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