What to do when you are woken up and you can’t get back to sleep….you get up and blog about what is on your mind. Friends and family have been on my heart and mind for a while. The sicker that I get the more I think about them and what they may be feeling. Family is “stuck” with me but that doesn’t mean they have to deal or even claim my CF. They can love me from afar and still be my family even if they don’t want to acknowledge my CF or even remember. It is easy to ‘forget’ that I have anything since we are states away from one another and we don’t see each other daily or even weekly or monthly, sometimes going longer without talking to each other as well. Continue reading
We recently got back from Hawaii (Honolulu, Oahu). The purpose for the trip was to spread my mom’s ashes in her favorite place on earth. She wanted to be in Hawaii forever and ever. We chose to spread her ashes in front of Duke’s restaurant on Waikiki beach, mom’s favorite restaurant. It was a very special time but also surreal and will forever be a memory in my heart. Continue reading
This is probably going to be ALL over the place so bear with me and enjoy the ride…haha Let me pick up after my last clinic appointment…
We headed to Kansas City the last weekend of July/first weekend of August for my husbands 20 year high school reunion. It stated off as a super short trip. Flying in on Friday afternoon and flying home Sunday morning. I decided to change my return flight so I could stay in KC to help my mom after her most recent hospital stay and to squeeze in helping my dad get situated in their new house. I also set up as many lunch/dinner dates and “swing by” visits that I could with friends. Since we aren’t back in KC that often we try to squeeze everything in that we can. I never want to sound like I’m royalty or sound snooty by saying that “there is one of me/us and lots of you,” meaning we wish we could see everyone but that’s a lot of people! Therefore I/we try to set up a central place for lunch, dinner or drinks and say this is where I/we will be if you are wanting to see us/me. I have a hard time saying it that way because I don’t want anyone to take it as though I think I think I am better than someone and that everyone else’s time doesn’t matter because it does. Continue reading
Happy Mother’s Day to all the mamas out there!!! That includes birth, adoptive, step, foster and even those that took on that roll without any title. My mom is pretty special if you ask me. My mom sacrificed a lot when I was younger whenever I was sick. If I was in the hospital she would come to the hospital after work and stay the night. She would wait until the doctor’s rounded in the morning and head back to work for the day. We had a good routine going. The older I got the more freedom I got to be alone at the hospital which was brave of my mom. I embarrassed her many a times by the things I said to nurses, residents/interns (aka “duckling docs”), RTs and more. She has stories…hahaha Continue reading
Happy New Year everyone!!! As far as 2014, I could have done without so many IVs but hey I wasn’t in the hospital at all in 2014 so for that I am thankful. I am excited to see what 2015 brings. I hope it brings longer spans of time between IVs for one. Secondly, I hope that I can keep my running streak of no “lock up/Club Med/hospital stay” going, 18 months and counting. Continue reading
It seems that Thanksgiving has become a shopping holiday and not a time to be with family and to be thankful. Unless you are thankful for sales at crazy hours which I am not. I am not a black Friday shopper nor am I much of a shopper anyway.
What does Thanksgiving mean to me? Thanksgiving means family time with lots of yummy food. You don’t have to have some big organized function for it to be family time. Simply having family over for a meal and/or hanging out is enough.
This year we are unable to be with family due to the move to Tennessee. We were invited to one of our son’s friends houses for a Thanksgiving meal. I love how people invite you into their home and their family traditions when you don’t have family close. I know we have done the same for people. I am always happy to have people join us at our table. Our house/our family has an open door policy when it comes to people needing somewhere to go for the holidays.