Hear from an Adult With CF and CFRD
“Are you kidding me? You want me to manage another chronic illness on top of my CF?”
Those were my thoughts after I was given the diagnosis of CFRD more than 25 years ago.
Joan Finnegan Brooks, 52-year-old with CF and CFRD.
Although it’s not easy to manage CFRD, especially at the beginning as you learn how your body responds to insulin, the payoff in terms of better health and improved energy are worth it!
Before my diagnosis of CFRD, I had lost a lot of weight and couldn’t gain it back despite all I ate; my lung function had also dipped. I missed a lot of work because I had no energy.
All of that changed when I started insulin therapy — it was a wonder for me. I began to gain back the weight I had lost and felt more energized and less tired. I went back to work and resumed my life, while managing CFRD.
Here’s What I’ve Learned
- Accept the diagnosis. Being in denial about CFRD doesn’t make it go away. Learn about the basics of managing insulin, food and exercise. Like any skill, managing CFRD is difficult and awkward at first, but you get better at it with practice. It will become second nature.
I continue to learn about how my body responds to insulin at different times. Rather than get frustrated, I remember that “it’s hard to be a pancreas!” When I’m successful at figuring out how much insulin to take with a meal, making adjustments for my blood glucose level and exercise plans, I feel like a winner because my blood glucose is in the normal range.
- Accept help and support from your CF and endocrine teams. Find a diabetes nurse educator you can work with. They are the ones who can really help you with the “nitty-gritty” of CFRD. They can also help you troubleshoot when you’re having a hard time getting things right for you.
Like CF, CFRD requires a lot of self-management and discipline. But because of our CF, we’ve already been refining those skills. Seek out other people who may be managing CFRD or type 1 diabetes for support. They can share helpful tips about managing diabetes daily. I was fortunate to have a very close friend with type 1 diabetes who “showed me the ropes.” She helped me fit diabetes into my life and not turn my life upside-down for diabetes.
- Be prepared to handle times of low blood sugars. Always carry a simple carbohydrate juice or candy snack. It’s easy to slip candy or small packets of fruit snacks into a pocket or purse. I usually carry a small juice box in my purse or knapsack, too. I think I’m the only adult who sometimes drinks from a juice box!
Even if I’m going to take a walk around the block, I stick something in my pocket just in case my blood sugar gets low. By always having something with me, I don’t get stressed if I need to treat a low blood sugar.
- Don’t be afraid. Testing your blood sugar doesn’t have to fill you with dread. The meters for testing are small, silent and quick. It hurts less if you prick the sides of your fingers (not the fleshy part of your fingertip) where there are fewer nerve endings. Plus, the amount of blood needed for testing keeps getting smaller and smaller, as tests become more advanced.
Taking insulin is very different from getting flu shots or other typical immunizations. The needles are very thin and short. They are made to go just under the skin (subcutaneous or ‘sub q’). I can honestly say that I barely feel the needle. There are also insulin "pens" that may be easier to use and more discreet. Some people with CFRD may use an insulin pump instead of daily injections.
- Take good care of yourself. While CFRD has an impact on daily life, it doesn’t have to limit what you want to do. I still work, go out to eat with friends, travel, run and bicycle and eat all sorts of foods.
CFRD just adds another layer of things I need to do to live life to the fullest. I do what I have to do to stay healthy so that I can do the things I want to do in my life. By taking care of my CF and CFRD, I can have the best lung health and energy level and work to reach my goals.
Don’t let CFRD stand in your way — you can manage it successfully!
You can also hear from another adult living with CFRD in a CF Education Webcast: Living with CFRD
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