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
Friday, September 2, 2011
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.
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...
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...
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...
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