LIFE IS A CHOICE, Make it a good one!

Nurse Reveals the Top 5 Regrets People Make on Their Deathbed

(originally written by Bronnie Ware)

For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives.

People grow a lot when they are faced with their own mortality. I learnt never to underestimate someone’s capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.

When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.

This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

It is very important to try and honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.

2. I wish I didn’t work so hard.

This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

3. I wish I’d had the courage to express my feelings.

Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.

We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.

4. I wish I had stayed in touch with my friends.

Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

5. I wish that I had let myself be happier.

This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.

When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.

Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.

 

Fibro Fact Sheet

Fact Sheet

Fibromyalgia (pronounced fy-bro-my-AL-ja) is a complex chronic pain disorder that affects an estimated 10 million Americans. While it occurs most often in women (80% Women – 20% Men), but italso strikes men and children, and all ethnic backgrounds.  For people with severe symptoms, fibromyalgia (FM) can be extremely debilitating and interfere with basic daily activities.  Fibromyalgia is a condition which appears to involve disordered central afferent processing.  This processing includes neuroplasticity (a physical change in the brain) that engages regions of the brain abnormally in processing external stimuli.  The cause of FM remains uncertain.

Diagnosis:

  • The FM diagnostic criteria, established by the American College of Rheumatology (ACR) in 1990, includes a history of widespread pain in all four quadrants of the body for a minimum duration of three months, and pain (not only tenderness) in at least 11 of the 18 designated tender points when 4 kg/cm2 or less pressure is applied.
  • In 2010, focus on the tender points was replaced by the American College of Rheumatology with physician physical and interview examinations, including a widespread pain index (WPI) of the number of painful body regions.  A diagnosis also includes scoring of cognitive symptoms, un-refreshed sleep, fatigue, and the number of of somatic (physical) symptoms. The category scoring is summed to create a symptom severity (SS) scale.  The combination of the SSC scale score and the WPI indicate a diagnosis of fibromyalgia where WPI > 7 and SS > 5.
  • Using either 1990 or 2010 criteria, or both, is acceptable to make a diagnosis of FM.
  • Since people with FM tend to look healthy and conventional tests are typically normal, a physician knowledgeable about the disorder is necessary to make a diagnosis.
  • Physicians should rule out other causes of the symptoms before making a diagnosis of fibromyalgia.

Symptoms:

  • Fibromyalgia is a condition which appears to involve disordered central afferent processing.  The major symptoms of FM include:
  • chronic, widespread body pain
  • moderate to severe fatigue
  • sleep disorders and disturbances, and
  • problems with cognitive functioning and memory.

Other symptoms may include:

  • psychological distress (anxiety and depression)
  • impaired functionality
  • sensitivity to light, sound, and odors
  • stiffness upon awakening, and
  • sexual dysfunction.

Often, overlapping conditions such as TMJD, IBS, headaches and migraines, anxiety and depression, and environmental sensitivities co-exist with fibromyalgia.  Research has documented neuroendocrine physiological abnormalities that may contribute to the symptoms.

Causes:

  • Recent research has suggested a genetic component. The disorder is often seen in families, among siblings or mothers and their children.
  • Fibromyalgia often occurs following a physical trauma (especially involving the trunk), an acute illness (i.e., hepatitis C, Epstein-Barr virus, Lyme disease) or injury, which may act as a “trigger” in the development of the disorder.
  • Environmental (psychological) stressors like early life trauma and deployment to war.
  • Increasing attention is being devoted to the central nervous system as the underlying mechanism of FM. Recent studies have suggested that FM patients have generalized disturbance in pain processing and an amplified response to stimuli that would not ordinarily be painful in healthy individuals.

Treatment:

  • Since there is no known cure for FM, treatment focuses on relieving symptoms and improving function.
  • A variety of prescription medications are often used to reduce pain levels and improve sleep. On June 21, 2007, the U.S. Food and Drug Administration approved Lyrica (pregabalin) as the first drug to treat fibromyalgia. Cymbalta (duloxetine HCl) was approved in June 2008; and Savella (milnacipran HCl) was approved in January 2009.
  • Alternative therapies, such as massage, myofasical release, acupuncture, chiropractic, mindfulness, herbal supplements and yoga, can be effective tools in managing FM symptoms.
  • Increasing rest, pacing activities, reducing stress, practicing relaxation and improving nutrition can help minimize symptoms and improve quality of life.

