, if not more, and this is coming from someone who just three years ago could go on only five hours of sleep.  If I don't sleep, I am guaranteed to experience one of my "bad days" the following day.  I cannot afford to give up any more days than I already have to.  I choose sleep.  Four down.

I am not the only chronically ill patient, who is also an active patient advocate, and who realizes they too are going through many of the same agonizing decisions regarding priorities.  I don't think that anyone cares as deeply about another patient as a patient does.  They understand just how life changing & challenging it can be, thus driving us patient advocates to the brink of exhaustion.  As a chronic patient, you are already giving up so much of life and who you once were.

Patient Advocates:  It just might be time to place the oxygen mask over your own face, before attempting to do so in order to help another...it's not selfish, it self-preservation.

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Memorial Day Weekend

May 26-28, 2018

This weekend, for most, is a weekend of picnics, grilling out, and gathering family & friends together to celebrate.  However, this is only a part of what this weekend truly stands for.

It means remembering those we have lost, and as we remember those we have loved & lost, let us not forget the ultimate sacrifice by those Heroes who gave their lives so that we may live ours!!  God Bless Our Troops & God Bless America...

May Your Memorial Day Weekend be a Fun & Safe One!

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May 24, 2018

Today is #RedNoseDay2018!  What is this silly national day for?  All across America, people have purchased their red noses at their local Walgreen's store for $1 each, and then today, we all go Nose-to-Nose to raise awareness and to fund children in poverty, not to mention that it's a hoot when you have yours on, and people are staring at you wondering why an adult would have a clown's red nose on.  I lost my vanity years ago, so I'm wearing mine today everywhere I go, to encourage a conversation about childhood poverty, and how we must do better for our children...our future!

Tune into NBC for a special night of celebrating Red Nose Day and helping to raise money for those children living in poverty.  Until tonight...GET YOUR RED NOSE ON!!!!!

I thank you & the children thank you :)

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End of Life When It's Not Your Own

May 23, 2018

Do you believe in divine intervention?  I do.  Two days ago, I innocently began a conversation with a woman who was also shopping at a consignment shop where I visit now and then, just to find out that she only had less than one year to live, if that.  She had breast cancer which had metasicized and gone to both her bones & her brain.  Not sure how to react, as all patients are different in how they wish to be perceived and treated...victim, helpless, strong, and/or confident.  I decided that at the very least, a hug was in order, and she received it with joy.

With tears in her eyes, she told me her story, but as she did, it was as if she were telling it for the first time, and reliving the day she received the news that she was going to die.  I told her I still believed in miracles, and would pray that she would be one of the fortunate one's to receive a miracle.  She said she used to believe in miracles, but she had seen the proof of her demise with her own eyes, which left every doubt in her mind that a miracle was coming her way anytime soon.  I explained that I had chronic heart disease, and was in no way comparing my situation to hers, but I could understand how helpless one feels when they have no control over what is happening to their body...to their life.  

To change the subject, I noticed she was buying two pieces of exquisite home decor.  I said, "Good for you for still getting up, getting out, and getting something nice for yourself."  She replied that she had taken $100,000 out of savings, and had every intention of buying her kids and grandkids everything she could, down to the very last penny.  I commented that her children and grandchildren were very lucky to have her in their life, and that these things she was buying for them weren't a consolation prize for her not being here any longer, but memories of the times when she was.

Another customer, who was overhearing the conversation, asked if we might all three pray together outside the shop?  My answer was "yes" exactly at the time the other woman with cancer replied "no."  What to do now, I thought?  The woman with terminal cancer, her eyes tearing up once more, thanked us both, but said she gets way to emotional, and she didn't have time for that...she had more shopping to do.  I wish she would have allowed us to pray with her, but I have to admit, I admired her spunk!  We all three hugged, and the other customer and I stood right there inside the store, where she prayed not only for the woman with terminal cancer, but also for me, and I found myself getting very emotional with tears running down my face, only the tears weren't for me...they were for the woman who was dying.  I, in this case, was the lucky one.

