Narrative Note

Well my original plan was to make daily AIP Neuro-assessment entries for one full year... but the plan has changed.
I began feeling like the rote nature of the templated daily entries wasn't as expressive as I like to be... I started feeling like documenting was just another daily chore...no depth..boring...
Then I got a call from my father... "The Oncologist said dad had two to four weeks left to live"... that came like a "sucker punch" to the gut!
At first I used denial to cope... then I packed my bags and it was off to New York...where I was blessed to spend the last 17 days of his life helping him navigate the transition from this world to the next. My last (and final) two templated entries were made during the initial days of my stay with dad.

Any "spiritual" uncertainty I felt prior to this experience...
disappeared as I gained insight into death and the dying process.

Dad didn't want to go yet...he was only 59 and wanted more time...
during his last 5 days...dad stayed right on the very edge of this world and the next...as if straddling the two...one leg ice cold...and one leg blazing hot...no food...no water...a body consumed by ammonia and other noxious toxins...yet a strong will to stay connected with the ones he loved... medically his lab values were off the chart... medically there is no comprehensible way that he could remain coherent... he lay in the hospital bed unmoved...breathing in ways that triggered our anxiety...after hours of silent disconnect...dad would "pop-in" at just the right moment...puckering up for a kiss from his loving wife...vocalizing words of endearment in response to personal whispers and gentle touches...then on December 7Th he left this world completely.

For me...
Spirituality, Medicine and Emotion are now "all tangled-up"... in my mind...in my "heart"... in my very "soul".


The Impact of a Porphyria Diagnosis

The very moment that my father's hospital bed was delivered, I received a telephone call... my parents' DNA testing had been completed...the results were in...
Dad had AIP!
So many feelings and thoughts were speeding through my mind that day...
Why hadn't his doctors ever tested him?
He had taken so many, many medications that had made is health status worse and in relation his life shorter (he had seizure disorder due to lesions on his brain)... If he had been diagnosed earlier he would have made different treatment choices and been much healthier.
I was very emotional and my own AIP was in a colicky state.

Today...after digesting it all for a few weeks...
I accept that we are all human, and therefore we are all mortal...
nothing can change that...
The RN in me still feels strongly that physicians have a responsibility to improve their knowledge deficit when it comes to Porphyria...
Porphyria Diagnostic Testing...
Porphyria Medical Case Management...
and Porphyria Treatment.

So no more templated AIP entries... only descriptive entries that use words like brush strokes to paint the picture of my meaning.

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- calm, melancholy
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- fair night's sleep... concerned about dad
 Self-Propelled Disease Management:
- good nutrition

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- calm, melancholy
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- fair night's sleep... concerned about dad... tired
 Self-Propelled Disease Management:
- good nutrition

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- calm, melancholy
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- poor night's sleep... worked at hospital 8am to 4pm
 Self-Propelled Disease Management:
- good nutrition

*Taking Leave of Abscece from work and family to be with my father. Leaving tomorrow.

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- slowed
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- calm, melancholy
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- poor night's sleep... worked at hospital 8am to 4pm... good endurance
 Self-Propelled Disease Management:
- good nutrition

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- stressful Reactive Attachment Disorder (RAD) with children, stressful ADHD with children/spouse, melancholy
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- poor night's sleep... day of running errands...very tired and heavy feeling
 Self-Propelled Disease Management:
- good nutrition

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- stressful Reactive Attachment Disorder (RAD) with children, melancholy
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- fair night's sleep... calm day at home
 Self-Propelled Disease Management:
- good nutrition

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- mild RBCs with urination
 Muscular- weak
 Immune- s/p UTI
 Cardiac- ok
 Respiratory- ok
 Psychiatric- calm, melancholy
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- fair night's sleep... calm day at home
 Self-Propelled Disease Management:
- good nutrition
- AIP active episode continues to resolve

Daily Post

 Neuropathies (central, autonomic and peripheral)- lower legs, heels
 GI- ok
 GU- mild RBCs and pain with urination
 Muscular- weak
 Immune- s/p UTI
 Cardiac- ok
 Respiratory- ok
 Psychiatric- calm, melancholy
 Sensory- eyes sensitive to light, sensitive to sensory stimuli
 Pain/Comfort- mild nausea, light headed, mild GU pain
 Sleep/Rest- fair night's sleep... day with family
 Self-Propelled Disease Management:
- good nutrition
- AIP active episode continues to resolve

Daily Post

 Neuropathies (central, autonomic and peripheral)- lower legs, heels
 GI- ok
 GU- mild RBCs and pain with urination
 Muscular- weak
 Immune- s/p UTI
 Cardiac- ok
 Respiratory- ok
 Psychiatric- calm
 Sensory- eyes sensitive to light, sensitive to sensory stimuli
 Pain/Comfort- mild nausea, light headed, mild GU pain
 Sleep/Rest- fair night's sleep... worked 8am to 4pm at hospital...very tired and fatigued
 Self-Propelled Disease Management:
- good nutrition
- AIP active episode resolving

Narrative Note

I have been "spinning my wheels...stuck in a muddy rut" for the past two days.

