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Healing Nicky’s Wounds that he gets from his diagnosis has always been my top priority. Preventing them to begin with was always #2. I must admit that when Nicky was little, it was “fairly” easy to keep his wounds healed and his skin intact compared to now. I even have a video of Nicky during a bandage change when he was 3 years old, basically naked after a bath, with no wounds. I’ve never been able to repeat my success from back then. The issue is the diagnosis in itself, as RDEB (Recessive Dystrophic Epidermolysis Bullosa) is considered a degenerative condition, even though the disorder does not get ‘worse’ per se. What gets worse is the skin after repeated injury. The more it gets injured, the more fragile it becomes. One of the Doctors that takes care of Nicky told me not too long ago how he thought my bandagingRead More →

What I am watching When they announced “The Handmaid’s Tale” on Hulu a few years ago, I wasn’t going to watch it. I had watched the movie long ago and it pretty much disgusted and troubled me, so I said “No way”. However, with the critical acclaim and the suggestions from friends, I went ahead and got the DVDs via Netflix when they became available and… well… WOW. Yes, the story is still troubling and disgusting, possibly even more so than the movie, but Elizabeth Moss is so compelling, one cannot take their eyes off her. Because this is a series instead of a 2 hour movie, we get introduced to a lot more characters, the backstory of how Gilead came to be is disturbing as well, knowing that WOMEN were complicit in this. I know many think that this will never happen, but I beg to differ. In ElRead More →

The other day, for the umptheenth time, someone sent me a message telling me that… even though they knew nothing about EB, their “eczema” was healed through foods and supplements etc. I don’t even bother to respond anymore, I just delete it. To compare eczema to EB is preposterous. I like to keep my zen thinking that people should really learn about EB instead of giving me unsolicited advice. I laugh. That’s all I can do. I laugh. I made the above meme, as I’ve made hundred others for EB awareness simply because EB is chaotic, loud, very, very messy, and exhausting. EB is genetic, no amount of food, creams, supplements, herb or other will stop the blistering, make the wounds disappear and more. My son’s body does not know HOW to make the collagen, no supplement is going to make his body produce it. No food will make CollagenRead More →

I was thinking this morning about my conversation with Nicky that I had a few years ago while we were changing bandages… I told him how hard it was to wrap his wrist and that if only he could try to straighten it once a day it would not be so ‘bent’ right now. I know how little PT he needs each day for things not to go to the point of no return and he started to cry. When he cries he can’t speak, so he wrote down for me all his feelings.The bottom line was that he did not want me to give up on him if he did not want to do something that brought him pain. That just about KILLED me.“Giving up on you” I told him “As if that it’s ever going to happen”? Life with EB. It sucks so bad… It’s hard to beRead More →

Thanks to the Italian Consulate of Los Angeles Nicky was able to have a day where a Professional Chef gave him a private cooking lesson. The Chef is Michelin Star recipient Luigi Fineo – who is the head chef of N10 Los Angeles, a fine restaurant owned by famed Italian soccer star Alessandro Del Piero. Here’s the video: I want to thank everyone for the kind words, donations and gifts they sent to Nicky via his GOFUNDME and his AMAZON WISH LIST following the airing of the segment. We appreciate it more than you know. I would also like to thank those that responded to my update regarding Nicky’s 23rd Birthday on November 25th and sent him gifts. We will have a big celebration on Thanksgiving Day as we always do. For those seeing Nicky for the first time, a little about his condition. He was born with Recessive DystrophicRead More →

What I am watching I’ve always wanted to watch “Le Miserables”, but that whole musical adaptation thing… I just could not watch it. I tried, trust me, but I could not do it. I guess because I grew up with musicals being ‘happy and fun’ stories, a musical of a sad tale… it just doesn’t work for me. So… when I heard of this new adaptation that was not a musical… YES! I taped it when it aired on PBS while I was stuck at the hospital with Nicky back in June and I finally watched it a couple of months ago and… I LOVED IT!!!! OMG. Lily Collins kills it. Five Stars!! I heard about Black Mirror on Netflix so much that when I was stuck in the hospital with Nicky I decided to give it a GO. All I can say is WOW WOW WOW. Each episode isRead More →

I just realized it’s been a while since I last posted a blog. I am not sure why that is, only that at times my life is not exactly “busier”, just dispassionate about things that I know make me feel better. I do have an excuse, however, I did go to my Uncle Tony’s funeral in Washington DC this past month, which took my mindset to a completely different level – a mindset that took me a couple of weeks to put in its honored place. I loved my uncle. I did. He actually died at the end of last year and was cremated waiting for a spot at Arlington to become available. He was one of those individuals who seemed all rough and tough on the outside but was as soft as a marshmallow inside. He was not someone that was easy to get along with, but all myRead More →