Nicky’s dad sent me a text from the hospital where Nicky is recovered last night and told me that the case worker came in to tell him that the insurances are covering everything 100%. I almost fell flat on my face. These past couple of months have been truly hard on Nicky, and for our whole family as well. I lost count of all the Emergency Rooms and Doctors we have seen lately, all due to issues arising from his g-tube. We saw local Doctors, Doctors at CHLA and Stanford, all who did little to nothing for him. Finally, out of desperation, Nicky ended up at Lucile Salter Packard Children Hospital, in the care of a team. There is so much to say about that, and I will probably write a complete blog when all is resolved, but what sticks in my mind today is the issue of the insuranceRead More →

Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. We spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and we measure milestones with wound healing and high red cell counts. One would think that after 20 years and 2 bankruptcies I would be used to this hellhole of a place where Insurance companies dictate the life and death of people, but, sorry, it still makes me mad. Quiet people live internally a lot. They write their feelings out. They also learn to listen, which is a wonderful quality. Look, I was not happy with the election results, but I care about my health too much to spend my time badmouthing, name calling or insulting others who don’t think theyRead More →

I’ve been lucky. I come from a very loving family. My husband is amazing and a great dad. Even my ex is a truly caring dad. My kids are the most amazing, loving, compassionate people. I am so proud of the young men they have become. I like to think I have great taste in friends, as some have turned out to be impeccable human beings, but the past few years, it seems as if hate is everywhere. I don’t remember this kind of vitriol before then, perhaps the advent of social media is enhancing it, but more and more, people are angry, hateful, selfish, hypocritical, self righteous and judgemental. I am a blocker. I may not unfriend people whose posts are negative, insulting or toxic, but I do unfollow, mute, or whatever social media’s answer is to “not see” the hate. Every now and again someone deeply disappoints me.Read More →

I was watching “The View” this morning and it got me real upset. Megan McCain, who has no children, let alone sick children, can spew out her superior “Pro-Life” views (It’s “Murder”” she screams, over and over again), but what begs the question is WHY her party consistently and persistently doesn’t care about children when they get out of the womb, you know, those that are already here and suffering. I’ve made no secret of the fact that I’ve had TWO bankruptcies to try to take care of my child, who was born with Epidermolysis Bullosa, and I ALWAYS had insurance. Him being born with EB is not a choice I made, it’s what life handed me. When Nicky was a baby he cried for hours in pain, even if I medicated him, while standing over him trying to change his wound bandages. The first time he slept through theRead More →

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’s POV about it. Today, for example, I realized I felt low because in a way, my life is on a “repeat” button. Day after day, week after week, year after year, IRead More →

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 Physical Therapy and help since his stroke, which enabled him to already being able to walk and becoming better and stronger within 4 months with no co-pays, my husband was left to healRead More →

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-pays until it could no longer due to new regulations, the g-tube supplier didn’t, leaving me to purchase Nicky’s food and g-tube supplies off eBay. Luckily, and I don’t say this lightly, aRead More →

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 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 theirRead More →

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, but on top of that, I have to change gauze on wounds so nasty they would make any medical student gasp. I remember, as a matter of fact, one particular medical studentRead More →