Countries including India, China, Nigeria, Pakistan and Indonesia, accounted for over 16 million or half of the global estimated cases of a fatal lung infection called Respiratory Syncytial Virus (RSV) in 2015, researchers led by Continue reading More Than 16 mn Fatal Lung Infections in 2015! Know these 5 Foods to Keep Your Lungs Strong
By Ella Balasa
Living alone has its perks and its downsides too. It can get quiet at times. There isn’t someone’s presence here constantly. The upside is having the flexibility of doing what I want on my own time. Although I have recently come to realize, more responsibility means less free time to do whatever I want whenever. Having CF, this means a lot more responsibilities. Many young adults are living with their parents through their early 20s. This is something I did as well, and have recently made the transition to being on my own. There are a few things I have learned so far:
Time management is important. I have to think through my day before it happens. Fitting in 3-4 breathing treatments a day is an absolute must, so everything else I do in a day has to be worked around when I do those. I have to think about when I need to do certain things to be able to get places at certain times and to accomplish what I need to do in a day. Nutrition is also extremely important, and to make sure I’m having healthy meals, not grabbing take-out on the way home or out, pre-planning meals is something I have to think about. For example, taking something out of the freezer the night before, so I can prepare it in a crockpot the next morning to be ready to eat by that evening. When I plan things I am able to accomplish more, in a more efficient way.
I’ve learned the meaning of discipline. This goes along with time management. There are times where I can’t go meet up with a friend because I need to be home doing treatments, cleaning nebulizing vials (we all know how tedious and annoying this can be) grocery shopping or taking care of other responsibilities. I no longer have my parents nagging me and reminding me to do tasks that I need to complete. I have to take the initiative and do without being told.
I have a greater appreciation for my parents. I now realize how much my mom did for me. Mostly cooking meals, cleaning the house, taking out the trash, and just her caring nature. When she would randomly bring me a snack as I typed away at my computer. It’s the little things like that I miss the most.
Freedom. This is the best positive aspect to the whole situation. I do love feeling the sense of independence and accomplishment that comes with figuring things out on my own, planning my days, and getting things done in the time they need to be. I wouldn’t trade it. It is nice to not have constant reminders from parents and nagging about things I’m doing wrong or what I should be doing. And I feel proud that I am able to live my own life despite the extra daily challenges.
Although it is more work to be responsible for myself, I think it’s a very important step for young adults including those with CF. Parents of children with CF can be quite overprotective and may have a harder time letting go and allowing young adults to manage their own lives. It teaches responsibility and discipline and in the long run is beneficial for CF adults as they are better prepared to take on more obstacles and challenges with managing life with CF.
By Ella Balasa
Rise and shine to start another day! Like most of us, I have limited time in my morning routine, AND I tend to slack on getting my greens for the day. Occasionally, I will eat a salad with my lunch or dinner, but that isn’t enough. The saying also goes… an apple a day keeps the doctor away…That’s definitely something we as CF patients want! Continue reading Green Smoothie Recipe – Healthy and Caloric!
By Amy Braid
As I mentioned last month, I read Wheat Belly by William Davis MD and decided to go gluten free for 30 days. Well my 30 days is up…
I felt no significant difference eating gluten vs not eating gluten. I did eat a lot more fruits and vegetables and yogurt which I loved. And I was hungry a lot more too. But I was eating lots more quantity. The first week or two I did feel less bloated after eating, and my wrist problems seemed to be diminishing. But I can’t say that for certain since I was not using it as much as I normally do either. By the time I hit the two week mark I felt exactly how I did before I started.
One thing that did change significantly…my fasting blood sugars. They were all in the normal range for those 30 days. But my post exercise blood sugars were awful. I crashed every single day I exercised, and that was 4-5 days a week. Not good.
I only cheated once. Hand to God I swear. It was the last week. We were going to my mother in laws for dinner, and since I make fresh bread a lot this time of year and , I made some the night before. I had to try a bite when it was finished! Just a small bite, and I didn’t have any at dinner the next day. And to be honest I didn’t feel anything negative side effects from sneaking a piece.
So for me I don’t think gluten has any noticeable impact on me. I was a little disappointed, I won’t lie. I did hope my lungs would feel better and my wrist would feel amazing and I would not bloat like a balloon with meals. The first 10 days or so I was excited that I might get there. But in the end, nothing. So it is back to gluten for me. But modified, I will eat less, avoid all the snacks and processed foods (for the most part) and try to maintain the healthy fruits and veggies I was eating for that month.
All in all I don’t think this experiment was a total bust. It was a learning experience and I tried some new foods I didn’t think I would like, and ended up loving them. So win win for me!
By Amy Braid
A couple of weeks ago Andrea posted this blog about her experience with going gluten free. She read a book called Wheat Belly by William Davis MD. She talked about how much better her joints feel having tried this. It sounded great!
Of all the pancreatic enzyme medicines doctors can prescribe, PERTZYE®(pancrelipase) is the only choice that contains pancreatic enzymes buffered with bicarbonate.* Bicarbonate is a substance normally secreted along with pancreatic enzymes that helps them work efficiently to digest food. Continue reading A Unique Approach to the Treatment of EPI in Cystic Fibrosis
This blog post touches on the invisible disease side of things. I know I went pretty deeply into that with my little story about almost getting tased on an airplane ride from Boston to New York, but this is a little bit of a different Continue reading Gunnar Esiason, Own It: Don’t Say That to Me
This is Jeanie Hanley. I’m not really sure that these are THE top 10 perks but they’re my top ones. Since David Letterman just retired and the “Top 10” were his comedic shtick, I write these in his honor, loosely of course. Keep in mind that I did not have a team of comedic writers working on Continue reading Top Ten Perks of CF–Guest Blog by Jeanie Hanley
Come one, come all, and submit your favorite family recipes by August 8 to help raise $5,000 for CFRI through CFChef Shares, an exciting new partnership between AbbVie and CFRI to promote awareness of proper nutrition for those living with CF. Continue reading Calling All ‘Foodies!’
Recent research led by Professor CHAN Hsiao Chang, Li Ka Shing Professor of Physiology and Director of the Epithelial Cell Biology Research Centre at The Chinese University of Hong Kong (CUHK), explains why patients with cystic fibrosis often develop diabetes. The study also suggests a potential treatment strategy for cystic fibrosis associated diabetes. The finding has been published in an international leading scientific journal, Nature Communications. Continue reading CUHK Research Explains Why Patients with Cystic Fibrosis Often Develop Diabetes