Recording pain.

The last few days. The weekend. I was in so much pain. Saturday hurt but today was terrible. 

I flared, from painful to semi excruciating about 6 times today. From tired and achy skin to stinging and on edge burning skin. 

I cannot wait for this to be over. 

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. 

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

Today I am praying for and offering up my pain to Nonno Michele DeBellis.

I also am on day 3 of taking showers, warm showers 2 min long, in the am and pm.  Wow!  It has really helped the areas that are healing, my back, legs, and stomach, my neck, shoulders and arms still itch but I am loving not stinging all day.

I also got to enjoy my sons Easter party today and with only a few limitations to my movement I did awesome.  Praise God.  Pics to follow.

Prayers

Praying for my cousin Gina who passed from cancer, Gina pray for us.  I love you.

Shower or bath?

I have been taking 2 baths a day about 20 to 30 minutes each, this is very hard for a mom to do.  I am in the bath while kids watch TV, fight play and do everything else.  My little ones are 5 and 2.  Yeah, that is not ideal.  So I am thinking about experimenting with showers.   Pray for me.

Two good days

I am now in month 4 of TSW and having two-knock-on-wood good days.  Please Lord Jesus let the healing continue.

I am still cold as the weather has cooled here in So cal.  I am sleeping better and today and yesterday did not need Benadryl during the day.  My arms are tight, thick and dry but not too bad.  MY neck is also the other thickest part of my body.  But this time last week I was flaring could not lie down as my skin burned with any pressure and I itched like crazy.  I still itch but it is not the burning going crazy kind. 

Thank you Mother Mary

Flare me

A flare today that has left the rest of the day achy and peel and painful. Thisn flare was about 2 hours long but still lingering with pain. My arm is more red as well. Almost 4 months and praying for healing.

lichenification.  The word of the week. The thick and shiny and super itchy skin I have due to scratching.  As if TSW is not enough not this.  I am trying with all my might to not scratch and the is so hard.  SO HARD,  pray for me.  I know there are followers on this page.  But any glimpse and prayer will help. 

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 am having another acupuncture appointment today and looking forward to it.  With my TSW recovery a lot has changed in me inside and out.  My mentality is changing, my food intake has drastically changed, my skin is changing and what I know is right and what I see in myself is also changing.  My skin is not as red as it had been but I still have the rough/scaly skin associated with eczema all over my shoulders, neck, face, arms and stomach.  It is also on my legs.  But it is not flaming red or hot like it was.  I am able to calm myself without having to apply endless amounts of coconut oil and at night I usually only apply the coconut oil once and only on my mouth and chin.  In the first month I would wake in the middle of the night and apply oil everywhere, it was so dry.  But now my skin has a different dry.  I can do this and I will.  I also have not has those skin thickening flare up in the evening where it feels like my skin is growing thicker and it bright red and inflamed.

I can do this!

This is hard and I am praying for me to fight this faster than I have read others to do.  I am in my second month and have seen great improvements.  I am striving to clean my liver and other organs especially my skin.  Skin is the largest organ in the body and I also just learned that it can also act as a second liver.  When the liver is overloaded by the food and immune system we intake the toxins can be carried outside of the liver and then filtered through the skin.  So many who have eczema also have this issue where the body cannot filter something the body is taking in and thus the eczema appears on the skin. 


I can do this!

Another first for me, acupuncture.  I have been twice in the last few days and am going again tomorrow.  It is very relaxing, does not hurt much and the doctor said he can help me get my blood moving and clean out my liver faster.  Prayers please. 

Thank you Jesus today was a good day!  I will also share another piece I am praying can help me with this TSW.  And it is tea, organic white thistle, dandelion root and sage.  A local health food store that sells organic produce, food, vitamins and oils.  The owner, who had never seen anyone in my condition, recommended in helping remove the toxins from my liver and other digestive organs.  I drink one tea bag of each in 32 ounces of water half in the morning and the rest in the evening.  Prayers are welcome.

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.

Eczema needs prayer

The past few days  have been hard! I now know why my skin has been on its worst rampage ever. Its an actual syndrome. Red skin syndrome or topical steroid withdrawal. That is what I have and it is unreal. My skin is creatung this eczema in revolt to the years of prescription and over the counter steroids I have used over the past  10+ years. Its late and I will erite more on this and my diet but thank you Jesus for answering late night prayers!