Journaling has never been a struggle for me. I am ready to complain to my journal so that I don’t bore those around me. There is something to be said for the written word, on paper, with a pencil or pen. Keeping my pain within the confines of a notebook has proven very helpful, especially when getting ready to go to the doctor. I encourage you to start your own journal.

The article below can be found at the following address: http://www.ichelp.org/Default.aspx?tabid=672

Some people find it difficult to talk about pain, to find just the right words to describe what their pain feels like, to remember when it was at its worst, or when they last felt their best.  However, your healthcare provider needs detailed information about your pain to plot out its causes and triggers and build a treatment plan.  Keeping a pain diary can help you keep track of your pain, enhance communication with your healthcare providers, and document progress.

To get started, simply download a free pain diary from the internet or create your own.  Links to three examples of pain diaries can be found below:

• American Cancer Society Pain Diary 
• Resource Guide for People With Pain 
• The AGS Foundation Daily Pain Diary 

Once you have your pain diary, start to record the following:

• where in your body you feel pain
• when the pain occurs (morning/evening/constant)
• the intensity of the pain
• the frequency of episodes
• how long each pain episode lasts
• what activities or times of day are associated with the pain (what activities make it worse or better/when it flares or lessens)
• which pain medications you’re taking (and how frequently)
• whether you get pain relief from a medication (and for how long)

Consistency is the key.  If you make notes in your diary on a regular basis (daily or several times a week), you’ll have a complete picture of your pain experience and patterns will emerge.

• Leave a comment... (0)

I just received this announcement from the American Pain Foundation and thought it important enough to post. American Pain Foundation can be accessed on their website:  http://www.painfoundation.org/

McNeil Consumer Healthcare, the Maker of Children’s Tylenol®, Announces a Voluntary Recall

After discovering the possible contamination with Gram-negative bacteria, Burkholderia cepacia, McNeil Consumer Healthcare, a division of Johnson & Johnson, informed physicians and other providers of the recall in a September 18, 2009 letter. The company reported that no bacteria had been found in finished products, but bacteria were detected in an examination of the bulk materials used to make the medicine.
McNeil cautioned that infection with the bacteria can be serious in high-risk persons, including those with pulmonary disease, cystic fibrosis, or immune systems that are otherwise compromised. Young children and elders using these preparations for pain control should be warned.
The recall covers 21 flavors of its pediatric acetaminophen product, and several cold and cough medications that include acetaminophen, manufactured from April 2008 through June 2008, which includes:

• Children’s Tylenol® Suspension 4 oz. strawberry,

• Children’s Tylenol® Pediatric Suspension 1 oz. cherry

• Infants’ Tylenol® Suspension Drops 1/2 oz. grape

• For the complete list and associated lot numbers, see: http://www.tylenol.com/generic.jhtml?id=tylenol/news/subpchildinfantnews.inc.

Individuals who may have these medicines in their possession should:

• Stop taking this preparation if listed above.

• Contact your health care professional (HCP) if you or your child taking this medication has become suddenly ill

  • Symptoms of exposure can range from no symptoms to severe breathing difficulties especially in those with chronic lung disorders. For more information, visit the CDC website: http://www.cdc.gov/ncidod/dhqp/id_BcepaciaFS.html

• Share this information with your HCP, pharmacist and insurance provider should there be additional questions.

The recall does NOT apply to children’s Tylenol® Meltaways or Junior Strength Tylenol® Meltaways.

McNeil has established a consumer call center at 800-962-5357 for parents or caregivers with questions.

• Leave a comment... (0)

Cholesterol - Myths and Facts

by Dr. Sarah Myhill, MD*
September 23, 2009

Dr. Sarah Myhill, MD, is a UK-based fatigue specialist focused on nutrition and preventive medicine. This article, from her educational patient website, was updated in June 2009.*
_________

There is a general belief that a high fat diet results in high cholesterol, which results in arterial and heart disease. This is a myth put about by the food and pharmaceutical companies to promote low fat foods and cholesterol lowering drugs.

There isn’t a scrap of evidence to support this theory - indeed the single largest culprits in arterial disease are sugars and refined carbohydrates.

Cholesterol is an essential molecule without which we would all be dead. It is the raw material from which many essential molecules are made, including:

• Hormones, in particular the adrenal and sex hormones,

• Vitamin D (which is highly protective against cancer and heart disease),

• Serotonin receptors (which help protect us against depression),

• Bile salts (essential for digesting foods), and so on.

The highest concentrations of cholesterol are found in breast milk, where it is essential for infant nourishment.

read more…

• Leave a comment... (0)

 Social Security Disability Insurance (SSDI) isn’t the only kind of disability insurance available to many people with IC. Frequently, employers provide group disability insurance. But with this type of disability insurance, making and maintaining a successful claim can be even more of a minefield than making a Social Security Disability Insurance (SSDI) claim.

