Tuesday, December 28, 2010

It's been a while...

It's been a while since I posted, and while my opinion about the enourmous shortfalls of the American Health Insurance industry continues to plague my life in ways unimaginable to most people, I try as I might to stay positive, to keep my mind busy, to try to busy myself with things that can improve my life. All my life my glass was always half full no matter what, and it still is, despite the way life keep trying to bring me down.

I was elated yesterday when I found out the advancements of Stanford in their genetically modified skin grafts to help RDEB patients like my son, I was able to see the lecture given by Dr. Lane at the Debra Conference this past June just yesterday and I was thrilled when he mentioned this 'patient in Europe' and how his graft is still enduring after nearly 10 years. I know this patient! I talked to him during Xmas 2001 right after he had the graft done, he's a sweet Italian guy that lives in Turin with Junctional EB. Well, they will start the trials of these grafts in the Spring in adults with RDEB first and if they work well, they will work even better in younger patients, which will be next in line. I found it kind of funny how the past couple of months I've said over and over again to anyone who will listen how if only we could get Nicky's knees, feet and upper arms 'forever' healed his life would improve ten fold and this might become a very real possibility within the next couple of years! This is just the 'hope' we needed to keep going, to keep moving, since the transplant at this point is basically an impossibility. I don't fault nor judge anyone that wants to do it, but it's simply not for us.

Let me say this again... I am NOT a critic of the BMTs. I absolutely love Dr. Wagner and Dr. Tolar, I think they are the most inspiring and caring Doctors I've met in a long time and I do hope their procedure improves with time so it's safer for the patients, and you will never hear me say anyone is crazy for trying it, especially those who have a 'sibling match'. My heart bleeds for kids with EB, and especially those with the fatal Junctional form and those with RDEB like my son, it's a horrific, horrible disease. If it feels right for you, do it. At this point, it's not the right thing for Nicky, and Nicky is old enough to understand how it's better right now for him to wait for the skin grafts. It's his choice. And that's that.

I can't or, rather, won't say that to EB groups because I have a hard time with 'support groups' or 'fan groups' of any kind. The hate that goes around is horrible. I could sit here and tell tales of all the people who are mad because only the worse forms get the attention or those who feel horrible because they are worse than anyone and the drama and bad mouthing that goes on is now beyond my level of acceptance. I've spoken and described in detail on a private blog about the way I was used and abused by a group of people in the EB community which is the reason why I stay away from their 'drama'. I have enough drama in my life without being in the receiving end of theirs. I thought though that 'fan groups' wound be fun. I was incorrect. I recently joined a fan group of a particular show and the only posts were those from people who think nothing of using profanities and hateful speech and derogatory remarks about this character or that actor, it's absolutely horrid, and when I called them on their hate, they called it 'their opinion' or their 'freedom of speech'. No thanks. Hatemongering and fearmongering is not my bag. Period.

I promise to start using this blog more for my creativity in the future. In February I will start taking two classes toward my degree that will enable me to share some of my creativity, which include digital photography and advanced photoshop. I know I have a lot of 'fans' of my Incredimail work (bless their hearts!) so I will start making some of those again in the Spring as well.

In the meantime, if you would like to help me out, since I had to quit my job at Target so I can be at home more to take care of my husband post-strokes, Nicky and his online/home-school and my little guy who is only in 2nd grade, please join my AVON Facebook page which includes deals and an inspirational quote of the day! Here's the link to join now!

Thank You and God Bless!!