My 43rd birthday was yesterday. February 1st should be a national holiday by now! Haha
I absolutely love my birthday. I know most women don’t like getting older but I’m not most women. Getting older is a blessing a lot of people take for granted.
Life expectancy numbers have never really worried me. It’s just a number. When I was born the life expectancy was around 12. Now for CF patients that were born between 2017-2021 the life expectancy is 53!!! There are now many more treatments and medications for CF including the revolutionary modulators like Trikafta that works on the cellular level. Research for CF is so important to extend the lives of those with CF. Finding a cure for CF is the ultimate goal. The CF Foundation has more than 70 chapters in the United States. Their slogan is “make CF stand for Cure Found.” You can go to http://www.CFF.org to find a local chapter or to donate to the cause. You can also find a Great Strides walk close to you. You can start a team or be an individual walker. Great Strides is the biggest fundraiser for the CFF.
Thank you for always checking in on me and for all the prayers and positive thoughts. Just remember that growing old is a blessing that isn’t offered to everyone.
Today is mom’s 60th birthday and she is in heaven celebrating with her mama who she missed so much so I’m sure she’s happy about that. I had plans of flying to KC to surprise her for her birthday. She would have possibly had a minor heart attack or crapped her pants when she saw me show up at her door. It would have been great, well not a mini heart attack but crapping her pants would have been funny to say the least. Continue reading →
When someone with a disease passes away many people use the phrase “<name> lost their battle with <disease>.” That statement can be taken as if the persons disease won and took them. I know when people use that statement they don’t mean that the person was weak and let the disease win. They mean that they died and the cause was that persons disease. Some people take it as an insult. I personally don’t because I understand people’s intention behind it. Also everyone grieves differently. As a person with a disease I know that I fight everyday to keep living. I don’t necessarily feel that it is a “battle” but the life I was given even though it is much harder than some. Some days are much harder than others and some days are much better than others. Life with CF is all I know. I was diagnosed at 5 months old so I don’t know any different. Continue reading →
I was enjoying a BBQ with friends yesterday afternoon when I randomly checked Facebook. I scrolled through and saw posts saying “breathe easy Jennie.” I had to go back and check who it was posted for because surely it couldn’t be one of my best CF friends. I immediately got up and walked away from our group of friends. I don’t even know how to process the news of her passing. I quickly messaged mutual friends to find out what happened. We have been friends for about 15 years!! Her passing was unexpected, therefore it is a complete shock. We had plans for her to come here next month to visit when another one of my best CF friends (one of our mutual friends) would be here. We were ready for a fun time with lots of laughing. Now myself and my other friend will be making plans to lay our great friend to rest instead.
Jennie and I had many conversations about this day in our morbid way that we did. I am not ready for this day to be real. I am sad to the core. Jennie was a wife, mother and a Meme (grandma). Her family will be lost without her. My heart hurts for them as they embark on this journey of saying goodbye and until we see you again.
Where to start….. I woke up today feeling complete doo doo. My head was throbbing, sinuses draining, sore throat, coughing and sore all over. I believe I caught the cold that the guys in my house have. Perfect timing, considering I finished 21 days of IVs today. I was really looking forward to feeling decent for a while. I did feel pretty decent up until a few days ago when my cough started to increase. I was thinking it was all of this crazy cold weather we have been having in TN. Continue reading →
This is a year of many “firsts” for our family. My grandma (mom’s mom) passed away in April of this year. This has meant that we had our first Mother’s Day, Father’s Day and now comes the holiday season. This is going to be an adjustment for all of us. Our family tradition has always been that we go to grandma and grandpa’s Christmas morning. We eat lunch, open gifts and hang out and watch football and/or good ol Christmas movies that play over and over on TV. It is all about family time. Over the last few years Grandma couldn’t handle making the big meal for all of us so we divided things up and made the meal. She hated that she got worn out when making the meal but we made sure that the meal still went on. Continue reading →