Friday, January 27, 2012

You don't LOOK sick...

Living with CF can be overwhelming, but try to remember- we are living! It can be a daunting task day in and day out with all the things that need to be done to treat CF, but I have found that having a written plan of action for all treatments, medication and exercise helps me fit it into my daily “normal” routine. Eventually it all becomes the norm for me and my routine becomes my lifeline...

The compliment I get most often is- “you don’t LOOK sick”. My response: “well thank you, I try”! And I try very hard too! Most of the time those of us with CF DON’T look sick. But like the old saying goes- it’s what’s on the inside that counts! I could be having one of the worst days in regards to breathing, feeling junky, and infection could be lurking just around the corner for me – but to those who see me moving through my daily routine, if you don’t work closely with me or live with me, they may never even suspect. It is not a ruse or a mask that we wear, we are not hiding anything, we are just trying to be “normal” in spite of what we are struggling with. You may not notice the extra precautions we take to stay out of other people’s breathing space when they show signs of a cold or the flu, or when we carry hand sanitizer in our back pockets in the winter. It may not look odd to you that I have a full sized shopping cart in the store even though I only have one item, because I need to lean on the cart so I can walk through the store that day. My coughing could be chalked up to allergies, asthma or swallowing my drink wrong...and at the end of the day when we are all getting ready for bed only my husband knows that I am hooking up to oxygen for the night because I feel like I need just a little help recovering from the day. All of these things are just little ways we continue to “not look sick” when we are out living our lives in public. But this is how we try to live as normal a life as possible! So please compliment me as much as you want – as long as that compliment is still “you don’t LOOK sick”!

As consistency is the key to success, I believe in a consistent routine in my healthcare regimen. I don’t mean that we have to do the same thing every day the same way everyday- that would be boring, but I do think that we need to incorporate the same effort behind what we know we need to do every day to have a successful day. A successful day can lead to a successful week and that can lead to a successful month! Many of my nebulizer treatments are the same each day, as are the pills, and even the therapies! But I like to change up my exercise routine and my food choices to make things fun! These are simple yet effective ways to keep the routine from getting too mundane. I also try to keep that written schedule I mentioned earlier, making sure that I am not skipping over anything or forgetting something important. Everyone’s days are busy enough, so I know that if I have it written down I am more accountable and the burden on me is less.

As the days get busier, and we are tempted to let a treatment slide here or there, I can speak from firsthand experience and say please don’t do this! Do what you can to make sure you fit it all in! With a routine it becomes much like brushing your teeth! It’s just something you do. Try making vest sessions fun with music or game shows or even with someone else to help with tasks you need to get done at the same time. I have been known to put on makeup while doing a nebulizer treatment to save time before work in the mornings! Make sure all your pills are out and ready ahead of time to take them- this minimizes forgetting any! I have four large pill boxes that are Sunday through Saturday so I can fill them for the entire month ahead. This also helps when it is time for refills on all my meds! Missing pills or treatments leads to missing more pills and treatments and this can cause major setbacks over time. It is a dangerous game to play, and one not easy to bounce back from. Take care of your lungs, and add up your calories- these are the tools we need to live balanced “normal” daily lives!

Incorporate exercise into your routine. This can stem from keeping a tally of how many times you climbed stairs in a day to taking a walk or riding a bike to a yoga class for deep breathing to a full blown work out or even a pickup game of your choice (I personally like volleyball or soccer!) No matter what the exercise is or the impact level, it is something which leads to more and more each day! As you continue you will notice a difference in your lungs, your attitude and your outlook on life!