Prognosis:

  • The course of the illness varies greatly. While symptoms tend to wax and wane, most FM patients tend to improve over time with a multi-discplinary team approach including patient education about fibromyalgia, self-management tools, aerobic exercise, behavioral therapy and pharmacological therapies.
  • Fibromyalgia sufferers should be reassured that although the condition is painful, it does not damage tissues; appropriate treatment and lifestyle changes can help patients manage the illness successfully.
  • Better ways to diagnose and treat FM are on the horizon, and increased information and awareness are helping to improve the quality of life for people with FM.
  • Early diagnosis and management leads to better symptom management and diminishes progression of the condition if left untreated.
  • There is no known cure for fibromyalgia.

About the National Fibromyalgia & Chronic Pain Association

  • The National Fibromyalgia and Chronic Pain Association (NFMCPA) is a non-profit 501(c)3 organization whose mission is to build a united patient and health care community to create a strong voice and organizational base to educate and execute advocacy programs regarding access to care, research, diagnosis and treatment for people suffering with chronic pain from fibromyalgia and overlapping conditions.

Naloxone: The Second Chance Drug Now Available as Evzio for FIBRO

Naloxone: The Second Chance Drug Now Available as Evzio

Naloxone (also called Narcan) is the antidote used to reverse an opioid overdose. It has been used to reverse opioid reactions in hospitals and by EMT’s for decades. Naloxone works by neutralizing opioids in a person’s system and by helping the lungs function allowing people to breathe. It only works if a person has opioids in his or her system; it doesn’t work on other types of medications. It has been found to be safe for almost everyone and has been used all over the world to effectively reverse the effects of opioid overdose. The Centers for Disease control and Prevention (CDC) reports that more than 10,000 reversals of overdoses with administration of naloxone by non-medical bystanders have been recorded! Up until last week’s FDA approval of Evzio, a product of Kaléo a pharmaceutical company, there have been two types of naloxone dispensing methods: 1) a nasal spray that can be squirted into the nose and 2) an injected form that can be administered through clothing into a muscle. Until the approval98+6Both of these medications had to be given by a medical professional, usually in an emergency room setting or by an EMT in an ambulance on the way to the emergency room. This is the first time naloxone has been put into a form that can be prescribed and used directly by patients and is not reliant on administration by hospital or other medical facility professionals, including EMTs.

Evzio is a take-home, single-use naloxone auto-injector that may be used wherever opioids are present. If an opioid overdose occurs, a family member or caregiver can use Evzio to temporarily reverse the effects of the opioid and help keep the patient breathing until emergency medical assistance is available. It is easy to use with visual and voice instruction guidance and comes in a compact size that facilitates portability and availability in an emergency. Its retractable needle system helps prevent user exposure to the needle. Evzio can also be prescribed to an opioid user family member or caregiver.
Read the FDA Evzio Press Release . . .

FDA STATEMENT
Released: April 3, 2014
Consumer Inquiries: 888-INFO-FDA
FDA Commissioner Margaret A. Hamburg Statement on Prescription Opioid Abuse

For more than a decade, the U.S. Food and Drug Administration has been working to address the important public health problems associated with the misuse, abuse, addiction and overdose of opioid analgesics, while at the same time working to ensure continued access to effective and appropriate medications for millions of Americans currently suffering from pain. I firmly believe that these goals are compatible, and that actions to address one should not be at the expense of the other.

Tragically, the most recent data shows that more than 16,000 lives are lost each year due to opioid-related overdoses. In fact, drug overdose deaths, driven largely by prescription drug overdose deaths, are now the leading cause of injury death in the United States – surpassing motor vehicle crashes. We know that the illegal diversion, misuse, and abuse of prescription opioids are often fueled by inappropriate prescribing, improper disposal of unused medications, and the illegal activity of a small number of health care providers. This highlights the important role that education of prescribers and patients can play in addressing this epidemic. The FDA has taken steps to address this but more work remains to be done.

