Take a pen with you.

And a notepad.

A friend of ours suggested that I bring this to light for the newbies among us, those who are dealing with the reality of cystic fibrosis for the first time, or are otherwise new to the disease. I liked that idea very much as it is one that has served Alicia and me many times.

We like to research things. Alicia is better at it than I am, and I think that’s because she knows what questions to ask. She’s so good, in fact, that I have her help me develop my questions for any given situation I’m entering. It could be discussing career options with my detailer, ordering a new laptop, or dealing with cystic fibrosis. It doesn’t matter…Alicia is queen of the question.

But that doesn’t matter if you can’t record the answers to those questions. That’s where today’s tip comes in. If you’re going to ask questions, you have to be ready to write down the answers. I can almost guarantee you that you won’t be able to remember everything your doctor says, and that’s if you don’t ask any questions! If you add your own questions to the appointment mix, you’ll never remember everything he or she tells you. And with all the numbers that are thrown out at an appointment (height/weight stats, calorie counts, medicine dosages, treatment stats, etc), you’re just going to need a pen and notepad.

I hope I’ve convinced you that it’s vital to have writing equipment when you go to a CF appointment. It doesn’t have to be big…you don’t need a 3-ring binder or anything, just a little notepad and pen. And when you get home, type your notes onto a Word document or other word processing system. There are three reasons for this.

First, you’ll have the notes in a more legible format. Please don’t misunderstand, I’m sure your handwriting is fine. It’s just that when you’re trying to write down stat after stat and answers quickly, your handwriting might get a bit messy and you’ll probably start some form of shorthand to deal with the amount of information. Typing this into the computer will help you make sense of it immediately so that you don’t go back to your notes a few weeks later and wonder what you wrote.

Second, revisiting them immediately and forcing yourself to think through the notes as you type allows your brain to absorb the information better.

Finally, it’s unfortunately too easy to lose paper. I know that files on a computer can be deleted. Believe me, it’s happened! But if you properly backup your files, this shouldn’t be an issue, and as long as you’re moderately organized, having your information on a computer document will allow you to always have it organized.

So next time you go to the doctor for your child or yourself, take a notepad and a pen. Ask lots of questions, record the information, and type it into another format as soon as you can when you get home! I promise it will save you plenty of frustration trying to remember what the doctor told you!

Any of your veterans have other ideas about recording information from a doctor’s visit that you can share?

Thank you Stephanie for the idea!

Don't Give up on God

When bad things happen, some of us give up on God, or worse yet, get angry with him. If you have a faith (and I speak from the Christian faith), then you simply cannot give up when you hear that you have, or that your child has, cystic fibrosis.


You may ask how we handled the news.

Alicia and I had no idea what to think when Doctor W. told us that our daughter had cystic fibrosis. We didn't even know what that meant, much less what we should think. We were in awe. When we got home, Alicia did what she does best…she researched CF until she had some of her basic questions answered. I did what I do best…beg people to pray for us. I used vital information that Alicia found to help promote our need for prayer. And it worked. For the first few weeks of Sam's life after diagnosis, we not only prayed ourselves, but there were at least five people (and some churches) praying also. It meant the world to us and I'm convinced that it helped us accept the reality of our situation.


It's ok to ask God why you're in this situation. Many in the Bible did that and survived. God cannot answer your questions if you do not ask them. He can handle your frustrations, you anger, and your confusion. He is God, after all.


Do not give up on God. Finding out that you or a loved-one has cystic fibrosis is devastating, but not something that is past the power of God. He has done miracles for my family, particularly through the health of our daughter. We have been amazed at what God has done for Sam, and for us. Our faith has been strengthened, not damaged, by the occurrence of cystic fibrosis. Lean closer to God despite this disease, and watch him do great things!

Two Most important parts of the Cystic Fibrosis Foundation Website

The CF Foundation’s website is chuck full of information, news, and assistance. However, for the CF newcomer, it might be just a tad overwhelming. There is a lot of information to get through because CF is a very complicated disease. However, there are two primary areas I would recommend when you’re starting out. The others can wait until your head has stopped spinning.

Most important part 1: About Cystic Fibrosis

Your doctor undoubtedly gave you at least a basic understanding of cystic fibrosis when you first met him or her. Don’t be embarrassed if you forgot most of that information. Who could blame you with all of reality crashing around you? Just know that your first source of information about CF is this website, in particular the About Cystic Fibrosis heading.


Most important part 2: Living with Cystic Fibrosis

A whole new world has opened up to you, and for the first time in your life, you really didn't want to see it. You vaguely remember hearing from the doctor about enzymes, breathing treatments, chest PT, and enzymes...wait, you already thought you heard that, right? Or was that something about clinical visits? Or man it's all running together!

It's ok. There's a lot to learn about living with CF, so click on the tab with that title on the CF Foundation website. Some of the stuff you need to learn ASAP. Some of it will come. Follow the doctor's orders, read the website's information, and move forward. You can do this!


When my wife and I first found out that our brand-new daughter had cystic fibrosis, our heads spun a little. We didn’t know what to do except pray, ask our friends to pray, and research as much as we could. You’ll do yourself a huge favor if you’ll start your research effort at the CF Foundation’s website, particularly with those two headings. The rest will come in time…I promise. Oh, and prayer wouldn't hurt you either.

Cystic Fibrosis Newcomer

One of the changes I'm making to the blog over the next several weeks is to create a section, or label as it were, for the newcomer. I know that Alicia and I went on a feverish manhunt for information right after we found out we were CF parents. Well, I want to create a storehouse of information, inspiration, and advice for newcomers to the CF community here on Strides.

My first post on that will be about what I think the two most important parts of the CF Foundation website is. That will post this week.

Alicia and I have been in the CF community for a little under 4 years. That really still makes us CF newcomers. We are constantly learning every day what it means to live with CF, or rather what it means for our little girl to live with it. So I write about this topic because I represent this topic. If what I cover can help anyone, then the task is a success.