Jenny Livingston

I was supposed to have CF clinic (a post-pneumonia follow up) on Monday. As recently as Thursday, I had spoken to my nurse coordinator and we’d decided that the benefit outweighed the risk and we planned to keep the appointment. But by Sunday night, things had changed. I got a call from the PFT lab at 9:00 pm. They were letting me know that they…[Read more]

For me, Five Feet Apart did a great job portraying the relationships between patients with CF, and nurse/patient relationships. I’ve had a couple Barbs in my life (without so many HIPPA violations). And the relationship between Stella and Poe really got to me. When Stella cries out, “he was my best friend and I never hugged him.” AH, MY HEART! I…[Read more]

Once, to appease my mother, I used something called a Rife machine — something that emits radio waves at high frequencies to “heal” the body. I feel pretty comfortable saying it didn’t cure me. Hah! My early years were full of experiments like this, to no avail.

I regularly participate in clinical trials, which some people believe are too…[Read more]

Is it weird that I LOVE talking about the gross/unpleasant/sometimes embarrassing things? I find them kind of fascinating, but also think that we shouldn’t have to hide things that are totally natural. You are more than welcome to talk to me about ALL the gross things, absolutely anytime!

Barbara,

I love the idea of using peroxide and baking soda for bathroom fixtures and tile! Thanks for that tip!

To answer some of your questions (and please understand this is just MY experience and preference, not advice):

In the kitchen, most of my utensils are metal, but I do use plastic cutting boards. We have both cloth hand towels and…[Read more]

Paul, thank you for sharing this! I have an appointment next week that I plan to keep, but I will definitely be asking what plans are moving forward. How does my hospital/clinic intend to handle things as circumstances (potentially) get worse? We have confirmed cases here in Utah where I live, so I am extremely curious to know how we’ll move…[Read more]

I wish that people knew I’m not as unreliable as my illness makes me seem. I hate missing appointments, changing plans, or breaking commitments, but sometimes CF gets in the way and the best laid plans fall through. It’s one of the more frustrating aspects of being chronically ill, especially when being unreliable is such a contrast from my…[Read more]

I can, of course, only give my thoughts from my own perspective which is that of an adult with CF, but also a mom. I don’t travel often, so my routine isn’t perfected yet, but here’s what I do to protect myself:

1) I dose up on Airborne or Emergen-C a couple days before traveling.

2) I always ask to pre-board with my medical equipment. I…[Read more]

@sanemoore1 That is so cool! I’ve never even thought about using my Instapot!