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Tired of Being Tired

May 18, 2018

One thing that patients living with a chronic illness have in common, is always being tired.  Most of us are tired the minute we wake up, even if we have had a good night's sleep.  It takes all we have to just swing our legs over the side of the bed and then stand.  We shuffle into the kitchen for coffee, or bathroom, which ever one is needed most at the time, in the hopes that the fatigue will lessen as the day goes on.  It doesn't.  Some of us are fortunate enough to get what we refer to as a good day, maybe even two in a row if we're lucky, where we have energy...maybe not the energy we had before our diagnosis, but nonetheless, energy.

After 15 years of worsening heart issues, and a diagnosis of Pulmonary Hypertension (PH) affecting the lungs in 2011, I still am fighting the stigma that there must be something else triggering this extreme fatigue and being tired all the time.  I continue to hear in emergency rooms, and even when my own cardiologist is just at a loss for a textbook explanation, "let's go ahead and test for Thyroid issues, Sleep Apnea, and Anemia in order to explain why you're continuing to worsen."  In my mind, isn't the fact that I have worsening chronic heart issues, where I am now bordering on having to have open-heart surgery in the near future enough to explain the fatigue & being tired all the time?  Why do we have to go looking elsewhere when the reason is staring us right in the face?

Having been tested at the beginning of my heart diagnosis  for thyroid issues and sleep apnea, and had neither, I have refused time-and-time and again to have any tests completed in order to chase down a ghost that doesn't exist.  My recent blood tests did prove that I do not have thyroid problems, which felt good to be proven right for a change.  The majority of my heart issues, along with my PH diagnosis, is more than enough to explain my fatigue, weakness and being tired constantly.  The textbook states that my mitral & tricuspid valve regurgitation needs to be at the "severe" level before surgery can be performed, but is presently one level below severe, at the "moderate" level.  As the patient, my common sense asks this question, "wouldn't it be better to do the open-heart surgery now when I'm as healthy as I can be, rather than wait until I get worse, and may then possibly be too weak to have the surgery performed?"  Add to that, that I am the one living this hell, day-in and day-out, leaving me with a quality of life, or lack of, that no one should have to maintain, let alone on a daily basis, when there is the distinct possibility that surgery might help.

It's called the Hippocratic Oath to "do no harm."  It's also called, "if I don't go by the textbook, even though you're not a textbook patient, I could be sued if anything goes wrong."  The Hippocratic Oath goes both ways in my mind...do no harm can mean do not take any action, or it can also mean not taking any action.  There is a very fine line to walk here, and even though I am willing to cross that line, knowing full well what the risks are, not many docs out there that are willing, including mine. 

So, until I find that one cardiac surgeon who is willing to take the same risk I am, then I will just have to settle for being "tired of being tired."

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What I Learned At HealtheVoices2018 Conference

May 5, 2018

I wasn't sure what to expect when attending my first HealtheVoices Conference in Chicago, but I am glad to report that it exceeded my expectations by leaps & bounds!  I was so impressed by how well organized the conference was, the friendliness of those in charge, and their willingness to recognize each and everyone one of us attending as patients, knowing that at times, due to our chronic illness, might feel the need to step away and regroup due to our illness

That was the other beauty of this conference.  Every chronic illness, and more, was represented, which lifted the level of comradery among patients to a new high.  I found myself, someone living with heart disease, talking with others who had diseases ranging from Psoriasis to HIV, many of which I knew nothing about, but knew something about before leaving on that jet plane.  Everywhere I looked, I saw people, not patients.  People who just happened to be handed a raw deal in life, but who never stopped smiling, or who always stopped to lift up another attendee.  Personally, I'd never been to a conference like this one, but knew by time it ended, that I would walk away with new friends, new information about other diseases, new ideas on how to better advocate for others, but more importantly, walking away in the knowledge that I was not alone.

