Monday, September 10, 2007

Looking For More About CF?

This week, September 10-16, is National Invisible Chronic Illness Awareness Week. In an effort to educate you about my invisible illness, I'm providing the following links. It is my hope that as you learn more about cystic fibrosis (CF), you will see why I and others who are affected by CF need you to help us find a cure. Any donations you make to the Cystic Fibrosis Foundation are tax deductible. $0.90 of every dollar donated goes directly to research. Please help CF stand for Cure Found!

Articles to Check Out:

Cystic Fibrosis Explained in Brief

A Day in the Life of an Adult with Cystic Fibrosis

Reflections on Growing Up with CF

Cystic Fibrosis Steals Time and Breath from Me (the written version of my speech at the Cystic Fibrosis Foundation's Annual Spring Gala, 2007.

Diagnosing CF: How a Sweat Test is Done

Preventing Pulmonary Exacerbation (Lung Infections) in CF

Understanding Spirometry to Measure Lung Function

Progression, Treatment and Prevention of Bowel Obstruction in Cystic Fibrosis

Cystic Fibrosis and Goal Setting

An Unexpected Kiss (the true story of my first date with the man who is now my husband!

Orphan Drugs Increase Options for People with CF

Understanding Pneumothorax (collapsed lung)

Also, don't forget to check out my other blogs:

Pools of Grace (Scripture and meditation)
Understanding Cystic Fibrosis

I welcome any comments or questions you may have about CF. Just leave me a comment here on MySpace, or on the blogs, or email me directly poolsofgrace at gmail dot com.

Warmest Regards!

Sunday, September 09, 2007

I Get Knocked Down...but I Get up Again

I spent a lot of time watching my denizens of the deep last night. I threw out my back while cleaning Gimli's cage, so I spent most of the night laid out in the recliner. I didn't know I could hurt this badly. Eventually I got some relief by taking NyQuil to knock me out. The worst part of being in that much pain is that I can't cough effectively. Coughing aggravates the muscle and it's practically unbearable. It's better today, but I'm still walking and moving very gingerly.

I was very frustrated to have a non-CF malady to deal with. Shortness of breath, antibiotics, IVs, blood draws...I can handle all of that without blinking. But this back injury is completely out of my realm. I haven't been dealing with it with as much grace as I should have. It was tempting to want to bail out on going to church. But the more I thought about it, the more I realized that I had to actively choose to go to church. I figured I could sit in the recliner and be in pain, or I could sit in the church pew, be in pain, but at least be feeding my soul.

So tonight I'm sitting here on the couch with one of those activated heat therapy wraps. It's supposed to last for 8 hours. We'll see. It does seem to be helping a little.

Friday, September 07, 2007

National Alcohol & Drug Addiction Recovery Month

National Alcohol & Drug Addiction Recovery Month

As a person who struggles with chronic illness, I need to take dozens of prescription medications just to function each day. Without them I not only don't feel well, but I have great difficulty keeping respiratory infections away. I simply could not fathom the concept of "recreational" drug use. It was completely beyond me why anyone would willingly put illicit drugs into his or her body.

I was ignorant and judgmental of those who struggle with substance abuse and addiction.

I have since learned that people abuse drugs not because they want to "feel good" but because they prefer not to feel at all. Something in life is too much of a burden (emotionally, spiritually, physically) and drugs offer an escape. As one person once put it "drugs aren't my problem; drugs are my solution."

Alcohol and substance abuse is running rampant in today's world. Individuals as young as 12 years old are using cocaine, psychotropic pain medications, Ecstasy, marijuana, LSD...the list goes on. Programs like D.A.R.E. (Drug Abuse Resistance Education) are failing. Drug abuse in affluent populations, particularly among teens is on the rise. Drug-free homes are fast becoming a mere myth. Parents who tell themselves "it won't happen to MY kid" need to educate themselves about what's out there.

Here are some great resources to help you get started:

2006 National Survey on Drug Use and Health

Addiction Overcome

Alcohol and Drug Addiction Happens in the Best of Families

Christian Recovery Ministries

Medication Assisted Treatment

Words Can Work

Monday, September 03, 2007

My Personality Type: ESTJ

I'm an ESTJ

I did a Google search to see which celebrities share my personality type. Among them are Billy Graham, LBJ, Elliot Ness, Daniel Craig (WOO HOO!), Bruce Willis, Angela Lansbury and Laura Linney. Not a bad lineup eh?