Recently my health went from a great stretch of feeling well... to a furocious urinary tract infection (UTI) that required an antibiotic to treat... the antibiotic triggered my Acute Porphyria (AIP) and irritated my Auto-Immune Thyroiditis (HAIT)... Then, my father's doctor tells him he has weeks before he leaves this world...

My physical self is miserable...
My mental status vacilates between anger, feeling overwhelmingly distraught and raw sadness...
I have not been fit to interact with man or beast due to my negative demeanor.

The daybed in my den is where I've been...in seclusion...sorting my thoughts...and resting.

Life is really hard sometimes.

Today I forced myself to be proactive...
I got myself together and met a friend for a nice lunch...
I priced weekly tanning bed sessions to decrease the impact that lack of sunshine has on my mental health (prone to Seasonal Affective Disorder)...
I stopped taking the anitibiotic that is triggering my AIP and HAIT...
I called my doctor to let her know what is going on...
I doubled my cranberry capsule intake...
I took extra vitamin C...
I took a short nap...
and
I prayed for my father.

Daily Post

 Neuropathies (central, autonomic and peripheral)- heels, feet, legs, hands
 GI- ok
 GU- Macrobid Rx for UTI... last dose taken at 11pm last night...caused AIP trigger
 Muscular- weak, pain all extremities, a lot of "twitching" and jumping
 Immune- UTI
 Cardiac- ok
 Respiratory- ok
 Psychiatric- physically unwell, emotionally frail, stressed
 Sensory- eyes sensitive to light, sensitive to sensory stimuli
 Pain/Comfort- significant nausea, headache, pain all extremities, mild UTI pain
 Sleep/Rest- poor sleep x2 nights... rested yesterday
 Self-Propelled Disease Management:
- good nutrition
- AIP triggered by Macrobid worse each day taken...stopped with last dose at 11pm last night

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- Macrobid Rx for UTI working well
 Muscular- ok
 Immune- UTI
 Cardiac- ok
 Respiratory- ok
 Psychiatric- physically unwell
 Sensory- eyes sensitive to light
 Pain/Comfort- nausea, headache, mild UTI pain
 Sleep/Rest- fair night's sleep, back to work at the hospital 8am to 5pm
 Self-Propelled Disease Management:
- good nutrition
- monitor AIP r/t Rx for UTI

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- Macrobid Rx for UTI working well
 Muscular- ok
 Immune- UTI
 Cardiac- ok
 Respiratory- ok
 Psychiatric- physically unwell
 Sensory- eyes sensitive to light
 Pain/Comfort- nausea, headache, mild UTI pain
 Sleep/Rest- fair night's sleep, another day in bed
 Self-Propelled Disease Management:
- good nutrition
- monitor AIP r/t Rx for UTI

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- Positive UTI... Macrobid Rx... on "Bad" list for AIP but other Rx will not tx
 Muscular- ok
 Immune- UTI
 Cardiac- ok
 Respiratory- ok
 Psychiatric- physically unwell
 Sensory- eyes sensitive to light
 Pain/Comfort- Acute UTI pain, nausea, headache
 Sleep/Rest- fair night's sleep, day in bed
 Self-Propelled Disease Management:
- good nutrition
- taking extra cranberry caps
- monitor AIP r/t Rx for UTI

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- R/O UTI Brewing??? (pain and burning)
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- good day
 Sensory- ok
 Pain/Comfort- headache in evening, ?UTI
 Sleep/Rest- fair night's sleep, day with family
 Self-Propelled Disease Management:
- another good nutrition day
- taking extra cranberry caps

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- good day
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- fair night's sleep, day with family
 Self-Propelled Disease Management:
- another good nutrition day

Narrative Note

Another Meal Creation
In a Cast iron skillet...
Saute a large cubed portabella mushroom in olive oil garlic,onion and Italian seasonings...
Add 1 can organic diced tomatoes and 1 can organic tomato paste...
Simmer
Steam some broccoli
In a large bowl combine/ toss: steamed broccoli, mushroom sauce, and a bunch of organic salad greens...
Add/ Mix-in fresh home made croutons (Ezekiel Sprouted Bread)...
Top with fresh grated hard goat cheese
Delicious!!!

