Psoriasis touch is a touchy subject

Touch is a big deal. You feel temperature, texture, even love through touch.

How do you touch or be touched when you have psoriasis. I wish I knew. I wish I had someone who was willing to touch me. Who could see me. Who saw beyond the psoriasis. Who could tell me. I wish I could approach the world with intact skin.

I have psoriasis. It claims territory on my body. At times it marches across my body like an invading horde(arms, legs, feet, back, hands). Other times it retreats quietly to small spaces(elbows, knees).

Today it is an occupying army. It has been many months since the latest flare has swept across my body. The redness, scaling, open areas, pain and itching(OMG the pain and itching) travel with me every minute of the day.

Today, I am wearing plastic gloves everyday, white fingerless gloves over those when I go out. I wear long pants and long sleeves. But sometimes, I throw caution to the wind to wear short sleeves! As if the gloves don’t repel enough people, seeing the psoriasis on my arms makes them wrinkle their faces and either stare or turn away in disgust. Children point and ask their parents loud questions.

How do you approach the world. Are you able to touch and be touched. Are you able to shake hands with a potential employer or hold hands on a first date?

Am I being too touchy? Is this shame or something else?

Lets go clinical for a moment.

Wikipedia has something to say about it. “Psoriasis is a long-lasting autoimmune disease which is characterized by patches of abnormal skin. These skin patches are typically red, itchy, and scaly. They may vary in severity from small and localized to complete body coverage. Injury to the skin can trigger psoriatic skin changes at that spot, which is known as Koebner phenomenon.” Read more about it – WARNING: there is a picture and it is not pretty, if you are squeamish don’t follow the link. On another note the pattern of distribution is very similar to mine -oops sorry about not warning of TMI. Also it gets a bit clinical, but it has good info.

https://en.wikipedia.org/wiki/Psoriasis

back to it then.

For someone with psoriasis, the use of and search for treatments, lotions and meds is an ongoing quest. What works, what doesn’t. This quest has been part of my life for  11 years now. Yet, with a flare, the search becomes more frequent, more desperate. I frantically renew my search every time the march begins and breathe a sigh of relief as I pretend it wont happen again, when Psoriasis retreats.

I have lost employment due to not being able to work during times of intense flares. I have become disabled to the point of not being able to dress myself, wear shoes or even walk – having to crawl during flares.

Yes I have applied for disability. I have been turned down twice, the third time I lost my housing and you can’t apply without an address. When I was turned down before, my hands were clear. Now, not so much. The unpredictable nature of psoriasis flares makes disability determination difficult. A flare may almost totally incapacitate for 6 months or 36 months, but then go into remission for 10 years only to return with a vengeance for years.

My last determination(rejection), determined I could do a desk job – it was written rather insultingly. Suggesting I return to another job I left in another state – which was not an option, and even if it were, not one I could afford. Here’s more from that helpful agency….

https://www.ssa.gov/planners/disability/

Right now the flare is….*knock on wood…*whispers “retreating”.

My hands are still not ready to face the world without plastic gloves. If you were an employer, would you hire someone who wore plastic gloves to an interview. After all the law dictates type of questions they can ask, but not how they feel or respond to what they see…should I say what it is? How much educating about psoriasis is polite? Will they find an excuse not to hire? **if you are an employer with psoriasis – please hire qualified candidates who have psoriasis, especially visible psoriasis!

Dating is not something I have done in so long, I don’t really know how it works anymore. I tried, but he got a rather icky expression when he saw the psoriasis on my arms(before flare on hands). He seemed willing to overlook the fact I could barely walk because of the flare on my feet, yet when it became “real”, as in he could really see it-he changed his mind. It was an extremely awkward short date that ended tersely(on his part) and with a vow from me never to try that again. Since then I have structured life to be alone. Not lonely, just alone.

However, there are those times, human touch and companionship would be wonderful. Very welcome. But alas, not to be.

So how do you touch? How does psoriasis touch you? How does the world see you?

Leave a comment and let me know. Let’s not be touchy about it.

Gloves………….maybe I should try theseImage result for gloves for psoriasis on hand

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Psoriasis blanket fort

I am avoiding my life. I admit it. I am a hider, a builder of blanket forts.

A blanket fort for the living room and one for the bedroom. An emergency blanket in the trunk for those days the commute calls for a blanket fort.

What is in your blanket fort?

In mine there are lotions, creams, plastic gloves, cotton gloves, cotton socks, a scratcher(I know “don’t scratch!”). There are also coloring books, colored pencils, a Nook, a laptop and power cords. My snack bag and a soft pillow and cuddly stuff animal(my favorite teddy bear). If I could figure out indoor plumbing for the fort, I would never leave, but then it wouldn’t be such a special place.

Where is your blanket fort?

Blanket forts can be actual blankets. They can also be that special place in your mind where your boss, kids and spouse can’t find you and must leave written notes outside the flap on the clothes pin.

When do you use your blanket fort?

Do you have one to share with the kids and one just for you?

I use mine to avoid my life.

I have Psoriasis.

I have had Psoriasis for 11 years. It took that long to get all my Doctors to actually agree on one diagnosis. Psoriasis happens differently for each person. It looks different and has many different forms. This may explain why so many Dermatologists are slow to definitively say “that is Psoriasis”. Psoriasis claims territory on my hands, arms, legs and back. Mostly, Psoriasis tortures me by claiming my feet, the bottoms and tops. When a flare hits my feet it is impossible to stand or walk. There is only crawling – even with Psoriatic arthritic knees (another diagnosis the Doctors are not agreed on…yet) and more medications, creams, ointments, herbs, oils, etc,etc, etc.

I love my friends and family, but listen to me carefully…In 11 years I have tried almost every non prescription thing available and several prescription things. I continue to wait for approval of Humira. I must go through the foundation that provides for low-income patients. I lost my insurance when I lost my full-time job due to not being able to work because of a flare that started in 2013 and has been vacillating between bad and really bad for 3 years! Most recently I worked for a few hours in July, but the flare claimed my hands(in addition to the continuing flare on the feet) and I couldn’t see patients with bleeding hands and feet – I am a nurse – an RN.

There is a really good clinical article of Psoriasis:

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/dermatology/psoriasis-papulosquamous-skin-disease/

 

In future posts I will talk about the impact Psoriasis has had on my life and plans for my future. It has been a hard 11 years and the road ahead does not look any better, however, I live by a simple paraphrased quote “it will be alright in the end, and if it is not alright, it is not the end” (yep The Best Exotic Marigold Hotel)

 

Secrets To A Great Psychic Medium Reading — Nomadic Spiritual Healings

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Little tips to make your experience very enjoyable, works for parties and single sessions 1. Think of your loved ones, that you are wanting to have come through, doing this will bring them to your session. Also being open to who comes through, as you might be very surprised on who it is. 2.…

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Idaho! — Nomadic Spiritual Healings, LLC

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BOISE ID: June 22nd – August 12th Psychic Medium / Healing sessions taking place at the office, park or in the comfort of your own home. (To have an at home session you must be a prior client or know a client that Crysta has seen in the past. Full name must be confirmed.) …

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