Please Watch!

Just a quick post!

Jodi Champagne, who is the photographer who documented my son Nicky’s life with Epidermolysis Bullosa, was recently interviewed by an online video magazine and this is the interview.

Get the Book exclusively at BLURB http://www.blurb.com/b/5024440-courage-under-wraps and on iTunes! https://itunes.apple.com/us/book/courage-under-wraps/id803462653?mt=11

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You Know You’re An EB Mom When… & What I Need You To Know

I know there are some out there who think they know what the life of an EB mom is like. Maybe you’re an EB (Epidermolysis Bullosa) mom yourself, and this is your truth, but to others, this may be a surprise, or even a revelation.

Here’s what my life it’s like from my prospective.

You Know You’re An EB mom When… 

  • docWhen you know more than the real doctors do about your child.
  • When you consider internet friends you’ve never met to be some of your best friends.
  • When you think it’s a good day if you don’t see any blood.
  • When you get asked at least once a week if you are a nurse.
  • When your two-year-old knows how to pop blisters.
  • When you pack for a vacation and the first suit case is filled with supplies and equipment.
  • When you have a legitimate pharmacy in your kitchen and the pharmacist knows your name and welcomes you as if it was Cheers (Norm!).
  • When you constantly get asked “How do you do it?”, and you have no clue either.
  • When your neighbors must think you have an online shopping problem from all the boxes of supplies dropped by your door.
  • When you have your insurance ID number memorized.
  • When the secretary, principal and superintendent of your child’s school know you by name.
  • When you find little pieces of Mepitel laying around the house everywhere.
  • When you developed some serious muscles lifting the wheelchair in and out of the trunk.
  • When you realize you could get a job writing appeals letters to the insurance.
  • When your capacity for hope is bigger than anyone else’s, that you know of.
  • When you can hear your child calling you across the house, with dad snoring next to you.
  • When you make sure your purse has some extra gauze, scissors & syringes.
  • When your child’s doctors take orders from you.
  • When you consider a good day one that your child does not ask for pain meds.
  • When the school nurse for your other (healthy) children know who you are.
  • When you have to stop and explain the Medical Terminology you don’t realize you say to people that are unfamiliar with your child’s condition.
  • When you have more medical supplies than a third world country.
  • When you have lost count of the number of hospital stays, surgeries and procedures that your child has had and you don’t really care to know.
  • When every night you sincerely thank Heaven for allowing you to mother this child for one more day. You know the time will come when it will be over, and you don’t want to miss a minute of this wonderful, painful, challenging, inspiring journey. Because you know, better than almost anyone, how life can change in a moment, an instant, and how none of us are guaranteed a tomorrow.

What I Need You To Know

IMG_0022sI don’t need your parenting advice unless I specifically ask you. I’m already reading every book, watching every video, and researching every conference and expert. I have more googling experience than anyone I know. No one wants to know more on how I can help my son more than I do. But I’m maxed out with advice. And although I respect you, I don’t need you to judge me or assume. I need you to support me and believe in me. I’m doing the best I can.

“Support services” seem like fairy tales. Yes, the county and state offer assistance. But navigating the system is like trying to find a needle in a haystack. I’ve spent hours on the phone and online with nothing to show for it for months and years when my son was younger. If it’s available to me, trust me, I got it.

Each day is an effort.  We live one day at a time. I’d love nothing more than to hang out, share cups of coffee or have a drink. I need it. But I have zero margin. Forgive me. Don’t give up on me. I do the best I can. When I have a free day, or just a free morning, you’ll be the first to know.

I don’t always know how to ask for help. It’s tough to know what I need. I enjoy taking care of my son and my family. I adore all of them and would die for any of them. I would love a weekend away with my husband to feel like a wife and a woman, but an EB trained nurse to provide child care is inexistent. I made peace with that. My biggest need is to help doing things I can’t do around the house. It is all.

