Wow, I can't believe that it has been a month since my last entry!So very many things have happened since then. Life is relentless that way... nothing stops the forward motion of it all.
Sometimes life's perseverance feels like a blessing...
and others can seem insensitive and progressively cool.
My life is always a "mixed bag" of both... vacillating as my journey unfolds.
The one year caption of, "My Life with Acute Intermittent Porphyria" has come and gone now. My next writing phase will be identifying a blog to book program and converting this past year's blog entries into a book format. After doing a little research it looks as though I have quite a lot of work ahead of me, editing, front book work, back book work, publishing and distributing the finished project. The thought of all the foreign tasks seems unmanageable...
Thankfully, I am empowered by a strong internal motivation to turn the challenges of my experiences into a "helping hand" extending a sense of understanding and validation to others who struggle with AIP worldwide.
Sunday, October 9, 2011
Saturday, September 10, 2011
Life's Path...
The "Spirit of Me" feels lighter today...
I feel uplifted, positive and yes, even hopeful.
I think I had started loosing hope for a "better tomorrow" a while back... each day things just seemed to feel less than par... or worse.
I really struggle when I find myself in those ruts.
There are several aspects to contend with in deciphering why I vacillate in this cyclic, manic-depressive type fashion...
My twin eight year olds' behavioral-mental wellness challenges that beat on my stress nerve like a iron mallet to a piece of glass... sharp edges and complex shatter patterns... the whole package ignites my Porphyria on a daily basis like gas on a flame. My goal is to identify and secure solid therapeutic treatment to help them heal.
When I am "sick", my mind, body and soul become depleted... and my family initially goes on "auto-pilot". If my "illness" persists long, the whole family dynamic turns chaotic and dysfunctional. My husband becomes overburdened, resentful and angry. My children become needy, craving attention, acting out to get it, matters become even worse.
I feel physically miserable, emotionally drained and mentally "not myself". Guilt strikes me... I feel guilty sometimes about the fallout that these AIP periods cause. Sometimes I get angry... angry because it is not MY fault! I don't want to be like this! If the STRESS level weren't consistently SO unbelievably high in my home life... AIP might be much less active.
Usually after a spell of feeling just awful, and unable to do much more than rest in the bed... I will wake up one day feeling like a normal person... no stifling pains, no nausea... I have emotional calm, mental clarity. I want to take on the world... make up for all the time I "lost".
I did the 26 blood tests and now I have been to my Primary Doctor. All tests back so far area within normal parameters. My liver enzymes are slightly elevated. For the first time in many years all of my vitamin levels, especially Vitamin "A" have stayed within normal limits without high doses of supplements! My vitamin levels normalized after I went gluten and bovine dairy free. My theory is that I have a sensitivity to gluten and a known sensitivity to the whey in bovine dairy... each time I consume these products I develop significant indigestion, gas, bloating, headaches and joint pain with swelling within 24 hours. Anything that causes these types of reactions is obviously irritating one's digestive system... with irritation comes swelling and decreased performance ability. I believe that my nutrients were not being absorbed properly due to on-going irritation... even with significant amounts of supplements in addition to wholesome foods.
An interesting tid-bit I was told long ago is that "when someone has frequent urinary tract infections Vitamin "A" stores can be depleted"???? Also, "people who have both a Vitamin "A" deficiency and an iron deficiency (anemia) can be difficult to heal the anemia issues"?????
I will keep to my new way of eating... because it makes me feel better.
My doctor was her pleasant self as always. I wasn't feeling my best that day... but I was ok. She spent about 40 minutes with me, evaluating my situation. My next visit is scheduled in 3.5 months... short-term disability renewed... long-term disability denied! Denied! Denied? My doctor knows that STRESS is an enormous AIP trigger. She also knows that my son's untreated psychological/behavioral condition is my primary STRESSOR. With proper treatment his behaviors will become regulated and my STRESS will be significantly lessened. Lower stress levels create the possibility that I may return to some form of nursing work.
