What Doesn’t Kill You Still Requires a Co-Pay

http---www.pixteller.com-pdata-t-l-166052I never once thought much, if at all, about insurance co-pays until Nicky was born. I went to the Doctor rarely, and a $20 here and a $20 there never broke my bank account.

Then Nicky was born.

Leaving aside the cost of bandages which the insurance refused to pay for (an ungodly amount which drove us into bankruptcy within a year), I remember clearly as if it was yesterday the day that the Doctor gave me referrals for the Physical & Occupational Therapists which he felt Nicky needed to see weekly (twice a week each), and more, including an ENT (Ear, Nose & Throat) Doctor, a local Dermatologist (which I refused to see because he knew nothing about EB), a Hand Therapist, a Speech Therapist and a Plastic Surgeon. And of course the EB specialist at Stanford-a 12 hour drive, with an expensive hotel stay. The hotels in Palo Alto are anything but cheap, even Motel 6 was $99 per night. Months later, in the bankruptcy lawyer’s office, he added all our income and subtracted all our expenses, and was aghast and asked us: “How in the world can you afford to pay for just the $400 co-pays a month for all the Doctors Nicky is seeing, let alone the bandages and everything else!?” That was the point of us even being there. We couldn’t.

Even after my husband had a stroke, they wanted a $35 co-pay each time we went to see the Physical Therapist. The Doctor wanted him to go 3-4 times per week. We couldn’t afford that.

Hence, a MAJOR flaw of the Insurance industry is exposed. Absurd co-pays. But the insurance industry doesn’t see it that way. They want to make sure people don’t “abuse” them, so in turn, they abuse us. You see, copays have only one purpose–to place a financial disincentive in front of you before accessing healthcare. If you’re required to go out-of-pocket and spend a large amount of money on healthcare, you’ll think long and hard before going to a doctor.

This is fine and dandy for someone that is never sick or goes to the Doctor rarely, but for patients that are chronically ill-like Nicky-copays are a gigantic burden. My husband didn’t ask to have a stroke. He was an athlete, always ate well, some genetically abnormally thin artery in the brain caused the stroke, and yet, he’s punished for it anyway, just so some other joe-blow might not “abuse” the insanely profitable insurance companies. Or, how about the co-pays for my son’s g-tube supplies that keep my son alive? He didn’t ask to have RDEB and need a g-tube. $275 a month co-pay it’s absurd. Why bother? I can buy the items outright for cheaper. The disincentive works, for profit bastards! Why can’t insurance companies realize that they make sick people sicker by making their care unaffordable?

Because they don’t care. They want your monthly premium and gloat to the fact that their subscribers are easily deceived or intimidated. There is no reason for them to comply with the rules of the policies they sell because, apparently, morality and responsibility are not part of what you purchase when you buy insurance. Their main responsibility rests with the stockholders & CEOs, and they make tons of money denying or requesting gigantic copays for needed things from the people that pay their premiums.

I only have one piece of advice. Stay Healthy, and God Forbid, if you do get sick, don’t expect the Health Insurance Industry to help you. They are NOT in the business of caring. I learned that the hard way… two bankruptcies later.

Just my 2c from my personal experiences, for what that is worth…

Love and Light,



Nicky’s Life Part 9

This is part 9 of an infinite series of photos I am posting on the Facebook page I have for the book I wrote about my journey raising my son with RDEB (Recessive Dystrophic Epidermolysis Bullosa) called Butterfly Child. I am posting a few images from Nicky’s life and commenting on either what was going on at the time or explaining things about the picture per se.

This “picture commentary” will serve as a companion for anyone that is kind enough to purchase and read my book as my appreciation and thanks.


November 2000 – This photo was taken a week before his 4th birthday. This was right after a bandage change. I took a little break before wrapping his hands, Nicky was still upset from the ordeal, I wanted him to relax a little. I hated inflicting all this pain to my son, as I still do to this day. But what else could I do? Life with EB sucks.

Here’s the link on where to purchase the book if interested:

Love & Light,



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I Can Disagree

http---www.pixteller.com-pdata-t-l-166082I know this is not a popular stance, or maybe it is, but if living with a child (he may be 18 now, but he’s still my child and will always be-and he will always live with me!) with a rare form of Epidermolysis Bullosa has taught me, is that no matter how much a Doctor cares, sometimes he or she can be wrong.

