after the wounds on my legs heal up and stop being irritating, i want to buy myself a short mini skirt and pair it on night out with cute heels.

after the skin on my arm gets back to normal, i want to workout, and not have it hurt.

after the skin on my neck heals, I want to wear my hair down curled, I wear it up to not irritate the skin.

after the skin on my face recovers, i want to put my foundation on and full makeup, and lipstick, I only wear makeup on my eyes right now.

after everything is over, i just want to be able to enjoy a moment without fidgeting or feeling itchy. i want a good night sleep. i want to shower without feeling scared. i want to wake up without being afraid of what i’ll see. i want to be normal.

I started month 6 sunday. 5 months down.

This is such an emotional roller coaster. I am feeling better but since I am not feel in perfect I get distraught. This is so hard. Life will be so easy when this is over.

Last weekend, memorial weekend, we went to newport in our first trailer trip since January. It was nice. My parents came and my mom made all the food. I washed dishes one time all weekend.

Friday, the first day, I was peeling like crazy. My elbow was like old sandpaper. That slowed the rest of the weekend.  Following are pics I took outside our trailer in the sun. I am praying for healing. 

A hard day.

Pain. I feel best when I just sit. A mom of two 5, and 2 years old that is hard. Praying for healing. I am bad at posting. Just know this is HARD.

I feel best 20 min after i shower. I feel worst 20 min before I shower.

May 6th, week 20

I am having some knock on wood good days.  I still have those fits of pain and itch but they are better.  My back feels amazing in comparison to the week of Easter.  I could barely move.  It was so painful.  But I can bend over now and it does not hurt, I am not peeling as much either.  Before I left a trail everywhere.  Now I still peel but it is smaller flakes and very very fine. 

I have been asking Saint John Paul 2 to pray for me. 

My arms, specifically my wrists hurt the most.  They are my problem area and my elbows.  I still have wrinkled thick skin almost all over but I can feel it smoothing out.  It may look the same to me but it is feeling softer.  We have had a warm spell here in so Cal.  My hubby and I celebrated 7 years of marriage yesterday.  On Sunday May 4th we went to dinner at the Ramos House Cafe, went shopping on Los Rios Street and then spent 2 glorious hours sitting on the beach.  People watching and soaking in the sun.  I pray this is the last, this is end.  If I know if I believe God will heal me.  I am healing.  Praise the Lord.

A good day.

I am having a good day, I shed A LOT yesterday and today I do not hurt as much.  And weirdly enough I am not shedding too much either.  Right now just my left wrist is achy.  I am still pretty dry and wrinkled but I am feeling areas get smoother, parts of my back, shoulders, stomach and in the folds of my elbows.  So exciting.  I pray this is my downhill.  I know most people have a regress flare.  But I cannot prepare for that.  Today I cam going to enjoy this break.

Blessed John Paul 2

A future saint is praying for me, I am feeling good today, very dry, thick skin, and I love being in my dimly lit house as my skin does not look so bad.  I am also not as cold as my So cal home is nice and hot.  80 outside.  The shedding I am experiencing is so gross, I shed all day, except when I am flaring, when I flare I notice the shedding stops.  Almost 4 complete months in.  Yikes.  This is a hellish 4 months for sure.

This TSW is the worst thing ever I cannot wait for it to be over.

Prayers and latest images.

Praying for Grandpa Acosta and Grandpa Ramos

Randy Acosta

St Therese