Combatting the serious public health problem of misuse, abuse, addiction and overdose from opioid analgesics is a high priority. Since 2001 the FDA has taken a number of actions designed to help address prescription opioid abuse and to encourage the development of new drug treatments for pain. These actions include:

  • Revising the labeling for opioid medications to foster their safe and appropriate use, including recent changes to the indications and safety warnings of extended-release and long-acting opioids.
  • Requiring that manufacturers conduct studies of the safety of long-term use of prescription opioids.
  • Improving appropriate prescribing by physicians and use by patients through educational materials required as a part of a risk mitigation strategy for extended-release and long-acting opioids.
  • Using the agency’s expedited review programs to advance development of new non-opioid medications to treat pain with the goal of bringing new non- or less-abusable products to market.
  • Working with other federal agencies and scientists to advance our understanding of the mechanisms for pain and how to treat it, including the search for new non-opioid medications for pain.
  • Recommending that hydrocodone-containing combination products have additional restrictions on their use by rescheduling them from Schedule III to Schedule II.
  • Strengthening surveillance efforts to actively monitor the changing nature of prescription opioid abuse and to identify emerging issues.
  • And, importantly, encouraging the development of medications to treat opioid abuse, such as buprenorphine for use in medication-assisted treatment, and to reverse opioid overdoses, such as naloxone.

Today’s FDA approval of Evzio (naloxone autoinjector) provides an important new tool in our arsenal to more effectively combat the devastating effects of opioid overdose, which is one part of our comprehensive work to support opioid safety. Reflecting the FDA’s commitment to encouraging important new therapies, the FDA’s review of Evzio was granted priority status, and the application was reviewed by the FDA in just 15 weeks.

This product is the first auto-injector designed to rapidly reverse the overdose of either prescription or illicit opioids. While the larger goal is to reduce the need for products like these by preventing opioid addiction and abuse, they are extremely important innovations that will help to save lives.

The FDA will continue to work to reduce the risks of abuse and misuse of prescription opioids, but we cannot solve this complex problem alone. A comprehensive and coordinated approach is needed; one that includes the White House Office of National Drug Control Policy, the Drug Enforcement Administration and many of our sister agencies within the Department of Health and Human Services, as well as state and local governments, public health experts, health care professionals, addiction experts, researchers, industry, and patient organizations.

I am confident that this can be accomplished, but we will all need to work together to invest in strategies and responsible approaches that deter or mitigate the effects of abuse while preserving access to pain medicines for the patients that need them the most.

For More Information: Information on Opioid Medications
News Release: FDA approves new hand-held auto-injector to reverse opioid overdose

A stay in hospital

A stay in hospital has its good points

As a single woman living alone, there are very few browny points when mr lupus comes to call so much so that I have to admit that my recent stay in hospital highlighted just what I have been missing (sad but true). Sitting alone on the settee, comforted by 24hr TV I realised that being in hospital, although it meant you were sick and liberty impaired also brought some perks:

• Three meals a day. Okay there was no cordon bleur chef but it was hot and hand delivered • Fresh linen every morning

• Drugs. You have 24hr access. Not that I’m a drug adddict (although mr lupus is working hard to make me that way) but it could be a perk

• Clean clothes everyday. Okay the hospital fashion label may not be the best for your street cred but you’re not going anywhere.

• Transport to and from appointments. A very nice man wheeled me to my lung scan and inspite of looking a little the worst for wear he found me attractive.

• A choice of being with people or being on your own in your own private space. Well curtains drawn around the bed is private isn’t it)

• Room service. At the touch of a button you have access to a team of people who are there to serve you.

When put like that maybe being in hospital is not that bad! Okay I’m not advocating more stays in hospital just highlighting some of the benefits just in case you or I find ourselves there. Here’s to a pain free and hospital restricted 2014

Well I’m not headed to the hospital due to a “lupus” stay, but I am headed there for a brand new knee.  Actually I could use both of my knees replaced but I’ll do one at a time.  As the nurse instructor of my “Knee School” stated….”For those of you who are getting both knees replaced at the same time, just remember when you go to stand for the first time….you don’t have a leg to stand on.”   LOL  OK so it’s a bad joke but so true when you get both replaced at the same time

WebMD on the GO Via your Smartphone or Tablet

Experience WebMD on the Go Via Your Smartphone or Tablet
WebMD’s Mobile Site

WebMD.com has been optimized for your smartphone! Now it’s easier than ever to access trusted health and wellness information anytime, anywhere.
WebMD’s mobile web site makes it easy for you to browse slide shows, read articles, and find the answers to your health and wellness questions — and that’s not all! Check out mobile-only tools like Local Health Forecasts that provide you with the severity of pollen, the harshness of UV rays, and more — all based on your location!
To access the mobile site, simply go to WebMD on your smartphone.