• Get Smart, Get Tough for the Biggest Disability Challenge
• Get Your Doctor’s Support
• Keep a Log
• Don’t Wait to Apply for SSDI
• Consider Whether You Need a Lawyer

Get Smart, Get Tough for the Biggest Disability Challenge
Attorney Jason Newfield, Esq. of Jason & Newfield, PC in Garden City, New York, offers tips that will help you be successful in your claim. He explained why group disability insurance claims can be such a challenge. The law that governs these employer-provided group insurance plans is the Employee Retirement Income Security Act (ERISA). Although it was created to benefit employees, it “has been turned on its head by the insurance companies and exploited by them to essentially deny and terminate legitimate claims,” said Mr. Newfield. The law gives significant advantages to employers and insurance companies. In general, instead of deciding whether you are disabled, a judge—not a jury— decides whether the claims administrator abused its discretion in handling the claim based on your plan. Usually, the judge can look only at the record that was in front of the plan administrator. That doesn’t give a litigator the advantage of discovery, which means, “You don’t get to peel the layers off the onion,” as Mr. Newfield explained.

read more…

• Leave a comment... (0)

It’s not too late to listen to all of the presentations for this week. What an array of topics and inspired speakers you have to choose from. And it’s all free! Here’s the info you need to access this wonderful, week long conference:

 Join us for a free virtual conference. Just go to www.invisibleillnessconference.com and listen on your speakers. All programs will be archvived to listen to later and also available on iTunes.

Did you know this event is the annual outreach of Rest Ministries? You can read more here
>Christian Illness Ministry Sponsors 5-Day Virtual Conference Online

All times are pacific time, USA
Listen here http://www.invisibleillnessconference.com

• Leave a comment... (0)

Join us for a free virtual conference. Just go to www.invisibleillnessconference.com and listen on your speakers. All programs will be archvived to listen to later and also available on iTunes.

Did you know this event is the annual outreach of Rest Ministries? You can read more here
>Christian Illness Ministry Sponsors 5-Day Virtual Conference Online

All times are pacific time, USA
Listen here http://www.invisibleillnessconference.com

SEPT 14

MONDAY - 9 AM
Understanding How we Uniquely Deal with Difficulties in Life
Georgia Shaffer

MONDAY - 12 PM
Finding Health Insurance Coverage with a Pre-existing Condition
Jennifer Jaff

MONDAY - 3 PM
Super Foods for Super-Natural Health
Joanna Faillace

MONDAY - 5:30 PM
Hearts of Gratitude and Joy
Maureen Pratt

SEPT 15

TUESDAY 9 AM
Coping with Chronic Illness in Your Marriage
Bill & Pam Farrell

TUESDAY 12 PM
Coping with Crises on Top of Chronic
Jennifer Saake & Lisa Copen

TUESDAY 3 PM
How to Start a Business When You are Chronically Ill
Kirsten Borrink

TUESDAY 5:30 PM
To to Be Announced
Kelly Rouba

SEPT 16

WEDNESDAY 9 AM
It’s OK to say NO: Building Healthy Boundaries
Jenni Prokopy

WEDNESDAY 12 PM
Parenting When You are Chronically Ill - Chaos and Confessions
Dena Dyer, talking with Lisa Copen

WEDNESDAY 3 PM
Simplifying Your Home and Housework
Marcia Ramsland

WEDNESDAY 5:30 PM
Real Talk About Men and Chronic Illness
Jeff Kenyon

SEPT 17

THURSDAY 9 AM
Find the Job You Desire and Can Do
Rosalind Joffe

THURSDAY 12 PM
When Your Child is Chronically Ill
Jolene Philo

THURSDAY 3 PM
Managing College with a Chronic Illness
Lynn Royster

THURSDAY 5:30 PM
Helping Others Understand Your Pain
Karen Richards

SEPT 18

FRIDAY 9 AM
Applying and Winning Disability Assistance When You Are Chronically Ill
Scott Davis

FRIDAY 12 PM
Being a Teenager with a Chronic Illness
Naomi Kingery

FRIDAY 3 PM
Surgery Preparation
Curtis Dean Hall

FRIDAY 5:30 PM
Closing workshop
Lisa Copen and guests

STAY IN TOUCH
with everything that is going on, any last minute schedule changes and more by signing up for II Week updates!

• Leave a comment... (0)

Today, Friday, September 11, 2009, is a day to reflect on what was done to our country and done to our people eight years ago. Funny how I tried to find news tapes on our nation honoring this day; but I found very little. Or maybe it’s because once glimpsing a few you-tube videos made my heart clenched, just like it did eight years ago, with tears coming to my eyes, and memories of the horror became horror again and I could bear no more.

I want to honor those who died and those who lived through that harrowing day and the days after. I’m home and disabled, so I can’t fly a flag or participate in a community service. If you happen to wander through my blog site today–I remember.

