Yes, it's THAT bad. Period.

On our way home from our umpteenth FAILED appointment to see the Phisical Terapist (oh man... it's a long story and simply a complete joke... will explain further down in this blog) my husband said to me:"Until I had my strokes I had NO idea how bad the 'Health Insurance' system of this country is". Isn't that how most people are? Until they feel it on their OWN skin, somehow, everything seems just peachy, anybody that complains are just 'whiners'. Right?

I had no idea either on how bad the Health Insurance system of the US was either, my first taste was after Alex was stillborn at full term. At the time we had a PPO (where the insurance pays 80% of the total bill), we came home from the funeral and in the mail there was a bill for $2,500. Yes, you read that correctly. We had just BURIED our son and now we had to pay $2,500 for a dead baby, which was 20% of the cost incurred in the hospital and for the prenatal care. Lovely, no? Talk about kicking and slapping somebody when they are down. Being down is an understatement by the way, I was downright destroyed.

But... that was only a morsel compared what we would experience after Nicky was born. I remember vividly , meeting with the dermatologist and him teaching me how to change Nicky's bandages. Where would I get the bandages, I asked? Oh, he said, the insurance has already approved 4 visits with the Nurse and she'll bring the bandages to you. She did, and that was great, but after that? We were on our own. We scoured medical stores and got some bandages donated, the Nurse had brought us tons of extras, but they were extremely expensive and it was clear from the beginning that we would have to wash, re-roll and re-use because the insurance flatly REFUSED to pay for them. Our income had already been slashed in half since I had to quit my job to take care of our son, it looked already as if we were going to lose the house and we had to sell one of our cars, how on earth could we afford $1,000 worth of bandages EVERY MONTH?  "They are an over the counter item" was the insurance's excuse. Right. It's ONE thing to buy bandages for a burn that is temporary and it's going to heal, it's a completely DIFFERENT matter when there are chronic, ongoing wounds. The insurance and everyone that worked there could not care less. Appeals were denied over and over again.

Although the bandages situation was our biggest problem, that was not the only one. When Nicky was 4 months old we had an appointment with the dermatologist that diagnosed him and we had a million questions for him, and he had very few answers. Who could blame him? RDEB is a one-in-a-million condition, it's not like a dermatologist sees that many patients with it, even though he was "the" expert in the state of Arizona (and I called EVERY pediatric dermatologist in Arizona, so I know that to be true). He told us we had to go to Stanford to get our answers. Stanford has an 'EB' clinic once a month where they see patients, so we got a referral for them. Surprise surprise... it was DENIED by the Insurance!! What?? When I called, the snooty lady asked me why I had to take him to Stanford, if there wasn't "another" Doctor in the state that I could take him to!! Right!!! Did I mention RDEB is a one-in-a-million condition and we had gotten the referral to Stanford from the ONLY pediatric dermatologist that knew anything about EB? It took 5 months worth of calls and pleas, but finally we were able to take Nicky to Stanford. At this point Nicky was 9 months old and the answers we got came a bit too late. Some of this information would have been CRUCIAL for us to have when he was born. For example, who knew about the hands contracting? I had read someting about 'webbing' but the contracting was news to me. Lo and behold, Nicky's index finger was already a hook and could not be straightened. He was 9 months old!! Now, remember, this was 1997, there was hardly anything about EB on the internet and the only other person I knew that had a child with EB was someone who had a child that was younger than Nicky so it was like the deaf leading the blind. There were no support groups anywhere to be found and nobody I could ask any questions to that would have an answer for me. To say I was living in a nightmare it's the understatement of the year. I remember vividly one day putting Nicky's foot under the sink with running water to get the bandages unstuck and amist his screaming a friend leaving a message on my answering machine asking me how I was doing with the new baby and if I was enjoying being a new mom. Oh yeah. Don't get me wrong, I ADORE Nicky, Nicky is THE sweetest child in the Universe and I will say that until the day I die, but it was hard taking care of him without any help from anyone at all and this remains the hardest things I ever did in my life. Three more incidents come to mind, one involved a blister on his tongue that was so gigantic it prevented him from breathing. How would you like to take your baby and put him on top of you while he's screaming and direct a needle in the back of his mouth to POP this monster so your child can breathe? How about another time where out of the blue he started vomiting blood? The worse experience, one that I still can't shake after all these years is when I accidentally stepped on his hand, proceeding in COMPLETELY ripping off the skin of his entire hand. Within minutes my bathroom was filled with several fireman would were just SHOCKED at that view and had to think about it and discuss among themselves before they figured out what to do. I am still in tears when I think of that day.

Before you even wonder-yes, I asked the insurance if they would send a nurse at least once a month to help me out because I was drowning and it was DENIED. I ended up in a psychiatrist office, all I did was cry for an hour and all she did is hand me a prescription for pills. Lovely. I took the pills for a month and I decided they were not for me. Nick had me try other things and I just came to the realization that none of that stuff was for me, that to get better I simply had to get emotionally better on my own. Easier said than done. That's why I ended un in Italy for nearly a year, getting help from my parents, and my dad, 'til this day, tells me how he'd never seen me so low.

