Recent content by imported_MaggieB

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    Painting and CF ( artistic CF input):)

    Hi! I’m 44 w/CF, and acrylics have never bothered me! Oils smell strong, but acrylics are their CF-friendly counterparts! Let there be art!! :)
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    For people taking Orkambi

    I'm starting today, and I'm a bit terrified! I'll keep you posted!
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    How do you avoid the pity party when you tell people you have CF?

    I totally agree with the last poster. Tell everyone, limit the info to what you feel comfortable with, and don't be ashamed. CF is your thing, they have their things. Don't expect a pity party, but allow them to do what they have to do. Good luck!
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    really sick guys in hospital

    Good luck Cam! We're out here thinking of you!!
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    My grandson is in the Hospital.. I am having one of those days :(

    Hi! I'll be thinking of you guys.
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    Getting Port next week: words of wisdom

    I got my port a few years ago, and I love it. It took many months before I stopped noticing it in my upper left chest. It has been INCREDIBLY useful, in that I access it myself once a week to rehydrate, and I think it's kept me out of the hospital many times. I exercise and do yoga, and the...
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    Those who have applied to disability

    I got denied initially, and then got a lawyer and was immediately approved, with a judge's letter that basically said, "Social Security, are you crazy? Of COURSE this woman should be on disability!" It was very validating. Good luck to you!
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    Do those with CF have difficulty digesting protein?

    According to my doctors, we have trouble with both protein and fat. Good luck!
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    Need friends as I struggle thru this thing called life

    Hi, Hannah, just checking in. How are you doing with life and CF now? Hope you are well and happy. All the best, Maggie
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    First Tune Up

    Sorry to hear about your first tune-up, and amazed you made it this far without one. Good luck for the future!!
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    Help with Sinuses. Recommendations needed to break up sinus junk!

    Hey, O Salty One, I don't have a lot of advice more than these folks. But I wanted to say that I had, probably 9 or 10 sinus surgeries between 14 and 25 years old, and then it just slowed down. I've only had three since I was 25, I think (15 years ago). That's probably small comfort, but I...
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    Was it hard leaving home?

    Hey. I went away to college (a six or seven hour drive), and I found it hard at first. A month after I got to college, I had to go into the hospital for a bowel obstruction, and it was my first time advocating for myself 100%. In general, however, I found it wonderful to see that I could do...
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    My Facebook rant to all those people who annoy me about Cystic Fibrosis

    Hey, sometimes a rant is in order. Allow yourself to have all those feelings, and then, like Cardinal says above, fight, fight, fight. Also, remember that most people don't know about CF, so they ask dumb questions and pretend it doesn't exist. They're just scared they'll lose you. Be...
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    When to get a PORT

    I got a port put in Oct 2011, and it was one of the best CF decisions I ever made. I was in the hospital on IVs more than I wanted, and I was getting dehydrated at the drop of a hat. After a few weeks on it, I got some of the infusion nurses to teach me how to access it myself, and now I...
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    how common is it to get kidney stones when you have CF.?

    Hey--I got them frequently until three years ago when I had some nurses teach me how to access my own port. Now (with my doctor's blessing, of course) I gravity infuse three bags a week. MUCH better on the kidney stones! Good luck. Just as a side note, my Mom's borne two children and had...
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