Rounds Inspirational Journeys

I have been attending a weekly group called "Conversations about Healthcare" at my church. Last night we discussed health care proxy's, living wills, organ donation, and nursing home care. I learned some interesting things, but a major issue was brought up that I wanted to make you aware of. According to the presenters, in New York State, and probably elsewhere, even if you have signed up to be an organ donor on your driver's license, if your family says no, the hospital will NOT donate your organs. Wow, I had no idea that family could over-ride your personal wishes. This highlights the need for you to discuss with your family your end of life wishes. I don't care how old or young you are, this is extremely important. You can fill out an organ donation registry form at the following website: NYS Donate Life Organ and Tissue Donor Registry Enrollment Form http://www.nyhealth.gov/professionals/patients/donation/organ/docs/enrollment_form.pdf . There is also a place...

I found this article that better explains the Donut Hole. I have to tell you, I am quite disturbed by this, not just for me, but for every person who is on Social Security. These are individuals who worked hard during their lifetime, but could not continue to work any longer. In my case, because of the size of my husband's employer, I have no choice but to have Medicare, I am not eligible for private insurance. So, for those of you who are healthy now, this is what you have to look forward to when you retire; the time in your life when you will need health care coverage more than you ever have before. I can only speak for myself, but I think this is a true injustice to our elderly and disabled! I would love to hear your thoughts, please don't worry if they are different than mine, I really would like to hear all sides. Medicare Part D: Understanding the Medicare Part D Donut Hole Learn About the Medicare Part D Coverage Gap By Michael Bihari, MD , About.com Guide Updated Decemb...

This weekend I learned the hard way what a Donut Hole (no, not Timbits , but medical insurance) is. I went to refill a prescription and was told that I have entered a donut hole in my coverage and owed $1200 for my prescription. I about fainted! I have heard people discuss the Medicare donut hole, but really didn't understand what it meant. For those of you who are ignorant like me, a donut hole is when your insurance has paid out a certain amount of money and suddenly they stop covering you for a period of time. In my case, since January 1 my insurance has already paid out over $4330, so suddenly the burden of coverage switches over to me. I am now in a coverage gap stage until my out of pocket costs reach $4550, then my coverage will kick back in. In my case, that $4550 will be paid out before the end of February (many of my drugs cost $2000+ per month). So, to give you the big picture, I will have already spent 1/3 of my total yearly social security income for 2010 by the end ...

Sorry if you all thought I dropped off the face of the planet. I have just been keeping so busy, I have a hard time finding time to post. I am not complaining about this, it is wonderful! After the hours, days, and weeks I spent only being able to post, I am thrilled to be engaged in other activities that are keeping me away from this computer. Things continue to go so well, I am smiling more and more every day. My life is so full right now. I thought I would share some recent pictures with you: Our animals give us so much love! New Year's Eve: Lydia and Kirsten with Oreo We took Hannah and her friend Taylor skating this weekend. Be sure to check out my cooking blog, there are lots of yummy new recipes posted there www.cookingforfunwithnancy.blogspot.com P.S. Some of you have noticed the solicitous comments I have been getting. Those are what we call blog spam. I am trying to change my security settings to get rid of that, but until I am able, just ignore it as a nuisance! Than...

I can't remember if I have mentioned this before, but Scott and I were asked to record a song for a benefit CD that will be sold to help a young woman with CF raise money for a double lung transplant. Though we were both quite nervous about this prospect, we agreed to try. We recorded How Great is Our God by Chris Tomlin, you are currently hearing it on my playlist . It is not professional, but was done from the heart, my voice has deteriorated quite a bit in the last few years and Scott is only a beginning guitar player, but I think all things considered, it sounds okay. Hannah is also featured, you can hear her and Grace Emley (her friend) singing "Sing with me..." and she also sings "Name above all names.." It was a lot of work and took a lot of time, but I am so glad we will be able to make a contribution to the CD. Once it is available for purchase, I will let you all know. I have been feeling quite under the weather the last few days, some kind of st...

When I was in college I received a scholarship through Solvay , so I wanted to pass this information on. If you are in college or are preparing to go to college, you should definitely consider applying for this scholarship! The Boomer Esiason Foundation has done so many wonderful things for the CF community. They provided money for me while I was living in Pittsburgh awaiting transplant. I am so grateful for such wonderful organizations who truly care about people with CF! Scholarships Program for Individuals with Cystic Fibrosis (CF) Now in its fifth year and with a new supporter, "Sacks for CF" means money in the bank for college students who have cystic fibrosis. For every sack recorded during NFL Monday Night Football games, Solvay Pharmaceuticals, Inc. will donate $1000 to the Boomer Esiason Foundation Scholarship Program. Solvay has supported the CF community for more than 20 years by providing nutritional, educational, and financial resources to those touched by CF...

We had a terrific weekend! Friday we drove to Buffalo to see the Sabres play the Hurricanes at the HSBC arena. When Scott was a child, his family often celebrated the New Year at a hockey game, so we were re-living his childhood memories. We spent the night at the same hotel his family always did, the Adams Mark, and Hannah enjoyed some time in their lovely indoor pool. We were invited to the game by a dear friend, Michael, who often invites Scott to join him in his company's box. Hannah has never seen a game in the box, so it was a real treat for her. I think she ate more while we were in the box than she had during the whole holiday season! On Saturday we went to see Avatar in 3-D. I wasn't sure what to expect, but we were blown away. What an amazing film on many different levels. The effects were incredible and you truly were sucked right in. It was hard to tell the difference between computer animation and real life. The story was so poignant and has been repeated many tim...

Wow, can you believe it is 2010 already! What an amazing year 2009 was for our family, I can only imagine what 2010 will bring. Last year I was starting a new life. I would learn to breath without oxygen, to be alone again, to care for myself and my family, to re-learn independence and confidence, to realize how it feels to live healthy, and finally to appreciate the gift of every new day. This year I start out with a full bag of lessons and the desire to live each day to the fullest, praising God for all He has done for me and giving back to all those whose prayers made this possible. Thank you for your prayers and support in 2009, may your 2010 be filled with love, joy, peace, and many blessings! All my love! Nancy