I worry about dying. I worry about my kids getting sick and dying (yes, even my healthy one), I worry about my husband dying (he had 2 strokes a few years ago) and leaving me alone. I watch people I know grieve the loss of their children and try not to think about it. On the up side, I live life fully and don’t take anything for granted.

Yes, I have lost it on occasion. True, it’s not the the poor lady answering the phone at the insurance company’s fault, if my son’s surgery was refused or that needed supply item not covered, but after dozens of phone calls and no call-backs, I do finally erupt like Mt. Etna. It has happened and I make no apologies.

No two children are exactly alike even in identical twins, so what works for one, does not always work for the other. Before you tell me what I should and should not do, I would appreciate you thinking that I might have done already some research on the subject. It might shock you to find out we most likely already tried whatever you’re suggesting. I can assure you I have logged more internet hours reading about my child’s diagnosis than you have read a sum total of everything you have ever web searched for in the first place. If you could please limit your comments to “I heard of a family using XYZ, I am sure you know more than I ever will, what’s your take on it?” I’ll be very happy to discuss it with you. Honestly!

Finally, If you are an older EB patient and feel the need to assume that just because your mom/dad held you back and told you you could not do things because of your condition and say things like this behind my back: “she thinks she knows best” or think I am the same way as your parent so I should be your punching bag… stop right there. You need help. You need to seek counseling, therapy, perhaps medication or a good sit down talk with your parents. Don’t take it out on me as you have done for the past 15 years. I heard you years and years ago and I have never held my son back and if it wasn’t for me he wouldn’t have done half the things he’s done or gone to half the places he’s gone. Stop assuming all EB parents are the same. We are not. Just like all EB patients are different, so are the parents. All I ask is a little respect. I’ve taken care of Nicky’s every need since he was born 17 years ago. Please allow me the benefit of the doubt that I know what I am doing. THANK YOU.

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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, 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 student that after assisting a bandage change of an EB child, changed careers. I don’t know how I do it everyday, I just do it because I love my child, period.

HEALTH-bankruptcies-copaysBut… I digress. As I said, Nicky’s life and the life of the whole family of an EB child, is severely effected, and this ‘system’ of for-profit insurance is enough to make me vomit.
I read on both of Christopher Reeve books that insurance companies routinely deny claims because… they can. Period. They are FOR PROFIT, they don’t want to pay your claim, their first and foremost responsibility is to the investors. As per Mr. Reeve’s books and his research, only 30% of people denied benefits will appeal it, which means, they can get away with it. Have you tried to fight an insurance company? Good luck. They hire the most expensive lawyers to make sure they win because they don’t want to set a precedent. An EB mom I know fought Medicare to get the Bone Marrow Transplant they needed and they in the end approved it. Do you think she could have fought an Insurance Company to get the BMT if they denied it? Right. Hilarious.

In the book I am writing about my son’s life, I outline my findings talking with people all over the world with kids with the same form of EB as my son, which is the form that needs bandages the most. Virtually any country that had a government system that foots the bill (funded by a payroll deduction like Social Security-they pay no premiums other than that), none of the BS I dealt with existed. None of it. NONE OF IT. You need bandages? You got them. You need a nurse? You got one. Some countries even offered a traveling nurse, so if the child went on vacation anywhere, the nurse went with them. Surgeries? No problem. Some countries even paid for the travel, even if out of their country.

Here I am, in the ‘self-proclaimed’ best country in the world, with the ‘self-proclaimed’ best health care in the world, and I got no bandages, no nurses, every surgery I had to fight for, and wait until you read the run around I got that lasted a year in both occasions to get a throat dilatation as Nicky suffered! I suppose if you tell the people you have the ‘best health care in the world’ you will believe it. But, is it true? I suppose if you are very wealthy it might be, but I will never believe it. The World Health Organization has the US at #37.  My own country of Italy? It’s #2! I believe it too.

