About me.

Been Married -- yes

Been divorced --no

Skipped school -- yes

Watched someone give birth -yes

Watched someone die - yes

Been to Canada --no

Ridden in an ambulance --yes

Been to Hawai --yes

Been to Europe -- yes

Been to Las Vegas --yes

Been to Washington DC --no

Been to Nashville -- no

Visited Florida -- no

Visited Mexico --yes

Seen the Grand Canyon -- yes

Flown in a helicopter-- no

Been on a cruise -- no

Served on a jury -- no

Been in a movie -- no

Danced in the rain -- yes

Been to Los Angeles -- yes

Laughed so much you cried -- yes

Laughed so hard you peed -- no

Caught a snowflake on your tongue --yes

Had children -- yes 

Had a pet(s) -- yes

Been sledding on big hill -- yes

Been downhill skiing --no

Been water skiing -- yes

Rode on a motorcycle -- no

Traveled to all 50 states -- no

Jumped out of a plane -- no

Been to a drive-in movie -- yes

Rode a camel -- no

Rode a Horse -- yes

Been on TV -- no

Been in the newspaper-- yes

Stayed in the Hospital -- yes

Donated blood -- no

Gotten a piercing --yes

Gotten a tattoo -- no

Driven a stick Shift -- yes

Been scuba diving -- no

Been snorkeling -- no

Rode in the back of a police car -- yes

Got a speeding ticket -- no

Broken a bone -- yes

Gotten stitches --yes

Traveled Alone -- yes

Today.

Left home at 8:45am. Kids optometrist appt at 10:30am. Meet my mom and sister for lunch at noon. Walk IKEA at 1:00pm. Chiropractor appt at 3:00pm. Meet our friends at 5:00pm. Get home at 11:00pm. This day is made possible by my new meds. For three years I could have never completed this day. Thank you Jesus. #dreamingofhealing

New meds.

I started an immuno suppressant drug this last Friday. I am 33 months in and since the Fourth of July the red skin had spread and gotten so terrible. I would wake up with a crust of skin on my arms neck back and legs that moving took every ounce of me. I made the appointment with dr rapaport and so grateful I did.

Saturday was my sister in loves bridal shower and the dress I had made by my friend was made before the fourth flare. I was heartbroken and so scared to show my skin. But the meds took the edge off my heart and the daily pain that has become normal. I felt like a shell Thursday and Friday felt renewed. It was the first night I had a dream my skin was normal. 

You can't tell but I am head to ankle in what is crappy eczema skin. 

I have taken the meds for 3 full days and see relief. Immuno suppressants are scary and the reason I did not take them was because my husband saw them as a cop out. But I could not take the pain l, depression and all together lack of life anymore. Please pray for me. I need a fan enjoying this slow relief. I am hoping by my sisters wedding to have mostly clear skin. 

Please end. End for good.

Best. Hopefully.

I woke up feeling terrible. So dry. Peeling. It was unreal. Then I showered and i peeled so much skin in the shower. It was gross but felt so good after. Then after my recovery from the shower I felt OK. Then it continued. I peeled but not like had in past days. I am sitting outside in a beautiful setting and my skin looks and feels the best it has since before the Fourth of July. Please lord let this bad flare I have been in let up. 

Right and left hand. Still looks covered but feels so much better. 

Crying.

Who else tears up watching their kids swim?  Me. I love swimming so much and for three years I physically have not been able to. I am so sad over this. 

 

Month 30. Going. Swimming. Hoping to heal.

Here I am month 30 and just as areas start to heal I get a new patch on my middle finger. But... This week I have done far more than ever in the least 3 years. Late last week my son decided to go too far in the pool and fully clothed I had to jump in and save him. I was ok after. Itchy but ok. We also moved two weeks ago and are starting a new family journey. We sold our home in March and lived with my parents to help me. In the end it was harder on our family so last week we 'moved' into our fifth wheel trailer and while we await escrow we are on a long family vacation. We are full time RV living and have been having such a great time. Some things are harder like limiting my laundry and being 100% in charge. But I have EVERY meal in the last two weeks. 

Our escrow is for a 16 acre ranch. A dream of my husband and I. Unfortunately I am not healed I used ts for 18 years and still struggle daily. But with the help of facebook Tsw groups and knowing I will heal is helping me. 

Soon very soon I hope. 

Wearing shorts and no long sleeves

Unfortunately I hope to post better images of my skin. Only good thing is it has looked worse. But man am I ready for this to be gone. I never post pics of my neck or face but they are covered and flaring too. 

Fourth flare

Since Monday, the fourth, I have been having really bad flares. My son was In Our local parade and it started and I wrote it off. Tsw sucks. Pain. Peeling skin. Burning skin. Please end. Not only that but last week my hubby broke his leg I am now taking care of myself my husband and two kids all day. Tired. 

These pics are from yesterday before my shower. 

Feeling sad. 

Wearing shorts and no long sleeves

Unfortunately I hope to post better images of my skin. Only good thing is it has looked worse. But man am I ready for this to be gone. I never post pics of my neck or face but they are covered and flaring too. 

Want to swim.

When it's summer. You have a crystal clear pool. All you want to do I swim... And your skin looks like this...

Maybe next summer. ☹️

Keep swimming ...

