Chapter 3 — Daily Life with PRP

Every aspect of the PRP experience … coping with the 24/7 challenges to body, mind and spirit. We collect, collate and codify feedback from hundreds of fellow travelers who generously share their insights based as members of the PRP Facebook and RareConnect communities.  [D00]

What are the challenges of daily life with PRP?
A referral to Dr, Google
Observations from the Land of Red and Shed
Support for patients and families — GARD

DAILY LIFE INDEX

A
alcohol, use of
Americans with Disabilities Act (ADA)

B
bathing, showering
blood work, labs

C
caregivers, issues related to
clothing, e.g., sauna suits
comorbidities, e.g., diabetes, cellulitis, edema, cardiac issues, DVT
complications, wounds, liver
coping strategies
cost of healthcare, issues related to

D
dexterity, hands and fingers
disability, issues related to

E
ears, impaired hearing
energy and fatigue
exercise and physical activity
eyes, impaired vision, ectropion
✽  Caroline Brown on eyes (pdf)

F
family life and impaired relationships
family, friends and communication
feet, soles and toenails
flares

G
gloves
nitrile gloves, feedback (pdf)
nitrile glove feedback

H
hair, hair loss, hair care
hands, palms, fingers, fingernails
healing milestones
help, finding support
hope
✽  I hate holly more than PRP — A Remissioners Retrospective
housekeeping
humidifiers
humor and poetry

I
infections, e.g., flu, colds, etc.
itching, itch relief

J
joints, joint pain

L
legs
lip care (see mouth, teeth, lip care)
lymph nodes, glands and bumps

M
makeup, use of
marijuana, medical
moisturizing
✽   free Aquaphor and Eucerin program
Meet & Greet, FaceTime, Skype
mental  wellness
✽  staying positive
mobility, impaired
mouth, lip care

N
nutrition, vitamins and dietary supplements

P
pain management
parenting challenges
pregnancy
PRP resources
✽  PRP Alliance, Inc
✽  PRP Community on RareConnect
✽  PRP Facebook Support Group
✽  PRP Registry
✽  PRP [email] Support Group
✽  Why join the PRP Facebook and RareConnect Communities?
✽  PRP Survival Guide
Peer Review

R
researching PRP
relapses, setbacks

S
scalp
shedding, flaking
sleep, sleep deprivation
stress and triggers
sunlight and UV exposure
sweating and thermoregulation
swimming: pools, lakes and ocean

T
tattoos
teeth, dental care
testimonials, snapshots and blogs
traveling and vacations

W
weight, e.g. gaining weight, losing weight
what to say to rude people
workplace-related, e.g., co-workers, employers

Chapter 4 — Daily Life D00

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