Just last year I had two dear friends who believe the hype of the US being #1, told me they would be ‘afraid’ of having any procedure done outside of the US. I laughed. Oh really? When I asked them if they ever LIVED outside of the US, they said ‘no’. Well, I told them, I did, and I have absolutely NO fears. ZERO. I have experience… not only personal, but stories from my own family who currently lives there. I had adenoids taken out as a child. My parents had several surgeries each, as did my sisters and my grandparents and aunts. They never experienced anything being ‘denied’, ever. We never had to ‘wait’ more than you have to wait here, and if they do make you wait is because it’s something minor that ‘can’ wait. The Doctor comes to you if you cannot go to them. There is no ‘drive-through’ deliveries, if any medication is ‘life-saving’ it’s free (no-copay), no huge copays for every day spent at the hospital-my mom stayed at the hospital for a little over a month for complications from a serious infection and zero co-pay. My husband was at the hospital here in the US for his stroke for 5 days and we got a bill for our co-pay for $1,250. In Italy they don’t send you home if they are not 100% sure you’re OK. My friend’s boss in Italy that had a stroke at the same time as my husband got a year of in-home PT with no co-pays. My husband? After three 15 minute sessions we got a bill for $90. Six months later, three 15 minute sessions were $105.  And these visits were not in-home. It’s the co-pays that drove us mostly to bankruptcies. When Nicky was little we spent more than $400 of co-pays each month, without counting the bandages we had to purchase, whose prices were astronomical.

My little advice? Please take your head out of the sand. Stop believing the hype. The US does not have the ‘best health care in the world’. It is such a laugh to me when people think that or have the gulls of saying that to me. If you really think that, please go and live in Europe, Canada, New Zealand, Australia for a while, and you will find out you will much rather pay a payroll deduction and get your health care taken care of, than a huge premium to go through hell dealing with the Insurance Companies. And you can take my word for it. I lived there, I know. Friends from all over the world tell me constantly how they wish we had their system so Nicky’s needs would be taken care. It is what it is. I will continue fighting and spreading the word.

Truly, a system like many other industrialized countries such as the UK or Italy is ideal, and in many of those, one would also be free to buy additional health care services, including additional private insurance. But when you’re told since birth that “national health care” is a disgrace, and you’ve been brainwashed so thoroughly by America’s vastly profitable medical industrial industry, it’s understandable why people are unwilling or unable to open their eyes. If you haven’t read the highly acclaimed article in Time Magazine about the state of Health Care of our country, it’s time you pay more attention to detail and less to the hype.

You can thank me later.

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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 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 me this… oh, 15 months ago?

She put the referral through, which took 2 months to be approved. In early July the company that supplies the power chair came over to assess Nicky’s needs and to measure him. He stated to us that the insurance had only approved an ‘appointment’ to assess Nicky’s needs, not the actual chair. Fantastic. When he left he stated that he was going to submit the request for the chair and ‘at the very latest’ we should have the chair by early September. Early September comes and goes and no word, from anyone, about anything.

By mid September I put a call in to get an ‘update’. A lady called me back to let me know they were still dealing with ‘paperwork’. By early October she stated to me the insurance was still in the process of approving the chair, they were still waiting for forms to be faxed back. A few days before Halloween, low and behold, here’s our chair. Not the chair we asked, not the chair we needed. I specifically requested a chair I could break down and lift myself into the trunk, where the heaviest piece would be less than 30lb. When I called to find out what happened to my ‘light’ chair, he stated to me they could not get one (yet I found a ton of them online) and so that’s what I got. Super. The heaviest piece went from being 60lb to 70lb. Now for sure, I could not lift this thing AT ALL, considering I sprained my wrist and my back lifting the 60lb one. Gee… thanks.

