- Blog Browsing: looking at other people's web logs to see what they have to share about their situations... gastroparesis, peripheral neuropathy, dealing with chronic disease in general.
Just choose a web browser and type in "____ blog".
- Reading Published Memoirs: examining how others, "tell their story" in memoir format... gaining insight regarding how various chronic health situations change people's lives.
Just go to the local public library and type in "memoir" as the key look-up word.
- The Magazine "Life Extension" provides very in-depth information about the latest integrated medical research findings around the world... they do "push" their vitamin/other supplements.
- "Advance Magazine for Speech-Language Pathologists & Audiologists", vol.18, NO.44, November 3,2008 had an excellent article (pg 7,8,9 & 34) "The Narrative Self Restoring Patient Identity in Neurogenic Disorders" written by Jason Mosheim (www.advanceweb.com/speech).
For me the article validated how I feel alienated about interacting with other people at times. Sometimes communicating is extremely difficult during an active AIP phase. This article discusses this issue in relation to several neurogenic disorders and offers ideas on how to improve the situation.
This article references a book that I have not yet read, but plan to. The book is called, "Neurogenic Communication Disorders: Life Stories and the Narrative Self" written by Shadden, B., Hagstrom, F., Koski, P. (2008)
For more information contact: Barbara Shadden, PhD, bshadde@uark.edu
- The Book, "PORPHYRIA THE UNKNOWN DISEASE" written by Diana Deats-O'Reilly
This book provides a good basic overview about what Porphyria is. It also presents several patient case studies to demonstrate what it is like to experience active episodes of Porphyria. I found this book to be an excellent springboard for researching AIP prior to my official DNA diagnosis.
- The Book, "Porphyria A Lyon's Share of Trouble" written by: Desiree Lyon Howe
Ms. Howe's book gives a personal account of her life with AIP. She is inspirational in demonstrating determination to assist others with Porphyria. She is one of the initial founders of the American Porphyria Association (APF). The APF is a significant resource for information, assistance and support for those with Porphyria.
- "UNSTUCK Your Guide to the Seven-Stage Journey Out of Depression" by: James S. Gordon, MD
This book gives great natural interventions to help combat the symptoms of depression that all people with AIP are prone to.
- "Healing the Planet ONE PATIENT AT A TIME... A Primer in Environmental Medicine" by: Jozef J. Krop, MD, FAAEM
This is one of my favorite books. I learned so much about the human: environmental interaction and how one impacts the other. So very many helpful insights...I think I will sit and read it again!
- "The NEW GLUCOSE Revolution Low GI Gluten-Free Eating Made Easy... The Essential Guide to the Glycemic Index and Gluten-Free Living" by: Dr.Jennie Brand-Miller, Kate Marsh and Philippa Sandall
Long term hypovitaminosis (low blood levels of essential vitamins) was one outcome of my gastrointestinal vitamin absorption dysfunction. After reading this book I became better at identifying long-acting carbohydrate choices that are gluten-free. After trying a gluten-free/ bovine-dairy-free diet for several months my vitamin levels are now within normal limits (without supplements) among other resolved issues. This book is packed with excellent health information!
- "Notes on Nursing What It Is, And What It Is Not... Florence Nightengale with an introduction by Ramona Salotti"
This book represents the foundation of my beliefs in nursing as a career/ calling.
- "Animal, Vegetable, Miracle... A Year of Food Life", by: Barbara Kingsolver with Steven L.Hopp and Camille Kingsolver
A New York Times Bestseller! A city family goes rural and learns to live off the land (literally) and appreciate a "simpler" way of life.
- "Health Promotion Strategies through the Life Span", by: Ruth Beckmann Murray and Judith Proctor Zentner.
The title says it all. A great resource book for positive health maintenance strategies.
- "Integrative Health Promotion... Conceptual Bases For Nursing Practice", by: Susan Kun Leddy
The title says it all. A great resource book for positive health maintenance strategies.
- University of Iowa College of Nursing Online Human Genetics and Genomics Courses.
- The Genetics Education Program for Nurses (GEPN) at Cincinnati Children's Hospital Medical Center... Web-Based Genetics Institute... and other online programs.