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- good day
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- fair night's sleep, work at hospital 8am to 5pm, evening with family
 Self-Propelled Disease Management:
- Another packed insulated shopping bag for eating at work... cold filtered water to drink... hot filtered water for oatmeal... a variety of instant oatmeal packets...left over blackened salmon... organic salad greens...home made cranberry sauce...baked pumpkin seeds...it made for an awesome salad when put together!

Narrative Note

6 month follow-up visit with Hematologist
I have conflicting feelings about my Hematologist...
He is very well educated (MD/PhD)and has lived in several places throughout the world.
We have been managing my AIP together for about 3 years (even before my self navigated diagnosis) yet he has not yet invested in understanding AIP beyond giving dextrose and heme infusions... he knows how to treat an active phase of AIP but was unaware, until I counselled him today, that the liver is impacted by AIP.
Sometimes I get anxious that I understand more about my disease than my physician..

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- good day
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- fair night's sleep, work at hospital 8am to 2:30pm, evening lady's get-together with work associates
 Self-Propelled Disease Management:
- Today I packed an insulated shopping bag for work... cold filtered water to drink... hot filtered water for oatmeal... a variety of instant oatmeal packets...carrot juice... sandwich fixings left over from yesterday...and a little home made cranberry sauce that I made last night (to use as a spread on my sandwich)... it took quite a bit of planning but worked out pretty well...I even passed up several opportunities for cookies, candy and pastries while working!
- Went for my 6 month follow-up with my Hematologist this afternoon (see Narrative Note)

Narrative Note

Wow! I felt better today than I have in a long long time! I really think that my disciplined diet and hydration over the last several days is effecting me in a significantly positive way! My GI system is running very well, my neuro system is calm and my mental status is in a good place...what more could a person want!

Well... it should be easy to "stick to it" if it makes such a blatant difference, but it isn't easy at all. It requires constant planning and preparation. I am horrible about consistent diet planning... but my goal is to try hard to push through, remained disciplined...get healthier and loose weight. Go me!!!

Today's Awesome Sandwich Creation:
In a Cast Iron Frying Pan

Saute Sliced Portabella Mushroom in Olive Oil, Apple Cider Vinegar, Orange Juice and Fresh Cranberries with Salt and Pepper to taste

Drain excess liquid and throw in a handful of mixed organic salad greens then toss all

Place all on toasted Ezekiel Sprouted Grain Bread

Add peeled and sliced Apple pieces

Add soft Goat Cheese

Serve Warm

Enjoy!!!

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- nice day
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- good night's sleep, day to myself...running errands and cooking
 Self-Propelled Disease Management:
- Another day of juicing carrots and eating super healthy!! (Day#4)

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- ok
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- increased stressful day
 Sensory- light sensitivity
 Pain/Comfort- ok
 Sleep/Rest- poor night's sleep... sick husband, spent day running errands with family
 Self-Propelled Disease Management:
- Vegan/ Mostly Organic Day #3!!
- 6 month lab work drawn today

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- mild nausea
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- ok
 Respiratory- ok
 Psychiatric- ok
 Sensory- light sensitivity
 Pain/Comfort- mild nausea, light-headed
 Sleep/Rest- poor night's sleep... sick child, spent day running errands
 Self-Propelled Disease Management:
- Vegan/ Mostly Organic Day #2!!
- 6 month follow-up with Primary Doctor today

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- nauseous, slowed GI
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- occasional irregular beat
 Respiratory- ok
 Psychiatric- ok
 Sensory- light sensitivity
 Pain/Comfort- nausea, light-headed
 Sleep/Rest- poor night's sleep, awake 4am on... spent day with family
 Self-Propelled Disease Management:
- Lots of organic fruits and vegetables raw and juiced
- Continued intermittent feeling colicky and irritable... restless

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- nauseous, slowed GI
 GU- ok
 Muscular- weak
 Immune- ok
 Cardiac- occasional irregular beat
 Respiratory- ok
 Psychiatric- easily confused, easily irritated
 Sensory- light sensitivity
 Pain/Comfort- head ache, nausea, abdominal pain
 Sleep/Rest- poor night's sleep, home most of day resting...
 Self-Propelled Disease Management:
- Hard to eat with nausea... carb loading
- Family stressors decreased significantly... feel colicky and irritable... restless