I was angry with her initially... I have tried and tried... I haven't found anyone who can help him... what if I never can! Ahhh a mental switch flipped for me! I can, I will, and I MUST find the right intervention to help my son! There is NO other option. Finding him a solution to his challenges provides the only solution to a large part of my challenges (in theory anyhow).
I went to the hospital today. Externally I looked like I was dressed for a yoga class. They said, "no metal at all on your clothing for an MRI". Internally I was a little nervous. I have never had an MRI before. What if the IV contrast made me sick? I didn't know what to expect at all. I was digging up harbored anger and resentment about always being alone at every new or "scary" point in my health management. I shook it off... it wasn't positive or helpful. The woman who did my MRI was very kind and the procedure wasn't bad at all.
After the MRI I remembered to ask for a "disk" copy. The Liver Specialist had requested I bring him one. Then I went to see who was sitting at my old desk...
Yeah two of my favorite coworkers! We had a good visit and I went down to our main department area. My boss was in a meeting so I scheduled an appointment with her for this coming Tuesday. Then I spoke with our Pediatric Social Worker. She asked and I summarized my son's situation. She gave me the name of a local specialist that might be able to help! Then I went in to talk to the lady that I was hoping to "job-share" with come April 2012. She has a small office to herself and reviews patient charts filing appeals for denials, and submitting clinical information for insurance company review. She had devastating personal news... her husband was quite unwell. She would like to start job-sharing as soon as possible. Hmm I thought I wonder if I am ready to try? I wonder if my doctor thinks I'd be ready for this type of work? I wonder if my old boss would let me give it a try? So many, "I wonders"... so much happened in just two hours time yesterday morning. I meet with my boss on Tuesday, till then I will pray for guidance and call the suggested doctor for my son first thing Monday morning.
As I readied for bed last night I reflected on the day. Isn't it ironic that you can wake up on one path in life... then go to bed that very same day with a whole new direction available and ready for exploration... life is exciting, scary at times... but NEVER hopeless.
Friday, September 2, 2011
Bits and Pieces of Me Lately
As noted, I have really been struggling lately.
I am schedualed to see my Primary Doctor next Wednesday.
I have my first MRI, with IV contrast, next Friday.
I follow it all up with an evaluation by my Hepatologist.
I am currently receiving "Short-Term Disability" due to a "Medical Leave of Absence" from my half-time job as a Nurse Care Coordinator at the local Emergency Department. I love the nursing profession and am proud to be called a nurse... but I don't know if I will ever have my disease "regulated" enough to be productive as a reliable "employee" again. That makes me so sad.
My joy is that I still have the ability to write, to share, to validate and to help other "patients" like myself via my written story.
Just the other day my daughter dropped in for an unexpected visit.
It was wonderful to see her.
Even though she lives minutes away... she is 20 years old and keeps a very busy life. As we sat and talked on the living room sofa, I confessed that I had been really struggling with AIP and with life. I apologized to her. Many times when we see each other I bring up AIP.
"I don't want, nor have I ever wanted AIP to be our strongest common ground".
My problem is... when I am with "you" (my daughter) "you" really "understand" what the "storm" feels like inside my body... you understand without trying to find words or make analogies.
I have been feeling like an alien on a planet where no one understands me...
I feel confused...emotional... secluded... in pain and medically without hope.
With you I feel validated, understood, believed in.
I am truly grateful that my daughter has not experienced AIP issues to the degree that I have and do... yet she is the only one who can, "see beneath my skin".
For such a young woman she showed great kindness, warmth and depth of character in comforting my spirit that day.
She does worry me regarding her own AIP disease management... she turns 21 soon and is planning to "go out"...
Alcohol has been a significant trigger for her in the past.
She is also considering re-trying hormone contraception, which has also been a significant trigger for her in the past.
She has a clear understanding of AIP, so I know that as an adult she will make her own choices... as we all do.
Today I reached out for the "strength" that connecting with a sibling can give.
My brother and I have known each other all of his life and most of mine, 39 years now. In many ways we are much a like. We are fueled by determination, perseverance, internal motivation and ethical responsibility; sharing common perceptions about our upbringing.
