If I Didn’t Have to Wear Clothes

“I’d feel so much better if I didn’t have to wear clothes.”  This was my response to a new healthcare provider yesterday when asked me how I was doing. He looked at me a bit puzzled so I explained.

I have been living with polycythemia vera (PV) almost three years.  There are many symptoms that impact the lives of those diagnosed with PV to include; fatigue, headaches, bone pain and spleen enlargement.  One of the most common symptoms is itching without any type of rash, or in technical terms “pruritus.”

Of all the issues I have with PV, this is by far the worst.  Some with PV say it’s debilitating. I’m not quite at that point yet, thankfully, but it’s still annoying...and frustrating.  Sometimes I feel like fire ants are attacking me. Sometimes it’s more of prickly skin irritation. Other times, and the most frustrating, a persistent itchy spot right on the middle of my back that I cannot reach.  Clothing aggravates the pruritus.  Some material like lace or wool are absolutely not my friend anymore. I rarely wear pants unless I have to. Winters, even in South Texas, are the worst for me.

No relief in sight from pruritus

It’s maddening because no one knows what specifically causes it or a way to relieve it. I have seen a myriad of specialists; hematologists, dermatologist, oncologists and neurologists. No one has a concrete reason for the itch. Nothing…and I mean nothing has worked to consistently to relieve it. And believe me…I have tried just about everything; lotions and creams, antihistamines both oral and topical, phototherapy, diet changes (like avoiding my beloved sugar) and other medications.

I’ve developed some coping strategies in order to be functional.  Like others with PV that I’ve talked to, I have a handy wooden backscratcher nearby at all times.  I also use a topical lotion called capsaicin (it burns initially but takes the itch away temporarily).  Most importantly, I maintain a rather unique daily regimen.

A day in my life

So my day goes like this.  Although I don’t have aqueous pruritus (where water, especially warm water, exasperates the itching), I still always take a quick frigid shower using gentle baby body wash and shampoo. I try to wait a little bit before getting dressed, as I know my “without clothes” state will likely be the best I will feel all day. When I finally do get dressed, I usually put on a loose cotton t-shirt and shorts, regardless of the temperature outside.  I often change in my car when I get to work hoping that the outside camera isn’t capturing my quick outfit change on film.    As soon as I get home I change out of my work clothes back into my shorts and t-shirt.  I’m usually good the rest of the evening… well… at least until I try to sleep at night. Rest is rarely accomplished without a cocktail of antihistamines and sleep aids.

Yes, if I could go without clothes I would definitely be much more comfortable. Of course, that’s frowned upon in this society. I am hoping that someday there will be a resolution for this and I can again wear my closet full of clothes. Until then, I look forward to the summer when I can live in sundresses, shorts and t-shirts. Thus making my quality of life so much better.