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This is a true story on why you should not meet others with CF. This couple died because of each other. http://people.com/celebrity/wife-in-real-life-fault-in-our-stars-couple-shares-their-love-story/
Thank you!
My nurse coordinator has always told me prograf and cellcept need to be taken on time each day, but if you happen to forget for some reason or another, you can take it no earlier or later than 2 hours off your regular dose time. Always consult with your doctor on this though.
I do...
Duke is a great center. I'm sure you'll be in the care of excellent doctors. We were overwhelmed with the wealth of information the first time I visited. Try not to stress too much about all the tests and knowledge of everything. You'll do fine.
hugs,
Hey Everyone,
I wrote a blog about what my life has been like, as a woman living with CF. It's a lengthly read, but worth it! I promise! Some of the topics I discuss include, relationships & sex, fertility & pregnancy, and appearances & self-confidence.
Check it out-...
My advice is more for psychological assistance. We all need help when life throws us down.
During difficult times, I've found it helpful to read inspirational stories, either fiction or non-fiction. Books soothe my soul and renew my hope for the future.
I have watched TV shows with...
It seems like I just celebrated 10 years breathing free with new lungs and now, I have another reason to celebrate, my new kidney from my mom 10 years ago today!
I wrote a blog about 10 Things I've Learned in 10 years. Check it out! http://acreativenewmie.com/…/celebrating-10-years-with-my-…/
Please vote for my mixed media submission under the name Amber Church for the Rare Diseases Art Contest on Facebook! It will only take a second of your time. Thank you all so much...
I'm happy to share I've been working on a few CF themed crafts that I can't wait to teach you all. CF kids can join me in making "mucus" novelty slime, purple lantern mason jars and a coloring page of 65 roses lungs! Stay tuned for a blog post. Let's have some family fun inside during these hot...
That's a good one! I used to be deaf. I depended on lip reading. Unfortunately, some people refuse to lower their mask for some reason or another. I had one Dr. who I routinely saw every 3 months and she happened to tell me she was sick every single appointment for several years. Therefore, she...
There is pickled flavors for everything! Dill pickle soup, popsicles, chips, pickle juice and even pickle chap stick! LOL Not sure about the chap stick.
The only other thing I can think of is hand washing. Super important! I still see doctor's, nurses, social workers and other medical personal who don't wash their hands upon entering or leaving the room.
Good Luck!
Hugs,
Thank you for the feedback everyone. Bill, I'm also currently enrolled in a Fitbit study at my local clinic. I was given a Fitbit One. It's not a bracelet but can be attached to a clip. I wear it on my shirt. I'm enjoying it so far. It's interesting to see how much I've walked from day to day...
Does anyone own a Fitbit? Do you find it a good motivator to exercise? I would love to join a gym but it's just not in my budget. Are there any sort of games or exercise programs I could move along to at home? With summer quickly approaching it's simply too hot to be walking outside. Any...
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