Wednesday, May 21, 2014

Day 81 Marked Improvements

Well, these last few days have seen great improvements, so I'll start with celebrations:


  • Sleep!  I've been able to fall asleep and go to bed when my husband does!  I fall asleep after him, but it's been before 1am several nights!  Also, I sleep longer stretches!  4-5 hours!  HUGE!  I was working with 2 at the max and then being up for 1-2 hours between. 
  • Ooze!  had very little the last few days.  The skin on my  neck feels so much stronger and less fragile.  My ears have since peeled and feel like somewhat normal skin again, but I have a feeling they aren't completely done oozing est.
  • Skin sensitivity  For the longest time, I couldn't stand the thought of touching my face to anything else.  My movements were dictated by my stupid mask face. The last few days I have been putting my face on my kid's faces and laying it on the pillow straight without anything in between me and the pillow.   A few times I have even done it without thinking or hesitating.  
  • Sleep positions!  I am now back to using one pillow and using it the way I want to for comfort. The last few days have NOT been riddled with creating a sleep position around my ooze or pain. (Two pillows, rolled up towel around neck, try to fall asleep on back so face and neck don't crust to something, sleep stiff as a board and wake up sore...etc)  I no longer have to be elevated and no longer need a towel to put around my neck so I don't move in the night.   I just get comfortable and go to sleep.  SO many people take this for granted, i'm certain.   Tonight, when you go to bed, think about me when you're getting cozy... haha
  • Mobility... for the longest time, I could hardly move my face.  Now, I move my face as I please.  I couldn't smile or make any gesture because the skin was SO tight.  Now, i don't really think about it.  I can also move my neck again without my skin tearing (for the most part... there is still one spot on my neck that will tear if I stretch my neck too far...)
  • Temperature Regultion
  • Energy... This is my biggest complaint.  I feel like I have mono.  I am SO tired.  
  • Food... Some of you know that I have been eating the SAME THING FOR THE LAST 2 PLUS MONTHS.  I stuck to the same diet because I knew it didn't inflame my skin and I didn't have to think about it.  Well, the last few days I have been experimenting with LOTS of new foods.  I'm having trouble with some causing inflammation and itching.  I made an awesome ranch dressing with Macadamia nuts and it made my ears SO hot and itchy and made me literally feel like I was going crazy.  It's hard to describe but it was awful.  
  • Sweating
Ok, here are the pics from today:

I started putting calendula cream on this spot and it's given great itch and dry relief.  Who knows if that will continue. 


Sorry for the up the nose shot, I'm too lazy to crop.

Still a bit torn up, but HUGELY improved.

 Here's a quick comparison to see the improvements over the last 3 weeks:

Slow but steady...
Skin very much stronger and more reliable...  Day 60 is why I'm perfectly comfortable with what I feel like today...

1 comment:

  1. Hang in there, you are doing great.

    It's all baby steps, but we get there in the end. X