Tuesday, April 26, 2011

How to Be Kind Despite Having an Illness

Being kind is a way of living that keeps giving long after the kind thoughts, words, and actions have taken place. Kindness is a force without force, and it goes well beyond manners to the very heart of how people respect and treat one another.
Being kind is a vital way of making our own lives, and the lives of others, meaningful. Being kind allows us to communicate better with others, to be more self-compassionate, and to be a positive force in other people's lives. Kindness has its true source deep within you, and while some people are innately kind, it's something that everyone can cultivate by choice.
Understand what kindness is and is not. At its most basic, kindness is about caring genuinely for others around you, wanting the best for them, and recognizing in them the same wants, needs, aspirations, and even fears that you have too. Kindness is warm, resilient, patient, trusting, loyal, and grateful. Sometimes when we are sick we may not show kindness in the usual way. Due to pain, suffering, lack of sleep and energy may all play a part.
Ultimately Kindness is deep caring for all beings.
Be kind to yourself. Many people make the error of trying to be kind to others while not focusing on being kind to themselves. Some of this can stem from not liking aspects of yourself, but more often than not, it's sourced in the inability to know yourself better. And unfortunately, when you don't feel rock solid within yourself, your kindness to others risks falling into the deluded types of kindness it can lead to burn-out and because you've put everyone else first. Self-knowledge allows you to see what causes you pain and conflict, and enables you to embrace your contradictions and inconsistencies. Take time to become more self aware and use this learning to be kinder to both yourself (remembering that we all have weaknesses) and to others. In this way, your inner angst is being dealt with rather than fueling your need to project the hurt and pain.
o Avoid viewing time taken to become more aware of your own needs and limits as an act of selfishness; far from it, it is a vital pre-condition to being able to reach out to other people with great strength and awareness.
o Ask yourself what you think it means to be kinder to yourself. For many people, being kinder to themselves includes monitoring the negative chatter that involves putting yourself down and stopping your negative thinking.
o If you have a tendency toward perfectionism, competitiveness, or a driven sense of urgency, self-kindness can often be a victim of your ambition and fast pace, as well as your fear of being seen to be lazy or selfish. Remember to slow down and to forgive yourself when things don't work out as wished.
o When I think of any of the Porphyrias, when were in an attack~”TO DO LIST” we wish to get things done and they race over and over in our minds. We simply have to let it go and think about getting well~ even though we always want to do the work ourselves and try to put the pain aside.
o Learn from your mistakes rather than beating yourself up over them, or comparing yourself to others. It is through self-compassionate responses that you can start to see other people's needs in a compassionate light.
Be present: Family, Friend’s and Caregivers and Medical Doctors and Nurses: The greatest gift of kindness to another person is to be in the moment in their presence, to be listening with care, and to be genuinely attentive to them.
o Be a good listener. Often said, yet the act of listening is easier said than done in our fast-paced world, where rushing and being busy are seen as virtues; where cutting someone off because you're too busy, or you need to get somewhere in a hurry, is the norm. Making being busy into a habit is no excuse for unkindness, however. When talking to someone, learn to listen with your whole being and sincerely pay attention to them until they're done revealing their thoughts and story.
o Schedule your day differently, so that you're not known as the person who always rushes off. Being present means being available; you can only do this if you're not rushing or squeezing in people and activities.
o Take time to connect with people face-to-face, or via an uninterrupted phone call. Send a letter instead of an email and surprise someone with the kindness of your having taken time out of your day to put pen to paper. How nice it is to see us encourage each other with Facebook send caring thoughts to each other to get better and stay well and most of us have never met each other in person! Because we took the time to listen.
2. Be happy, joyful, and grateful. And keeping your sense of humor ensures that you don't take yourself too seriously and take life's contradictory and contrary moments with good faith.
Reflect on the kindness of other people. Think about the truly kind people in your life and how they make you feel. Do you carry their warm glow around in your heart every time you think of them? It is likely that you do because kindness lingers, warming you even when the hardest challenges face you. When other people find a way to love you for who you are, it's impossible to forget such trust and confirmation of worthiness, and their kindness lives on forever. So ask yourself what was the last kind thing someone did for you? How did it make
Cultivate kindness for the good of your own health. Improved Health and happiness comes from thinking more positively, and kindness is a positive mental state. While kindness is about giving and being open to others, giving kindness returns a sense of well-being and connectedness to us that improves our own mental state and health. This is just part 1 of a series to be Happy Healthy show Kindness to everyone! Pass it on!
By Amy Chapman AIP Patient

Wednesday, April 6, 2011

The Foundation of the APF.

I want to tell you about the people who are the FOUNDATION of the APF. JJ My life and yours would have or could have had a tragic ending without the hard work of the people I have written about in the following paragraphs. There are so many other scientists, physicians and lab technicians that have enhanced our lives and improved our health but there is not room enough on the pages of this book to name them all and to enumerate their achievements. Know that they are in laboratories, hospitals and research centers all over the world and that without them, to be sure, your life would be filled with more sickness or pain.