I'm sure many who are reading about a conference with all patient attendees are also picturing a bunch of patients crying nonstop, holding pity parties, and just plain old feeling sorry for themselves.  This couldn't have been farther from the truth.  There were so many smiles the four days I attended, that I felt as if everyone, including staff, had gone to bed sleeping with a coat hanger in their mouth...they just couldn't keep from smiling!  There is power in numbers, and let me just say, that there was so much power at this conference that it was seeping out of the hotel and onto the streets of Chicago.  Sure, there were a few moments of tears among us all, but they were tears of understanding & love for their fellow attendee.

The individual who stands out most of all at the HealtheVoices Conference, as a speaker, was the one & only Kevin Hines.  I have never met anyone like him, and never will.  I won't tell his whole story here, as there is not enough room, but I will tell you this much...Kevin Hines jumped off the Golden Gate Bridge in San Fransisco at the tender age of 19 and lived to tell about it.  Not only does he tell his story, but shares it so that others who are considering suicide may live.  He tells it in a way that is spellbinding.  When Kevin spoke the last day of the conference, he took that whole room of attendees on a roller coaster ride that no one there will ever experience anywhere else, ever again.  Should you want to hear about this amazing man's journey, and of how he travels the world in the hope of saving lives, go to www.kevinhinesstory.com...you won't be sorry.

I will end by first and foremost thanking Caroline Pavis and the HealtheVoices Team of Janssen who worked tirelessly in order to make this Conference happen...I'm applauding you all right now, even though you can't see me - Ha!  Because of Janssen, I was able to attend this conference with my  expenses paid for by Janssen...thank you.  I would also like to thank those partners who helped to make the HealtheVoices a reality:  YouTube, wisdo, healthline, HealthCentral, Twitter, WebMD, WEGOHEALTH, and Facebook.  This conference was definitely a team effort, which resulted in a very successful conference, and I cannot wait until HealtheVoices2019!!

The walkaway message from the HealtheVoices Conference, for me at least, is that none of us is alone...we are ALL in this fight against Chronic Disease together.  I'm so glad & so blessed that I had the privilege of sharing it with all of YOU!!!

**Courage does not always roar.  Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow." (Mary Anne Radmacher)**

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Healthy Lifestyle

April 15, 2018

Being young and healthy can sometimes give us a false sense of security when it comes to our health.  We rarely give aging and health issues a thought.  It won't happen to me.  Breaking News!  Everyone ages, and for most, health issues will rear their ugly head somewhere along the way.

I woke up one day just to find out that I needed reading glasses; I needed more sleep and could no longer could stay out late with friends and still make it to work the next day; I found out that eating some of the foods I loved were keeping me from fitting into some of the clothes I loved.  It all happened in a New York minute as they say although I lived in Ohio.  It was at this point I realized that I needed to change my lifestyle if I were to remain healthy.  Changing one's lifestyle is not an easy task.

Getting reading glasses was easy.  What wasn't easy was changing my sleeping habits, which meant going to bed earlier, saying no to social invites, as well as having to change my diet unless I wanted to change my whole wardrobe.  

"While sleeping requirements vary slightly from person to person, most healthy adults need between seven to nine hours of sleep per night to function at their best." (HelpGuide.org)  Lack of sleep can take a toll on a person's energy, mood, mental capabilities, and their ability to handle stress, which can wreak havoc on one's mental and physical health.  It is imperative for you to know how much sleep your body and mind requires in order to function properly.  

