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.