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 (
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,

- 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:

- 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"
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" @ (

- The Farm Sanctuary @ (
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 @ (

- Karl E. Anderson, M.D., F.A.P.C. @ (

- The American Porphyria Foundation (APF) @ (

- The European Porphyria Network @ (

- The British Porphyria Association (BPA) @ (
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.

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.

Saturday, August 20, 2011

Scary Places Without Support

As a nurse and a caregiver I have experienced the effect of chronic disease consuming an individual's personality and social conversation... I do not wish to be that type of person. I want people to enjoy my presence not be irritated by it. I choose to stay in "controlled environments" whenever I can without saying a word. We recently rented a Lake House for 2 weeks on either side of my daughter's wedding. I spent most of my time inside the Lake House with a cool drink and a big comfortable chair while most everyone else sped around on water crafts, jumped off the dock and played in the water. My husband has brought up the point several times since that "he didn't think I had a good time"... "You hardly left the house". Oh, on the contrary my dear... I loved every minute of quiet, peaceful conversation, beautiful views of both nature and of my family having fun!Outside the humidity, temperature, biting insects, commotion and noise was out of control! Inside my environment (and new found Magnum Ice Cream Bars) was perfect for me!

I try not to verbalize my chronic state of AIP related aches, pains and psychological challenges on a regular basis... it sucks the life out of my companions and it negatively effects me. That said... sometimes... many times I feel so alone in the world... other people who don't have AIP don't understand the nuances of the illness. I have family members with AIP but one is young and only has limited insight into the type of support I seek. I want to talk about how it has effected my life and see if it has done the same to theirs... it sounds so very selfish... but it is not from that part of my heart... I just don't want to feel alone with AIP... it scares me... sometimes I feel like it takes me "down a road" that I may not be able to find my way back to normal... that scares me deeply.
But my siblings with the disease act as if it doesn't exist. I truly am glad that their AIP has remained latent enough to ignore.

The on-line support group I belonged to just closed. The leader's wife had AIP and died last year... he needed to move on to other things.

The "Virtual Group with Video Chat" that New York Mount Sinai is setting up is still in the works.

Some days I feel like an alien... no one around like me.

I was given the name and contact information of a woman with AIP who lives in my state... maybe I will call her...

New Medications

So a bit earlier I discussed how I agreed to begin a regime involving daily medication... I was definitely a must do situation!
The first night I took the Neurontin and the Xanax ER I was able to sleep ALL NIGHT!
It was the best night sleep that I had in years! No lie!
For the first week the Neurontin was at bed only then starting week 2 I was to increase the dose to every 12 hours (2x per day). It has been several weeks now, and believe it or not I actually feel very positive about taking my new medications. The effects last about 8 or 9 hours, so there is a little gap of increased issues, but I feel at least 50% better than before medication.

The medications seem to provide a "buffer" between my neurosensory system and the world (both stress and environmental triggers). As the weeks go on, insomnia, pain and emotional/psychological instability still escalate in parallel to the stress of my home life.

My home life can really "blow you over"... I deal with it as best I can... as anyone would. What are my choices??? Live as a hermit, a recluse, in the mountain forests of my childhood... rubbish... some days I can hardly walk to the bathroom! Besides... could you imagine the guilt and enormous sense of loneliness???
Forget it! My husband, my children, my friends, associates and community members are stuck with my presence... although I do consider the benefits of solitude, peace and serenity that eloping with AIP from human interaction... "Utopian Seclusion in Nature"...

Even "Good" stress gets to me... oh how I struggled to appear "pulled together" and "June Cleaver-ish" for my daughter's recent wedding day! My younger daughter has AIP as well and found her bridesmaid role a challenge in the midst of managing her eruption of ever-irritating AIP symptoms.

One day I forgot whether or not I had taken my medication... I was afraid to take it and overdose... so I didn't take it (I now have a pill box). By 1pm I was absolutely certain that I had not taken the morning medication! My nerves were jumpy at any little thing... my legs (especially the right shin) were radiating with pain... my emotions were up...down... all over! It was a terrible day! I took my night time medications at 6pm and could not go to sleep until about 3am!! Awful!!! The next day remained a challenge but with each day things have settled a bit more.

My very best days "health/ wellness-wise" are the days I stay at home in an environmentally controlled atmosphere (children outside in pool or playing...until school starts in a few weeks!). Stress is low, the temperature is comfortable, no scents, low sensory stimulation, and daily afternoon naps! I have even been able to return to stretching with the yoga ball and walking for 30 minutes on my elliptical trainer a couple times a week.

I find the more tired out I get through the day the less my legs work and the less I am able to understand what people say or do. I appear drunken when I walk and my brain just stops working... I can't even write... until I take a nap (usually about 2hours, 2pm to 4pm). When I wake up I feel much better and am able to continue with my day until about 10pm, when I go to bed for the night (up again at 9am).

