Saturday, June 25, 2011

About My 5 Day Hospital Stay

This is my fourth day home from the hospital and I am still weak, "heavy" feeling and have little endurance. I am not complaining... my pain and discomfort level is at about a level 2 out of 10 which is a huge improvement!
My struggle now is re-creating a sense of stability... this episode was one of the biggest I have had. My "mental self-talk" is insecure about my abilities... and about future planning... the perpetual "rug" is apt to be pulled from beneath me again at any time... leaving me dysfunctional wherever I am... work, home, driving, traveling... it is scary.
I was told, "I waited too long before seeking medical attention"... my reply is... how do I know when to go??? Some times simple rest and carb-loading reverse the escalating symptoms of AIP... other times things cross a point and spin wildly out of all control! How do you apply logic to all of this? Not to mention...that "Resting" on too many work days will put one "Out of Work" permanently.
I was told, "It is our medical opinion that you should manage your stress more effectively to avoid AIP triggering"... I agree. How? I am an uber nutrition "Freak", I exercise daily, Sauna regularly, Vent issues, Proactively spear-head problems as they arise... seek professional and personal support for my children's on-going behavioral challenges... talk to a marriage counselor... and Pray A Lot!!!
Wrestling with a sense of hopelessness can lead to depression for me. I am trying to focus my energy on the positive attributes in life... donning negativity filters... avoiding anything and anybody that doesn't see "the glass half full".
Until my energy is re-established I find, for me, it is best to stay close to home... it requires a fair share of "negativity filtering" right here... and that is all the energy I can muster until tomorrow... then maybe I will venture out...

A 5 Day Hospital Stay

Thursday, June 16, 2011

AIP Triggered By... The "Energizer Bunny" on "Crack Cocaine"

Part 1

It is not quite one week into "Summer Vacation" for my family...

-Twin 8 year old adoptive sons, with Reactive Attachment Disorder(RAD), Anxiety & Attention Deficit Hyper-Activity Disorder (ADHD)...

-Husband (School Teacher, also off for the summer), with ADHD...

The "Raw Energy" that exudes from these three individuals could power a large city!

The energy is delivered in a variety of formats...
-fun-loving playfulness
-outdoor enthusiasm
-sports participation
-multiple partially-completed home renovation projects
-behavioral rages & fits
-fabricating untruthful stories
-blatent disrespect
-unkind remarks
-constant LOUD voices
-self-focused, lack of empathy for others
-irrational thought processes
-multiple, simutaneous, stimulating, sensory imputs (TVs, Radios, Computers, Video Games, Conversation, etc.)
-never ending supply of "High Gear" energy in motion (good & bad)

Part 2

Pair this trio with a wife/mother ...a Thyroid that runs low... and an extra large genetic helping of Acute Intermittent Porphyria...
Not a pretty sight! Believe me...
I am dog tired most of the time and now that everyone is home for the summer I get very little rest time.
During the school year I work part-time....this allows me several days to rest while everyone is in school... I still have to manage the home...doctors appointments and food shopping... but I have a balance that I am able to manage most of the time.

Today I feel overwhelmed and hopeless... Porphyria has been "on my heels" for a few days now... I am anxious about my escalating symptoms... I had to work today... my cognative recall is slipping even with basic concepts....eye /light pain...headaches...leg pain...nausea... emotional instability... restlessness... irritability...

I can usually "calm the beast" by removing sensory stimulants...resting... increased carbohydrate intake... and more rest... BUT... did you read Part 1???

Part 3

I don't know how to best cope... I am run down, tired out, and over stressed... I try to see the light at the end of the tunnel... but today I cannot.
Others I reach out to are unfamiliar with the dynamics that complete our home...
They politely listen as I vent... this helps some.

I pray...I eat right... I exercise daily (when I am well enough)... I pray some more... I try to live a lifestyle of healthy choices...of love... of kindness and respect... I have sought professional intervention for my family... counselors... psychologists... medication... physicians... specialists... religion/faith/spirituality... I try very very hard to be positive in effectively managing my Health Situation but today...
today I am struggling...
today I am discouraged...
today I feel hopeless...
today my body hurts, I am physically, emotionally and cognitively uncomfortable
today I can't think straight or recall common words or processes
today I wish I were stronger in every way
today I am angry with my family for "triggering my Porphyria" with their issues
today I am angry with myself for being weak
Today I wish Porphyria would go away!
Today I really HATE Porphyria... I am tired of this same old cycle!!!

Thursday, June 9, 2011


I have almost completed the Johns Hopkins, "Guided Care Nursing Program" (GCN)...
What a fabulous program!
I have enjoyed every minute of course work!
I am currently working with one of the Emergency Department Physicians where I am employed to create a Care Planning Program for patients with chronic health issues that cause recurrent hospitalizations...very exciting!

My original plan had been to complete the GCN certification program then to sit for the ANCC National Certification in Nursing Case Management...
I still intend to complete these 2011 goals.

My thought is that gaining formal education and credentials to couple with my personal experiences in Chronic Disease Management will really hone my expertise in the field.
Ultimately my life goal is to have a significant helpful impact on supporting individuals with chronic health issues.

In thinking about life... and life goals I did a bit of web searching...
Are there professionals that specialize in "Counseling" Individuals on how to best manage their chronic health issues???
Not just medically managing the disease, but actually supporting the person living life with a chronic health issue or issues... helping him/her navigate a life impacted by chronic issues...

There are some Professional Chronic Disease Self Management Support Resources (PCDSMR)out there...but the only PCDSMR a person could independently choose, call up, make an appointment, go to see, and potentially have insurance cover the fee for service was a Health Psychologist.