I read a book a few years ago about a local mother whose teenage daughter was diagnosed with a rare form of Brain Cancer, which is almost always incurable and impossible to detect before it becomes deadly. The Doctor did everything he could to treat her and by some miracle it looked as if the Cancer went into remission several months later. She trusted the Doctors blindly. Because Cancer is not exactly rare as a whole, unlike the hoops I had to jump to find information, she put her entire trust in them, so when they told her to wait an “x” amount of months to check for reoccurrence (to see if the cancer showed back up) she didn’t question them. Problem was, that was too long to wait, but she never researched it. If she had, she would have known different, as she readily admits in the book. Weeks before she was due for a checkup, she noticed on Thanksgiving photos that her daughter’s smile was crooked. As soon as she realized this, she took her to the Doctor only to find out that the Cancer not only had come back, but come back viciously, being much larger than it was when it was first diagnosed and too far along to be treated at all. They gave her daughter a few months to live. In the book she describes quite poignantly the last 3 months of her daughter’s life and the decline from a vivacious cheerleader who would have been upset to have her mom see her naked, to needing her mom to hold her in the bathtub. She died in her arms.

After reading this book I became adamant in keeping up what I have been doing all of Nicky’s life. I had to keep researching everything. Nicky’s form of EB was one of the rarest, and as much as I admired and trusted his Doctors, I also knew that I – and Nicky once he was old enough to understand – had the final say in everything. Not two patients are the same, so I had to lean against caution. There are so many different forms of EB with different genetic mutations, each patient can truly be quite different from another, even if diagnosed with the same subform. I knew Nicky best, Nicky knew himself best. Basically I heard what they thought Nicky needed and if we felt it sounded right or reasonable, we went ahead with it. I also don’t think “extreme” caution is warranted at times, such as doing blood-work every month. His numbers rarely change month to month and it’s agonizing for Nicky to get his blood drawn. In other words, at the end of the day, this is Nicky’s life, we make our own decisions. I’ve never been able to trust any Doctor blindly and I don’t plan to start now.

It’s a difficult position to be in to be honest. In some ways, we have no choice but trust the Doctors, but on the other, it would be irresponsible to think any Doctor can possibly know with exact precision and absolute certainty what Nicky needs. To illustrate how unique my child is, you have to think that the subform of EB that he has (Recessive Dystrophic Epidermolysis Bullosa-Hallopeau Siemens subtype) has only been diagnosed in a little over 130 patients in the entire United States. His genetic mutation has only been seen in 1 other patient worldwide. ONE! It feels as if we’re on our own to a large extent. What works for many other patients does not work for Nicky, what works on Nicky does not work on other patients either. It’s a constant endeavor of thinking outside the box, and at times it has been a maddening experience.

It’s good to know that I don’t have to feel guilty about the fact that I CAN disagree, however, I still do. It’s ok. Par for the course, I guess.

Love & Light,



Frankly I am Tired of it All…

ecd48d197baadf93ca1b227454025accI grew up in a country where Health Care is a right, not a privilege.

I grew up in a country where my grandma, who suffered from breast cancer for 13 years, was hospitalized numerous times, endured a double mastectomy, chemo, radiation and more, but was not driven to bankruptcy from it, as all her out of pocket expenses were kept to an absolute minimum.

I grew up in a country where my other grandma’s Doctor went to visit her instead of the other way around because she was unable to leave the house as she could not climb down 4 flights of stairs.

I grew up in a country where my sisters received paid maternity leave.

I grew up in a country where my parent’s medications are completely paid for, as they are for all seniors.

I grew up in a country where my mom’s life was saved by their Medical system and there was no co-pay for her 3-month hospital stay.

Unfortunately, I am not there anymore. I am not in Italy. I am in the United States, where National Health Care is deemed awful, while CEO’s extreme salaries are perfectly acceptable while people go bankrupt.

I went bankrupt twice trying to take care of my son’s NECESSITIES. Insurance companies constantly denied bandages for my son, and did so for the first 12 years of his life (read more about my immense struggles in my book Butterfly Child). Luckily National Rehab/McKesson got involved in 2008 and things turned around for us, but after Health Care Reform was implemented, which I fully support (it means my son will never go without health insurance no matter how old he is and there will be no caps among other things… meaning they will not cancel our policy because taking care of Nicky is deemed “too expensive”), the insurance companies decided that, gosh, our CEOs can’t make millions anymore, we must do something to squeeze more money out of the sick.

So, what do they do? Now all “medical equipment”, which includes G-tube supplies, bandages, wheelchairs etc, come with a whopping 30% co-pay. We are extremely lucky that McKesson, who covers the bandages waves the co-pay for EB families (since it would be in the $thousands every single month-and I am far from exaggerating), but that’s not the case for the g-tube supplies. For me to receive the usual monthly shipment of the items NECESSARY to keep Nicky alive, my co-pay amount is close to $300 a month.

