Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 i think this post should be saved in someones file too what you said about the family doc asking you questions on my last visit, he asked about the oximeter and where i bought it i wonder if he will have one the next time i visit him Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Writing our story....To: Breathe-Support Date: Wednesday, November 11, 2009, 5:27 AM I have been reading the posts as I always do. Sometimes, I am just not emotionally into responding to some posts, sometimes I just don't think I am the best to respond to some questions, and sometimes my response has already been posted by someone else. I do like the idea of the book(s). The story has to get out and I haven't found anything comprehensive on what might be expected stages of this freaking disease. I have searched the net as well as the medical section of book stores and libraries. The general pulmonologist community seems to be relatively uninformed sometimes as they seem to be a constant form of frustration and angst. My regular GP picks my brain every time I go in for routine medical checkups. She is impressed with what I have picked up from this board and from surfing the net. There is a lot of misinformation out there. The doctors at the 'Centers of Excellence' at least know enough to say there is so much they do not know and are usually very positive in helping us improve our quality of life in as many ways as possible. The lessons learned by many of us easily spill over into the common sense realm of taking our own advocacy in hand. I am teaching my daughter to be more physically self-aware and health smart in her choices. None of us know how long the disease will run with us and writing the book(s) seem to be one way of leaving a legacy as there are not a lot of avenues out there for us. The results of the poll(s) will prove it out as well. Our diversity is our strength. Our stories run the gamut.Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009 Quote Link to comment Share on other sites More sharing options...
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