Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Bullying”

What Does Fibromyalgia Look Like?


On April 16, 2008, my wife’s life as she knew it was turned upside down.  Just the day before she had been told by me, that the cardiologist that I had just seen, wanted to do a catheterization on me, and put a couple of stints to repair some blockages that he was certain I had.  But the next day was totally different.  Following the outpatient procedure, and fully expecting to be able to take me home, instead, the cardiologist gave her the news.  The damage was far worse than anticipated and was due to radiation treatments that I had gone through eighteen or so years before.  I was so bad, that I was set up the next morning, less than 20 hours later.  Her husband was on the verge of having a major and fatal heart attack.  You can imagine the emotions that ran through her at that moment.  You can also imagine the stress that had been created as there were two daughters who also needed to be cared for.

Unfortunately, this would be just the beginning.  While prospects were good for recovery, it was still going to be difficult, because I am not a “take it easy” kind of guy and now all I wanted to do was get back on my feet and back into things.  But now we were also aware, that other things were going to become a possibility from my treatments, which further down the line, more than a dozen things have been discovered, and are now being managed.  But back to right after my heart surgery.

Wendy stays at home with me for two more weeks while I recover.  That made 3 weeks that our co-workers were able to talk smack about either one of us.  Okay, it was about her because how could anyone kick a guy when he was down because of heart surgery?  Quick answer, in spite of union brotherhood/sisterhood, my co-workers do not know one characteristic of a union as they roll by “stab in the back, then in the heart.”  So when Wendy returns to work she is confronted later in the day, about the parking space she parked in that morning.  It seems that this co-worker was uspet at not having the spot as she had for the three weeks that Wendy had been gone.  So for that, they made Wendy out to be a malicious bitch just out to cause trouble.  Forget the fact that she is still dealing with a very sick husband who almost died.  Within a week, Wendy had the entire department, including supervisors after her, for any size infraction, true or false.

When I found out, to say I was angry because I had to call in to work about this, is an understatement.  But this was just the beginning of an all out plan to get Wendy fired.  Soon friends who had visited with us and vacationed with us, had turned their backs on Wendy, some to be malicious, some not to get caught in the crossfire.  The stress level at work, between Wendy and I escalated in amount and frequency.

In November of 2008, I rushed Wendy to the ER believeing that Wendy was in horrible pulmonary distress.  We lost many months while diagnoses ranged from asthma to lupus, and who knows what else.  Drug after drug had been given to her, producing no results.  So with her work record and reputation not improving, the hostile work environment was continuing to worsen as accusations of Wendy being seen and looking okay combing back to work.

We are at a crossroad right now.  Assuming Wendy will not be able to return to work with her final diagnosis of fibromyalghia which took over 4 years to get to, she will not have FMLA to protect her, and undoubtedly take advantage of their attendance policy and she will be fired.  I’m not sure what cmoes next,  I just want my wife to function again.  I don’t care if she can’t work, but I need her to function.

Fibromyalgia is a cyclic disease, once you get on the bike, you ride and ride and ride but cannot get off.  You have the pain, lose sleep, lack of sleep causes body breakdowns, causing more pain and repeat.

What I do know at this point, our co-workers know everything going on with Wendy.  They have not visited with her, and have not asked me, but they know everything about her.  When the dust of that sarcasm clears, the cruelty and harrassment will go up 100%, and so will the stress, and what it does to us at home, making her FM even worse.  It is just a brutal cycle.

Wendy does have an occasional good day, seen smiling, getting coffee at Dunkin’ Donuts on her way home after dropping me off at work.  A supervisor behind her is who spotted her and ran back to her like they worked for TMZ and even more damage was done. 

So here are the rules from our employer whether you are suffering from Fibromyalgia, heart surgery, the flu, whatever:

1.     no smiling

2.    no going into a pharmacy especially being seen near the pharmacy

3.    no walking, because then she walk, this is a typical therapy drill

4.   she is not allowed to have a good day

The list goes on, but I am going to end it here.