http://www.webmd.com/mobile?icd=ban_hse_wbmd_300x250_mobapp_g

Fibro-Patient-Focused Drug Development

Public Meeting on Fibromyalgia Patient-Focused Drug
Development

On December 10, 2013, the U.S. Food and Drug Administration (FDA) is conducting a public meeting on Patient-Focused Drug Development for fibromyalgia. The FDA is interested in obtaining patient input on the impact of fibromyalgia on daily life and patients’ views on currently available therapies to treat the condition.

Date: December 10, 2013
Time: 1:00 p.m. to 5:00 p.m.
Location: FDA White Oak Campus
10903 New Hampshire Ave.
Building 31, Room 1503A (Great Room)
Silver Spring, MD 20993

For information on parking/security at this meeting, please refer to: http://www.fda.gov/AboutFDA/WorkingatFDA/BuildingsandFacilities/
WhiteOakCampusInformation/ucm241740.htm

Registration

To register for this meeting, fibromyalgia patients should visit:

https://patientfocusedfibromyalgia.eventbrite.com/

Details on the Meeting

• Federal Register Notice (9/23/2013)
Fibromyalgia Public Meeting on Patient-Focused Drug Development https://www.federalregister.gov/articles/2013/09/23/2013-
23019/fibromyalgiapatient-focused-drug-development-meetings

• Webinar: Background on FDA and Patient-Focused Drug
Development

http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm349133.htm

IMPORTANT!

Even if you are unable to attend this meeting in person, you can make a very important contribution by responding to a group of questions which have been developed specifically for fibromyalgia patients by the FDA. (Those planning to attend the meeting are also encouraged to submit their answers to these questions.) The questions pertain to two main topics:

• Topic 1: Disease Symptoms and Daily Impacts That Matter
Most to Patients (4 questions)

• Topic 2: Patients’ Perspectives on Current Approaches to
Treating Fibromyalgia (4 questions)

You can access the questions by clicking on the link to the Federal Register Notice included above. Instructions on how and where to submit your responses are also provided there.

Please also share this FDA meeting notice with any other patients in the U.S. who might be interested.

The Food and Drug Administration is part of the U.S. Department of Health and Human Services

Thanksgiving 2013

 

T is for the trust the pilgrims had so many years ago
H is for the harvest the settlers learnt to grow
A is for America, the land in which we live
N is for nature and beauty which she gives
K is for kindness, gentle words, thoughtful deeds
S is for smiles, the sunshine everyone needs
G is for gratitude … our blessings big and small
 I  is for ideas, letting wisdom grow tall
V is for voices, singing, laughing, always caring
 I  is for Indians, who taught them about sharing
N is for neighbors, across the street, over the sea
G is for giving of myself to make a better me
by Judith.A. Lindberg
Best wishes to you and your family for a comfortable and
Happy Thanksgiving!

Making a big move….and coping with that sleepy feeling!

SO I have been negligent in posting on here an  d the excuse is we have made big move from Texas to Tennessee, I hope you accept that!  When you get our age it is almost a traumatic experience to make such a big move and thanks to our son and his family they made it almost enjoyable.  We are now surrounded by mountains of boxes to unpack but with time, patience, prioritizing and pacing we will get it all together in time.  So how about learning a bit about one being overly sleepy…..I’ve been there!

Coping With Excessive Sleepiness
Natural Sleep Aids

Jana Barber, a teacher in San Francisco, has had insomnia off and on for 20 years. She’s learned to function on just a few hours a night, but sometimes, she says, lack of sleep catches up with her. “I get really ragged sometimes,” she admits. “When you haven’t slept, it’s tough to keep your sense of humor — and your patience — and you need both when you work with kids.”
What are the options for people like Barber, who don’t want to take prescription sleep medications but crave a good night’s sleep? WebMD consulted some sleep experts about “natural” sleep aids to learn more about how — and how well — they really work.

http://www.webmd.com/sleep-disorders/excessive-sleepiness-10/sleep-supplements-herbs?ecd=wnl_slw_111713&ctr=wnl-slw-111713_ld-stry&mb=

ATTENTION your comments can count!

