Another flare

I flare everyday but this was got me really sad. 

My second Tsw Christmas. ☹️

My left hand.

This hand used to be solid Tsw eczema. It's opening up. Please continue. 

My flares a were terrible Friday afternoon and Saturday afternoon but calmed down yesterday and today. Tsw is all about trying to stay as comfortable as you can which is hard when all you want is relief and all you get are more flares. 

Last week I had such a terrible flare.   In a weeks time I had a great Thanksgiving Saturday with my family and then spiraled downward fast.  It lasted a week.  A terrible week of pain.  I managed to live, which in the moment was so impossible.  December 1st I started month 24 and the flare calmed down on the 3rd.  I was so emotional and tired, I cried a lot.  But then felt better.  Today I was able to get in the shower, peel and get dressed in about 35-40 minutes.  This is awesome.  I still flare quite bad on my hands and neck.  But I can move my legs without wincing.  Last week the tsw skin on my inner thighs felt like it would crack and split every time I extended my legs or sat down.

I really want to get better, it will happen and I see healing but i am tired.  If you wake up pain free please don't take it for granted.  My heart aches for the thousands of us living like this.  Hopefully my third year of tsw will be only healing.

Thanksgiving and feeling a bit thankful

Left pics were taken in June. 

Right pics were today. 

Thankful even if I am not healed. 

Pampering.

Right now I am getting my first pedicure in a year and a half. My feet never flared that bad but I have avoided unecessary public outings as much as possible. I hope a manicure can happen soon. 

Last nights sleep was very broken as I had a lot of nerve pain but did not peel too bad today after my shower. Slowly but surely this has to go. 

I survived.

DThis weekend my little family and I took out our new trailer to break her in. I started having a bad flare on Friday night and it is continuing today. Below are the pics of my hands and wrists. I am getting better but I am still in so much pain. 

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. 

Thinking.

I often wonder where my life would be if this had never happened. I am in and out of the stages of grief. A balancing act that I often fall flat on my face, that is life right now. Would we have had another baby?  Would I be working?  I cry often hoping and seeking this to end. Soon. Eventually. It must happen.

The last few days have brought on bright red and burning flares. 

The best I have looked in a year.

OMonth 22- while still painful but I can see healing. The photos below I took today. This is best I have looke since this time last year. Please let this continue. 

Rant. Sadness.

I am in 4 private Facebook groups related to Tsw. And to see people healing is uplifting but to have to wake up covered in 'eczema' makes me sad. I really want to be healed. I have hope but at the same time don't know what to do. I am getting better but every night, and sometimes throughout the day, I get bright red only to know I will peel over my entire body again the next morning. Ugh. Sad. The discomfort and pain are indescribable but there is nothing I can do. 

Going.

Days are hard. I feel so much better than a few months ago but still trudging along. The photo below is of my left arm around the bicep. To the right you can see the red sleeve start. To the left is where the red skin has faded. Please let the healing continue. I am so tired. 

And today my forehead started to ooze. Great. 

Seeing the light.

I don't know who reads this. 

But I am healing. Very slowly. I struggle everyday. I cannot believe how a drug has done this to me. A drug allowed by Fda. I really have struggled with suicidal thoughts and hopelessness. But I see the light. 

If you are on Facebook or Instagram please find me as I post more regularly on those medias. On Facebook I am Michael-Annjanette Debellis. And on Instagram i am @annjidebellis. 

One day this nightmare will end and the life I am supposed to live will be allowed to enter. I am so excited for that day. 

This is my left elbow today. Please let the healing continue. 

2 decent days

I am so grateful for the past few days. Sunday was painful and I flared a lot and felt very stiff and dry.  Since Monday I have felt an obvious relief. It is so much easier to live when you are not I constant pain. Yesterday I unloaded our trailer after a weekend trip, did 5 loads of laundry, folded and put away and cleaned my whe bathroom including the tub. I went to bed exhausted not from pain but from all I did. I woke up sore too as I have not done that much since before the new year. I am so grateful. Please let this be the downhill. I am a better mom and person when I am not in immense pain. Please. I cannot say that enough. 

Here are some pics of my hands after my shower. 

Need to heal

I follow various blogs and groups on tsw and lately there have been a lot of posts of people being healed. I am sorry but I am envious. I want to be healed. I just started month 21. Someday. Hopefully soon. 

Trying to not get excited.

Here's why...

This photo was Taken in late June. 

I posted it on my blog on July 10. 

That same wrist today.

Please Lord Jesus help me get through this. 

I still flare at night. Still peel everyday. But it seems to be getting lighter. Please oh please. 

2011, withdrawal has begun

This is me in 2001 with red skin showing on my face.  In hindsight I probably would not have started withdrawal any sooner as at least now my kids can help me little. It is still hard but I will do it.  My daughter is now 4, she was 2.5 months here.

Month 20

Into the second week of month 20 and I feel better. Still tsw all over but it seems lighter. Praying he healing continues. 

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.