Daily Post

 Neuropathies (central, autonomic and peripheral)- ok
 GI- nauseous, slowed GI
 GU- dark urine
 Muscular- weak and "heavy"
 Immune- ok
 Cardiac- ok
 Respiratory- slightly shallow/ "weighted"
 Psychiatric- delayed word recall and connection making, easily confused, continued high level of stress at home, irritable
 Sensory- light sensitivity, not hearing right
 Pain/Comfort- lower legs and heels ache, nausea
 Sleep/Rest- fair night's sleep (with Ativan & Naproxen), home again all day... assisted husband in meeting program deadline for his Masters project
 Self-Propelled Disease Management:
- Hard to eat with nausea... carb loading
- Family stressors beginning to decrease... tired... irritable

Daily Post

 Neuropathies (central, autonomic and peripheral)- Heels and lower legs, hands and fingers
 GI- very nauseous, took Phenergan Suppository... helped some
 GU- dark urine
 Muscular- weak and "heavy"
 Immune- ok
 Cardiac- ok
 Respiratory- slightly shallow/ "weighted"
 Psychiatric- delayed word recall and connection making, continued high level of stress at home, easily irritated
 Sensory- light sensitivity, not hearing right
 Pain/Comfort- lower legs and heels ache, intermittent episodes of back and abdominal pain
 Sleep/Rest- fair night's sleep (with Ativan & Naproxen), home all day... stayed on couch or in bed most of the day, husband home all day...high stress Masters Program Completion
 Self-Propelled Disease Management:
- Hard to eat with nausea... fluids with honey, Ezekiel toast with jelly... Gatorade
- Continued high level of family stressors... worn thin... irritable

Daily Post

 Neuropathies (central, autonomic and peripheral)- Heels and lower legs, Heart
 GI- slowed GI Motility
 GU- ok
 Muscular- noted slight gait changes...primarily r/t right lower extremity, one episode of L hand "weirdness" this afternoon"
 Immune- ok
 Cardiac- ok
 Respiratory- slightly more shallow
 Psychiatric- delayed word recall and connection making, continued high level of stress at home, easily irritated
 Sensory- light sensitivity, not hearing right
 Pain/Comfort- lower legs and heels ache
 Sleep/Rest- very difficult morning, feel extremely fatigued, fair night's sleep, worked 8- 4:30 at hospital, evening at home with family, rested alone in evening to decrease sensory input and buffer stress
 Self-Propelled Disease Management:
- Good carbohydrate management
- Continued high level of family stressors... worn thin... irritable
- Appointment w/ primary doctor & hematologist next week... will explore neuro changes and ways to manage fitness.
- Called APF and requested Physician Education Packets Re: Porphyria to improve disease awareness in my area.

Daily Post

 Neuropathies (central, autonomic and peripheral)- Heels and lower legs, Heart
 GI- slowed GI Motility
 GU- ok
 Muscular- weird things... I thought it was a fluke three days ago when my left ring finger went straight and I could not will it to bend... but it happened again last night... then this afternoon my whole left arm went straight and I couldn't bend it???? weird! no pain... it only lasts for 30seconds or so.
 Immune- ok
 Cardiac- occasional spontaneous episodes of racing and palpitations
 Respiratory- ok
 Psychiatric- this afternoon my hand wouldn't write what my thoughts told it to... for example: I would mean to write an E and would instead produce some other letter... weird again... this started about 1:30pm and went on intermittently for several hours...delayed word recall and connection making, continued high level of stress at home
 Sensory- light sensitivity, not hearing right
 Pain/Comfort- lower legs and heels ache
 Sleep/Rest- fair night's sleep, worked 8- 4:30 at hospital, evening at home with family, extremely tired!!!!, became overwhelmingly fatigued about 1pm, after lunch and lasted till about 3:30pm
 Self-Propelled Disease Management:
- Good carbohydrate management
- Continued high level of family stressors... tired

Narrative Note

Reactive Attachment Disorder
Attention Deficit Hyperactivity Disorder
Sensory Processing Disorder
Anxiety Disorder
The competitive nature of twin boys...

Things that my family struggles with...
Things that trigger Acute Porphyria

Daily Post

 Neuropathies (central, autonomic and peripheral)- Heels and lower legs, Heart
 GI- slowed GI Motility
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- occasional spontaneous episodes of racing and palpitations
 Respiratory- ok
 Psychiatric- delayed word recall and connection making, continued high level of stress r/t my children's behaviors and my spouse's anxiety
 Sensory- light sensitivity
 Pain/Comfort- lower legs and heels ache
 Sleep/Rest- fair night's sleep, worked 8- 4:30 at hospital, busy evening with family errands/duties, extremely tired
 Self-Propelled Disease Management:
- Good carbohydrate management
- Increased family stressors... trying to cope effectively

