Day 65

An emotional roller coaster day.  I can see things getting better, I have been shedding day and night for the past 2 weeks.  Unlike some people I see I have very small pieces of skin so I pretty much feel like I have dandruff all over.

The shedding started at the end of month 2.  Right now my worst tsw spots are me left wrist, both tops of my hands, my jawline and chin.  My legs have tsw on them now too but not as red and smaller more spread out.  They also do not itch as much as the top half of my body. 

I cry a lot and just get scared I will feel this way forever as I do not see improvement. 

Yesterday was Ash Wednesday and for Lent I gave up being sad about my skin.  This will be difficult as the devil is all over that dang steroid cream that halted my life in some ways.  Please Lord heal me.  Tomorrow I go to see Dr Rappaport.  Prayers welcome.

9 weeks in and I am hurting.  I have never itched and ached so much in my life.  I would do anything to get the time back and stop taking steroids years ago.  This is so hard.

Yesterday I went to a visit with Dr. Rapaport, the only doctor in So Cal that I know of who acknowledges the danger of topical steroids.  Sadly my nephew Derek, who is 4, is also going through withdrawals.  This is going to be a hard year for our family, but we are on the path to recovery.  Until that 'cured' day comes it will lots of coconut oil, baths, and tears for us.

I am not better, but everyday I am off topical steroids means I am one day closer to complete healing.

I survived what I thought was going to be hardest TSW weekend.  Aside from fighting TSW I am also a stay at home mom of a 5 and 2 year old as well as an Origami Owl designer.  This weekend was a conference for my business and it was in San Diego, 2 hours from home.  I had been looking forward to this weekend for weeks and what it should have been.  It was supposed to be a kid free girls weekend with the weekend ending at an organic spa.  Well thanks to TSW the days leading up were pretty bothersome.  I knew I could not survive the night pain in itching with my friends in a hotel with hard water an no comforts of home.

Thanks to my hubby and some last minute planning we made the best of it and took our travel trailer and stayed across the bay.  I did not get my girls weekend, had to bring my own lunch and juice with my new TSW vegan diet but I did it.  And my skin behaved.  It is not so red now and showers still are very painful but I am learning.  The redness and inflammation is going down,  I now have eczema on both arms, hands, neck and chest, face and it is spreading to my stomach and back.  But I can do this!  I just hate how painful showers are.  I need to dry off so fast and get the coconut oil on or I literally so dry and itchy it is unbearable.  I pray this flare up is not one of many and that I get tons of strength to endure.