Month 37 – January

I “celebrated” 3 years without topical steroids this month. It’s very bittersweet; I’m proud of myself for sticking with this but in some ways my skin feels worse than ever, especially my hands. My face also has about 3 spots that don’t seem to want to heal and ooze on a consistent basis. It’s bittersweet too because I can’t really remember what normal life is like anymore. I don’t remember what it’s like to wake up without having my hands and fingers be almost immobile and to wince with pain with the slightest movement of my hands. Or what it’s like to trust that my sleep will be somewhat normal and that I will not have to get up multiple times a night to either massage my hands or attend to the oozing on my face. On the plus side, I do recall things being a lot worse when I started. Full body itching, I could barely move my neck and my ears were oozing constantly along with my face.

This month was rather miserable though. I was doing the lufenuron cleanse and it was rough. Tons of oozing on my hands and wrists. My hands and fingers especially were sore, cut and swollen pretty much the whole time. I’m hopeful that the cleanse helped. It’s hard to know for sure at this point. I’m kind of concerned about taking it since I’m really taking a rather large risk in taking it since there isn’t a lot of information or research done on it and no real regulations on it. Desperate times.

In other news, I recently read a blog post from a fellow TSW’er who did some research about how much cortisone the body naturally produces vs. how much the body absorbs through taking corticosteroids. It’s worth a read. TL;DR: the body naturally produces around 40mg of cortisol a day and going over that amount can end up damaging the adrenal glands. The author also made a reddit thread about it where one person was saying that only 0.2% gets absorbed through the skin unless you apply it to your groin or eyelids, then the absorption rate goes up to ~30%. It really makes me consider how much I must have absorbed during my time taking them. I remember being stressed out a lot and have pretty wild mood swings.

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