Daily Post

 Neuropathies (central, autonomic and peripheral)- Heels and lower legs, Heart
 GI- slowed GI Motility
 GU- ok
 Muscular- weak and heavy, recently noted and increasingly painful hardened nodules on both wrists... slight numbness in finger tips
 Immune- ok
 Cardiac- occasional spontaneous episodes of racing and palpitations
 Respiratory- ok
 Psychiatric- slightly "cloudy" feeling, delayed word recall and connection making, stressed and irritable r/t my children's negative behaviors and my spouse's anxiety 2nd to poor time management and a lack of follow-through
 Sensory- light sensitivity, difficulty managing multiple sensory stimuli, great irritation r/t noise and commotion
 Pain/Comfort- lower legs and heels ache, generally irritable feeling, migraine headache afternoon & evening
 Sleep/Rest- fair night's sleep, up late with spouse, tired, family management all day
 Self-Propelled Disease Management:
- Good carbohydrate management
- Increased family stressors... trying to cope effectively
- Poor sleep/rest... will take Rx to improve sleep tonight... have to work full day at the hospital tomorrow

Daily Post

 Neuropathies (central, autonomic and peripheral)- Heels and lower legs, Heart
 GI- slowed GI Motility
 GU- ok
 Muscular- weak and heavy
 Immune- ok
 Cardiac- occasional spontaneous episodes of racing and palpitations
 Respiratory- ok
 Psychiatric- calm, slightly "cloudy" feeling, delayed word recall and connection making
 Sensory- light sensitivity, difficulty managing multiple sensory stimuli, bilateral inner ear burning/ ringing
 Pain/Comfort- lower legs and heels ache
 Sleep/Rest- poor night's sleep, up late with family, tired, family management all day
 Self-Propelled Disease Management:
- Good carbohydrate management
- Increased family stressors... trying to cope effectively
- Poor sleep/rest... hope to sleep well tonight and rest more tomorrow

Daily Post

 Neuropathies (central, autonomic and peripheral)- Heels and lower legs
 GI- slowed GI Motility
 GU- ok
 Muscular- weak and heavy
 Immune- ok
 Cardiac- no problems
 Respiratory- ok
 Psychiatric- calm, slightly "cloudy" feeling
 Sensory- light sensitivity, difficulty managing multiple sensory stimuli
 Pain/Comfort- lower legs and heels ache
 Sleep/Rest- poor night's sleep, up 3x in night, tired all day...extremely tired and weak in afternoon, worked at hospital 8a-5p
 Self-Propelled Disease Management:
- Good carbohydrate management

Daily Post

 Neuropathies (central, autonomic and peripheral)- Heels and lower legs
 GI- slowed GI Motility
 GU- ok
 Muscular- ok
 Immune- Thyroid feels swollen and irritable
 Cardiac- ok
 Respiratory- ok
 Psychiatric- calm, pleasant
 Sensory- ok
 Pain/Comfort- ok
 Sleep/Rest- fair night's sleep...up x3, tired 4pm on...busy day working at hospital
 Self-Propelled Disease Management:
- Good carbohydrate management

*Really felt good all day!

Narrative Note

Traveling is an adventure...but it always takes its toll on the body... altered diet...altered GI patterns...staying up late...getting up early...the tendency to fit a lot into a small time...making the most of the time available.

Spending time connecting with family fills my spirit and significantly improves the quality of my life.

On another note...
My father and mother consented to the DNA test for AIP.
I swabbed their cheeks while on vacation.
I am unsure of my AIP genetic origin... but respect the weighted sensitivity of adding a, "label" to some one's life.
As a nurse I feel that knowing you can avoid potential health crises by modifying lifestyle choices means... "knowledge is power"!
Still, I will move forward gently in determining my family's AIP heritage.

Daily Post

 Neuropathies (central, autonomic and peripheral)- Heels and lower legs
 GI- slowed GI Motility, increased gas & bloating, recovering from gluten and dairy eaten while traveling
 GU- ok
 Muscular- ok
 Immune- ok
 Cardiac- no problems
 Respiratory- ok
 Psychiatric- calm
 Sensory- light sensitivity, difficulty managing multiple sensory stimuli
 Pain/Comfort- heartburn, lower legs intermittent sharp
 Sleep/Rest- fair night's sleep, tired all day, house quiet...rested, unpacked, cleaned, laundry
 Self-Propelled Disease Management:
- Good carbohydrate management
- Drove 8 hours home yesterday from family visit... exhausted today, but in "good spirits"

*Missed post yesterday d/t being on the road traveling.