I have a follow-up visit with my Primary Doctor in a few weeks... we will see what she thinks...

A Long-Time Friend

I saw a long-time friend who has had a difficult life the other day...
As we "caught-up" in the post office parking lot... he shared his current situational status with me...
I need to remember the advice I gave him that day, and apply it to my own life EVERY DAY!!
"I don't believe it is what you do for a living that makes the biggest difference in life... it's how you choose to live your life that really matters!"

What do people see when they think of me?
Even with my custome health struggles, am I a "model citizen"... do I conduct myself in a positive exemplary way? Do I complain too much? Am I kind, thoughtful and morally just????

If Not A Nurse...Then What???

As I left my doctor's visit it went through my brain...
What if I am unable to continue as a Nurse???
What if I need to consider permanent disability?
I am definitely unstable, unreliable and my illness is easily triggered!
I have spent my entire life setting nursing career goals!
I spent some time mourning the potential loss of continuing an active nursing career.
I spent more time crying and trying to figure out where I go from her?
Who am I?
What makes me...well what makes
Granted my emotional and psychiatric states were pretty unstable for a while... but these thoughts stayed on my mind even after the new medicine "kicked in".
Staying home on Social Security Disability, in my mind was equal to my career dying.
Being a nurse allowed me to focus on the needs of others...which took the focus off me.
Being a nurse allowed me to feel like I make a difference in the world.
How will I make a difference in the world now?? Struggling some days, just to make it through the day???
Then I remember... "God is in my heart" even when I am absolutely miserable!! My Life Has A Purpose... and it is NOT always about me. I am learning to "Let Go"... I am learning to "Let Life Just Happen"... I am learning how to prioritize "life's really important objectives"... I am learning to apply my nursing experience, knowledge, skills and abilities toward other life activities (writing) and aspects (family)... I am learning that I can still make a difference and direction will come when I stop fighting against the current... accepting and loving myself as I am... where I am.

A Visit to my Primary Doctor

My life has been very different since my most recent "Acute" Porphyria episode began... my body's response to in-hospital treatment did not follow the expected "bell curve" and the way in which I interface with the world is now significantly changed. Just a short time ago I was dreaming up ideas of furthering my nursing career. I considered a Doctoral bridge program that when completed would allow me to practice as a Psychiatric Nurse Practitioner and Behavioral Health Clinical Specialist. I thought I would be able to help people better manage their chronic health situations... providing them the support, expert guidance and professional collaboration that I wish I had available to me right now.

Today my reality is quite different than it was the day I wrote about becoming that person... my AIP has contributed to an internal state of constant "dis" "ease"... This past 12 months of writing in a "nut shell"... when my AIP is quiet... I want to do it all! I enjoy living life passionately in forward motion... going...doing...seeing...smelling...touching...experiencing it all! I feel as if I have been let out of a cage... I crave "real" living... being the "real" me!
Then I do too much or some life event triggers another round of increased illness.

It is extremely difficult to ride this cyclical, whirling dervish, called, "life with AIP" and not want to give up hope. Depression, anxiety and suicide statistics are higher for us with AIP... I have no idea what the biochemical contribution is... but heck just read and listen wouldn't anyone have issue with this un-chosen lifestyle???

I went to see my Primary Doctor a few weeks ago because I continued to have a lot of neurosensory, cognitive/psychiatric/emotional, insomnia, and pain. We talked about my medical situation as she evaluated me for over an hour! One thing she said to me... well it was more of a question... "how is your spiritual life??". How is my spiritual life... hmmm... actually my spiritual life is the only part of me that feels Well! Without the belief that God is with me in my heart... I would have succumbed... succumbed to it all, a very long time ago. I used to feel as if I were being punished... and that is why I would be made to feel so miserable... that feeling is not a useful one and only serves to make matters worse... instead I now try to tell myself that God has a purpose for my "life's journey" and it is not always about me! I wish I never came to know the awful nuances, the pain, the disruption and the hopeless loneliness of societal ignorance related to active Acute Intermittent Porphyria (AIP)... but I have become intimately aware of all that is AIP... and I am forever grateful that my "Spiritual Life" is healthy!

My Primary Care Physician (PCP) is like none other I have ever known... each visit is at minimum one hour... evaluating and collaborating... investing in trying to help my mind, my body and my soul. The time has come for me to make some big changes in accepting and taking care of my mind, body and soul. She assisted in setting up a Medical Leave of Absence from my job. I agreed to begin taking medication on a regular and consistent basis. We agreed that these steps are necessary at this point in time. I began taking Neurontin 300mg 2x daily, and Xanax XR 1mg 2x daily. Taking daily medication is a big step for me... but without some help I felt as if I were headed back to the hospital... either 2 South for Hematin... or 3 South for psychiatric stabilization.