This means, of course, I can only actually use the chair if there is someone that can help me lifting the thing back into the trunk, so, basically when I take Nicky to school. When we go to the hospital I have to chug along the manual chair. I made peace with it. Whatever. It is what it is.

someecardseb3Wait… is there more? There is. Just yesterday, I got a bill from the power chair supplier, yes, 3.5 months AFTER they delivered the chair, stating that MY portion of the bill for the chair is $874! Mind you, we have great insurance, my husband works for the Federal Government, any DME (Durable Medical Equipment) should be FULLY covered by the insurance. Why didn’t they covered the whole bill? Why wasn’t I told IN ADVANCE that there was going to be this enormous c0-pay? Do they really think I am going to pay this? Really? After all they put me through and have put me through the past 17 years? Bankruptcies, washing and re-using without bandages, endless co-pays, denials upon denials, making me wait years to get surgeries and the rest of it? I am so mad right now I could spit nails.

This is but a portion from my book ‘Losing Alex‘, which explains my point of view quite clearly and to the point.

“But insensitive friends and relatives were not the only ones adding insult to injury. On the day of the funeral we received a bill from the hospital for $2,500. Our PPO Insurance had paid only 80% of our bill, 20% was our portion. This was the first time we had ever used our insurance, and so, even though I had known how it all worked, it was still a huge blow and even a surprise when we received this huge bill we could not pay. We immediately changed to an HMO after that. Having never used our insurance, we had no idea how expensive medical care really was. It was a big surprise to say the least. With an HMO you can’t go to any Doctor you want, but to us it didn’t matter that we would have to wait longer or could only go to certain Doctors; at least the bill would mostly get paid for without driving us into a huge debt. Not that it mattered; even with an HMO we would later face bankruptcy over medical bills anyway. We can’t win for losing.
Let me backtrack and see if I can explain my background and my way of seeing things: I grew up in Italy, a country that has had National Health Care since 1947, when the new government was emerging from the rubbles of World War II. After Mussolini was killed, the King of Italy, an old, weak man, upset and embarrassed about the war, abdicated the throne to his son, which in only a few months came to the realization that the population was so upset at the monarchy they demanded a new form of government. Fearing perhaps a revolution, or simply realizing the malcontent, the new King decided to have an election of sort, a national referendum, having people decide if they wanted to continue with the monarchy or have a Republic with a President. When the results came in, a Republic won by a small margin; the Savoia Royal Family was expatriated and representatives of every culture, including Roosevelt’s men and representative of the new Italian Government lent a hand in writing the new Italian constitution, which included such modern and groundbreaking concepts such as Civil Rights, Welfare, Social Security, Right to Vote and Equal Working Rights for Women and yes, National Health Care, all in 1947.
Growing up in Italy I never heard anyone uttering the words “Medical Bills” let alone knowing anyone who had a Bankruptcy over Medical Bills (as I would have later on) because it simply does not happen. In Italy, you’re not forced to keep a job you don’t like for fear of losing your Medical Insurance; there is no Medical Insurance you have to get. If you’re sick, you’re taken care of, if you need a prescription you get it for cheap and you never wonder if you can afford to go the Emergency Room; all of this is simply not part of the Vocabulary. There were instances when, as a youngster, I was really sick and the Doctor would come to our house for a visit, a God sent, since my mom couldn’t drive. My grandmother, too weak to walk down two flights of stairs, always had her Doctor come and visit her, not the other way around. As a child, I had my adenoids taken out, my older sister was hospitalized for a severe tonsil problem, my little sister had appendicitis (taken out by emergency), my parents both had to have surgeries and my grandma went through years of chemotherapy, hospital stays and even surgeries, all without ever hearing the words “co-pay”, “premiums” or “bills”. Yes, it’s true, the taxes are higher, there is a actually a payroll tax that pays just for that, but imagine the freedom of not needing to worry about losing your job, or wondering if you can afford to go to the Doctor, let alone how you’re going to pay premiums, because there are none. Imagine people being free to go to the Doctor when they first get the symptoms, rather than going much later, when it’s more costly to treat and life threatening. In Italy, Health Care is a right, written into Article 32 of the constitution in 1947. Most modern countries have the same. I know and realize the system is not perfect by any means, but it works and I know this because I lived there and I saw it with my own two eyes and experienced it on my own skin.
butterfly_child_cover-copysmall2So… suddenly, after I was slapped in the face by life, I was slapped in the face by the US Medical Insurance industry. This is the first time that I wished I was in Italy and wondered why I left to begin with, and it would not be my last. I do and will always love the United States, and I will until the day I die, I wouldn’t have moved here if I didn’t, but this particular issue was one that started it all for me, one that I was completely unaware of until this particular moment in my life. This would unfortunately be only the first morsel of a gigantic “Medical Insurance” bitter cake I would be forced to eat and swallow for years to come. I cannot wait to tell that story.”

