Almost one year

I am in disbelief that after all this time I still hurt so much.  I cry all the time. I am having depression issues and issues with controlling my temper. I feel so bad all the time that I find myself lashing out becuase of this pain. When will this end   

300 days.

Today I hit day 300. I am terrible at blogging.

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

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.

Offering it up

Everyday from here on I will offer up my pain and suffering for someone. Today the first day I prayed for the baby my little sister lost last year to miscarriage. Baby Jude. I prayed for and with the baby. Lord hear my prayer.

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.

Almost 80 days.

Face photos

Top left 1/09/14,  bottom left 2/24, right 3/17

Wrist photos left 2/24, right 3/17

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. 

3 months, 58 days

Taken day 58. 

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. 

TSW is hurting me

TSW does not make me a better mom, this is so hard.

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.

Hard days

After some great skin days I have had 2 bad days. Well not the whole day but the nights especially.  I make it through. Everyday is hard. My skin flakes and itches to intensely I cannot concentrate on anything but.

Overall my skin is doing better I still have eczema all over. It has spread across my shoulder blades and back but not the red super scaley kind but just scaley. I can tell since there is a difference in texture. I can get through this I just pray the Itchiness goes away.  That can be very painful.

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.

Wow. There are so many with TSW

I had never heard of TSW and now I am overwhelmed with the blogs and stories.  I am especially overwhelmed with their dats and flare-ups and the time it takes to cure. Lots of info and lots of stories. Most of the blogs are yooung women from 20-40  years old.  So sad. I know how they feel. I am one of the few moms most with blogs ate single young women.

So far to defeat my eczema particularly tsw I am doing the following list:
-no gluten, meat and very minimal diary
-juicing  meals per day and 80% raw vegetables per day.
-drinking only water
-taking seaweed baths 2-3 times per week
-after showers or baths at night I apply emu oil to the dry patches.
-no petrol or parabens in any products
-using coconut oil and shea butter as moisturizer
-starting today I am drinking milk thistle and dandelion tea to help aid my intestines, colon, and kidney get rid of the steroids
-taking acidophilus and bifidus for overall immune boost and health
-no alcohol

And praying for this to away!

My inspiration

My guiding light in this long walk with topical steroid withdrawal is my faith and Netflix.  I have been watching and re-watching many documentaries on eating Vegan, clean eating, organic farming, and juicing.  I am currently reading Crazy Sexy Diet by Kris Carr, I highly recommend it.  She is a women diagnosed with cancer told she had to have radiation to survive and walked toward a holistic way of living.  Her cancer is dormant, she lives an amazing life full of knowledge and real food.  She writes in a way that is easy to understand, and no fluff.

Over 6 months ago I started her book, and had watched these same documentaries saying "I should try that", and my effort ended there.  Now I have to do it.  I have to clean myself up.  I have not had red meat, or chicken for 2 weeks.  I have lost 8 pounds.  I hurt everyday, the itching and red skin on my arms, neck and face is now spreading to my stomach, and I cry every other day from fatigue and sadness.  But I can do it.  No one but me can beat this right now.  I will clean myself up and will never trust nor use something just because a doctor says to.  With prayer and my family I will defeat the most difficult thing I have ever faced in my life so far.

I will.

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!

Over a week in and I am learning a lot.  Step one for me in this battle is nutrition.  I am changing my food habits for the better.  I have always been a athletic girl and eating carbs, meats and dairy have never been a problem.  But since having kids foods have been affecting me in ways I never noticed.  My new way of eating is 80/20.  80% organic fruits and vegetables with at least half raw (juice).  The other 20% is cooked foods like pastas, fish, gluten free breads.  I have been implementing this slowly and now am in the full swing.  I have cut out all gluten, and red meat as well chicken and pork.  I have also cut out milk and limit my intake of cheese.

Just this week a friend had a party and served only red meat, enriched wheat rolls, chips and nacho cheese.  With that meal as well as alcohol I was hurting yesterday.  My skin drastically reacts to stress (another step to control) and with the food I eat.

I ate the meat and bread on Saturday and Sunday my skin was inflamed and very red.  I also noticed the eczema had spread and hurts, if you have eczema you know what I mean.  So I need to stick to my plan.  This will be hard especially for special events but I just need to prepare myself.

In closing this is my average weekly meal.

Upon waking:  glass of water
Breakfast: Green juice (organic cucumber, 2 celery ribs, 2 carrots, cilantro, parsley, green apple, a splash of water, 1" pice of ginger and 2 ice cubes)  This one mix in half for breakfast and for dinner.  I also use a vistmix that uses the whole plant and thus add the water to not have it so thick.
Lunch: Cooked meal, no gluten and usually leftovers with vegetables.  I having trouble with this meal as I love to eat a cooked meal with my husband but I am trying to stick with it.
Snack: celery, carrots, gluten free crackers
Dinner:  salad with a bit of what my family is having and the rest of my green juice from breakfast

I am in this!  Prayers for me!

What I need to work on:  stress, meditation, water intake, exercise and breathing.

First post.

I have started this blog for me to chronicle my official all out war against my eczema.  I have had eczema all my life.  ALL my life!  That is pretty annoying.   

As a baby is was simple behind my knees , dry skin, minor irritation.  It was like that forever, just there.  I never thought anything of it.  But then puberty hit.  Like a truck it hit.  And with it went a lot of my self esteem.  A week before 8th grade graduation I got dry eczema spots all over my body and no one got to see my cute dress because I never took my gown off.  The marks on my face stayed, the 'harmless' steroids the doctor prescribed made me lose the pigment on my skin.  I tried to cover up my dry skin with lip balms full of petrolatum and lotions full of parabens.  I was laying the groundwork for what I am now trying defeat over 15 years later.

But then I started learning, I can attribute this introduction to God.  For it was more than seeing the right show, meeting the right person, or reading the right article.  It was far more.  I was embarking  slowly on an unknowing quest towards healing myself many tears later.  If you are like me you have cried over eczema hurting you and annoying you. 

I will give more into my back story on how having kids and turning 30 affected me and my eczema.  But for now in my first post I am ready and can do this.  Here I go!