Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 24, 2013”

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.

No Chocolate Chips In The Cookie Dough

I will apologize for the misleading title.  But I use it to be the most polite way for me to discuss infertility.  Up until recent years, being unable to have children was the hardest thing for me to deal with as a result of the one chemotherapy drug I had been given, Mustragen.

As soon as it had been determined that I would have to go through chemo and Mustragen would be one of the drugs in the chemo cocktail, my oncologist tried, emphasis on tried (really a feeble attempt) to convince me to store sperm for the future.  His warning (again, feeble attempt) was to get it done as soon as possible because time was important to start treatments.  Preliminary testing told me that virity was pretty much non-existent and would not be worth the expense.  At age 22, who was I to argue.  I was not thinking about kids while I am still trying to accept that I have cancer.  But my wife did convince me that it was worth it.

I found a facility in East Orange, New Jersey.  All I had to do was send them my deposit, sounds simple enough.  Except that even pre-9/11 UPS was still suspicious about packages and refused to take my shipment without knowing what the contents were.  Okay, total blank on how to tell a strange man that he was picking up my sperm, ejaculate, baby batter, manjam, spunk, seed, oh I could keep going.  But no, I said they were “hopefully chocolate chips” from my cookie dough.  I almost had him believing me, until he saw the biohazard symbol on the package.  And with that, “I” was off to the cryotank.  Or so I thought.  Testing prior to the freezing led to the company opting not to freeze my donation.  Any future heir would depend on fate, luck, and survival, getting through eight months of a drug not confirmed to cause infertility.

I waited approximately two years from the end of treatments to approach my wife about trying to finally start a family.  I was convinced that any toxins either from the chemo or radiation were gone.  We tried for a few months with no success, so I made the call to my doctor who ordered a sperm count.  Trying to get the deed done at home, and with my wife’s assistance was difficult (unlike any other time when I was much too eager), but to do it right there at the lab, I only had so much time for lunch that day.

The results came back as I was afraid, zero.  I had no sperm at all.  There were no chocolate chips in the cookie dough.  Any chance of a blood heir were gone.  Next to having lost my hair, not being able to have my kids was worse.  It would end up being another year before I brought up alternative ideas with my wife.  Divorce would eventually take care of that issue completely.

But a few years later, married once again, my new wife knew my history.  Any fertility checks would be for her benefit.  We would seek out a donor from a company in Virginia.  But the first testing was going to be on me.  I pointed out to the specialist that “I had no chocolate chips in my cookie dough” and after he got done laughing at me, began to ask questions  that made no sense to me.  It was simple.  I could not have kids.

According to him it was not that simple.  He wanted to check for sperm of course, but also a blood test which would determine if my body was making the right hormones.  Because if my body was not, then that officially would be the end of it.  However, if my body did make the hormones, then it had to be about a blockage.  With the hormones, my body would be making the sperm.  Surgically, something could be corrected.  As usual though, nothing.

But it was amazing to think the possibility might have existed, I would have jumpt at it.  But we did pursue artificial means.  Unfortunately, results were not positive, which then put us in the situation of “we only have so much mony left – we can’t do both, onr or the other.

So, we adopted two girls from China.  Both came from different areas within the province and around two hours apart.  The process of adopting was amazing and will be covered in another post.

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