Reality TV Bites! My Pitch To The Major Networks


Shows based on reality.  Oh, the humanity!
“You’re gonna lose your mind watchin’ TV” Oh, and “Fear Factor” I watched maybe a half hour after that, felt like I needed a long shower
Network execs with naked ambitions, “Next week on FOX, watch lions eat Christians”.  Leech-covered grub-eatin’ fools on “Survivor”
I love shows with or without a plot I’ll stare ’til my legs are numb, my eyes bloodshot
Because I only have got One brain to rot
I’m gonna spend my life watching television a lot

These lyrics are from Wierd Al Yankovic’s song parody “Couch Potato”.  I have intentionally only copied the references to reality television.  You can read the complete lyrics on any web page.  Late last year I attended a cancer survivor event.  One of the speakers was a head honcho at Memorial Sloan Kettering Cancer Center.  When he finally began speaking he mentioned the uncomfortable feeling he got referring to former cancer patients as “survivors”.  Survivor is often a term we associate with war, accidents, natural disasters.  I am paraphrasing, but that is the gist of what he said.  I believe he was attributing it to the duration of the event and the effects following it.  I would go one step further as far as using the word survivor, not just for cancer patients, but those who have survived war, disasters, and other tragic events.  I believe the word “survivor” has been cheapened by “reality TV”.

I will admit that I do watch an occasional reality show, but it is very rare.  The whole concept of someone volunteering to be put in precarious positions, be paid for it, and referring to the victor as a survivor is insulting and demeaning to those who have had no choice, who are not given a financial opportunity to recover (or in the TV world, profit from their effort or gain their fifteen minutes of fame).

Seriously, take a look around your waiting room.  In walks your doctor with a TV producer, and about a dozen people whom you do not recognize.  Since you do not know any of the visitors it is up to the doctor to introduce to you, what is about to happen.

“I have been approached by this major network about a new reality show about getting through a battle with cancer.  These people have all volunteered to be given the same cancer, and the same treatments.  There will be challenges where they will be given the opportunity for extra treatments, or denied treatments.  Competitions will determine what order people would receive their treatments.  Losing challenges would also carry consequences.  Every week, one contestant will be sent home by vote from the real patients who are not here for the TV show, where they will then have to find their own treatment plan.  The last one standing, or surviving, will be the winner of a million dollars.  As participants as observers, we will make sure that you get a year’s supply of TV guides to make sure you know just when the show is airing.  Sound good?”

Of course this scenario is prerposterous, and offensive.  But many times, when I watch shows like Survivor, Big Brother, Fear Factor, and now all these sub-class shows like Redneck Vacations and a show mocking an overweight child because her parents are too stupid to realize the damage they are causing, I do not want to be held in the same descriptive sense of the word survivor.  I have been through too much for my journey to be so understated just because it did not appear on some remote island.  My psychological battles are far worse than a group of spoiled egotistical jerks who believe the only way to get by is by being deceiptful, and disloyal.

We cancer patients are kind of funny with the labels that healthy people, and sometimes other cancer patients like to place on us.  Survivor.  Warrior.  And I am not going to rip on people who watch the reality shows.  But just once, I would like to see a major network produce a series and stick with it, about true survivors, not volunteers, we were forced into our situations.  We were not made into millionaires because of it, but there are literally millions of us, over twelve million.  Many of us have additional issues, and most do not know why.  Stand Up 2 Cancer is doing great by drawing attention to supporting research to find new cures and support, but we need something to show that people do live long lives in spite of their greatest challenge in life.  A walk around a track at your local Relay For Life is lined with luminairies with the names of people who have faced cancer and beaten it.  I would like to see a Nationally televised Relay For Life with at least half of the program dedicated to survivors and perhaps expanding the Stand Up 2 Cancer to include the various issues that survivors face after treatments from psychological to medical.  Just once, I would like to see a real reality show that is not based on backstabbing, lying, and degrading.  I would like to see true success and show people how success is really celebrated and appreciated.

Stay Home If You Are Sick? What If You Cannot?


Your child has a fever or vomits in school, you get the phone call to come and pick the child up.  Even when there is only ten minutes left to go in the day.  Last year our school district came up with some goofy policy in dealing with lice.  To be honest, I am not sure who does the actual determination as far as contamination when it comes to eggs and nits, but once again, the kids get sent home.  For the child, it is no big deal.  If there is homework missed, it would probably go home with a classmate if it was important, or a test would just be made up when the child returned to school.

But as adults we are expected to endure much more.  Not only are we expected to get to work, crawl into work, or be rolled on a stretcher into work, but we are expected to be exposed to all kinds of germs, bacteria, and viruses.  Currently, we are in the midst of a major flu outbreak.  It all depends on which media source you want to listen to, to determine just how bad the outbreak is every year.  A few years ago, it was the bird flu that was concerning everyone.  Last year swine flu acually led to my company having an attendance policy just for that outbreak.

If an employee had any sniffle, the company wanted you to make the decision to stay home.  Of course, we had a strict attendance policy that did not pay the employee for the first three days out sick.  But if you were sent home from work by health services suspected of swine flu, you were not allowed to return to work for seven days.  So the employer sends you home at your expense for three days and then you get paid for the remaining four.  The kicker is that the reprimand system kicks in at five days.  Nine days out you are suspended for five days (that is right, you are suspended five days for inconveniencing your employer if you are sick nine days in a year).  But at day twelve, potentially you will be fired, for being sick.

