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CFMomof2

CFMomof2

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Lisa C. Greene is the mother of two children with cystic fibrosis, an author and public speaker. She wrote the award-winning book “Parenting Children with Health Issues” with Foster Cline, MD and published by Love and Logic.

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  1. Thinking about the "Twelve Days of Christmas" and the upcoming holiday season, it strikes me how perfect the timing is for this particular holiday. At the end of the year, it's a time for reflection about the blessings, joys, and challenges experienced through the year past. And, with a New Year approaching, it's a time to look ahead with hope and anticipation for what the future brings. As I reflect on the hard year that our family has personally experienced, like so many other families during these tough times, it's tempting for me to fix my gaze on the challenges: my husband's job struggles, the financial problems, and the kids' health challenges (both have cystic fibrosis). And, then of course, the news reports don't help much as bad news screams from every street corner. It's hard to get away from it all! And then I think about the song, "The Twelve Days of Christmas" and it reminds me of all the many blessings I have to be thankful for. I am thankful that my true love isn't giving me a bunch of birds, maids, lords, and drummers. Although five golden rings do sound nice.... And I am thankful that we don't live in the 1700's which is when it is thought this song originated. Talk about tough times! Life then was primarily small farming communities. What you raised or grew, you ate. No electricity, running water, plumbing, internet, or Safeway. Imagine that. Probably half of the population lived at the barest survival level. The poorest families lived together, packed into just one room. There was no welfare or unemployment checks or SSI. If the king or queen didn't like you, off with your head! Of course there was plenty of civil unrest and war: both the French and the American Revolutions occurred during this time. And then there was the medical "system." Until 1745, barbers performed surgical operations. Yup, you read that right. "Will you be getting your hair cut today or having your appendix removed?" Ewww! In fact, did you know that the red and white barber pole is thought to represent the "blood and bandages" associated with those early dual-role days? Smallpox was a major scourge during these times. It killed 400,000 Europeans during the 1700's alone and quacks abounded. Because medical knowledge was so limited, desperate people were vulnerable to the promises made by slick and sleazy characters hence the term: "snake oil salesman." One of the most common treatments for many ailments was bathing in spas. Or drinking spa water. Ewww again! Was that before or after everyone had their weekly bath? Bringing this to a more personal level, babies with CF died fairly soon after birth. But today, those with CF can be very hopeful about living a full, rich life due to the many medical advances we continue to see. So, as hard as this year has been, in light of the time and place we live in now, I am thankful. Thankful for my faith, my family and friends, my work, my country, and my freedom. And, I am thankful for a wonderful community of people like you, our doctors, and the many others who dedicate their passions, skills, and lives to helping those of us who live with CF to live better. Thank you. And I'm also thankful for a "partridge in a pear tree" for helping me keep things in perspective.
  2. Sue has a serious chronic medical condition and visits many different doctors each month. She is on top of her medical situation and sometimes brings in new research papers to discuss with her team. When a new doctor prescribed her a medication without explaining what and why, she gently but firmly told him, "I am happy to follow doctor's orders as long as I understand them. When would be a good time to answer my questions?" Sue is an advocate. She seeks accurate medical facts and information. She empowers herself with knowledge. But knowledge is only half of the story. What good is knowledge without wisdom? Wisdom is knowing how to use knowledge effectively. Sue sees herself and her doctors as a team. She believes in a collaborative approach to her medical care. But her style is not without conflict. There have been times when busy doctors with a brusque bedside manner didn't particularly like being "second-guessed." But Sue has a great way about her and it's hard not to like her. She is able to detect when she is starting to get some resistance and goes into her "Conflict Resolution Mode": Step 1. Show empathy and understanding for the other person's position. "Ohhh, it looks like you are super busy today and probably don't have time for my questions. I can understand that." Step 2. State your position using "AND" and "I" language: "And I can take much better care of myself if I understand the reasons behind your decisions here." Step 3. Suggest alternatives: "Is there a time that we could talk about this later by phone or even email? I won't take much of your time, I promise. I just have a few basic questions about what you are suggesting. Thank you for being willing to help me out." Sue is a successful advocate for her healthcare because: She is knowledgeable about her medical condition. She actively seeks accurate information from reliable sources. She stands up for herself and isn't afraid to be assertive. She is calm and respectful even in the face of resistance or conflict. She doesn't take abrupt (some say "rude") medical professionals personally. She is not demanding or threatening. She doesn't tell others what they have to do but instead shares what her needs are. She understands that having an effective approach is in her own best interest so she works hard at learning good communication skills. She tries to be appreciative of the doctor's knowledge and expertise (even if she doesn't like the doctor as a person). She understands that being an advocate is not the same as being pushy or aggressive. She uses a collaborative approach to solving problems. Sue knows that her good health is ultimately up to her and the choices she makes. And, as an effective advocate, she is prepared and empowered to make good decisions that will impact her life, and those who love her, for years to come.
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