At first I thought... I want to be a "Health Psychologist"!
Then I began to think... what about Nursing???
In 2015 all Advanced Practice Nurses will be required to have a Doctorate Degree to enter the practice...
Besides, there are no specialty programs for Chronic Disease Management...
Supporting Chronic Disease Self Management is definitely a behavioral/counseling intervention...

What about the
Doctor of Nursing Practice (DNP) in Psychiatric Mental Health Nursing at
The University of Tennessee Health Science Center (UTHSC) College of Nursing???

Just a thought...
It is a three year hybrid program... online classes, local clinical arrangement, and some on-site sessions in Tennessee...

I would love to tackle this program gaining the credentials necessary to provide PCDSMR to individuals who need help... and the ability to bill insurances for services rendered!

It might be magical thinking...I tend to forget the limitations that my AIP puts on me... but maybe???

I am always looking ahead...identifying options and opportunities to grow within my specific life situation... I stay flexible and open... but ceasing to grow would be synonymous with death in my dictionary.

Medications That Have Helped with My AIP

Occasionally/ As Needed
Ativan- PO Q6h/ PRN- Neuro-Sensory Calming
Naproxen- PO Q12h PRN - Pain & Discomfort
Glucose Tabs- PRN to Avoid AIP Crisis
Cranberry Capsules- PRN As Directed- To avoid UTI during episodes of neurogenic bladder dysfunction r/t AIP

Magnesium- PRN As Directed- Neuro-Sensory Calming
Phenergan- PRN Q6h- Neuro-Sensory Calming and Nausea Control

During AIP Crisis
IV Dextrose
IV Morphine
IV Phenergan Alternating with IV Zofran
IV Ativan
IV Hematin

Chronic Disease Self Management Support

-Guided Care Nurses (GCN) at Primary Care Practices
-Case Managers (CM) provided by Medical Insurance Providers
-Care Coordinators (CC) while in the hospital
-Social Workers (LCSW/ MSW) located within facilities and within community-based settings
-Counselor/ Therapist- Health Psychologist, LCSW, APRN-CNS, APRN-CRNP, other...
-Stanford University's Chronic Disease Self Management Program (web site)
-Resource Books
-Disease Specific & General Category Organizations- APF, NORD,
-Disease Specific & General Category Support Groups- online groups, Facebook, etc.

Items That Help My AIP

Meltzers Ginger Mints- to calm nausea
Farinfared Sauna- sweat out toxins, giving the liver a break

Glucose Tabs... watch out for metabolic spikes...only use if necessary (to avoid a crisis)...try to keep steady long-acting carbohydrate state in lieu of fast acting carbohydrate spikes

Reference Books
Instant Oatmeal- great for quick carbohydrates... I prefer cinnamon and apple

Air Purifier- controls your environment, and reduces additional toxins that your body has to metabolize

Organic Food- reduces toxins from pesticides, hormones, antibiotics, etc.
Water Filtration- reduces contaminates? toxins

AIP Dx and printed APF material in car, in purse, at work, at home- keep printed information with you should you need it (it has helped me several times).

Steam Mop (no chemicals)
APF (or National Porphyria Organization in Country of Origin- Reference and support
Chronic Disease Management-Personal Support
Heel Pillow to raise heels off the bed- decreases peripheral neuropathy discomfort
Pulse Ox- to test O2
Incentive Spirometer- to test lung function, esp r/t AIP crisis
Neuro Test Kit- reflexes, hot/cold, sharp/dull
Ear Plugs- sensory calming
Eye Pillow- sensory calming
Weighted Blanket- sensory calming
Weighted Heating Pad- sensory calming
Under Eye Concealer- Cosmetic Dark Circle Cover Up

Medical Alert Bracelet or Necklace with Disease Name on front and key chain flash drive encryption information on the back

Medical Alert Bracelet or Necklace with Medication Name (if appropriate...for me Neurontin) on front and key chain flash drive encryption information on the back

Encrypted Digital Medical Record on flash drive attached to key chain or in bracelet fashion...many doctors are vaguely familiar with AIP and therefor having your comprehensive medical history at their digital fingertips helps direct your prompt treatment.

People "Like" Me

Living with a rare chronic disease is a daily dance...till death we do part.
Sometimes I am at peace with Porphyria and "we" get along well...
I know what Porphyria "likes" and "dislikes"...
I try to maintain "peace" in our relationship by doing the things it likes and avoiding the things it doesn't.
Sometimes I get frustrated because no matter what I do Porphyria will flare-up without reason... that's just the way it is.
Navigating the nuances of Porphyria coupled with Autoimmune Thyroid Dysfunction and a Gluten Sensitivity can be absolutely crazy...
I have come to find that I always do best when I use my experiences as a knowledge base for something bigger than me...
if the challenges in my life can provide me with knowledge and insight that might help other people... well, then I cope better... I keep a more positive perspective on life.

I started this Blog on that very premise.
I hoped to pour my thoughts, research, personal happenings and feelings into one vessel (this Blog) then convert it to a book to be distributed to anyone who might find it helpful.

Honestly I am vulnerable... I get discouraged and even depressed at times...
I ask myself..."is this stuff really helpful for others?"...

Today I noticed the Blog Stats for the first time...
It was emotionally moving to realize that ~2,000 people visit this Blog from all over the world!!!
What a gift of encouragement!

Regenerated with encouragement, I will continue to do my best to complete the Blog to Book plan!!!
The Blog component should be finished September 2011.
I have reviewed a few Blog to Book programs and a few more self publishing options...

Email ( insights welcome!
Best Wishes~