Hi Charlene,

I was diagnosed with PF in February  2017. I have been on prednisone ever since.First  I was on just prednisone then a combo of prednisone and Cell Cept. I had a  bad reaction from the Cell Cept so stopped taking it after 6 mos. I started prednisone at 40 mg daily and dropped to 20 in the first 6 months. After dropping the Cell… Read more

I know exactly how you feel. Everyone walk away from me as if I’m going to contaminate them. It’s something I have struggled with too. I’m finally realizing it’s ok. I’m doing this for me. I wonder if we should right on the mask itself that we’re just protecting ourselves& not contagious. 😊

Charlene, thank you so much for the tip on wearing the cannula backwards. This is fantastic. It holds it in place and keeps my hands off it. I just need to get used to it. Thanks again. Your topics are always so helpful. This disease is no fun, but if we face it together and help each other deal with our problems it makes each day A bit… Read more

I am on oxygen 24/7. I use a home concentrator, an eclipse 5 & bottles of O2. I change mine every week or 2. My supplier will give me as many as I want. I change each one as they get dirty quickly. I’m constantly playing with it as I can’t  seem to find one that fits me right. The best for me is the Salter Lab super soft. The nose pieces are… Read more

I also cough a lot while laughing. I wish I knew how to deal with this. I love to laugh and it’s an uplifting feeling to do so. If anyone out there knows a solution let us know.

Charlene, my pulmonologist told me to keep my feet elevated as much as possible. He wants me to watch for redness or extreme swelling that doesn’t go down when elevated and get back with him if it doesn’t subside in a few days. Of course he mentioned “salt” intake which I assured him I’m always careful with. He did say to try light… Read more

I have PF and I have this going on right now. It’s happened before but usually goes away after a day or two. This time it’s lasting longer. It’s been more than two weeks now. Mainly in my right ankle, but also present less severely in the left ankle. It’s always better in the morning but soon gets swollen after I’m up and about.… Read more

I love the song Great are you a Lord by Sons and Daughters. Here are a few of the lyrics:

You give life, You are love
You bring light to the darkness
You give hope, You restore
Every heart that is broken
Great are You, Lord
It’s Your breath in our lungs
So we pour out our praise
We pour out our praise
It’s Your breath in our lungs
So we pour… Read more