Observations from the Land of Red & Shed

From the Editor…

In May 2015, a group of PRP patients and caregivers shared their random observations about living with PRP. Some observations make us laugh, some make us cringe with a returning memory. PRP is a journey…a long journey. And no one know the road from onset through remission better than the PRP community. WE are the experts.

Perhaps the following will inspire you to share your own observations of the Days of Red & Shed.

Things only a PRP patient or caregiver will understand

✽  Vacuuming the sheets — Laurel A (Kennewick, WA)

✽  Having to get new glasses because the rimless ones are constantly smeared with emollient — Kevin H (Newcastle upon Tyne, England)

✽  Thinking that my best friend is a dust buster — Eileen S (Philadelphia, PA)

✽  The piles of skin I sweep off my bathroom floor on a daily basis — Sam D (Sydney, NSW Australia_

✽  Realizing your favorite underwear is now just collecting dust, even when you are wearing them — Kevin H (Newcastle upon Tyne, England)

✽  Morning itch? Get out of bed and temperature changes and body itches like crazy! — Gena H (Merced, CA)

✽  Hands wrapped in Saran Wrap — Maria A (Hasbrouck Heights, NJ)

✽  Remembering to shake out my wallet before buying groceries — Eric S (San Luis Obispo, CA)

✽  Why you need to wear a jacket in the office when the temperature of the room is 75 °F (24 °C) — Eric S (San Luis Obispo, CA)

✽  Sitting in a comfortable chair and feeling like you’re on fire — Eric S (San Luis Obispo, CA)

✽  When your fingernails have disappeared and you have to ask the Walmart checkout person to pick up the debit card you dropped on the floor — Bill M (Plano, TX)

✽  The feeling of euphoria when you realize that you’re not really going to lose all your fingernails … this time — Eric S (San Luis Obispo, CA)

✽  Trying to have a conversation with someone who is staring at your ear or neck or forehead, whatever bit is flaking worse that day — Kevin H (Newcastle upon Tyne, England)

✽  When your son says one good thing about PRP is that he has so much cream on him he goes faster down slides! Marla W Cape Town, South Africa

✽  That beige is the only color for socks. — Alta R (Maidstone, Kent, England)

✽  Having a trail of dead skin showing everyone where you have been — Kevin H (Newcastle upon Tyne, England)

✽  When your daughter calls the days when she’s shedding a lot of skin, “skinny days!” — Stephanie R (Falls Church, VA)

✽  When going to bed was like climbing into a crisp packet! — Brenda M (Kent, England, UK_

✽  When your cat is hanging around while getting undress, and they end up looking like they been thru a blizzard — Bridget H

✽  Wearing a fleecy onesie because it trapped the flakes and was lovely and soft against my skin — Karen B Rochester, NY)

✽  When your grandchildren call you “Tinker Bill” because you  leave fairy dust everywhere — Bill M (Plano, TX)

✽  Shopping trips for the best dust buster money can buy — Kevin H (Newcastle upon Tyne, England)

✽  When you see someone you know and decide to “come out” in conversation and just hope they don’t ask why you look the way you do — Kevin H (Newcastle upon Tyne, England)

✽  Having my grandkids friends call me the skin lady and giving me a big hug! — Cathy H (China Grove, NC)

✽  Keeping my socks on when I shower…. The wetness helps to keep the skin on the soles of my feet from drying out and cracking so quickly before I can get out and grease them up and put on dry socks. Sometimes I wear them wet for awhile to help “condition” my feet — Cindy M (Longwood, F)

✽  When you have gone for weeks with minimal sleep due to itching, having to listen to someone say they know exactly how you feel because they woke up last night because it was a bit cold — Kevin H (Newcastle upon Tyne, England)

✽  Shaking your sheets and all your clothes outside — Olivier D (Thailand)

✽  Watching an ant try to carry off a skin flake as big as he is – Laurel A (Kennewick, WA)

✽  Having to battle my dogs who have decided the emollient on my legs is a tasty treat and they must lick it all off — Kevin H (Newcastle upon Tyne, England)

✽  Or how about the ones that tell you of this awesome lotion they use from Bath and Body Works for their dry skin! Guess they mean well…but ugh! they just don’t get it — Cindy M (Longwood, FL)

✽  Feeling the heat from a light bulb from ten feet away — Dan M

✽  Realizing that family and friends seem more interested in days when you look particularly good/bad as opposed to days when you feel particularly good/bad — Kevin H (Newcastle upon Tyne, England)

✽  Head to toe in Vaseline, at least an inch thick across my eyes, the relief of the frozen peas on my eyes afterwards. The strange and bizarre relief of my feet soles coming off like the soles of a shoe! — Sarah R (Skipton, North Yorkshire, England)

✽  Shed more than my cat — Violet T

✽  I had one of those experiences today. I wanted to throttle the person who kept telling me to just carry a lotion bottle with me, but it would have been inappropriate at Bible study — Laurel A (Kennewick, WA)

✽  In the beginning, Bill tossed and turned and moaned and cried out in his sleep. We had to sleep in separate rooms because of it. I washed his sheets daily and I would shake the flakes out on the back porch so the machine filters would not get stopped up. I found that I was developing a cough due to inhaling the the flakes and my lungs were not happy. So if you are doing the same, please hold your breath or wear a mask. It wasn’t something I even thought about until I started coughing — Greer C (King George County, VA)

✽  Politely smiling and listen while everyone you tell gives you their suggestion of what’s REALLY wrong with you and what would REALLY cure it. After all they know better than the dermatologist and their years of medical training — Kevin H (Newcastle upon Tyne, England)

✽  Deciding how to respond when someone asks, “Where have you been on holiday? You have really caught the sun” — Kevin H (Newcastle upon Tyne, England)

✽  Sleeping on a very large bath sheet is a very effective way of coping with night time shedding… It holds the skin flakes in the pile, reduces the uncomfortable feelings of sleeping in grit and soaks up the creams and emollients to save the sheets from staining and sticking to your skin…. in addition you can fold carefully in the morning and shake outside. — Brenda M (Kent, England, UK)

✽  Using a denti-brush to scrape out all the “dust” that has made its way into your phone, in the hope you will be able to charge it again — Kevin H (Newcastle upon Tyne, England)

Observations from the Land of Red & Shed

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