And by remembering I honor those who are sacrificing and suffering today in far lands. So bravo to the women and men who fight for an ideal called democracy. May our rights be preserved and our children learn that 9-11 should not be forgotten.

I’ll never forget.

• Leave a comment... (0)

Chronically Ill Are Perfect Audience for
Virtual Conference, September 14-18

A virtual conference is not the results of budget cuts for National Invisible Chronic Illness Awareness Week, but the result of what benefits the most people who live with illness.

SEPT 2009-SAN DIEGO - Hard beds, traveling expenses, long walks to conference rooms, peers going overboard on the perfume, and extreme fatigue are predictably part of your average conference. For the chronically ill, however, these inconveniences oftentimes make attending an actual conference impossible. National Invisible Chronic Illness Awareness Week celebrates its seventh year, and with the power of social networking, 009’s “virtual” conference September 14-18, 2009 is sure to be a success.

“I can only leave the house once a week, twice if I am really lucky, so a weeklong conference is normally impossible for me,” says Juliann Krute who lives with Ehlers-Danlos Syndrome and many other illnesses. “Having a conference that I can attend-even if I am in too much pain to get out of bed-is fantastic!”

The conference will feature twenty live seminars via Blog Talk Radio that anyone around the globe can listen to LIVE or archived. The 2008 workshops have had over 12,000 listeners and are also available on iTunes.

Topics for 2009’s conference include:

• Applying and Winning Disability Assistance When You Are Chronically Ill
  
• Managing College with a Chronic Illness
  
• Find the Job You Desire and Can Do
  
• It’s OK to say NO: Building Healthy Boundaries
  
• Coping with Chronic Illness in Your Marriage

[ See more here ]

Guest speakers are some of the top chronic illness advocates online today including Jenni Prokopy of chronicababe.com; Rosalind Joffe of keepworkinggirlfriend.com; Maureen Pratt, author of Peace in the Storm, and Christine Miserandino of butyoudontlooksick.com. They are joined by.Kelly Rouba, former Ms. Wheelchair NJ 2007, and best-selling authors on marriage, Bill and Pam Farrel.

Invisible Illness Week was founded by and is sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill.

Lisa Copen, 40, founder of Rest Ministries and creator behind National Invisible Chronic Illness Awareness Week says, “Regardless of where one’s spiritual ties are, there is an fundamental human desire to feel understood, to feel like those you love have some idea about what you are going through.” Copen, who is explored this in her book Why Can’t I Make People Understand: Discovering the Validation Those With Chronic Illness Seek and Why says, “One of the most difficult adjustments to illness is that you feel life is passing you by and no one around you even realizes it. We hope through our conference we can provide a place where people find the true source of being validated in their pain, how to live joyfully despite their illness, and of course, we want to increase awareness about how many suffer silently. Like our theme says, ‘A Little Help Gives a Lot of Hope.’ It really does.”

For more details about the free conference and other resources visit www.invisibleillnessweek.com

• Leave a comment... (0)

I came across this really great article addressing posture issues. I don’t know about you, but I have a hard time not slumping, and I tense a lot when I think pain is near due to sounds, smells, light, or temperature. The article below  is part of Virginia Beach’s Info 101 and is well worth reading.

The human body is absolutely amazing.  It endures poor nutrition, obsessive work habits, smoking, inadequate hydration, emotional traumas, and other  manifestations we bring upon our selves.

In addition, our body must take on the everyday strains we cannot control.  Improper occupational positions, injuries, frequent weather changes, relative humidity, and personal tragedies dictate our lifestyles without control. 

read more…

• Leave a comment... (0)

I don’t know if this has happened to you, but my experience this a.m. leaves me a bit shaken. I have my medications in containers by day and by time of day. Imagine my surprise on arising at 6:30 a.m., reaching for my Fri. dose, and discovering that the dose is missing… so now was today Friday or Sat.? A scrambling through my foggy brain assured me that I had no idea… so pulling out my other containers I determined that it was indeed Friday (none of those doses had been taken), and I had taken my Friday’s a.m. dose sometime in the middle of the night with no memory whatsoever of having done so.

I find this event an example of one of the few times I miss living with another person. I can’t just holler out, “What day is it?” because my cat doesn’t know. Nor can I discuss the merit of when to take the next dose of medication since I don’t know when I took the last. And then there’s the sleep-walking. Another person could turn me around and point me back to the bed, while my cat could care less (she has more of the bed while I’m gone).

These are not events I can discuss with my health provider since I hardly belong in some institution at the age of 61. But my nocternal wanderings indeed bother me. And locking up medications just increase the probability that I will forget to take them at the proper time–as in, “out of sight, out of mind!” No, I’m not out of my mind yet, but some days I have to pause and consider… am I?

• Leave a comment... (0)