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Pulmonary Fibrosis: How Do You Stay Positive Since This Fatal Diagnosis?

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Joan explains how she keeps a positive attitude and describes how she is trying to raise awareness for pulmonary fibrosis (IPF).

I don’t sometimes. The hard part is at night when you go to bed, everything is quiet – that’s hard. You start reviewing everything in your mind and no matter how much you talk about it, it doesn’t take away the end result. So I just try and be very positive. I try and do the things that are best, eating right, taking vitamins, antioxidants whether it helps or not.

I take one to two ounces of juice every day, it’s a berry juice; also pomegranate juice is very good. You don’t need a 8-ounce glass because of the calories so all you need is to take antioxidant capsules. You can get those from the health food stores. It’s called NAC, but while I’m on this clinical drug trial they don’t allow me to do that. So I just rely on the antioxidant juice and everything.

I haven’t told all of my family. I come from a very large family. None of the others have it. It’s not the familial kind that runs in families and, but two of them know that I am very close to. The only reason they know is because after I had my lung biopsy my husband called them and said, “She made it through the surgery fine. She is doing okay,” and that’s the way they found out. Otherwise, I feel it’s a need to know basis like if I am going to a party I make sure that no one is coughing or ill.

So I do that this way, but I just try and be positive. You know, everyday is wonderful. We are going to try and do what we can. I have lobbied our congressmen in the House of Representatives in Idaho. I got both of them to sign on a bill; HR 1079. I have been lobbying the ones down here in Arizona – two of them have signed on so far and one has said he would not help us at all. When it’s the election time I am going to go out and I am campaigning against this one gentleman to sign onto the bill.

I have gotten a real 101 class in government. Once a bill is introduced you need a 100 co-signers to get it out of committee onto the floor of the House or so it can be debated and get a vote on. We’ve got a 115 as of this morning. So I can say I was instrumental in getting four of those people to sign. I did contact our senator from Idaho. He said that he would sign the bill when it made it out of the House.

So, I am doing as much as I can lobbying for the healthcare bills that will affect us, etc., and you know, when people see me they say, “You don’t look ill,” and that’s exactly what my congressman said and I said, “I wish I could say the same, that I am not ill, but I am and I am going to make the best of it. I am going to go down fighting.”

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