You are receiving this email because we thought that you may have an interest in the upcoming FDA Fibromyalgia Hearing on December 10, 2013, in Silver Spring, Maryland. The National Fibromyalgia & Chronic Pain Association received an invitation to participate in this meeting, and now we are inviting you to join with us to prepare.

On December 10, 2013, from 1-5 PM, the FDA will obtain patient and patient stakeholder* input on the symptoms of fibromyalgia that matter most to patients and on current approaches to treating these fibromyalgia symptoms.

The FDA is interested in obtaining a better understanding of the fibromyalgia patients’ perspectives on:

  1. The severity of the disease and the impact on your life (both function and quality);
  2. The symptoms of fibromyalgia that matter most to you (explaining those you experience); and
  3. Your perspective on the available therapies used to treat your fibromyalgia symptoms.

Patients who are interested in presenting comments as part of the panel discussions will be asked to indicate in their registration which topic(s) they wish to address. These patients will also be asked to send a brief summary of responses to the topic questions as part of their application to be a panelist to the FDA. Panelists will be notified of their selection soon after the close of registration on November 27, 2013. FDA will try to accommodate all patients who wish to speak, either through the panel discussion or through audience participation. Comments will be limited by time constraints.

To help patient advocates understand the FDA process and how to prepare to make public comments, the National Fibromyalgia & Chronic Pain Association (NFMCPA) is developing three public webinars and additional reference materials. To advocate at the December 10th meeting, an application must be sent to FDA through their online portals. The NFMCPA is available for more information and can offer suggestions on how to relay your comments and experiences through efficient and effective testimony before FDA.

This is a unique opportunity to create a change in how fibromyalgia is understood and viewed by the FDA. Through the use of the webinar presentations the NFMCPA will help to empower and enhance your understanding of the many aspects of this important event:

  1. “Understanding the Drug Development Overview” – Tuesday, November 5th;
  2. “Preparing Your Public Testimony” – Tuesday, November 12th; and
  3. “How is Safety and Effectiveness Evaluated?” – Tuesday, November 19th

These webinar presentations will be easy to access and help you, the fibromyalgia patient advocate for advancement in research and treatments addressing pain and additional symptoms. We look forward to preparing with you for this important meeting.

Best regards,

signature

Jan Chambers, President & Founder (NFMCPA)
National Fibromyalgia & Chronic Pain Association


FDA Topic 1 questions:
Disease Symptoms and Daily Impacts that Matter Most to Patients

  1. Of all the symptoms that you experience because of your condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include chronic pain, fatigue, difficulty concentrating, sleep issues, crawly skin etc.)
  2. Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include sleeping through the night, daily hygiene, driving, household chores, etc.)
    1. How do your symptoms and their negative affects impact your daily life on the best days?
    2. On the worst days?
  3. How have your condition and its symptoms changed over time?
    1. Do your symptoms come and go? If so, do you know of anything that makes your symptoms better? Worse?
  4. What worries you most about your condition?

FDA Topic 2 questions:
Patients’ Perspectives on Current Approaches to Treating Fibromyalgia

  1. What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as exercise or acupuncture.)
    1. What specific symptoms do your treatments address?
    2. How has your treatment regimen changed over time, and why?
  2. How well does your current treatment regimen treat the most significant symptoms of your disease?
    1. How well do these treatments improve your ability to do specific activities that are important to you in your daily life?
    2. How well have these treatments worked for you as your condition has changed over time?
  3. What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, restrictions on driving, etc.)
  4. What specific things would you look for in an ideal treatment for your condition?

 

Don’t Overdo IT

Don’t overdo it

Monday, September 16, 2013

  • (HealthDay News) — Lupus is an autoimmune disease that can cause fatigue and fever to skin rashes and joint pain. There is no cure, but a healthy lifestyle can help control symptoms.

Womenshealth.gov offers this advice about living with lupus:

  • Pace yourself, and avoid pushing yourself too hard. Take breaks when necessary, and get plenty of rest.
  • Find ways to reduce stress, such as by exercising, socializing and relaxing.
  • Seek companionship from friends, family and a support group.
  • Talk to your doctor if you struggle with lupus, or worry that you may be becoming depressed.
  • Learn as much as you can about lupus, and take more control of your disease.