Better than yesterday

OI have never known pain like I have with tsw. I have had two babies via c section. I have dislocated my right elbow once a year since high school (old reoccurring injury). I have had sunburns cramps and migraines galor. But tsw... It's hard. 

In natural daylight 

Redness more evident in artificial light

This is my face on a tsw good day. Not flared. Itchy and peeing but acceptable. You can see the dark parts, around eyes and mouth. Those are my worst spots. The areas that flare. The lighter spots on my cheeks are what I see healing with faster. But I will take today's pain over yesterday. Please let the healing Continue. 

My hands and arms are still my worst spots as a whole though. 

What am I going to do?

O"What am I going to do?"  This is a question that runs in my head all day when I hurt. I ask myself how can I go on?  How much longer can this last?  

The answer to each of these is "I don't know". Life is so hard right now I am just trying to get from one moment to the next. One painful moment that hopefully will leave someday. 

This dark image below is of my left left. That contains my peeled flakes of skin that I scratched off on a 15 min drive. No blood or other grossness but just not bad skin underneath. But this was just one hand and wrist. I hate tsw and I need a break that lasts and heals. Please. 

Almost to month 20

In a few days I will start month 20 of tsw. And for the first time since I started I can say I have been feeling better. I had a terrible go since there year that I feel peaked in May. My pain is more localized and does not last all day. I am praying this continues. I hope to blog more about supplements, oils, and other tools I am using to heal... Soon. 

Long.

What is long?  The amount of time I have been hurting. Wow. That's sad. 

Day 564

Yesterday was an ok day in terms of tsw. Today is a bad day. Pain all day in very local places. My neck, chin, elbows, and knuckles hurt so much at times I literally have to stop what I am doing. I have this expression on my face that I cannot hide when the pain is this bad. I have little hope today as I know tomorrow may not be too different. Below are pics of my knuckles. It makes me cry to see my skin. They are covered in long sleeves almost the whole day. Washing my hands hurts so much. I am envious of others who don't have to feel this. I don't look forward to my day. Even sleep evades me when the pain is this bad. Last night I woke up in the middle of the night with my shoulders so numb and they felt as if they were being pulled out of their sockets. Like my entire shoulder and rotator cuff had fallen asleep. Good days usually mean I won't sleep. I don't know why. 

I am happy my hands do not look terrible. They are tsw acceptable. But oh so tender and painful. 

A hard day's schedule.

Everyday is hard. Harder than I ever thought life would or should be. This is my schedule. Sad as it seems. 

Kids are on summer vacation so I can sleep in. My husband leaves early so he is gone before I get up. 

6am-6:45. My son comes to my bed. And he lays with me til it's about 7 am. He has learned to lay quietly til 7. Then he plays games on my phone. 

7:30-8. My daughter wakes and my day begins. She turns 4 tomorrow. 

730-8 I get breakfast laid out for kids on the table and my breakfast shake in the fridge. 

8am my hopefully chill shower. It's 2 minutes of pain most times. But is short. I have been getting out of the shower with lots of pain and an incredible itch. My wrist hands and neck itch immensely. It's unreal and causes immense anxiety.  I then put on an essential oil blend my doctor has given me and very little organic coconut oil. I only really moisturize my neck and mouth area. The rest burns with moisture. Then I get dressed in my usual leggings and tee

815-830  kids are entertained with iPad and movies and then I peel. It's gross (to me). My arms peel the most. I itch and scratch and skin peels. It has gotten better but still a good amount. I will sit and drink my doctor provided detox shake with omega oils and other supplements while I catch up on the dvr. This part is usually not too bad compared to getting out of the shower. 

930 am. I cover up. Ankle to neck and g'gloves on. Y hands. For me it is best if I don't see my skin. My eczema covered skin. It's depressing to me and hard to see. So I cover it up. And it stays covers for the most part. 

10am. If we have errands to run it starts at 10. I do laundry daily and vacuum and sweep often. Imagine a sunburn and how you peel. Well this happens everyday for me. 

12 lunch and more supplements. 

Lately my hubby has been off work late and from 2-5 I have moments of feeling ok and that is when I make dinner. It's been a lot of paper plates and casseroles as anything more is hard to finish especially when I hurt and a flare coincides with making dinner. 

530-6pm. Hubby is home. Kids are fed and I can escape for a little walk in the sun or a quick escape to the backyard. 

I don't want to really see anyone right now and am dreading back to school to see moms and kids. I am home a lot. And after some bad party experiences I am done with parties. 

730. Kids are in Bed and hubby and I get an moment together. We usually escape to the backyard in the garden for a little dessert and music via our pandora. 

9pm. Time to cover up again and put pjs on along with theoge oil and very little moisturizer. 

There is so much more that happens but this is me now. It's hard and I don't see an end I sight. Hopefully soon. 

Out of order entries.

I write this blog for myself but apparently is gets views and I am sorry but my most recent posts are out of order. I will try to proof read more and keep entries in order. Sorry. 

June 4 peel and pain after another flare

So last weeks oh so painful flare has ended as have my daily showers. I now bathe every other day. Doing a form of moisture withdrawal. Limited moisturizers to be exact. Man I am tired and want soft skin again. Here is an update in images. 

After no shower and a bad flare.

Life in June is hard

These pics were taken on Tuesday. I loon better today but it still hurts.  Life is too hard. 

In the morning. First thing. Before shower and peeling. 

After shower and peeling

Another hard morning.

Will this end?  I would love to jump ahead 5 years til this is just a memory. 

An emotional weird day.

I have cried all day. Not in pain but in emotion and fatigue. I am praying for healing as I am tired.

A good day.

Today, my first day of month 19, and the best day I have had in a long long long time. I watched my one year old niece and my two kids at my moms house, spent more family time when my nephews came. Took a nap, picked up toys, cleaned, fed kids, and had a great day. All with a few minor peel and  itch moments. Came home and picked up my house, got ready for tomorrow, cleaned out my purse, put the kids to bed by myself no husband. This is a tsw great day. I hope more days like this come more often.