Daily Post

 Neuropathies (central, autonomic and peripheral)- GI
 GI- slowed GI Motility, increased gas & bloating, ate a lot of gluten and some dairy over the last 3 days
 GU- mild fluid retention
 Muscular- ok
 Immune- ok
 Cardiac- no problems
 Respiratory- ok
 Psychiatric- calm
 Sensory- light sensitivity, some difficulty managing multiple sensory stimuli
 Pain/Comfort- no problem
 Sleep/Rest- fair night's sleep, feel tired all day
 Self-Propelled Disease Management:
- Good carbohydrate management
- Good day of quality time with family...vacationing in Central NY

Daily Post

 Neuropathies (central, autonomic and peripheral)- lower legs/ heels
 GI- no problem
 GU- no problem
 Muscular- mild "heavy" feeling arms and legs
 Immune- ok
 Cardiac- no problems
 Respiratory- ok
 Psychiatric- mild word recall delay
 Sensory- light sensitivity, some difficulty managing multiple sensory stimuli
 Pain/Comfort- headache
 Sleep/Rest- fair night's sleep, very tired this afternoon/evening
 Self-Propelled Disease Management:
- Good carbohydrate management
- Good day of quality time with family...vacationing in Central NY

*Traveling 10/15/2010... missed post due to lack of Internet availability.

Daily Post

 Neuropathies (central, autonomic and peripheral)- GI
 GI- Slowed GI motility
 GU- no problem
 Muscular- ok
 Immune- ok
 Cardiac- no problems
 Respiratory- ok
 Psychiatric- ok
 Sensory- light sensitivity
 Pain/Comfort- no problems
 Sleep/Rest- poor night's sleep
 Self-Propelled Disease Management:
- Good dietary management
- Good day of quality time with my mother Vactioning in Central NY

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels, GI
 GI- Slowed GI motility
 GU- no problem
 Muscular- ok
 Immune- ok
 Cardiac- no problems
 Respiratory- ok
 Psychiatric- ok
 Sensory- light sensitivity
 Pain/Comfort- morning headache, afternoon no problems
 Sleep/Rest- good night's sleep (Ativan and Naproxen), asleep at 11pm up at 7:00am, day of errands, evening with family
 Self-Propelled Disease Management:
- Good dietary management
- Good sleep
- Good day of quality time with my mother

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels, GI
 GI- Slowed GI motility
 GU- no problem
 Muscular- ok
 Immune- ok
 Cardiac- no problems
 Respiratory- ok
 Psychiatric- ok
 Sensory- ok
 Pain/Comfort- afternoon/evening minor right and left lower legs/ heels ache
 Sleep/Rest- good night's sleep (Ativan and Naproxen), asleep at 11pm up at 6:30am, worked at hospital 8am- 4:30pm, super tired in the afternoon, nice evening visiting with my mother
 Self-Propelled Disease Management:
- Good dietary management
- Good sleep

Narrative Note

Medications & My Mental "Tug of War"

As I have previously stated I do not like to take medication.
Throughout life there have been numerous times that taking a common medication has made me feel completely miserable... I know now that it has all been related to my in-born metabolism issues.
Today I have become familiar with some medications that do not make me feel badly, in fact they help me feel better... so why do I struggle mentally to take them as prescribed?
I worry that if I take a drug to treat a problem and I need to take it too frequently to manage the problem...my body may become dependent on the drug... instead of trying to self-regulate.
For example:
I am constantly battling insomnia...
I have two types of trouble... falling asleep and staying asleep.
I also have a BIG problem with Non-Restful-Sleep...
I feel unrested and tired upon waking.
Ativan and Naproxen can often calm my
"Haphazard Nervous System Fireworks"
(racing thoughts...sudden muscle jerks...racing heart...stabbing/shooting pains...terrible headaches)
I can often catch a "decent" night's sleep/rest when I take 0.5mg of Ativan, 500mg of Naproxen and 400mg of Magnesium.
When I rest well, I feel SO much better the next day!
Then I will get concerned because perhaps I have used the medication for the past two nights so I refuse to take it on night three, thinking that I don't want my body to loose the ability to self regulate and calm itself down...so I get a poor night's sleep and the dominoes begin to fall, cascading into the next day, creating increased problems.
Perhaps my nervous system does have episodes of time that it looses the ability to self-regulate...to calm itself...I feel it firing out of control and it scares me.
I guess the best plan is one of balancing addictive caution and symptom management.

