Mental Struggles

Every three months I have an appointment with my psychiatrist and I strangely look forward to it. He is not a therapist per se, we do talk about my mental struggles, but I do not spend an hour blabbing about my problems. I say “strangely” because before my appointment I am forced to do an inner assessment of why I am feeling low lately so I can accurately explain myself to him. I am not used to explore my inner feelings, I have to force myself to. I am not used to try to figure out why something bothers me, but one thing is for sure, it does help to put things into perspective and get an outsider’sRead More

In the Business of Caring?

I grew up in Italy, so this whole thing about needing “Medical Insurance” is still a bit baffling to me, even though I’ve lived here 2/3 of my life. The more I learn about Health Care in Italy the more I like it. I can’t help but compare what Insurance Companies put me through, forcing me to declare bankruptcy twice over medical bills they refused to pay, with similar circumstances from friends and family in the old continent. My cousin’s husband who lives in my hometown in Italy, for example, had a stroke late last year. By all accounts it was even worse than what my husband suffered several years ago. But instead of receiving automatic continuous PhysicalRead More

The Plight of Orphan Conditions

Just recently a huge gift was bestowed upon me. The gift of no co-pays for Nicky’s supplies. This is no $20 co-pay, this should have been in the hundreds, even thousands (supplies come with a 30% co-pay), making taking care of Nicky almost impossible to afford. This was all in all a “new” issue I was dealing with. Since the ACA passed, insurance companies have been looking for ways to make more money, since their priorities lies with the stockholders and not the sick, so as of a couple of years ago supplies went from 100% covered to only 70%. Because, as we know, the sick are wealthy. Yes, that is sarcasm. While the supplier waved the co-paysRead More

Frankly I am Tired of it All…

I 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 grewRead More

You Can Thank Me Later

On my last post I talked about Insurance Companies and the hell they put me through the past 17+ years. I also explained why they bother me so much-the endless bills they do not pay or refuse to pay when they should, my two bankruptcies, and the simple fact that they are making our life harder than it already is. Having a medically fragile child is not for the meek, you have to be prepared to do and fight things on a normal basis that make you more a nurse than a caring, loving mother. We have to do things no mother should have to do. All I should do is hug my child, soothe, explain and love,Read More

Let Me Tell Thee How Much I Loathe Medical Insurance Companies

Two years ago it became clear that Nicky’s power chair was on its last leg. The chair was 6 years old and it was literally falling apart. Not only that, Nicky was 9 when he got it, and he was now 15, he barely fit into the thing anymore. The Physical Therapy dept at CHLA started writing referrals to the Insurance company to get a new chair. Nothing happened. Several letters later, several appointments for measurements later, several phone calls to the insurance and a year and a half later, there was still no response, no approval, no denial, no nothing. It was like they were ignoring the whole thing. Last April (2013) at the yearly appointment withRead More

Opening Eyes & Hearts

One of the most frustrating parts of having a child with EB is that I often felt as if I was abandoned. Not only abandoned because I had nobody to help me with his extreme needs, but abandoned by society in general. So much is available for families that have children with more common conditions, but I always felt EB felt through the cracks due to the rarity of the disorder. This excerpt from my upcoming book ‘Butterfly Child‘, due out in late 2014, speaks to this sentiment…      One of the other EB moms I knew called me one day to ask me a question I never once thought of: “Did your Insurance, Social Services orRead More

Should it bother me?

I have to admit it. Through my trials of the past nearly 18 years, not much seems to bother me anymore. I am amazed at the thick skin (pun intended) I’ve developed over the years. I chuckle daily at the things people complain about on Facebook or other social networks, and I know I learned a lot and have come a long way from the teenage girl whose ego was easily bruised. I strive to be the gal who does not care about what people think, what people do, how people behave, but when it comes to my children, some things I just can’t shrug off so easily. But maybe, when it comes to my children, it shouldRead More

What is the American Dream anyway?

“Everywhere around the world, they are coming to America”… that’s the words of a song  by Neil Diamond which always pulled at my heartstrings. America always enticed me, and while I never planned to live here per se, the idea of adventure, success and fun was always synonymous to it. I grew up in Europe, Italy to be exact. I never realized how different growing up there was until I now compare my son’s childhood in the US with my nieces and nephew back in Italy. There is no comparison. Apples and Oranges.  I can’t even say that one is better than the other, it all depends on what is important to you. Having lived in both places, I haveRead More

Ways to go…

I was adding a few things to the book I am currently writing about Nicky’s life, which is nowhere near done and I was stunned when I realized I already wrote almost 200 pages, and I have 10+ more years of stories to go. These are not 200 pages filled with overly descriptive anecdotes either, no mist over the window overlooking a tree with owls that made me realize the secret of life, ha ha, these are 200 pages of hard hitting reality, love without measure and life with EB. I wonder how thick this book going to get as I keep remembering things and add life stories beyond 2002. I love to write, it’s almost  part of me toRead More

Worth Reposting

In late October 2010, a little over a year ago, I put my heart on a sleeve and vented. My opinions are not those of a politician I chose to believe, or handed down by a parent, since my parents never talked about American Politics and I had no idea how my dad felt about politics until recently; my parents live in Italy BTW. My opinion does not come from a TV channel, newsprogram or a newspaper I chose to believe. My views and opinions come from my PERSONAL experiences. It’s truly as simple as that. My life. Period. I remember vividly when Clinton became president. I couldn’t yet vote, but I wasn’t happy. I had been aRead More