Thursday, May 1, 2014

Dear Nobody: The True Diary of Mary Rose: (edited) Gillian McCain & Legs McNeil


Genre: Contemporary Young Adult Non-Fiction
Publication Date: April 1, 2014
Publisher: Sourcebooks Fire
Page Count: 336
Goodreads Synopsis: Go Ask Alice was a hoax. But Dear Nobody is a true teen diary so raw and so edgy its authenticity rings off every page

"I am a freak."The words and drawings of Mary Rose present a gritty, powerful, no-holds-barred true experience of a teen girl so desperate to be loved, so eager to fit in that she'll go to extremes that could cost her her life.This is not a story about addiction. Or sexual promiscuity. Or cystic fibrosis. It's the story of a young woman with a powerful will to live, who more than anything wants to be heard...and loved.This compelling, emotional account ensures her voice will not be forgotten



Last week, I posted my review of Dear Nobody, and got some wonderful responses. If you have read the review, you will know that one of Mary Rose's many struggles was her battle with Cystic Fibrosis, and since May is Cystic Fibrosis Awareness Month, the people running the Dear Nobody Street Team thought it would be nice if us street teamers shared some information about Mary Rose's disease. Make sure to scroll all the way down to see a Youtube playlist of songs I listen to in order to cope with the inevitable drama that comes with being a teenager.

The following statistics and information have been taken from the Cystic Fibrosis Foundation website.  
Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Symptoms of Cystic Fibrosis:
People with CF can have a variety of symptoms, including:
  • very salty-tasting skin;
  • persistent coughing, at times with phlegm;
  • frequent lung infections;
  • wheezing or shortness of breath;
  • poor growth/weight gain in spite of a good appetite;
  • frequent greasy, bulky stools or difficulty in bowel movements.
Statistics:
  • About 1,000 new cases of cystic fibrosis are diagnosed each year.
  • More than 70% of patients are diagnosed by age two.
  • More than 45% of the CF patient population is age 18 or older.
  • The predicted median age of survival for a person with CF is in the early 40s.
Tips for Optimal Health:
  • Avoid the spread of germs
  • Watch your diet – high calorie and high fat diet for those with CF is essential
  • Take pancreatic enzyme supplements in addition to vitamin supplements
  • Keep sugar in check
  • Take care of your lung health by performing lung exercises

Resources for Patients with Cystic Fibrosis
  • CF Patient Assistance Foundation (CFPAF) - The CFPAF helps people with CF afford the medications and devices they need to manage their disease.
  • Social Security Project (SSP) - A CFPAF-sponsored program that helps people with cystic fibrosis apply for Supplemental Security Income (SSI) and Social Security Disability Income (SSDI) benefits.
  • CFF Case Management & Technical Assistance - A team of case managers that support CF care centers and people with CF to understand and navigate insurance, reimbursement and coverage issues. 
  • Patient Assistance Resource Library - An online database that provides documents, template letters and other tools for people with CF, caregivers and insurers.
  • CF Legal Information Hotline - A resource sponsored by the CF Foundation that provides free information about the laws that protect the rights of individuals with CF.
  • CFF Mutation Analysis Program (MAP) - A free and confidential genetic testing program for people with a confirmed diagnosis of cystic fibrosis to help make informed decisions about treatment options.
  • Spanish-Language Materials - Information about the Patient Assistance Resource Center, and the services provided, have been translated into Spanish and are available as handouts.

The above information has been taken from the Cystic Fibrosis Foundation website.  For more information, visit them at http://www.cff.org/.

Playlist
All I did to create this playlist was scroll down my various spotify ones, and pick out the ones that I played specifically when I am sad, or need cheering up. If I could, I would probably list around 100 songs from the past month alone, but I know you don't want to be here all day. Anyway, I consider my taste in music pretty diverse, from country to pop to alternative and everything in between. 
I'm crossing my fingers that this link leads you to where you need to go for my Youtube playlist, if not, I have each song and artist linked with a youtube video below.

This Town - Clare Bowen & Charles Esten

How You Learn to Live Along - Jonathan Jackson

Black Roses - Clare Bowen

The End of the Day - Connie Britton & Charles Esten

When the Right One Comes Along - Clare Bowen & Sam Palladio

Change Your Mind - Clare Bowen & Sam Palladio

Invisible - Hunter Hayes

{Cover} Let Her Go - Passenger: Alexi Blue

I Bet You Don't Curse God - Christina Grimmie

Set Fire to the Third Bar: Snow Patrol

Think of You - Christina Grimmie

Hall of Fame - The Script Ft. Will.i.am

The Lumineers - Dead Sea

The Lumineers - Slow it Down

Perfect - Pink

Christina Aguilera - Beautiful

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