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 →

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 →

One would think that after all these years of dealing with the Insurance, Medical Groups, Doctors, NPs, Referral and Service Personnel and the Medicalese involved, I would no longer have to deal with the insanity and run-around of people telling me completely different things, but I suppose I am no immune to ignorance. Just because I’ve dealt with stupid people before, that does not mean it’s not going to happen again. Ugh. Late last year the company that provides us with Nicky’s g-tube supplies (Lifecare Solutions) left me a message to let me know that the company was moving out of the state and that so-and-so company would be taking over. So far so good. No problem. In the past, the referral was automatic, so to speak. The new company would take over the monthly re-supply order of the pump, the bags and the various supplies that sustain Nicky andRead More →

While spending the weekend at his dad’s, Nicky sent me a video on my phone, showing me how the little plastic cover for his g-tube had broken off. He could still “close it”, but it would not last long. I told him that we could change his tube today when his daddy brought him back and he said OK, but I am still reeling from seeing the video of my angel with yet, another obstacle. For those that never had to change a g-tube, let’s just say it’s 100% gross and very painful. I am no nurse, I never wanted to be a nurse and just to think I had to learn to do this kind of stuff makes me queasy. The first time that I had to do it I was beside myself-the whole story of that day is in my book. In the 16 years since Nicky gotRead More →

I must admit, this past week it was hard to try to be my usual ‘Zen’ I try so hard to be. Nicky’s g-tube supplies failed to show up a few days before we usually run out, and with 3 days of ‘food’ left, I called, only to find out that, for the umpteenth time, the company that supplies us with these vital products changed. It’s never, ever a good thing. Actually this time, the company didn’t technically ‘changed’, they merged with another one, and they claimed they Faxed the referral to the Medical Group/Insurance on May 21st and they were still ‘waiting’ for a response. They also stated that they do not send anything automatically, and that from now on I have to ‘call’. Oh no. Not this again. I honestly hate to ‘call’. I never know ‘when’ to call. I can’t call too soon, they have rules I haveRead More →