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels
 GI- Nausea
 GU- no problem
 Muscular- ok
 Immune- ok
 Cardiac- no problems
 Respiratory- ok
 Psychiatric- ok
 Sensory- ok
 Pain/Comfort- minor right and left lower legs/ heels ache
 Sleep/Rest- good night's sleep (Ativan and Naproxen), asleep at 10pm up at 5:30am, worked at hospital 8am- 4:30pm, quiet evening (family at the beach...house empty!)
 Self-Propelled Disease Management:
- Good dietary management
- Natural Ginger Mints to calm nausea
- Good sleep

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels
 GI- Nausea
 GU- no problem
 Muscular- ok
 Immune- ok
 Cardiac- no problems
 Respiratory- ok
 Psychiatric- ok
 Sensory- ok
 Pain/Comfort- right and left lower legs/ heels ache
 Sleep/Rest- good night's sleep (Ativan and Naproxen), asleep at 10pm up at 6:30am, worked at hospital 8am- 6pm (busy day)
 Self-Propelled Disease Management:
- Good dietary management today

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels
 GI- Nausea, slowed GI motility, bloating
 GU- no problem
 Muscular- "heavy feeling", weak
 Immune- sneezing x24hours
 Cardiac- no problems
 Respiratory- ok
 Psychiatric- ok, tired, frustrated with someone close to me
 Sensory- eyes still very light sensitive
 Pain/Comfort- right and left lower legs/ heels ache
 Sleep/Rest- poor night's sleep, asleep at 1 am up at 6:30 am...feeling "unsettled"...spent the day at home with husband and children...took a two hour nap
 Self-Propelled Disease Management:
-Restocked grocery supply... good dietary management today... home cooked potato soup
-Tried to take it easy as much as possible
-Tried to rest legs and elevate as much as possible

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels,GI
 GI- Nausea, slowed GI motility, indigestion, bloating
 GU- no problem
 Muscular- "heavy feeling", weak
 Immune- ok
 Cardiac- no problems
 Respiratory- awoke several times last night with lungs feeling "heavy"
 Psychiatric- ok, calm, tired
 Sensory- eyes very light sensitive
 Pain/Comfort- right and left lower legs/ heels ache
 Sleep/Rest- poor night's sleep, asleep at 10:30pm up several times in the night...feeling "unsettled"...spent the day at home with husband and children...took a one hour nap
 Self-Propelled Disease Management:
-Need to restock groceries... less than adequate dietary management today
-Tried to take it easy as much as possible
-Tried to rest legs and elevate as much as possible
-Completed a 33minute Acute Porphyria Continuing Education Presentation for Health Care Providers... Medscape...top Porphyria Experts...excellent densely packed information...hopeful regarding enzyme replacement therapy availability within the next few years

Narrative Note

Chronic Heel Neuropathy
My heel issues started about a year and a half ago...
My heels would get really irritated when I went to bed and my heels rested on the mattress as I lay down. The irritation has become progressively worse and now spills over into my days affecting the shoes I need to wear, how long I can comfortably stand or walk. I know I could take some pharmaceutical agent that might decrease my discomfort... but it wouldn't correct the underlying problem only treat the symptom. I try to use natural, non chemical treatments as much as possible.
My Heel Treatments:
1. Sleep with my feet hanging off the end of the bed, so my heels hang freely in the air... not touching anything
2. Sleep with a puffy pillow under my lower legs so my feet can hang off the other side...heels in the air, not touching anything.
3. Wear comfortable wedge shoes that put the weight on the balls of my feet when I walk, instead of my heels.
4. Sit down and put my feet up when I can.
5. Naproxen at bedtime does help somewhat.

I have been giving more thought to getting some nervous system evaluations/assessments done to see where I am at...
Till now I have felt that I would rather just understand the disease process and address issues as they arise. I still feel that way but I also notice a chronic decline in my neurological functioning (GI, Urinary, Heart, Cognition, Peripheral) that might be beneficial to track. I also seek more natural treatment interventions to help me best manage.

I'll think more on it and talk with my Primary Doctor in the near future.

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels,GI
 GI- slowed GI motility, indigestion, bloating
 GU- no problem
 Muscular- ok in the morning, progressive weakness in afternoon (esp. lower legs)
 Immune- ok
 Cardiac- no problems
 Respiratory- no problems
 Psychiatric- ok, calm
 Sensory- eyes very light sensitive
 Pain/Comfort- right and left lower legs/ heels ache (worse in afternoon)
 Sleep/Rest- fair night's sleep, asleep at 10:30pm & up @ 4:30am with son (Ativan & Naproxen before bed), busy day working at the hospital, very tired & weak this afternoon
 Self-Propelled Disease Management:
-maintain appropriate carbohydrate intake
-feeling over-exerted working 5days/week and managing family, it feels like a great accomplishment to reach 5pm and successfully complete my work day!