I have had two terrible Sunday's in a row. Yesterday I woke to tons of shedding skin on my shoulders and neck area. This is the first time for those areas. I wake every day to my arms and neck shedding and flaking. Think of the worst sunburn you hav had but full body and everyday bit creates immense anxiety for me. But rather than getting better it seems to dart the same. That should have tipped me off to the flare to come but I ignored it and on Father's Day I had terrible pain and flares after 1 pm. Flares where the pain was so Bad I could not talk. I am very zombie like when they come. I try to go about my day but I can't. I am in pain. Anxious. Irritable. Depressed you name it. 

I made my hubby s cereal breakfast, his chide. And then took my shower. Upon getting out the Tsw skin felt so and crusty I badly could breathe. It came off in sheets and after I m felt raw and tired. But we pressed on and after lunch we took the kids to see 'finding dory' where the flare started. Luckily the movie theater was cool after the flares began.   And did not end until bedtime. 

I hate this life. I want my skin back. I hate who I am with pain. I miss being happy and having energy. Prayers cause that all I have left. 

Month 30

Pain. I know pain too well. I am tired. Just last week my little family of 4 moved. We are currently on an extended "vacation" in the antelope valley waiting for our dream ranch. We are in escrow for a 16+ acre ranch in acton ca. I have seen so many positive changes since we moved. Before I was in some bad times. We moved in With my parents after our home sold. We decided to relocate to Acton, our future, to acclimate our lives. And for the most part it had been positive. I have been better. Prior I have been forced to wear sleeves to even get though my day. I have not worn them at all except for bed for almost a week. I have home cooked every meal except two. One my husband made and the other we ate at a local spot. I am pray this will finally leave me. I pray this will never hurt another. I know God hears me. I don't know why I have to bear this but I pray it will leave me soon. I feel like a shell of my former self. Soon, I hope, I will be better Than I have ever been. 

Tired.

I had a pretty major anxiety attack today. It coincided with a major peel I had after my shower. I am tired. 

This post below Is from a woman who has healed from Tsw. This is how I feel all the time. 

It took me a long time to understand or use the word "sick" as applied to TSW.   It took a long time for me to understand I was "sick" and so it is not so surprising that some people never saw me as "sick."    Just really burned out looking maybe (joke).   

But if you had a friend or family member with the flu, you would not expect much of them, but with this illness, people don't get that.   Can you imagine how much easier this illness would be, if everyone around you just brought casseroles and told you to stay in bed while they did everything for you, with a smile on their faces.   And while I am dreaming, I mights as well add Doctors and nurses who immeadiately understood, and cared for you with attention and compassion.   

This illness is deceiving in many ways.   You say you are feeling better one day, and you will flare before you get home.   

It will deceive you into thinking that everything around you is making it worse and some days that everything you do could possible make it better.    

The worst part, is that you can deceive yourself into thinking that it will never get better, that your skin is ruined, and that your life will never get back to normal.  

The truth is you are sick.   You deserve compassion and help, and people around you should be understanding.  

The truth is that you will have good days and bad days.   And you should try and be as healthy as possible, but this is something that you have to wait out, outlast, and be patient.  

And the truth is that it is going to end, your skin will return to normal, and your life will resume as before.  

But one of the biggest truths, if you can face it, is that in the end you will know who your friends are, who it is in your life that believes you, and who supports you.   And I can't stress enough how important that information is.   We all need to make that information into a verb and use it like a compass.   Because life with supportive people around you is going to be sweet when you are healed.    Blessing to you.

29 months Tsw and my anniversary.

Today my my hubby and I celebrated our 9 year wedding anniversary. Our anniversary was on cinco de mayo and this weekend we went to our favorite restaurant the Ramos House Cafe in San Juan Capistrano. I am not healed at 29 months Tsw but last night I slept through the night without waking to scratch for the first time in a over a year.  I started my day with my usual shower and peel then got dressed and left the house about 9 went to brunch and then walked around the historic homes then antique shopping. I  getting better slowly. I used ts for 18 years and still have thick dry scales red skin on 70% of my body but it is healing. It is healing very very slow. Tsw is hard. Harder than dislocating my shoulder and harder than having a c section. Harder than potty training kids. I hope this ends soon. Prayers and healing thoughts to you all.

My hands. 28 months.

I am about to start month 29 very soon. And these are my latest hand pics. Still pretty bad but it used to cover my whole hand. I am going to beat this. 

And my legs. They are getting more and more splotchy. Not as covered. 

I feel ok wearing shorts in public. But my morning showers and peels have been hard. I peel from my neck and arms thick pieces at times and it feels very unstable when I do. The hard part is peeling so more and more bad skin. I cannot wait for this to end. 

Another flare

A few good days. Which in Tsw language means normal pain and discomfort nothing ridiculous. Now another flare. Photos than today. Day 842. ☹️

A year apart

I forgot how bad I was. This Tsw ish is too much. 

May 2015 

May 2016

This one made me cry. 

May 2015

When this is over I will be so happy. There is no way for me to write how this makes me feel. Beyond the constant pin, itching and burning is a lot of doubt and confusion. How can skin be this bad?  This much pain?  This much sadness?  

I don't know what I will do. I just hope it's over soon. 

Flares.

I have been in a flare rut lately. Yesterday I had 5. So far today 2. I have also been getting really bad headaches for the third day in a row. But I have been sleeping better and feeling the best I have in a long time. Shower recovery still is hard but after I have a few moments where I feel ok followed by a flare. 

Below are a few pics