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