In other ways we compliment each other... I am deeply empathetic, I thrive on sharing the depth of my soul with a small handful of close family members... I wear my heart and the truth on my sleeve for all to know who I am, and what I am "about".
I have always known my brother to be an "excellent poker player" in the game of "real life"... rarely does he show the world how he truly feels or what his plans are... "his thoughts are his own". Many, many times I wish I were more like him... because openness brings pain and insult when the world is not as kind or caring as one might hope.
Together, I guess we as siblings are a "balanced set".
Life has inspired change in both our lives in the past year...
My sons were diagnosed with some significant behavioral issues.
My brother sadly divorced early in the year after a long term marriage.
Our beloved grandmother died in early Autumn. (Probable AIP)
Our father died in early Winter, after a long dance with many health issues throughout his life. (Diagnosed with AIP days prior to death.)
My brother happily remarried on New Years Day 2011.
My AIP remained chronic, vacillating in severity throughout the year.
During this past year, under significant circumstances, I have felt my brother begin to share more of himself with me. Although I know he is not "magically super-human" to me, my brother has a very strong spirit! I do love that about him... like grandma, dad, grandpa Wood, and mom (who thankfully is still here on earth).
Just like "borrowing a cup of sugar from a good neighbor", I need to "borrow 3 cups of extra strong spirit" to get me through an "empty spot in the cupboard of my life".
My text to him today read:
Thank you for trying to return my "I miss you" text with two phone calls... that I unfortunately missed.
Days of late are extremely trying...
My son's behavioral/ psychological situation will NOT be denied and commands constant attention/ investment.
My mind... my body and my spirit are drained.
I search daily for the "silver lining" or the "light at the end of the tunnel".
Nothing leads me to the comfort of answers, interventions or change.
My Porphyria has been constantly "prodded" by the situation, until it now "ROARS like a Lion".
Days are hard and I feel "jailed" by life.
Any insight that you might have would be appreciated... in lieu of your physical presence... that always provides a surge of strength to a sister's heart.
With Much Love/ Your Sister
I am schedualed to see my Primary Doctor next Wednesday.
I have my first MRI, with IV contrast, next Friday.
I follow it all up with an evaluation by my Hepatologist.
I am currently receiving "Short-Term Disability" due to a "Medical Leave of Absence" from my half-time job as a Nurse Care Coordinator at the local Emergency Department. I love the nursing profession and am proud to be called a nurse... but I don't know if I will ever have my disease "regulated" enough to be productive as a reliable "employee" again. That makes me so sad.
My joy is that I still have the ability to write, to share, to validate and to help other "patients" like myself via my written story.
Just the other day my daughter dropped in for an unexpected visit.
It was wonderful to see her.
Even though she lives minutes away... she is 20 years old and keeps a very busy life. As we sat and talked on the living room sofa, I confessed that I had been really struggling with AIP and with life. I apologized to her. Many times when we see each other I bring up AIP.
"I don't want, nor have I ever wanted AIP to be our strongest common ground".
My problem is... when I am with "you" (my daughter) "you" really "understand" what the "storm" feels like inside my body... you understand without trying to find words or make analogies.
I have been feeling like an alien on a planet where no one understands me...
I feel confused...emotional... secluded... in pain and medically without hope.
With you I feel validated, understood, believed in.
I am truly grateful that my daughter has not experienced AIP issues to the degree that I have and do... yet she is the only one who can, "see beneath my skin".
For such a young woman she showed great kindness, warmth and depth of character in comforting my spirit that day.
She does worry me regarding her own AIP disease management... she turns 21 soon and is planning to "go out"...
Alcohol has been a significant trigger for her in the past.
She is also considering re-trying hormone contraception, which has also been a significant trigger for her in the past.
She has a clear understanding of AIP, so I know that as an adult she will make her own choices... as we all do.
Today I reached out for the "strength" that connecting with a sibling can give.
My brother and I have known each other all of his life and most of mine, 39 years now. In many ways we are much a like. We are fueled by determination, perseverance, internal motivation and ethical responsibility; sharing common perceptions about our upbringing.