I did the math… if $300 is the 30% co-pay, this means that the total cost of the monthly shipment of 30 g-tube bags, 5 extensions and Nutren 2.0 totals $1,000.


If I go on Amazon.com and purchase the Nutren and the supplies outright, it will cost me as much as my co-pay, a little under $300.

What’s the deal?

How can the supplier get away with making an extra $700 profit over my son’s needed things?

I asked them this over the phone. They are a SUPPLIER. This means they buy things in BULK and should be able to offer CHEAPER prices to their customers, not higher, right?
To this she replied: “Sure, that’s how it works for EVERY OTHER business, but not the medical business”.

It’s crystal clear to me that the PROFITS when it comes to Health Care are outrageous and disgusting.

What’s the point of me even getting these items through the supplier if I can get them from Amazon cheaper? Why give them this outrageous profit? Of course I can’t afford the $300 to begin with, so I have to send a ton of emails a month to places that trade supplies etc. Please, make my life harder than it already is, won’t you? Thanks so much. To say I am frustrated and angry is the understatement of the year.

Insurance Companies + Suppliers = Greed Galore

Honestly… I am tired of it all. I am tired of fighting. I’ve been fighting with the insurance companies now for almost 19 years. I don’t see a light at the end of the tunnel. All I see is darkness.

If anyone has any solutions, please let me know. And… yes, if I could move to Italy right now, I would.

Love and Light,






P.S. That’s me in my imaginary Hawaii vacation taking a break from all this crap.



New Caringbridge Blog and More News!

logo-caringbridge-stacked-facebookI just updated Nicky’s Caringbridge Blog this morning…. Thank you for your support and thank you for allowing me to vent.


The Audiobook of Losing Alex will be available shortly. It’s so exciting for me!

Also, I was able to lower the cost of my book Butterfly Child – A Mother’s Journey​ to $14.97 if purchased through the publisher. I can’t do nothing about the price charged by Amazon or B&N though, sorry. That is totally out of my control. That’s how much money they are making off my book, eghads!

I am working on a “hard cover” version of the book as well, mostly for myself, but I will have it available for anyone that might like that.

Love & Light,



New Giveaway for My Book “Butterfly Child”

My new giveaway for my book “Butterfly Child” is now live!


Enter for a chance to one 1 of 2 Autographed copies! Autographed by both Nicky and I nonetheless!!

Here’s the link! –> https://www.goodreads.com/giveaway/show/150684-butterfly-child

Thank you so much for your support… and if you have already a copy, please consider leaving a review!

Much love <3



Negativity Makes You Sick!

img_7813As Wayne Dyer says, “Some people exude negative energy because of their lifestyle, friends and thinking habits. They could be sending it out all the time or just part of the time. To the degree that you are sensitive and porous, being around these people will actually make you sick.”

As I learned more and more about my mother’s childhood during WWII, it became clear to me that the “men” of the family always treated the women (my grandma, my mom and her sister) as inferiors. This is not by far an Italian “thing” per se, as the women in my father’s family were always treated with high respect, so my father grew up the stellar man that he is, adoring his women. Poor dad, his life has been surrounded by women! He had a mother, 2 sisters, a wife and 3 daughters. Honestly, if he didn’t grow up loving women, he had to learn QUICK!

My mom’s brother, however… oh dear. He learned this way of looking at things from my grandpa, who was the same way. I heard countless stories of his bravados, his superiority complex, his greed most of all. The stories of his greed and disrespect were quite sad, really.
I have to be honest, to this day, I don’t really know the man. I am just going by the stories told to me by my mom and my aunt (who was also my GodMother).
Because I didn’t grow up with the man and his family, I was never close to his children, except for the fact that he would send my mom all the used clothes of his daughter, just a few months older than me. So, not only I wore my older sister hand-me-downs, but my cousin’s as well. Fabulous. Actually I didn’t care when I was younger, except one of my friends (or so-called friend) used to tease me about it endlessly. “So, whose hand-me down you’re wearing today?”. Ugh.

