Saturday, July 20, 2013

My break is over just when it was kicking in!

Well my break is over a few days early!  I was hoping for a 4-5 day break like I have had most other months - but sadly it lasted only 2 days.  The first day was OK, but very fatigued.  Yesterday I slept until about 2 pm.  I thought I was going to be tired forever!  But I finally got up and ran a few errands.  Was feeling pretty good all evening and didn't need my ice pack all day!  I woke up this morning with my face looking and feeling amazing!  My arms were even nice - much less red and no swelling!  But sadly within an hour of waking, I started itching really bad....nothing new.  But even using the comb for scratching, my skin was opening a little - nothing like it would if I used my nails, but enough for the ooze to start coming out.  All over my arms, my chest, my legs, my back, and even my face - especially on my chin and upper lip.  I am very disappointed but not depressed over it.  One would think I would be, but I have had a revelation!

You see, I started combing my skin when itchy instead of raking it open with my nails.  I was getting huge fissures in my skin - opening it up with vengeance it seemed!  My skin would literally come off in chinks under my nails at times.  I only started this 2 days ago.  Yesterday I noticed something that gave me a huge wake up call.  All day I had little to no pain.  I thought it was all related to my break.  But that is not the case.  I ended up scratching about 5 areas with my nails last night while watching a movie with hubby.  He realized what I was doing and told me to use the comb.  I was upset with myself for absentmindedly scratching, but was glad hubby was there to remind me.  Well off we went to bed and getting off the couch caused huge amounts of pain - but only in the areas where I scratched the skin open.  The pain was not localized to just the open areas - it surrounded each area by quite a bit - felt like my skin was on fire and with pins/needles sensation.  It dawned on me that all my pain has been due to my open skin.  I thought it was due to the dryness, but now I am thinking it has more to do with the nerves under the skin being so raw.  When I scratch the surface open, I am somehow exposing or damaging these nerves that are regenerating.  This is only a theory.  But it makes more and more sense - especially today. I have been scratching with the comb and only taking off a little bit of skin - causing more like slight rug burns instead of deep fissures.  I have irritation at those areas, but not the pain I have been experiencing all these months.

So I think it is safe to say that scratching open the skin is highly detrimental to this whole healing process of TSW.  Not only does it invite infection, and cause the body to expend more energy for healing, but it also causes pain that can be debilitating.  All of this impedes the healing process of the skin from the cortisone damage.   I am now on a mission to find a better scratcher - the comb works OK, but still takes off a little skin.  I need something firm (for pressure) but less damaging to the sensitive skin.  I bought a few things yesterday - a different comb and a brush - they each are OK, but again, not what I am really looking for.  I just hope this is my key to turning around.  I need to turn a corner soon.  Life has been at a standstill for far too long now.  I know 5 months is not a long time compared to some who have suffered far longer periods of time.  I know I have a LONG way to go to heal - I am still oozing and very red.  I am not ready for sun and my skin is still so raw.  But that doesn't mean I can't find a way to function better.  It doesn't mean I can't try to heal faster.  Because this is not about me - this is about my family - their lives have been placed on hold as well and that is life - however unfair.  So I do what I do for them - not so much for me.  I don't care that my face is red and raw or that I have sores all over my skin.  I don't care what others think of me.  I don't care that I no longer can wear make up or earrings.  This is not about vanity.  I just want to be able to function so that my kids and husband no longer have to suffer along with me.

Below is a picture of my deep fissures that are now healing.  I am hoping most of my skin is no longer open by next week.  I have fissures, sores, and raw open areas all over.  I have noticed a huge change in the past 2 days with not re-opening my skin - the sores are all healing!  For those with life-long "eczema" like myself, you all know what it is like to have sores that never seem to heal!  To see the sores shrinking each day is nothing short of a miracle!  I will hopefully have good pictures by next week and a tale of less pain!  I still expect the redness, oozing, and itching to continue, but to not have the pain level I have been living at will be a blessing!

UPDATE (9:45 pm):  Just wanted to add that today was a nearly pain free day!  I had a few areas of pain when moving due to scratching a few areas in my sleep over night.  But this evening has been wonderful!  Still excessively itchy and very red with some swelling and oozing.  But not aving to deal with the pain is bliss!  I might conquer this yet!  :)

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