Week 9

This has been another up and down week (aren't they all?). My new saviors are tea tree oil (a couple drops in the bath) and Simple brand smoothing facial scrub. 

Tea tree oil is naturally anti-bacterial, anti-fungal, and anti-inflammatory. It's supposed to help with itch as well, but with as bad as TSW itch is, it doesn't really touch it. I don't know if it's related, but the parts of my skin that used to rip open with scratching (arms, neck) don't anymore since using the TTO. My neck still oozes if I scratch, though. :(

The Simple scrub has been great at removing extra dead skin. I have yet to try it on my neck. 

My chest is the biggest wreck. It feels like very bad sunburn. It's hot to the touch and the pain almost makes me nauseous. I've been sleeping with ice packs. If skin touches skin (fold over because of the thickness), the sweating and itching are unbearable. The tightness is pretty bad, too. 

The flare is spreading down my forearms in typical symmetrical style. 

The worst (or best?) part is the new sweating. I've been on TS for so long that I never knew what sweating felt like. I just never sweated, no matter how hot. Now it's all day. The good news is it means the steroids are being flushed from my body. I still hate it. It means burning and itching as well. 

Thick skin

Left arm, inside elbow (healing!)

Right arm, inside elbow

Chest and shoulders

Left forearm, beginning to flare

I'm ready for a break. Hopefully I get a bit of one soon. 

Rough Night

Another rough night. I mauled myself again. Woke up in the same pain as a few days ago. I ripped open my arm, neck, and behind my ear. Bled on my pillow. And my left forearm is starting to flare. I have never ever had dry patches on my left forearm before.

What a disappointing morning. Bad lighting for the photos, but baby and I take a ong time to wake up in the morning and we keep it dim for awhile. :)

8 Weeks In

This week has been pretty hit or miss for me. Some parts are healing nicely, and others I've made way worse by scratching. I was moisturizing like crazy because I couldn't stand how my neck looked, but it made my skin much worse. I've found that my face can tolerate moisturizing. It doesn't bother it at all. The rest of my body gets itchy and I end up scratching it raw in the middle of the night when I have no control. The moisture on my skin also allows the skin to rip more easily, unfortunately. So, no more moisturizer on my body. I've kept up the Epsom salt baths and they make me feel so much better.

Chest and neck. So bad! I scratched it completely raw about 2 days ago.

Neck. Healing scratches.

My back is doing way better. Almost healed.

My face has been worse. My upper lip and chin area is the worst. I haven't been waking up super dry.

Left arm. Best this has looked in forever!

Right arm.

I have been in a lot of pain for the last 48 hours. I had moisturized and then gone to bed. I woke up kind of sweaty, so I started scratching. I could literally hear the skin ripping. I could barely move my neck without stabbing pain until this afternoon. I decided to take a shower because I hate washing my hair any other way, and then immediately had to take a salt bath because I was so itchy. After I soaked my neck for awhile and it dried out, it felt much better. It had hurt so much the past few days that I hadn't even dared to get it wet. It was oozing and bleeding. 

So, lesson for this week: no more moisturizing the really bad parts! The scabs healing with the itchy dryness are beyond discomfort. Not worth it for a little bit of "better" looking skin.

Observations

1. My eye mucus is extremely thick and sticky since stopping steroids on my face. 

2. I have been consistently getting eye infections since stopping TS. I have successfully treated them all with breast milk so far. 

3. My flare patches are almost completely symmetrical. If one patch shows up, another shows up on the opposite side of my body in the same place within hours. 

4. I should not let myself get hot. I woke up in the middle of the night sweaty and had scratched myself raw all over. 

And this is what I woke up looking like this morning (after 3 hours of sleep of so. Babies do not care about TSW!):

Warning

I decided to do a search on clobetasol to see if there were warnings that exposure could cause the symptoms of TSA and consequently TSW. These are the things they keep in fine print. I wish I had had the foresight to check out these warnings in the beginning, as they are spelled out in black and white (source).

7 Weeks In

I didn't document the weeks in the middle because I wasn't sure that I wanted to. However, I think that it's a good idea to see where I've been and where I get better along the way to give myself some perspective. At this point I am (I think) nearing the end of my first flare, so this doesn't depict where I was at my worst in this cycle. It affected my face, neck, shoulders, chest, and back. Thankfully nothing from the waist down.

Both shoulders were completely scabbed over and raw at the worst part, as was most of my upper back. My chest was bright red and uncomfortable. My neck was the worst (and remains the worst). It developed a thick, rough layer of skin that easily flaked off and itched like hell. I often scratched it bloody. The skin is looking better but still is extremely sensitive. It doesn't feel good to touch it. By "better" I mean there aren't huge scabs, but it's rough and red and has the distinctive "elephant skin" appearance. My face began to swell in the morning, especially around my eyes and lips. I would wake up in a layer of dry, sandpaper skin and almost swollen shut eyes. While still dry, it's not as bad, and the swelling has decreased dramatically.

Neck

Neck, chest, and shoulders

Back

Face (swollen!)

Inside left arm

Inside right arm

I have been taking nightly Epsom salt soaks and using Neosporin (making sure it is without steroids) on parts I scratch open. I want to make sure that I don't get an infection because I don't have health insurance, so I can't go to the doctor if I do. My next step is to order some good essential oils. I have lavender (although I need more), and I'd like to add lemongrass and chamomile.

The First Days

The first days of TSW affected my face only. I'm not surprised, because that's where I used steroids the most. Here are my first five days that I documented.

Day 1: 

Here is what I looked like on Day 1. Basically what I looked like while on TS.

Day 2: 

Day 4 (I missed Day 3):

Day 5:

My skin got progressively worse. After a few weeks my body started to flare, even in areas that I never used TS. That's when I knew for certain that I was experiencing withdrawal.