In other ways we compliment each other... I am deeply empathetic, I thrive on sharing the depth of my soul with a small handful of close family members... I wear my heart and the truth on my sleeve for all to know who I am, and what I am "about".
I have always known my brother to be an "excellent poker player" in the game of "real life"... rarely does he show the world how he truly feels or what his plans are... "his thoughts are his own". Many, many times I wish I were more like him... because openness brings pain and insult when the world is not as kind or caring as one might hope.
Together, I guess we as siblings are a "balanced set".
Life has inspired change in both our lives in the past year...
My sons were diagnosed with some significant behavioral issues.
My brother sadly divorced early in the year after a long term marriage.
Our beloved grandmother died in early Autumn. (Probable AIP)
Our father died in early Winter, after a long dance with many health issues throughout his life. (Diagnosed with AIP days prior to death.)
My brother happily remarried on New Years Day 2011.
My AIP remained chronic, vacillating in severity throughout the year.
During this past year, under significant circumstances, I have felt my brother begin to share more of himself with me. Although I know he is not "magically super-human" to me, my brother has a very strong spirit! I do love that about him... like grandma, dad, grandpa Wood, and mom (who thankfully is still here on earth).
Just like "borrowing a cup of sugar from a good neighbor", I need to "borrow 3 cups of extra strong spirit" to get me through an "empty spot in the cupboard of my life".
My text to him today read:
Thank you for trying to return my "I miss you" text with two phone calls... that I unfortunately missed.
Days of late are extremely trying...
My son's behavioral/ psychological situation will NOT be denied and commands constant attention/ investment.
My mind... my body and my spirit are drained.
I search daily for the "silver lining" or the "light at the end of the tunnel".
Nothing leads me to the comfort of answers, interventions or change.
My Porphyria has been constantly "prodded" by the situation, until it now "ROARS like a Lion".
Days are hard and I feel "jailed" by life.
Any insight that you might have would be appreciated... in lieu of your physical presence... that always provides a surge of strength to a sister's heart.
With Much Love/ Your Sister
26 Tests for the Hepatologist (Liver Doctor)
I had an order for blood work to be drawn, one week prior to my upcoming abdominal MRI, so today is exactly one week prior.
"Fastng" began at 8pm last night.
I dropped the children off at school around 8:50am this morning and drove directly to the lab to have my labs done as ordered.
I signed in at 9:18am and one hour later I had my 26 tests (13 tubes) drawn from my right arm. (Over $3K without insurance... $15. copay with insurance... thank God for my husband and his job!)
I have been having a lot of "Porphyria" activity this week... but after having an EXTREMELY stressful morning with my son and fasting for 14 hours, when I asked the lab technician if I could use the restroom, my urine looked like "dark ice tea" and smelled of "old dirty socks".
"Here we go again!" I thought as I rushed to the closest "Starbucks" where I ordered not one, but TWO breakfast sandwiches and a "Tall Skinny Hot Chai". I ate every bit of it all as I drove home...let the dog out...then back in... and now find myself in bed typing my thoughts and day away until I can calm my body enough to rest a bit.
"Fastng" began at 8pm last night.
I dropped the children off at school around 8:50am this morning and drove directly to the lab to have my labs done as ordered.
I signed in at 9:18am and one hour later I had my 26 tests (13 tubes) drawn from my right arm. (Over $3K without insurance... $15. copay with insurance... thank God for my husband and his job!)
I have been having a lot of "Porphyria" activity this week... but after having an EXTREMELY stressful morning with my son and fasting for 14 hours, when I asked the lab technician if I could use the restroom, my urine looked like "dark ice tea" and smelled of "old dirty socks".
"Here we go again!" I thought as I rushed to the closest "Starbucks" where I ordered not one, but TWO breakfast sandwiches and a "Tall Skinny Hot Chai". I ate every bit of it all as I drove home...let the dog out...then back in... and now find myself in bed typing my thoughts and day away until I can calm my body enough to rest a bit.
Wednesday, August 31, 2011
Information and Support That Help Me with My Health & AIP
- 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.
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.