- Genetic Nursing Credentialing Commission (GNCC): web search/ information
- Certified Nurse Life Care Planner Certification Board: web search/ research
- Epigenetics web search/ research... how environmental influences effect gene expression
- Porphyria Nurse Care Coordination... web search/ research
- Some Informational Web Sites:
ehsc.science.oregonstate.edu
nursece.com
geneticalliance.org
cdc.gov
doesitruninthefamily.org
http://www.healthyhomestraining.org
- Yoga Nursing
- Digital Health Records/ Health Information Systems: web search/ research
- NeuroSensory Dysfunction/Impairment... also known as Sensory Processing Disorder: web search/ research
- The "Yacker Tracker Deluxe" sound monitor related to noise level control
- The Surround Air XJ-3800 Intelli-Pro Air Purifier: seven filters one machine (a HEPA filter, an activated carbon filter, an ionizer, a photocatalytic (TiO2) filter, a germicidal UV lamp, a washable pre-filter, and an electrostatic dust collector)
- 5 Stage Reverse Osmosis Water Filter System With Storage Tank
- Many books and publications by Dr. Andrew Weil
- "Environmental Medicine" web search/ research
- "Environmental Health Nursing" web search/ research
- "American Holistic Nurses' Association Guide to Common Chronic Conditions: Self-Care Options to Complement Your Doctor's Advice" by: Carolyn Chambers Clark
- "The Omnivore's Dilemma: A Natural History of Four Meals" by: Michael Pollan
An excellent book about the food we eat...its quality and content, where it comes from, how government regulates food and marketing nuances. I used the audio book format over a very long drive.
- "In Defense of Food: An Eater's Manifesto" by: Michael Pollan
This book seemed to be a continuation of his first book, but still good information.
- "The Maker's Diet" by Jordan Rubin
The author of this book tells his story of terrible illness only to become well by following dietary/ lifestyle guidelines outlined in the Bible.
- Relaxation and Meditation... web search/ research
- Rare Disease Advocacy Research Education... Rare Disease Network
- "The Comfort of Home... A Complete Guide for Caregivers" by: Maria M. Meyer with Paula Derr, RN
- The Chronic Fatigue Immune Deficiency Syndrome Association of America
- Stanford School of Medicine "Chronic Disease Self Management Program"
(http://patienteducation.stanford.edu/programs/cdsmp.html)
This is a wonderful program offered via many "Area Agencies on Aging" throughout the United States. I also believe that there may be online options available.
- Many "Scholarly Research-based Articles" about Porphyria retrieved via "EBSCOhost" academic search.
- Anatomy and Physiology Text Books
- Books about The Liver
- Books about Genetic Disorders
- The "Guided Care Nursing Program" @ (http://www.guidedcare.org/nurse.asp)
- The Farm Sanctuary @ (http://www.farmsanctuary.org)
A "Field Trip" to the New York sanctuary was an unbelievable "eye opener" for me! I was so overcome with the reality of our "real world" that I had to leave the building weeping, during the initial presentation...I wept without control at the animal cruelty and at my own personal naivety related to my unquestioned belief in: an invested government "focused on" the best interest of the people it serves. Soon after this experience I listened to Michael Pollan's book "The Omnivore's Dilemma: A Natural History of Four Meals" which served to reinforce my Farm Sanctuary "Awakening".
- Multiple Chemical Sensitivity- web search/ research
- Herbert Bonkovsky, MD @ (http://www.porphyriafoundation.com/about-the-apf/scientific-advisory-board/dr-herbert-bonkovsky)
- Karl E. Anderson, M.D., F.A.P.C. @ (http://www.porphyriafoundation.com/about-the-apf/scientific-advisory-board/dr-karl-anderson)
- The American Porphyria Foundation (APF) @ (http://www.porphyriafoundation.com/about-the-apf)
- The European Porphyria Network @ (http://www.porphyria-europe.org/)
- The British Porphyria Association (BPA) @ (http://www.porphyria.org.uk)
There is a list of Porphyria Associations all over the world, printable from this website
- Books and Articles on, "Half Acre Hobby Farming" & "Sustainable Living"
- Information from varied media sources on keeping "Back Yard Laying Hens" and most recently "Nigerian Dwarf Dairy Goats"
- The Christian Bible
I began reading my Bible last year about the same time I started this Blog/Book. My intent is to read the Bible like a storybook, cover to cover. At present I remain about one-third of the way through. For such a widely referenced, well-known book, I am sad to admit it is my first time reading it cover to cover.
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