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels
 GI- slowed GI motility
 GU- no problem
 Muscular- improved fine motor strength, improved general endurance
 Immune- ok
 Cardiac- no problems
 Respiratory- no problems
 Psychiatric- slow word recall, decreased ability to multi-task
 Sensory- ok
 Pain/Comfort- right and left lower legs ache
 Sleep/Rest- great night's sleep, asleep at 8:30pm & up @ 6:30am (Ativan & Naproxen before bed), busy day working at the hospital, very tired this afternoon
 Self-Propelled Disease Management:
-maintain appropriate carbohydrate intake
-still feeling over-exerted between working 5days/week and managing family challenges... today was much better than yesterday!

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels, Urinary bladder, GI
 GI- altered elimination, slowed GI motility, constipation, upset stomach
 GU- altered voiding, neuro-bladder holding urine
 Muscular- weak fine motor strength, poor general endurance
 Immune- slight viral illness shared with my children (upset stomach, malaise, headache)
 Cardiac- no problems
 Respiratory- no problems
 Psychiatric- poor word recall, decreased ability to complete complex thought process, decreased ability to multi-task, unable to recall common knowledge, easily irritated, easily emotional
 Sensory- easily over sensitive to sensory input of environmental surroundings (noise, smell, visuals, things touching me)
 Pain/Comfort- mild headache, mild upset stomach, intermittent sharp, shooting right lower leg pain
 Sleep/Rest- poor night sleep, asleep at 10pm & up @ 4am, busy day teaching Certified Medicine Aide Program, stressful evening
 Self-Propelled Disease Management:
-maintain appropriate carbohydrate intake
-two part-time jobs is too much... decided not to teach this course again... feeling over-exerted between working 5days/week and managing family challenges...scheduled to work for the hospital tomorrow, concerned...

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels, Urinary bladder, GI
 GI- altered elimination, slowed GI motility, constipation, upset stomach
 GU- altered voiding, neuro-bladder holding urine
 Muscular- weak fine motor strength
 Immune- slight viral illness shared with my children (upset stomach, malaise, headache)
 Cardiac- palpitations in the night
 Respiratory- no problems
 Psychiatric- slowed word recall, decreased ability to complete complex thought process, decreased ability to multi-task
 Sensory- easily over sensitive to sensory input of environmental surroundings (noise, smell, visuals, things touching me)
 Pain/Comfort- headache, upset stomach 5/10, intermittent sharp, shooting right lower leg pain
 Sleep/Rest- fair night sleep (w/Ativan & Naproxen), asleep at 10pm & up @ 5:30am, busy day teaching Certified Medicine Aide Program, stressful evening
 Self-Propelled Disease Management:
-maintain appropriate carbohydrate intake
-medications to help improve sleep/rest and discourage over exertion

Managing AIP becomes significantly more challenging when...
parenting twin 7 year old boys with Reactive Attachment Disorder (RAD)
and...
supporting a 19 year old daughter with AIP that manifests itself as "Mr Hyde" during her Luteal phases.

Narrative Note

Tonight while watching a movie, I was exposed to a painting by Glenn Wessels.
The piece is called, "Last Leaf Light".
I felt an immediate connection... like sunshine through beautifully colored stained glass windows... a hug from grandma...or the way the right song can warm your spirits.
The painting reminded me of my journey in life...
ever trying to: "look on the bright side",
and always trying to keep my hope and faith in a "positive light".
It was vibrant and chock-full of autumnal hues (my absolute favorite).
I wanted to find a replica for my mantle but...alas Google came up empty and my heart sank.
So...
I froze the scene in the film and took a digital photo in hopes of capturing the image for future inspiration.
Maybe I could buy a canvas and create my own version of "Tsue's Light Thru The Leaves".... sounds like a plan.
After all...
All work and no artistic expression makes for a spiritless girl.

Most Importantly:
Connecting, in meaningful ways, with the world we live in is what "Quality of Life" is really all about.

Daily Post

 Neuropathies (central, autonomic and peripheral)- chronic heels
 GI- BM x1, upset stomach
 GU- altered voiding, neuro-bladder holding urine
 Muscular- ok
 Immune- slight viral illness shared with my children (upset stomach, malaise, headache)
 Cardiac- palpitations in the night
 Respiratory- no problems
 Psychiatric- clear thinking, calm
 Sensory- easily over sensitive to sensory input of environmental surroundings (noise, smell, visuals, things touching me)
 Pain/Comfort- headache, upset stomach 5/10
 Sleep/Rest- fair night sleep, asleep at 10pm & up @ 6:30am, busy day teaching Certified Medicine Aide Program, nap 2:45pm to 4pm
 Self-Propelled Disease Management:
-maintain appropriate carbohydrate intake
-