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 →

I was worried about Nicky yesterday and I told him so. It seems as if lately he sleeps as much as 18 hours a day! He doesn’t do that every day (his normal is about 12), but he has done this at least 3 times this week-and he told me not to worry. He told me that he spent so much time in the hospital this year he’s enjoying the slumber without interruption in the cool, air conditioned room of his. Awww…. okay. He’s right, of course. Being at the hospital is surprisingly exhausting. The atmosphere is tense, the air is stale, people come and go at all hours and the fluorescent lights don’t help matters. It’s going to take a while for him to recoup and re-energize himself. Still, his wounds on his legs seem worse all of a sudden. His arms are not doing that well either. HeRead More →

Something happened when I tried to share my latest post from this website on Facebook on July 10th… Hmmm… really? People on Facebook have reported this website as abusive? When I further tried to copy and paste a link to my blog on Facebook I got this message: I requested many reviews, complained, sent feedback, asked, wondered, you name it. I got no response at all. I also read through the Community Standards and there is absolutely NOTHING in there about having “wound pictures” on my blog (not on Facebook, mind you, on my BLOG) that are deemed spam or are truly that graphic. There is no nudity in these pics, just wounds on arms or legs. This reminds me of the time a few years ago when I used to post my son’s wound photos On FB itself and I got put in Facebook jail for it. That postRead More →

I want to share our journey with all of you because it’s been a long road. If we can help at least one person going through something like this, then it is worth it to me to be open about our feelings and struggles. I can’t believe it took 6 months for our life to get back to normal, which explains why my blog became silent. It’s not that I had nothing to say, au contraire! When you spend oodles of times and endless nights in the hospital, you become this zombie that is hard to describe. I did start a diary again and that’s what kept me sane. It all started late last fall. Nicky likes to tell the story that it started back in 2017 when I accidentally ripped his tube out, balloon and all, while helping him go to the bathroom, but the truth is that heRead More →

This year, so far, has been horrible. I try to do fun things and distract myself as much as I can, but the undeniable truth is there, always there. Nicky is in pain. Always. At this point we’re waiting for a sleuth of appointments with various specialists (GI, Dermatologist, hydrotherapy etc) and hopefully as soon as possible, a surgery for a new ‘hole’, as the old g-tube hole is absolutely 1 million percent hopeless. It bleeds, and it doesn’t want to heal or close on its own. This has been going on since early January, so seeing Nicky dealing with this for 4 months, 2 hospitalizations and 2 surgeries later, I honestly feel as I want to just disappear. I am so tired. I want to hide myself in a little corner and cry. But, I cannot. I need to be strong for Nicky, and when he’s with his dadRead More →

Ever since Nicky has started having trouble with the g-tube we had to change our whole routine. While some are small things, the biggest change has been how much weaker he’s become, so, instead of him coming to the couch to change bandages, I go to him. He spends his day at the computer chair, so I grab the bandages and I sit next to him while I change the arm, leg, or whatever. He’s weak because he’s lost so much weight, but also because moving is painful. He’s been moving less and less over the years. When you don’t want to move much, it affects your joints and your muscles. The fact that his feet are mega-sensitive and he can’t really walk on them doesn’t help any. When he does walk he walks (with the help of his walker) on his tippy-toes, which are extremely well padded. An “outRead More →