Eating habits are often the hardest to change, as they are acquired from childhood on, and include foods i.e. pizza, ice cream, butter, pastries, eventually alcohol, and worst of all fast food!  Many of our food choices are based on pleasure, which makes making healthier food choices even much more difficult.  Hard day at work, well I deserve to have a couple of drinks.  My two year relationship just fell apart, so if I want to eat a half gallon of my favorite ice cream tonight, then I will.  It's football season, and I can't watch a football game without my beer, chips, and pizza.  All of these excuses to eat improperly will eventually catch up with you however.  Moderation is key.  Everything in moderation.  The importance of maintaining  healthy eating habits will help you maintain a healthier future lifestyle.  Unhealthy eating can lead to diabetes, heart issues, cancer, and many other diseases that can be prevented when making the right food choices.

Exercise goes hand-in-hand with diet.  As children, at least in my day, running, jumping, and skipping were as natural as breathing.  The only time I wasn't physically active was when I was asleep.  Getting children interested in sports at an early age will help develop not only their bodies, but their motivation in the desire to lead an active lifestyle later.  Then, BAM, life gets in the way...jobs, family, illness and much more, keeping you from fitting into your busy schedule a half-hour walk or run, an hour at the gym, or any exercise at all.  Although some believe otherwise, the world will not fall apart if you take an hour or so for exercise, which isn't just for you by the way, but for those you love.  Without exercise, your body will suffer, and so will your family.  

I have, for the most part, conquered the world of sleep I require in order for me to be at my best, as well as eating the proper foods that provide the nutrition I need to make it through the day, and to cognitively communicate with others.  I have also made time for exercise, even if it is only for twenty minutes at a time.  The one thing I haven't conquered however is... "now where did I put those reading glasses?"

My Blog

Drug & Alcohol Addiction

April 14, 2018

No one ever thinks it will happen to them, or to someone  they love.  Yet drug & alcohol addiction takes millions of lives a year, which when looking at the numbers, the chances of you, or a family member, having one or both of these addictions is quite real.  And oddly enough, it's usually the last person you would think of as having an addiction of any type, as they appear to have it all together.

Most people in today's world, put on their happy faces, day-after-day, but are slowly dying inside.  Alcohol and drugs can take that dying feeling away, but can also ultimately, and sadly, result in death.  The key is for someone, rather it be you if the addiction is yours, or someone else close to the person who has the issue, recognizing that it's consuming our/their lives.  It's a tricky business addiction.

Interventions, behavioral support, rehabilitation, are all ways of coping with drug & alcohol addiction, but in the end, it takes the person who is addicted, to WANT to quit...to want their life back.  I've watched people I love turn into people I no longer know.  They have lost homes, cars, jobs, but more importantly, themselves.  The once put together, professional, rising star becomes disheveled, incoherent, lacking in hygiene, can no longer relate to loved ones, and are unable to recognize the difference between reality and fantasy.  This doesn't happen overnight, but over time.  

So, why don't we recognize it sooner.  It's as if the mask we, or others wear, are glued to our faces.  We smile, we laugh, we pretend, both the addict and others.  But the addiction is always lurking underneath it all, and eventually bursts through the mask of deception, for all to see.  I'm not going to spew out statistics, and try and give a lesson on drug and alcohol addiction, as I'm not equipped, or licensed to do so.  However, as someone who has been a witness to the destruction that drugs and alcohol abuse causes, I can talk about it from the outside in.

There is a fine line between reaching out to someone who is addicted, or possibly enabling them.  Reaching out is letting the addict know that you care, and that you are there for them, but with guidelines in place.  Enabling someone, is watching them do it over and over again, and never putting guidelines into place...in other words, tough love is never incorporated into the mix.  Most addicts have to hit bottom before ever even thinking about rising up again...the lucky ones live long enough to rise and conquer...the others, not so much.

If you, or someone you love, is struggling with drug and/or alcohol addiction, please seek out professional help for both them, and for yourself.  Although sobriety is ultimately up to the addict, it's important that family, friends, and others to know proper techniques on how to handle an issue that no one should have to know, but the reality is, addiction is here to stay, and we ALL need to participate in the healing process through love, and yes, even tough love.

National Alcohol & Drug Addiction Hotline: (800) 662-HELP