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 →

I often post updates on the Facebook Page for my son (https://www.facebook.com/NickyLivingWithEB/) about his struggles and our fights, but the fight over his g-tube lately was one for the books. I have learned over the years that I get more bees with honey, but sometimes insurance companies and the rest of them get me over the edge. That’s where my Italian psychotic bitch shows up, and let me tell you, I love her. Of course, being such a rare disease even in a large population area, there are very few people I can rely on, because there is certainly nobody around here with experience with EB. Normally the best resources are other parents, I have at least one mom on speed-dial who is also my best friend. Even with such support, Epidermolysis Bullosa is very different with each patient, and the care has to be customized through a lot ofRead 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 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 →

I 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 areRead More →

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 with the Pediatrician, she stated to me that the referral had to come from ‘her’ for the Insurance to even ‘look’ at it. Well, I wish someone… anyone really, would have told meRead More →