Once in a while I still find myself hearing disappointing and sometimes depressing information from well-meaning but often misinformed people around me- that includes friends, family and yes even doctors. I try to remind myself of all the ways that this illness has transcended in the years I’ve been alive. From when I was born to now, I almost lose count of all the steps forward CF research has taken. Some of it I have been fortunate to benefit from and some of it not, however I still run into the negative mindset of the illness. I try to stay prepared and to put it into perspective, and when I am confused I seek trusted sources (my treatment center – whom I have had since day one, my mother – who has been step by step with me, whether moving forward or going backwards, and a few trusted online resources where others with CF can chat and voice meaningful conversation about everyday life with CF. i.e. , etc.) I find it very helpful to connect with others who live with CF and their families. Although we travel these roads together, some of us can tell others what roads may lay ahead. Take advantage of this! It is helpful and it keeps us sane in the midst of our busy routines!

Wednesday, June 29, 2011

Humpday Humor- Final Exam, wish I had thought of this when I was in school!

It was the final examination for an introductory English course at Baylor University. Like many such freshmen courses, it was designed to weed out new students, having over 800 students in the class. The examination was two hours long, and exam booklets were provided.

The professor was very strict and told the class that any exam that was not on his desk in exactly two hours would not be accepted and the student would fail.

One-half hour into the exam, a student came rushing in and asked the professor for an exam booklet.

"You're not going to have time to finish this," the professor said as he handed the student a booklet.

"Yes, I will," replied the student.

He then took a seat and began writing. After two hours the professor called for the exams, and the students filed up and handed them in.

All except the last student, who continued writing. One-half hour later, the student came up to the professor, who was sitting at his desk preparing for his next class. He attempted to put his exam on the stack of exam booklets already there.

"No, you don't. I'm not going to accept that. It's late."

The student looked incredulous and angry. "Do you know who I am?"

"No, as a matter of fact I don't," replied the professor with an air of sarcasm in his voice.

"DO YOU KNOW WHO I AM?" the student asked again.

"No, and I don't care," replied the professor with an air of superiority.

"Good," replied the student, who quickly lifted the stack of completed exams, stuffed his in the middle, and walked out of the room.

Received from Big Mac Clean Joke Attack.

Tuesday, June 28, 2011

Interesting Article c/o Cystic Life

UCLA research discovers new lung stem cell...

On June 27, 2011, UCLA researchers announced that they identified a new stem cell that participates in the repair of the large airways of the lungs. This process plays a vital role in protecting the body from infectious agents and toxins in the environment. The airways protect the body by producing and clearing mucus from the airways. The mucus is largely produced by specialized mucus glands in the airway and the mechanisms of normal and excessive mucus production are not well understood. However, this newly discovered lung stem cell for the mucus glands will likely yield new insights into this critical process. The study, by scientists with the Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research at UCLA, represents the first time anyone has found the cell of origin for the many types of cells that make up the mucus glands and that can also repair the surface epithelium. The finding, the study states, is of “major importance to the field of lung regeneration.”
“We’re very excited that we found this population of cells because it will allow us to study mechanisms of diseases of the upper airway,” said Dr. Brigitte Gomperts, an assistant professor of pediatrics and hematology/oncology and senior author of the study. “For example, there currently are no treatments for excess mucus production, which we see in cystic fibrosis, asthma, and chronic obstructive pulmonary disease (COPD). But if we can understand the mechanisms of how these stem cells repair the mucus glands, then we may be able to find a way to put the brakes on the system and prevent mucus over production.”
Once the researchers proved that the lung stem cells existed and found where they “lived,” they set out to isolate them and confirm that they could self-renew, or grow more of themselves, and differentiate, turn into the cells that make up the mucus glands and surface epithelium. They created model systems in which these isolated stem cells did, in fact, make mucus glands with all the types of cells required to make mucus and repair the surface barrier of the large airways.
Our ability to identify the stem cells and their regenerative ability has implications for the possible identification of novel therapeutic targets for airway diseases and potential cell-based therapies in the future,” the study states. The stem cells also may play a role in tumor initiation in lung cancer when the repair goes awry, although further study is needed to confirm this, said Gomperts, who is also a member of UCLA’s Jonsson Comprehensive Cancer Center.
Continue reading on UCLA research discovers new lung stem cell - Los Angeles health |