butterflyskyn@gmail.com my Christmas album years ago i recorded a Christmas album (me singing) to help raise funds for the EB Medical Research Foundation (EBMRF www.ebkids.org). this song, He Shall Be Born, is my favorite, and my husband claims that it is because of this song that he fell in love with me. it's my gift to you this season. Merry Christmas! my agendas I have some agendas. one is to show the reality of people depending on public health care in America. whether or not it is an argument for or against the current public health care changes, i'll let you decide. i have struggled to get the health care that is absolutely necessary for me to stay alive, yet i am so very thankful to have it, as difficult as it can be to jump through all the hoops to get it. many many people have made a lot of sacrifices to help me be alive, comfortable and happy, including tax payers. i have my parents to thank for the most part, because they have sacrificed their lives in so many ways. i don't know how better to thank them than to be grateful, and because i have been given so much, i must give back. this video blog is an attempt at giving back. i feel really uncomfortable talking to a camera with nobody behind it, so i know it comes across really cheesy. i'll get better with time. all about my bandages let's just get the obvious questions out of the way. watch me give you the tour of my dressing change area. i talk about popping my blisters. also, watch for updates on my new part of the house being finished, designed with a special dressing change room just for spoiled me. dressings are expensive. i'm guessing per day for bandages alone it costs around $100. For daily nursing care and home health aid service it is probably around $75 per day. I also have surgeries about every 6 weeks to remove cancer and each visit is probably in the thousands. this is all currently being covered by Utah medicaid. getting political--who me? the next couple videos are in response to an article i read called Health Care Reform - The Moral Arguement. be sure to watch the 2nd. i'm finding more purpose and urgency to make these videos now after having this discussion. there are people in America needlessly suffering. i can be a voice for those who don't have time and energy, who are too busy fighting to stay alive. |
normal life I've been wanting to start a video blog for years. i love my video camera and doing general editing, i think it's exciting. i find people very fascinating and love to interview them on video. capturing people's lives and their story is so rewarding, especially people with epidermolysis bullosa, a rare genetic skin defect, which i have. EB is hopefully a rare thing going out of style really fast. there is a lot of hope for a cure in the near future. the lives of the few who live with it are rare, and i want to capture it so we can look back and say, "aren't we glad there is no more EB in the world?" i can't think of many worse diseases, if any. if you want to know more about the disease then visit: www.debra.org. my aim is not to put out more dreary information about sad people in pain. there are enough videos online about EB that will make you cry. Go ahead and search epidermolysis bullosa if you want a good cry. i can't avoid the sad facts all the time in this video blog, but i intend to show the other side of the EB story. and i'm doing this because i want new parents with EB babies to have something positive to see when they perform a search on EB for the very first time. They need to know that EB is not a death sentence. Though you will read that living through adolescence with EB is very rare, you need to know the whole story. I have the most severe form of EB, and i am 32 years old and have my dream home, my dream, husband and my dream life. please prepare these children for adulthood. It's possible to live a reasonably normal life. my dream home, my dream man and great friends--happy thanksgiving i have so much to be thankful for. follow my updates on the finishings of my dream home. the 2nd half of this video is boring. maybe i'll take it down. i saw O, i saw O!! my wonderful husband fulfilled one of my wishes on the proverbial bucket list. for our 4 year anniversary we went to vegas and saw O at the bellagio. miss you Lorien Lorien Johnson was like a sister to me. We filmed this video at her home in Cincinnati. She died from cancer that formed because of EB. I miss her so much. The world was such a better place when she was alive. |