BUT, that's another story, for another blog. Over the years I continuously tried to get the Insurance to pay for bandages, and I got constantly refused. Even when I moved to California and I was able to get CCS to cover bandages, they still needed a letter from the Insurance once a year stating the denial, and it would take them sometimes up to 3 months to get me that letter, which meant I went without bandages for those 3 months. Then there was the time the Pediatrician was adimant of Nicky having PT & OT once a week each. People don't understand this, but every single appointment has a $30 co-pay. This means $60 a week or $240 a month and I wish I could have afforded it, but I didn't. I ended up in the bankruptcy office. Yes, I had a bankruptcy over MEDICAL bills. Sounds familiar? Why do you think I am so mad? I have an entire family in Italy, some of which have had some SERIOUS health issues, such as my mom, who was in the hospital, near death for 3 months, not only they saved her life, but the source of her problems, her kidney, was saved without the need of  going on dyalisis, and her co-pay? $0. Here there is a $150 co-pay for EVERY DAY you're in the hospital. In Italy the National Health Care system takes care of you. The same Health System that paid for my sister's IVF, who pays part of the women's salaries so they can stay home with their babies the first year of life, the same Health Care System who has taken care of every family member of mine without bringing them into bankruptcy. I feel really nauseated when people, who NEVER lived in a country with a National Health Care system, have a strong negative opinion about it. It's like they have an opinion about a book they NEVER read! Their opinion means NOTHING to me. But, alas, of course I am not even mentioning all the times Nicky needed a throat dilatation or a hand surgery and the referral took months and months to get, one time it took 2 years! It was a long story of lots of people not giving a hoot, but, again, another story for another blog. Or a book, yeah. At some point the whole story will be told.

So, what happened to Greg today? It all started months ago. A year ago actually, when Greg had his first stroke. After he was sent home from Rehab he was referred to a PT in the area. We were supposed to go once a week. We went to the first appointment and we saw the guy for 10 minutes, he handed us a flyer of excercises to do and sent us on our way. Driving home we were wondering why we weren't asked for the co-pay and figured since it hadn't been a 'session', maybe that was the reason why. We went again the following week and... same thing happened. 10 minutes, flyer, no co-pay. On our third appointment, while we were waiting in the lobby the lady asked us for... are you ready? $90 for the 3 "sessions". What sessions? 10 minutes... you call that a session? What kind of SCAM is this? We took our 'flyers' home and we started doing everything from home. After the second stroke there was no Rehab, even though he was worse off than after the first one. For some reason they thought he was getting PT or maybe the insurance didn't approve it, I really don't know, I was just happy to have him home so I didn't ask too many questions. It wasn't until an appointment with the FAB Neaurologist in Loma Linda that we realized we truly got the short end of the stick. She was mad at everything and everyone. 10 minutes? What? She wanted Greg in Rehab in Loma Linda, a new brace, all kinds of stuff. After 4 months we FINALLY got some in-home rehab (it had been DENIED twice, until the Dr at Loma Linda called them directly), but the in-home place was only approved for 4 visits with the OT and 4 with the PT, the co-pay was something we could handle, $15 so we would have been happy if this was something ongoing, but it was not. Did I mention that after it was approved, we were still told it was DENIED and the appointments were cancelled? Twice? A nightmare. That's what it is, period. A nightmare.

Moving on at a snail pace, in August the PT/OT appointments ended, Greg got his new leg brace and we were waiting for the approval for the outpatient PT. When the approval finally came in, and it was once again for that SCAM place, we were understandably upset. We told them that's the last place we wanted to go! I called for an appeal, twice, nobody called me back (shoooocker!!), finally I got a hold of the Insurance who gave me a list of places where I could just call and make an appointment for. Which, I did. Their first opening was this morning. When we went in we were told they don't take Aetna HMO and they would need the referral from the Doctor. Ugh! It was Aetna who gave their phone # to call for goodness sakes! I came home and there was a letter from Aetna stating they are working on the appeal and I just got off the phone with someone else at Aetna who told me they are 'working on it'. In the meantime, we wait.

What angers me is that I have a school friend in Italy whose boss had a stroke last year. SAME kind of stroke Greg had. Nearly identical. Without much problem, she's been getting FREE PT (Thanks to the National Health Care system) every week and now she's almost back to normal. After a year she has to pay out of her own pocket, but it's only $40-50 (not sure about the xchange rate at this moment) per session (here it's at least twice that, I checked!) and she only goes once a month now since she's nearly recovered. I am crying in ANGER thinking how much better Greg would be right now if the stupid "Health Insurance" system in this country worked without PROFIT. What is wrong with America? For shame!!!!!! Why can't we take care of our own? Mad, Angry, Disappointed, nothing can really describe me right now. Makes me want to take him to Italy right now if I could

And... that's the way things are in my world. As I said before, until you experience things on your own skin... never 'assume' things are so peachy. Ever. Never judge a book you never read.

Peace,
Silvia