The GOOD:
I am better [cautious exclamation point]. I at least feel as good as I did before the last ginormous flare. A few things have happened since I last posted.
First, of course, is time. From all I can gather about TSW, the one and only thing that is sure to bring healing is time. Lots of it, which I happen to have. Good thing, as I am expecting at least another year of this
Second, is the light therapy that I have been doing for a month now. I started out at 20 seconds per side and have worked my way up to 90 seconds. I hear it takes about a month for good things to start happening, and although I can’t know for sure how much it has helped, if any, I think that it has. That’s half the battle.
The third is that I am moisturizing much less and have switched from Vaseline to sunflower oil. I’m not really on the “MW” bandwagon, I simply feel that moisturizing is not needed as much. Also, I’ve read some pretty nasty things about petrolatum and some really good things about sunflower oil, so I am giving it a shot. I don’t use much; basically to replenish oils lost during my daily shower and on my hands after using and washing them. My hands still end up with cracks at the end of the day, so at night I oil ‘em up, put on cotton gloves, then disposable vinyl gloves over them. The cotton helps my hands breath better, so in the morning they aren’t all white and sweaty like they were with just vinyl gloves, just pale, damp, and, well, better. Thanks to Dan, by the way, for advice on cotton gloves and his research regarding petrolatum.
The bad:
My ankles and feet are still pretty bad. And they hurt. The bottoms of my feet are about half covered with what looks like good ol’ conventional eczema.
Although my itching is less primarily because of brute will-power, if I succumb and scratch the explosion of almost unbelievably intense itching is spectacular, especially on my lower legs. I keep saying this, but it’s true… only TSW warriors can understand what this is like.
I am still using Ambien, but only half a pill. I will probably try going without when the bottle runs out, which will be in a week or so. Ambien has been extremely effective for me, and the sleep it provides probably should get some credit for my improvement, which is why it will be hard to give up. I am also still taking quite a bit of antihistamine hydroxyzine (Atarax), probably 5 or 6 25mg pills per day.
Lots of flaking! I have had to blow skin flakes off the keyboard to see the difference between the comma and period keys, now its the "M" and "N" keys.
Observations
Since starting TSW, I have noticed that my symptoms are symmetrical. In the good ol’ days of simply fighting eczema, I would get it, say, on one finger or on one eyelid. Now, everything I have is virtually identical left to right. I always post pictures of only my right side, but the left side is virtually the same. I wonder if this is a hallmark of TSW.
I have also noticed that I seem to be healing top to bottom. My neck and shoulders, once a trouble area, are now almost normal. The insane itching on my chest moved to my stomach, then thighs, then calves, which is where it is centered now. I am maintaining my belief that my body is basically emptying itself out of the symptoms of TSW. Okay, my hands are a bit of an exception, but then they are always getting into things.
Bottom Line: I have soap in my hole!
HI Dave, thanks for the acknowledgment. I truly appreciate that. A couple of tips. I only wear vinyl gloves over my cotton ones when I use my hands for something that requires dirty work or water. They always get wet after 10-20 minutes. You might try one night with just the cotton gloves only. And, the super thin cotton gloves only available on Amazon are the very best ones to use. The thicker and very small Cara brand sucks. I can't remember which ones you got but I think they are the thin ones from Amazon I hope. Also, out of all the natural moisturizers available, sunflower oil is one of two of the safest to use, so good choice. The other one is the organic Spectrum brand shortening which is pure white palm oil.
ReplyDeleteI found that atarax is only effective for me if I take 50mg before bed and only once to twice per week. Anything more than twice a week it doesn't work for me. It has been an invaluable tool for the nights I know I don't want to scratch at all. I too had symmetrical symptoms and think this runs true for many people in tsw. Glad to hear you are doing better and especially happy to hear you are going to see your mom!
Thanks Dan! The gloves I have are just something my wife picked up at Walmart. I've been meaning to ask... the ones you recommend on Amazon say "jumbo", but my hands are medium at best. You think they would still fit okay?
ReplyDeleteThis is the title...Magid TouchMaster Cotton Glove, Men's Jumbo (Pack of 60 Pairs)....buy the ones that say Sold by Amazon.com LLC. Pay for quicker shipping if you aren't a prime member so you don't have to wait forever to get them. Yes, get these jumbo gloves. My hands are like yours and possibly smaller. They shrink big time when washed and dried. When you get these in the mail be sure to wash first before using them. Wash in hot water with very little detergent (safe natural detergent is best), add a few drops of tto if you have it, and wash on double rinse cycle. Then dry in medium to hot heat. The key here is to make sure they have no chemical residue on them from your detergent since they will be in constant contact with your skin up to 24 hours a day. I promise you'll love wearing these so much you won't want to not wear them when you don't have to lol.
DeleteA nice plus about these gloves too is you can apply witch hazel to your hands and put the gloves on and lightly press them against your skin. After an hour or so every little open or oozing spot becomes scabbed over with hundreds of tiny cotton fibers stuck to the scabbing. If my hands are flaring like they were up until just recently I would do this at night before going to bed and wake up to healed hands every morning.
I also will do the same thing with water diluted tto on certain spots instead of the witch hazel, all depending on how many spots there are, or whether it's oozing or sore spots from scratching. I use the witch hazel for the oozing and the tto for the sore spots when I scratch. When my skin is scabbed and healing I don't wear them at all at night. But almost always during the day to protect them from the elements. I probably change gloves an average of 30 times per day. There have been periods when I was able to not wear them for days at a time but waiting for those days to return at the moment. I think I'll get there soon! I sure hope so as I'm so sick of dealing with this. I wear these (ebay item 130603214676) in x-lg over the cotton gloves when needed but I see that size is currently out. Any brand will do but need to be x-lg as well and not latex.