I haven't been posting very much because there isn't much to say, which is a good thing. I'm currently in a stagnate phase - my skin doesn't look perfect or completely normal but it's livable. On the ITSAN group, Kelly P described the stagnant phase like this:
Stagnation is definitely part of TSW. What I seemed to experience later on was that my eczema was "cured" but I was left with months of Steroid Damaged Skin (dry, flaky, saggy, pink itchy--but no eczema). I describe this as one's skin being free of addiction to steroids, but not free of the long term damage that the skin takes time to heal from. Everyday though in SMALL steps your skin will continue to improve: returning moisture, smoothness, flexibility, proper color, itch free, tightening sags, etc. This is a long process from start to finish, but you will get healed all the way. Hang in there!There have been improvements - the thing is, it happens so slowly that I don't notice it unless I sit down and think about it. I talked to Leslie from Pink Like a Beacon about my current skin condition and that allowed me to notice all the things that have gotten better.
I have two settings - "okay" and "flare."
"Okay" right now is not 100% normal perfect skin, but it is okay. It's livable and doesn't distract me from my life. This is about 90% of the time so I'll talk about that first.
- Skin Color: During this time, my skin is not bright scary red like it has been in the past. The red skin is either gone (face, stomach, legs), very light pink (arms, neck, chest), or a deeper pink (wrist & top of hands). My palms are completely clear.
- Itch: The itch is so much better during my "okay" time. It's not constant and it's much easier to ignore most of the time. I don't have that uncontrollable need to scratch. Generally I don't notice or can ignore it. When I start to focus on my skin and think about it too much, though, I start noticing more little itches all over. Even then, it is not like the intense deep itch from earlier in TSW and I can either take my mind off those little itches or sooth it by just rubbing the skin a little without using nails.
- Dryness: My skin is not as dry or tight. I don't need Vaseline to turn my neck anymore! I can open and close my hands without pain from tight skin. I am currently using Vaseline mixed with palm oil (1:1) or Neemaura Hand & Body Lotion that Joey found. I use one of these in the morning and before bed/after a shower. Sometimes if I get fidgety or anxious, I scratch my hands out of habit even if they weren't itchy in the first place. When this happens, I try to catch myself and use some lotion to distract myself. Other than this, I don't need to use anything - the skin isn't painfully tight anymore. The texture is still on the drier side in most places but it's not so bad. My palms are super soft and completely normal. The skin on my palms is actually softer than I can ever remember having!
- Flakiness: My skin is still on the drier side but nothing like before. It used to be visibly flaking - often in big flakes - but now I only have that issue on my wrists, tops of hands, and a little around my mouth and my hairline. The rest of my skin is either mostly normal texture (stomach and legs) or ashy/powdery. I started using a body brush in the morning before getting dressed. I don't know if it helps with the lymph like people claim, but it gets rid of all that powdery dead skin. I think it might also help with the itch a little because (1) it's a good, non-damaging way to scratch all over and (2) I think dead skin lingering on the skin makes me itchy.
I would NOT recommend trying a body brush if your skin is raw in any way. That would hurt!
- Long Baths: No baths at all! I haven't taken a bath in at least a month. Even before that, baths had gotten sporadic and shorter since the start of 2013 (month 9ish). I shower, of course, but like a normal person!
- Rawness/Ooze: I don't have any raw spots, tiny blisters, peeling skin, or oozing. I had some issues with the skin behind my ears and my earlobes up until Decemberish, but haven't had any issues since.
- Swelling: No swollen eyes since October. I think my swollen fingers are starting to shrink, too. I never had swelling in my legs/feet (that I noticed). My lymph nodes are going down/mostly gone. There was one in particular in my neck that I have been "monitoring" since October and now I can barely find it.
- Nerves: I haven't experienced nerve zaps very often in the past few months, just a couple times here and there. It's more annoying that anything else.
- Elephant Skin: The rolls of "elephant skin" are gone, just a little bit around my wrists. Since I scratch my wrists and hands the most, this makes sense. Also my skin isn't lichenified anymore.
- Sleep: My sleeping pattern is totally normal (or would be, if I didn't let myself stay up too late). I don't have up-all-night scratchfests during "okay" days.
- Skin Color: The skin becomes redder. The light pink & deeper pink areas become a brighter, angrier red. The skin that's normal colored becomes a light pink.
- Itch: The itch increases. It goes from "can mostly ignore" to "really REALLY intense and needs scratched ASAP." Even though itching during a flare is much worse than my "okay" days, it's still much better than earlier in TSW. I can usually (though not always!) control the scratching and just rub or tickle the skin instead of tearing at it with my nails or something scratchy.
- Sleep: I haven't had many itchy nights during my flares. Last month, I just had 2 and so far only 1 this month. And even these are more manageable, since a quick shower is usually all I need to break the cycle.
So that's where I'm at right now! Not so bad, could be a little better, someday will be better! I am definitely ready for some sun - actually went to a tanning bed yesterday for a couple minutes. I know it's not as good as the sun, but seeing as how it's 35* and cloudy here, it's better than nothing! My skin was warm to the touch after and a teensy bit pink after tanning but a few hours later, it was back to its "okay" state.
If you are going through TSW, how's it going today? Have you seen any improvements or is it still early on for you?
I also wanted to mention this article from Dermatology Times, although you've probably seen it if you are in the ITSAN forum. It's a great article, though, and definitely a good resource if you're dealing with a skeptical doctor. Topical corticosteroid addiction may be to blame when 'rash' defies treatment by Paula Moyer.