Consider this, whether paid sick time or unpaid, absenteeism is a huge expense for a company to absorb.  It is definitely worse if the employer has to pay the absent empoyee to do nothing at home, while expecting those who have come into work to make up the lost time, often without any extra pay.  So it becomes an accepted and tolerated procedure, reprimand the employee for not coming in to work, whether withholding pay, or by punitive actions such as suspensions and terminations.  The ironic thing is that this usually has no impact on the person who abuses any attendance system but has exactly the opposite effect on the employee with the legitimate illness.

It is normally the employee with the legitimate illness who is not used to getting a paycheck deducted with sick time.  Often times those employees live on budgets, so the stress of not missing pay from the check has the potential to make things worse.  So the reaction is for the employee with the legitimate illness to force themselves to work.  The employee is already at risk because of the depeleted immune system, but with physical exertion and exhaustion, the chances of recovery or worse, the illness becoming more dangerous,  has to be recognized at least as unfair. 

And if there is no concern for the legitimately ill employee, there should be even more disappointment in the concern for the other workers who are not contaminated with whatever bug the sick employee is dealing with.  So while the media spreads global fear of an Armageddon-like epidimic of flu, employers with their absentee policies actually contribute to the spreading of illnesses like the flu, strep throat, and other contagious diseases. 

If you are watching the bouncing ball, one sick person is bad, but risking several sick people is okay.  The cost of lost labor for one employee is bad, several employees out is very bad from a lost productivity point of view.  But that is exactly what employers create.

There is one final critical thing to be considered.  And it something no one, sick employee or greedy employer does not even consider, because it is something that neither can see.  There are people in the world, and especially in the work force who have what is called a compromised immune system.  A compromised immune system can be depressed supressed, compromised, and a few other descript conditions.  And unless one of those less unfortunate patients speak up, there is no way to know.

I am one of those who have a compromised immune systems.  I was not born this way, I was made that way.As part of the staging process of my Hodgkin’s Disease and determining the need for chemotherapy or radiation or both, a procedure called a laparotomy was performed.  One of the things done during this surgery was removal of the spleen to see if the organ is riddled with Hodgkin’s.  It was considered “no big deal” as I “didn’t really need a spleen” as others do without.  It was actually quite commone, not just for staging cancer, but in many forms of trauma, the spleen was removed.  This creates a condition for a patient being declared “asplenic”.

In recent times, it has been realized just how important the spleen is to the human being.  The spleen kickstarts your immune system and keeps it fighting whatever is fighting against your body.  For example, have a cold?  Your spleen helps to fight it.  Scrape and cut your knee?  The spleen helps to fight infection.  Having a heart attack?  The spleen helps to recover.  Simply put, no spleen, the chances of your fighting an infection or surviving are made that more difficult.  To help give me a chance, over the last several years, I had been given multiple pneumovax and menningicoccal vaccines.  My body does not respond in antibody production like it needs to which means that if you have a cold, I have an even bigger chance of coming down with it.  In spite of my children being innoculated for chicken pox, if there is a child at school who was not vaccinated, comes down with chicken pox, my daughters could carry it home.  Strep?  Increased chance.  Twice last year (within nine months to be exact), I was taken to the emergency room to be diagnosed with two different pneumonias, one case being septic, the other double.  But both types were determined to be “Community Acquired” which means I got it from someone else.  Someone else who was sick and either came to work, came to church, or some other public passing, created a near-fatal situation for me.  No, I know it was not on purpose, because they did not know I was at an increased risk or surely they would have avoided me.

My comments are more than just pushing for hand sanitizer every two feet or training everyone to cough into their elbows.  It is about awareness and consideration.  The flu might not be fatal for the majority of people, but for some, there is an increased risk.  Unlike last year when my employer forced a swine flu absence policy, it does not show any signs of improving preventive care today.

Remember Jim Henson, creator of the muppets?  Died of complications of strep, originally thought t o be pneumonia.  He was also asplenic.  In spite of agressive treatments used on asplenic patients, the creator of Kermit the Frog passed away at the age of 53 after two cardiac arrests.

I should not have to state publicly that I do not want to die, and that I do not want to catch what someone has.  It is common sense how to prevent the spread of things like colds and flu, clean hands, and staying home when you are sick.  I only wish employers realized that people do get legitimately sick and while there are those who play the system, those who do not, should not have to pay with their lives.

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