Wednesday, May 21, 2014

Day 77- Day 79 Topical Steroid Withdrawal Flare Cycle and Some Questions

These few days captured a typical flare cycle.  And each time i have a flare, it gets less and less intense and oozy.  This time, I had very little oozing.  My ears are still troublesome and so is my neck, but it's becoming less and less.  I believe that the worst may be over.

A typical flare starts with hotness and swelling.  My skin will just feel hot and thick.  I'll typically feel sick as well.  Very run down and uncomfortable.  My sleep is interrupted as well.   Day 76 was the start of it and day 77 was still swollen.  Then, as the swelling subsides, the flakes and dry skin increase.  Showering makes me more dry, so I don't wash my face very often.  I wash it with a washcloth and distilled water.

I've gotten some questions from some people, so I'll answer them here:

Why don't you moisturize?  Well, to be honest, moisturizer makes me itch like CRAZY.  It makes the flakey skin soft and just sits on my skin like mud.  Blech.  It also irritates the skin a lot.  When you have ooze, moisturizer is just fully out of the question.  There will come a time when I moisturize...and I'm close to that time..but not quite.

Have you tried __________?  Yes.  haha.  And Topical Steroid Withdrawal isn't like regular eczema.  Your skin is in recovery from being completely depleted and is basically going from atrophied to normal skin again.  It's a grueling process that just takes time and patience.  Dr. Rapaport, the doctor who discovered this, will tell you that all you can do is make the patient comfortable.

Would getting out of the house help?  Aren't you getting stir crazy?  Yes and no... My energy is SO tanked that it often takes everything I have to just get through the day.  The thought of going out and being "on" is truly overwhelming.  I get outside in the sun when I can.  I miss people and doing stuff for SURE, but a dream day for me is just to be able to veg and not do ANYTHING.  Just rest.  But I'm still in the worst of it, so that's understandable.  The exhaustion feels like when I had mono in my teens.

Are you better?  This is a hard question to answer on a daily basis because "better" with TSW doesn't always mean looking and feeling better.  I'm always getting "better", my skin is always improving, but it's not linear.  It's like a roller coaster of ups and downs.  I may be feeling on top of the world one day and the next be feeling like total crud (Like here).  Overall, yes, I feel better.  My skin feels stronger and stronger each day and the mother loving oozing has subsided for the moment.

How are you doing it??  Honestly, without Chad I'd be up a creek.  He's been my savior.  I've also had a LOT of help.  My mom came for 2 weeks and the relatives I have in town offer help when they can.  Also, i just am.  I have no choice.  It's something I HAVE to go through to be well.

Ok, so here are the last few days in pics...

Day 77

This stupid wrist.  It was NOT this bad until I put Mario Badescu Control Cream on it a few days into withdrawal.  The control cream secretly had steroids in it and they have since stopped and changed their formula.  As compensation, they offered a Mario Badescu gift card to everyone who used it.  REALLY?

Still super swollen and uncomfortable.  




Day 78 

The eye is better!  A huge improvement from the nasty wound from a few days before.

As beat up as I look, I'm seriously so grateful because it's dry. 


Drying up... and starting to heal. 

Day 79

These shots are outside, so the light is a little different.   It doesn't emphasize the redness as much, but does the flakes.

I peal ALL DAY LONG.  My bed has to be shaken out every night because it feels like salt in the bed from dead skin.  It doesn't feel dry and the flakes are actually super soft, unlike the sandpaper skin I was dealing with before. 



So, to answer your question, NO, I don't want to go anywhere haha


  • Sleep has been slowly improving but still a struggle to fall asleep.  
  • ENERGY.  Feel like I'm dying most days.
  • Less ooze
  • Fares getting less intense.

1 comment:

  1. So glad you're seeing some progress on day 81! one hour at a time, one day at a time, healing is happening :-)