Online Porphyria Support Group... Today's Post

Thank You Lynda & Eileen for sharing your Porphyria experiences!
Your validation has come just when I needed it the most! I have been struggling with my chronic AIP issues for some time now... amen to the fact that people and stress escalate the neurosensory overload! I am at a very difficult point at present...my nursing career has been a huge part of my life... like sand through my fingers I am losing my career... beginning the disability process... it is extremely hard for many reasons... I try with every bit of energy that I have, but I just can't do it anymore... my AIP is triggered easier and easier these days... smells, lighting, motion, the volume, pitch and speed of other people's talking... my body feels as if it is made of lead... I have more and more trouble focusing... remembering details... making connections... the pain in my legs and the random "bee-like stings" is awful (as you know)... I am getting more and more anxious when I am planning to leave home... not because I have a phobia... I have always been social and fun-loving... but because I cannot control the environment and my symptoms will probably worsen no matter how careful I am. It is like living in a bad dream. I try every day to keep a positive mind-set... to look for the little things that make life special... some days are a terrific challenge. I have a husband and twin 8 year old sons... all with ADHD... I am extremely invested in eating right to optimize my health (Gluten Free, Soy Free, Bovine Dairy Free, Organic, Non-Goitergenic, AIP-friendly)... I sauna...I yoga... I use my elliptical exerciser daily when able... I read and research to optimize my wellness... I joined the AIP Clinical Study... I try to gently educate my health care providers when needed... I have had dextrose IV treatments... I have had Panhematin treatments... they usually help with the acute issues but have no lasting effect. To the world outside of my body I look about 20 pounds overweight, tired with dark under eye circles... but otherwise normal... normal... the same as everyone else... they don't understand... they can be condescending and both intentionally and unintentionally hurtful... I appreciate that I am "Preaching to the Choir"... It is so very comforting to know that there are other people who understand what I am talking about... other people who can relate... other people like me. Thank You so very much for being there, for sharing your experiences... and for listening.
Best Wishes~
Tracie

I Pray That God is With Me

Neuropathies (central, autonomic and peripheral): headache, bilateral leg pain (bones/joints), heels like pins

GI: burning nausea

GU: dysuria

Muscular: weak, heavy, poor endurance, fatigued

Psychiatric: cognitive slowing, confusion, memory lapses, restless, irritable, emotionally labile,

Sensory: neuro-sensory hypersensitivity (sound, light, motion, touch), ringing in ears

Pain/Comfort: leg bones radiate with pain, headache through eyes to back of skull, insomnia, restless/ cannot find a comfortable position

Sleep/Rest: see Pain/Comfort

Self-Propelled Disease Management:
Ugh I am so incredibly frustrated! For the life of me I cannot figure out where the "shut off" valve is to my Porphyria... Since my recent hospitalization, complete with IV Dextrose & Four Panhematin Treatments... I came home and over the following week seemed to gradually return to my normal baseline self... I went back to work last Thursday June 30th and my family went out of town for the holiday weekend... the house was calm and quiet...work was fine... it was a bit of a challenge to make it through all 8 hours of the work day with low endurance... but it was ok...then Friday came and went without too much issue (still a lot of low endurance/ fatigue)... I was off work and home Saturday and Sunday... I knew I should take advantage of the quiet time and rest... but when I looked around the house... well it hadn't had a good cleaning in weeks due to my health... I felt disgusted by the scene and began scrubbing, cleaning, laundering...etc. when I finished everything it was Sunday afternoon! The house looked great but it came with a price... I started feeling a "little cloudy" mentally... I forgot a teapot on the stove and burned out all of the water... I went outside and left the kitchen sink running... when I came back in there was water everywhere!!! I went to bed early Sunday night, but couldn't fall asleep until after midnight with Ativan, Naproxen and Magnesium! Monday July 4th I was late to work...still not feeling "myself" and worked till 2pm... I came home and stayed in for the night... Tuesday I worked 8am to 4:30pm, came home, crawled to the couch and put my feet up... 45 minutes later my family returned home from their trip. It was good to see them, the energy they brought through the front door was bittersweet... I truly had missed them all... but as the night progressed so did the energy, volume and negativity. I could feel my nervous system struggling, firing off like a fireworks display... I gently reminded them that these behavior choices are unhealthy for everyone... they agreed for the "millionth" time and I went to bed at 10pm. I struggled at work today, my co worker's perfume put me over the edge and I finally left for home at about 10:30am... A quiet, dark, cool place to rest works best to counteract my hypersensitive nervous system... a warm, weighted heating pad works best for my leg/ nausea issues. I try so hard to keep a positive outlook... I search for the "meaning"... I try to discover what I can do to change my situation... but today I feel powerless. I pray that God is with me.

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

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
-impulsivity
-stealing
-lying
-fabricating untruthful stories
-undermining
-manipulation
-deciet
-trickery
-blatent disrespect
-unkind remarks
-thoughtlessness
-embarrassment
-aggression
-violence
-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!!!

DNP

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...
But...
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