At any rate… I will preface this by saying that the last time I saw my uncle, his wife or his children (a boy and a girl) was in 1978 when my grandpa died. My grandma had died the year before, and as he left the funeral he announced that “his whole family had died”. Nice diss to his sisters, right? Good God.
So… in the early 90s I decided to write my uncle a letter for Christmas. I wanted to say Hello. We are family, aren’t we? Because my letter came from the United States, it was noticed. I never know how my intentions of contacting anyone might be viewed good or bad. Because I moved to another country, there have been some relatives who thought badly of me (isn’t Italy good enough for you?), while some (the majority actually) think it’s mega-cool. However, it’s a fact that I am different, and it gets noticed. My mom told me he started coming around every now and again and even went to my sister’s wedding. Awww…. that’s nice. Let bygones be bygones. She did rely to me that he hadn’t changed a bit though, he was still his cocky self. Oh well.

When I went to Italy in 1998 with Nicky because I was nearing a nervous breakdown, I tried to call both my uncle and my cousin (the girl) to no avail a few times. No answering machine to leave a message either. My mom stated he started keeping his distance again for whatever reason. I was hoping they would come around knowing I was in Italy to see me and meet Nicky, but nobody called or showed up. A month before I left my aunt ran across my cousin, who told her how upset she was that I didn’t reach out to her since I’d been in Italy. According to my aunt, she wasn’t exactly nice about it, either. Fantastic. Didn’t they know the reason I was in Italy? I was nearing a nervous breakdown and she is only thinking of herself? WOW. So, once again, I tried to call her and her dad to no avail. No answer, no answering machine. Just before I left Italy I sent them both a letter, saying how I tried to call numerous times to no avail, how I wished they had tried to contact me since we rarely left home because of how sick Nicky was and how hard it was for me to go anywhere and do anything. Maybe next trip?

I got no reply to either letter, but according to my aunt, my cousin, for whatever reason, was royally pissed. Wait a minute, why was she pissed? She made no effort to contact me, isn’t a relationship of any kind a two-way-street? It’s that toxic ego thing that gets in the way I presume. Maybe I made her feel guilty and she didn’t like it. Whatever.
It’s important for me to note that everyone else in Italy that I wanted to see I saw, wether they contacted me or I contacted them. Friends, cousins, their children, even 2nd cousins. Every single one. I will forever be grateful for everyone’s kindness and compassion.

My mom told me that she never seen or heard from her brother or her nephew/niece ever again, and told me it was because of that letter I sent, even though, for one, it’s been nearly 20 years, and for two, she readily admits (because she read it) that it made no sense to her why or how they took it the wrong way. In the letter I was apologetic, talked about Nicky and his immense health issues etc. Don’t these people have hearts? Ugh. I suppose some relatives are a lost cause. It is what it is. I let it go. I mean, my uncle and neither of his children even went to my aunt’s funeral. Nuff said.

So, now we have Facebook. Life is too short to hold grudges, so when I saw that both my long-lost Italian cousins joined Facebook I requested friendship. One of them (the boy) accepted me, we briefly talked, then at one point he unceremoniously unfriended me for no reason. The other one (the girl) not only completely ignored my messages, but deleted my request. I was hurt, of course. I was the one waving the white flag and I was fired upon anyway. They want no truce to whatever fight we might possibly have (my mom and I still cannot figure what about). Upon further research, I found out that neither of them had friended any of our shared cousins or my sisters, nobody. Were they taught by their father that family is cancer or something? What the hell? I talked to my other cousins and they concurred, they have never had any contact with them, and they had no interest in having a relationship with anyone. Well, at least it isn’t personal. I am not the only one they completely ignore. They ignore any and all family members.

Oh well, I tried, didn’t I? I don’t hold grudges. If they ever message me I will for surely answer. I can’t help but feeling sad for them though. It’s apparent they were raised with a negative, toxic energy, so much so they have never once extended any kind word about my loss of Alex or Nicky’s health struggles. Never. Not even to my mom. And I know for a fact they are aware of both. I have no idea what their lives are like, and I would love to know, but they won’t let anyone in. Maybe it’s good they don’t contact me at this point, their negative energy might not do me much good. Chances are, they never will, and I think after a lot of soul searching, I am OK with that. I don’t need to worry about people who clearly don’t want any family in their life. Maybe it’s my Italian upbringing of “family” being important, that I somehow take this diss personally, even though I know I did nothing to cause this. It’s their loss, isn’t it?

Because of this, I feel extremely lucky that I have a relationship and contact with all my other cousins. I have several. I am even close to many of their children. I am not going to change. I will keep reaching out to family, any family I come across. I now have several 2nd and newly found 3rd cousins that I count as my priceless finds. Maybe it’s my love of genealogy that makes me this way, all I know is that’s just how it is. I truly enjoy the connections.

“Family is not an important thing. It’s everything.” ~Michael J. Fox