That story, of course, will be part of the book I am currently writing, entitled ‘Butterfly Child‘.  I was initially going to self-publish this book and release it by the end of the year, but after reading similar books by other parents battling with Tay-Sachs disease, Down Syndrome, Autism and the like, I honestly feel my story it’s too important not to seek out a legitimate publisher, one that could spread the word about EB, how these children need a cure, badly, how this orphan disease falls through the cracks in the supposedly richest country in the world. How is it that a nurse was always denied to me, bandages denied to me, respite denied to me, how is it that I can’t get ahead no matter how much I try?

I want my book to make a difference. I know I am only one person, but perhaps, with some support, I can get the right people involved in this project. Anyone knows anyone? Please contact me on my FB page… if you do. I NEED YOUR HELP!!!

Thank You from the bottom of my heart….

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My Boys, Reflections & Realities

I came across this picture of Nicky the other day while transferring photos from one computer to another and I had to stop and admire it. This is Nicky, he was 2.5 years old, with a needle in his hand, poking his own blood blister on his wrist. sk_nicky1Just the fact that I could trust Nicky to handle a needle at that age, when I could not dream of giving a needle to my healthy 10 year old today, speaks volumes at the amount of grace, patience & maturity Nicky had to have at such young age.

But that is only the tip of the iceberg as far as he’s concerned. Nicky adds a certain family dynamic that is hard to explain or even illustrate. In a way, Nicky is shy, withdrawn. He does not speak much and it is hard to have a conversation with him just because I have to get the pliers to get words out of him. However, when he does speak, watch out. He tells it like it is. “No offense” he says at the end of a sentence if he thinks I might be upset (he has never once offended me). If he gets upset though, he can’t speak at all, his face gets all red, and if he wants to tell me what’s going on or explain to me in more details what he’s upset about, he has to write me a ‘note’ on my phone or iPad. For being a kid that hates to write, he’s quite eloquent that way.

skblogNicky is hardly ever angry, actually, I can’t remember the last time he was ‘mad’. The only time he looks mad and upset it’s either during bandage changes or if his little brother drives him crazy. Connor can be quite the pill, he plays me like a violin and has his daddy wrapped around his little finger, but he also talks and talks and talks, we often joke that he started speaking ‘late’ but when he started he never stopped! He’s always so full of questions, he’s a very curious little boy. These two are very close, they are best pals, but I try not to make Connor Nicky’s servant, although often he does it without complaining. He’s very happy to get Nicky his water, a blanket or whatever he needs, but I don’t want his childhood to be one that he will resent, rather one that he will look back upon and know that from his brother he learned compassion, to love without conditions, and I hope that when he’s an adult he will never feel the need to take care of his brother like many siblings of special need children do. I want him to help Nicky, but out of his own will, not out of duty. I want him to want to do it or not do it at all.

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The truth is, and I am not even sure how to say this, but by the time Connor is old enough and out of College, Nicky will either be partly/wholly cured or no longer with us. I don’t want to be a Debby Downer, but I know what reality is, I do have hope, but I learned long ago to take it all one day at a time. I don’t know what tomorrow may bring. I am keeping myself as healthy as I can so I can take care of Nicky as long as humanly possible, and I do hope it is for a very long time… so long that eventually he’ll be able to take care of himself. For now, all I can do is take each day as it comes, knowing, as this quote states, that someway, somehow, things will work out, maybe not how I would like them to be, just how they are meant to be,

Thank You for your continuous support, the endless prayers and to keep our spirits and hopes alive,

Love and Light,

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