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  1. R

    Missing you

    Thank you all so much, it really does help to have so much support from the CF community. I miss him so much sometimes I am ok and at peace, other times I feel like I just cannot stand the pain. I miss his smile, his humor. Him editing my papers watching American I . I was at a restaurant today...
  2. R

    Missing you

    Thank you all for the support, I just feel lost , Michael was so young only 23 that's hard to except, I just can't believe he is gone, he was just here we were watching tv, laughing, eating and living together. How do I just keep living life with out my son. He was the center of my universe
  3. R

    Missing you

    thank everyone for your support
  4. R

    Missing you

    Dear son, I miss you sooooo much! Michael you have been gone just over a week and my heart does not want to except that you are gone . You were the best son ever and way to young To go sweet heart! G
  5. R

    Private long-term disability interview

    My son had to do a test like that for ssd just remember you are sooooo sick make sure to rember you can not run you get winded easily, cough allot don't sleep, and bring all your meds In a bag :) good luck
  6. R

    Won't take medactions

    Does he have allot of infections or hospitalizAtions. What he does today may not effect him untill he is older, I would have a dr talk to him about antibiotic resistant bacteria, does he ever take even one dose of his antibiotics?slipping medication and treatments will only get him closer to end...
  7. R

    Pic changes

    Are you talking about a port a cath or a pic line that is the port acath accessed . A pic line my son Comfort Care So I did it I said those five magical words "I CHOOSE 100% COMFORT CARE" it doesn't seem like something big and I don't know why I made it a bigger thing than it was but I said it...
  8. R

    Someone who wants a penpal ?

    I don't have cf but my son does he is 23 getting ready for a double lung transplant and a liver transplant I would love someone to talk to , also I was born in 1970 :)
  9. R

    What song do you relate your CF fight to

    Be OK! I just want to be ok be ok be ok today
  10. R

    I used an E Cig today, I'm a bit worried

    ok so doesnt your friend know you have cf? he shouldn't be offering you cigs of any kind . but dont worry to much it is vapor, I quit smoking using e-cigs about 4years ago, before they were the rage everyone laughed at my toy cig but now look. any ways my husband is now trying to quit smoking...
  11. R

    Has anyone had any experience with using public Steam Rooms and Saunas

    our cf center compared sitting in public hot tubs like sitting in a bowl of bacteria soup which you are inhaling, ick I am not sure about saunas, but stay away from public hot tubs <3 I know they are so tempting, before we knew our son would always go hang out in the hot tub at our condo complex...
  12. R

    What song do you relate your CF fight to

    Live to breath this is a great way to think of it (L) thank you
  13. R

    What song do you relate your CF fight to

    Pink robots and fight song by the flaming lips. the fight song reminds me of my son it talks about a boy who has to face things he shouldn't have to face. and that life is ever changing but the one thing that stays the same is the the sun sun goes up and sun down and everything really just...
  14. R

    Yoga good

    free on line Yoga classes sweetninis there is an excellent cite called DoYogawithme.com by David Procyshyn he is great. the video classes are excellent with a very range to choose from and they are all free! my son has increased his lung function which is a big deal but also his range of motion...
  15. R

    Yoga good

    My son 23 w cf started a few months back didn't think he would like it but he really digs it! Yae one for mom, he like all the stretching and he is working on what he calls the CF slouch, the fish pose is my favorite for us because it helps to increase lung capacity! Always working on the Pfts...
  16. R

    Exercises to correct that CF-related slouch?

    We were told by pt to go to a corner a push on each wall with both hands for about 10 min a day, also might wanna try yoga there are lots of great videos out and it is all about the breathing, strength ing the core and stretching everything back into place and just 20 min a day does wonders.
  17. R

    Starting the evaluation for transplant

    Counseling helped mike alot he got alot off his chest , he had feelings I had no idea about because he kept them to his self. The heart breaking was that he felt like a burden, broke my heart to hear that but were able to get rid those foolish notions .and he now knows he has only enriched...
  18. R

    Starting the evaluation for transplant

    Thanks kayrave that is how I feel. It took him a little while but he is coming around and I really think he could except it as a precautionary step thank you for your prayers back at ya I really do feel god is leading us through this.
  19. R

    Starting the evaluation for transplant

    Thanks sorry i havent been on in a while just been very busy Mike has just lost all the hearing in his right ear caused by the myosin drugs so his options have now been reduced unfortunatly But I don't think he has been on ceferazone or ceftazdime so thanks I will ask his dr. He has an apt on...
  20. R

    Starting the evaluation for transplant

    Thank you so much for responding with honesty and advise. I will follow it, the dr's haven't given the word yet they have just told us any time now it is coming and to get comfortable with the idea, ya right. they did say if we wanted to start talking to the transplant team, they would set it...
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