You can support them first with your prayers. They are the most powerful and least used force in the universe. Next, you have the opportunity to support them with your finances. There are plenty of research projects that will change the Porphyria world but they need money to be completed. The APF has separate accounts for research projects. You can donate funds that will go specifically to those projects by noting your request in a letter. You can take joy in knowing that your participation by praying and funding one of these projects has lessened the suffering of Porphyria patients throughout the world and that you have helped the following individuals and those not listed to accomplish their life-changing goals. You can make donations by credit card or check.

Our first Chairman of the Scientific Advisory Board was Dr. Karl Anderson, who is board certified in both Internal Medicine and Gastroenterology, an ideal combination for the acute Porphyrias. He was at Rockefeller University when I met him and first became his patient. A few years later, Dr. Anderson left Rockefeller to become the Director of the Porphyria Center, the Director of the Division of Human Nutrition in the Department of Preventive Medicine and Community Health and the Associate Director of the General Clinical Research Center (GCRC) at the University of Texas Medical Branch in Galveston, Texas. In that capacity, he developed the GCRC's training curriculum in clinical investigation, including developing the course Methods in Clinical Investigation. Dr. Anderson’s research focused on the effects of diet on drug and hormone metabolism, the human Porphyrias and drug metabolism in cirrhosis.

His Porphyria-specific studies include treating the acute Porphyrias with heme arginate, GnRH analogues and erythropoietin, as well as studying the roles of vitamin C and hepatitis C in PCT. Recently he began researching the effect of an enzyme replacement for the Porphyrias, which is manufactured by Hemebiotech, a company based in Denmark. Dr. Anderson co-chaired an advisory panel of experts for the APF, which was established to enhance awareness of the Porphyrias among primary care physicians and to help them improve diagnosis and treatment of the disease.

He has been my doctor for over twenty years. I can hardly speak or write about him without becoming emotional. Even though we have also become friends and colleagues for twenty years, I continue to call him Dr. Anderson rather than Karl. For me, I call him Doctor, because it is a revered title and the most outwardly respectful thing I can do. To be a doctor is a high calling. It involves healing, a God-given ministry and that is what I feel about Dr. Anderson. He is a ministering physician, an instrument of God; the kind of man about whom the Lord can say, “Well done, my good and faithful servant.”

It would take another entire book to describe Dr. Anderson’s many kindnesses to patients all over this country and other parts of the world. In fact, I can say the same about all of our board members. They all have served the Porphyria patient community with very little compensation.
Dr. Anderson is also one of the physicians who are training future experts . To enlighten you on this very important program:

At the formation of the American Porphyria Foundation in 1980, the founders sought the most renowned porphyria experts in the country to serve on the Scientific Advisory Board. These individuals were identified and selected on the basis of their training, experience, peer-reviewed publications, research, attendance at international meetings and knowledge as experts among other physicians in the field of metabolic diseases. These have provided expert advice to the Foundation and its members continuously over many years.

Members of the Scientific Advisory Board of the American Porphyria Foundation are medical pioneers in the field of porphyria and have led porphyria research, testing and treatment for the past thirty years. This prestigious group of porphyria specialists are currently diagnosing and treating patients, as well as acting as consultants to their primary care physicians. These experts also developed the medical publications in the American Porphyria Foundation brochures, website, newsletters and E-news updates.

In addition, these experts have published the major medical texts and journal articles related to porphyria, including the well received article, “Recommendations for the Diagnosis and Treatment of the Acute Porphyrias,” published in the March 2005 issue of the Annals of Internal Medicine. The American Porphyria Foundation has received over one thousand requests for copies of this particular article.

Over the past few years, such publications have dramatically increased the level of porphyria diagnosis, which, in turn, increased the need for expert consultation, medical publications and educational programs among primary care physicians. These newly diagnosed porphyria patients and their treating physicians rely on the American Porphyria Foundation and the board of specialists for the best available approaches to diagnose and treat porphyria.

Most of the present porphyria experts received their training through government funding. However, because of budget cuts, all rare diseases had little access to the type of government funding that was available in times past. Since porphyria is categorized as a rare disease, the funding opportunities and financial incentives to enter the field are few. These and other financial restraints on medical funding will in the future create a potentially disastrous situation for patients and their primary physicians as the number of present experts decreases and the funding to train their replacements is very limited.

The American Porphyria Foundation is acutely concerned about the evolving scarcity of porphyria specialists. Therefore, in December 2004, the American Porphyria Foundation established the “Protect The Future” educational program to attract and train the next generation of porphyria specialists. Our “Protect The Future” program is a major means of expanding the present group of porphyria experts and practitioners while preventing a future lack of experts to serve the Foundation and its members on the Scientific Advisory Board.

At present, the APF has supported the training of ten experts via the PTF program. Most of the PTF doctors are on their way to Cardiff to attend the International Porphyria Meeting where experts gather from around the world to share their expertise and research projects.

*Dr. Anderson is co chair the Consortium of researchers

It is an exiting time!!!!

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