He Laughed
Having been on a "Medical Leave of Absence" from work for several weeks now, my husband asks..."what will you do if you aren't ever able to return to work"? I responded, "I will apply for permanent Social Security Disability and Medicare Supplement to help with our finances". As for life in general... "on my 'good' days I will finish my book, edit it and work on publishing it... then I will put together my next book on 'International Adoption & Trying to Heal RAD'... that is of course in addition to all of my domestic wife and motherly responsibilities". He responded with laughter... I was hurt and confused. "How should I interpret your laughter" I asked. "Are you mocking me... telling me you think of my aspiration as a joke... or maybe that you believe I lack the talent for the job".
His rationale for laughter:
"I believe that you have the capacity to write, and write well. I have known many people who aspire to write a book... I have known no one who has completed the job and become famous". "How are you different"?
How am I different?
I have no aspiration to "become famous" or make tons of money. My motivation is a drive to share information about what it is like to be a Registered Nurse who lives with a rare genetically inherited disease, Acute Intermittent Porphyria (AIP). My audience is most likely limited to people who have the disease, people who have loved ones with the disease and medical personnel who want more information about AIP. The obvious lack of support shown by my spouse this day served to "fuel my fire" even more to "make this book happen".
As my pre-set time frame of one year (9/17/2010 - 9/17/2011) is quickly ticking to an end, I struggle to include all of the elements that I want and need to share. I am hoping that during my "editing phase" (post completion date) I can identify the pieces I have neglected and modify the final product to include a comprehensive presentation of real-life information.
It has been even more difficult to write lately, as my disease has been very active and I struggle to, "think straight". Writing in small segments, when my environment is well controlled is ideal yet rare to come by.
His rationale for laughter:
"I believe that you have the capacity to write, and write well. I have known many people who aspire to write a book... I have known no one who has completed the job and become famous". "How are you different"?
How am I different?
I have no aspiration to "become famous" or make tons of money. My motivation is a drive to share information about what it is like to be a Registered Nurse who lives with a rare genetically inherited disease, Acute Intermittent Porphyria (AIP). My audience is most likely limited to people who have the disease, people who have loved ones with the disease and medical personnel who want more information about AIP. The obvious lack of support shown by my spouse this day served to "fuel my fire" even more to "make this book happen".
As my pre-set time frame of one year (9/17/2010 - 9/17/2011) is quickly ticking to an end, I struggle to include all of the elements that I want and need to share. I am hoping that during my "editing phase" (post completion date) I can identify the pieces I have neglected and modify the final product to include a comprehensive presentation of real-life information.
It has been even more difficult to write lately, as my disease has been very active and I struggle to, "think straight". Writing in small segments, when my environment is well controlled is ideal yet rare to come by.
Friday, August 26, 2011
Wine with Dinner
I had some delicious wine with dinner tonight. It is my husband's birthday. My AIP very rarely can deal with any alcohol at all anymore. It really does seem to be both an age, and a life-time of accumulated exposures to triggers situation. In my late teens, twenties and early through mid thirties I was able to tolerate ocassional alcohol consumption the same as any other regular person... not so today! One glass and it's on! My switch is flipped... I cannot urinate... I cannot sleep (it is 1:20am)... I am irritable and restless... "It is what it is"... I made a poor choice joining my husband in having that glass of wine with dinner! Hopefully things will slowly calm and pass...I will be extremely "kind" to my AIP tomorrow...carbohydrates, lots of rest, and if possible, a low stimuli envronment.
This week has been SEVERELY stressful and my AIP has been down right evil to me. My husband (a teacher) returned to work last Monday and I have been home alone doing my best to take care of our twin 8yr old boys with significant behavioral issues (more about that in my next book). Life goes on in spite of AIP... and I truly prefer a life with my family, than a life alone without them. I continue to do my best to make it work.
This week has been SEVERELY stressful and my AIP has been down right evil to me. My husband (a teacher) returned to work last Monday and I have been home alone doing my best to take care of our twin 8yr old boys with significant behavioral issues (more about that in my next book). Life goes on in spite of AIP... and I truly prefer a life with my family, than a life alone without them. I continue to do my best to make it work.
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