The Guardian

You're a natural leader and quick, logical decision maker.
Goals are important in your life, and you take many steps to acheive them.
You enjoy interacting with others, mostly through work related activities.
Your high energy level means you are great at getting things done!

ESTJs thrive on order and continuity. Being extraverted, their focus involves organization of people, which translates into supervision. While ENTJs enjoy organizing and mobilizing people according to their own theories and tactically based agendas, ESTJs are content to enforce "the rules," often dictated by tradition or handed down from a higher authority.

ESTJs are joiners. They seek out like-minded companions in clubs, civic groups, churches and other service organizations. The need for belonging is woven into the fiber of SJs. The family likewise is a central focus for ESTJs, and attendance at such events as weddings, funerals and family reunions is obligatory.

Tradition is important to the ESTJ. Holidays, birthdays and other annual celebrations are remembered and observed often religiously by this type. The ESTJ is inclined to seek out his roots, to trace the family heritage back to honored ancestors both for a sense of family respectability and for a sense of security and belonging.

Service, the tangible expression of responsibility, is another key focus for ESTJs. They love to provide and to receive good service. The ESTJ merchant who provides dependable service has done much to enhance her self image.

ESTJs have an acute sense for orthodoxy. Much of their evaluation of persons and activities reflects their strong sense of what is "normal" and what isn't. ESTJ humor is frequently centered around something or someone being off center or behaving abnormally.

ESTJs promote the work ethic. Power, position and prestige should be worked for and earned. Laziness is rarely viewed with ambivalence nor benevolence by this type.

Sunday, September 02, 2007

Almost 50% of Americans Have a Chronic Condition

96% of Illness is Invisible – Many Look Good but Feel Terrible

SAN DIEGO (September, 2007) Nearly 1 in 2 Americans has a chronic condition, and 96% of them live with an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. Sixty percent are between the ages of 18 and 64.

September 10-16, 2007 is National Invisible Chronic Illness Awareness Week. The theme is "Living with chronic illness is a roller coaster. Help a friend hold on!" It is a major public awareness campaign sponsored by Rest Ministries, an organization that offers a supportive environment for those who live with chronic illness or pain.

Paul J. Donoghue and Mary Siegel, co-sponsors of the week and authors of "Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness" say, "Invisible chronic illnesses (ICI) have symptoms that are difficult to see and impossible to measure such as pain and fatigue. So those with ICI frequently encounter not compassion and support but impatience and skepticism from physicians and loved ones."

“Living with an illness that is invisible to those around us can often have a more devastating affect on our emotional health than the physical pain,” explains Lisa Copen, 37, editor of HopeKeepers Magazine who lives with rheumatoid arthritis and fibromyalgia. “Each day we must choose to have hope, despite how medications and alternative treatments may help or hinder us.”

Copen is the author of a book, "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." “Part of our campaign is to encourage people to ‘care enough to be informed,” says Copen. “Just because someone isn’t using a wheelchair doesn’t mean that she doesn’t have a disability. Friends and family of those with chronic illness care a great deal about what their loved ones are going through, but oftentimes the invisibility of the illness sets up an environment for misunderstandings and even doubt about the validity of the illness. We hope to increase awareness of how many people ‘look great’ but are hurting deeply.”

Outreach includes various events: the distribution of free literature such as a 5.5 x 8.5 card with multiple ways to encourage a chronically ill friend. Other resources include "You Look So Good: A Guide to Understanding and Encouraging People With Chronic, Debilitating Illness and Pain."

Fifteen online seminars will be held during the week featuring chronic illness coaches, authors, nutritionists and other professionals. Promotional items like t-shirts, bumper stickers and bracelets are available.

For a complete list of events and resources visit or call 888-751-7378.

“The feeling of knowing that one’s illness and pain is acknowledged can have a great impact on how a person copes with living with illness,” says Copen. “We hope that by recognizing people with illness rarely feel as good as they look, they will begin to feel better understood, leading them to a more invigorating life!”


INTERESTING FACT: HopeKeepers Magazine is published by the sponsor of Rest Ministries. It’s the only Christian consumer magazine specifically written for people in chronic pain.

BOOK INFO: Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend; Author: Lisa Copen; dimensions: 4.25 x 7 in.; 94 pages; Rest Ministries Publishers 2005; ISBN 0-9716600-6-9.

*(Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation.).

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