Thursday, May 1, 2014

Definitions and Terminology

It has been a difficult thing to define certain terms during TSW.   What does it mean to be healed?  What is a flare?  These can be defined many different ways because people experience different intensities of symptoms. Plus not everyone experiences the exact same symptoms as everyone else. My original first 8 month long flare was day to day pain, intense itching, burning, redness, swelling, and lots of ooze. It started on my torso and arms and then moved to my face down my back and then all down my legs to the top of my feet. The only areas I remained clear were the bottom of my feet and my scalp.  I shed massive amounts of skin on a daily basis. Some days were worse and others better...I never got a full break as I was always flaring somewhere on my body. 90% of those 8 months I had a mostly full body flare.  10 percent was just a lessening in intensity of the flare.  My neck hurt so bad I couldn't drive.  Those 8 months were basically one long lesson in torture.

However since startng treatment for the gene mutation I no longer flare.  According to my definition of a flare, I have not had one for the last 6.5 months.  So I developed my own definition of what I call a micro flare. Or mini flare.  Basically I get itchy dry skin that breaks easily and takes a long time to heal. It is not body wide at all.  Typically it affects only 1 or 2 small areas of my body at a time.  I no longer ooze nor have any redness nor any swelling nor any pain. NOT AT ALL!!!  I dealt with dry itchy broken skin as a child with my eczema before ever using steroid creams.  Currently only 5 to 10 percent of my skin is dry and/or broken open. It doesn't burn or hurt. It's just dry.   It doesn't stop me from doing anything including exercise. The only thing it keeps me from is working full time. I have been out of work on a full time basis now for about 4 months because as a nurse in the ER I need to wash my hands way too many times in one day. The harsh soaps are the only soap I'm allowed to use. I can't bring my own. The soap makes most nurses' hands dry. But since my hands are still sensitive they break open easily after just 2 shifts in a week. Right now I'm at one shift a week. My hands remain in great condition. I want to keep them that way. I will increase my hours as my hands allow. But for now they start with the micro cracks after working 2 shifts so I will play it safe until I feel they are not so sensitive. I still have my kids doing dishes as I tried washing dishes a few weeks ago and after a few days I got the micro cracks again.  Oh well.

As for the term healed.  That's a tough one. Is it reasonable to think our skin after 30 years of TS use will be perfectly clear at some point?  Not sure.  I think we will always be prone to some sort of sensitive skin somewhere on our bodies.  For me I think it will be my hands. But I've abused my hands over many years of being a nurse.  And that is probably where I used the most potent steroids.

For me I plan to declare myself healed when my cycles of dry itching skin stop breaking my skin open. They're not huge breaks in my skin. Someone said that my skin looked all torn up. I find that comical. Obviously they never saw my previous pictures during my initial flare!  Now THAT was torn up skin. What I have now are broken dry patches.   About once a week or less I scratch enough to break open a scab or 2 and I bleed a little. That is about all that my skin does that interferes with my means I have to go find a tissue or a bandaid.  I could live with my skin the way it is now and never be bothered by it. That I think means I am healed in spirit. :)

So I guess use your own personal gauge to guide you in defining a flare or what it means to be healed.   As for me I'm almost there. I don't claim to be completely healed but I know I am close. I got my life back completely at 9 months and other than my hands reacting badly to the soap at work I have truly moved on. I can go outside and the wind doesn't irritate my neck. I don't shake and shiver from body temperature irregulation. I have no pain.  My clothes and sheets are dry each and every day.  I don't have to vacuum daily...just once a week like I used to do....maybe twice if the dog hair gets to be too much.  I can wear all my clothes....even pantyhose!  And none of it bothers me. I cleaned my car and no longer have skin flakes in it at all. I wake up and don't immediately dust any dead skin off of me.  I drink a glass of wine about twice a month and have no redness or get irritated by it.

So anyone can say my skin still looks bad in my pictures but maybe they're comparing it to normal perfect people. But even though it may still be dry and cracked in a few areas I at least can say I have my life back.  I did take pictures today but can't locate my USB cord to connect and download to my computer. Hopefully I will have them up by tomorrow.

1 comment:

  1. Good for you, Tracy! I am eagerly awaiting the day when we can say the same--skinwise--for my son. Keep on healing!