Tuesday, February 11, 2014

3 months MW, 19 months steroid free (mid Feb. 2014)

Not a whole lot to report at this time. Itchy? yes. Red? yes. Miserable? yes. However, at least I'm better than I was in early November. When I was on my vacation I looked horrid with a red, red face and sores that would not heal. Stopping the use of moisturizers really helped in that respect. Also I find that the skin on my entire body is dry, but it seems less bumpy, and less irritated now that I stopped moisturizing. I'm sure that it being winter is not helping the dryness either. I do have a humidifier in the shed. Maybe if I get some courage tonight I'll run outside through the snow to get it and try it out. Sometimes I sleep through the night, sometimes I don't (which is a whole lot better than never sleeping through the night!). Somedays I'm really itchy, and somedays i'm ok. I keep getting this reoccurring folliculitis which is super annoying. Minocycline helps with that. Other than that, just keep on trucking and hope things get better. This summer will be 2 years steroid free and I'm hoping I'll have something to celebrate. I know that some of the itching is mental. If I can stay busy throughout the day I certainly will itch less. But if I get stressed, or bored (which happens a lot), I definitely itch more. I probably need to start forcing myself to be more active and socialize more (without alcohol!). One more thing to add. My neck is still giving me problems due to dryness/flaking/itching. Taking minocycline immediately helps my skin. My hands look better, my neck clears up, my normal eczema trouble areas do better. This definitely shows there is a bacterial problem associated with my skin condition. And other than taking an antibiotic, I'm not sure what I can do to try and mitigate this problem. I change sheets 2-3 times a week. Totally dry off after shower prior to putting on clothes. Use hibiclens when needed. Wear loose fitting clothes. I don't know. Maybe the tsw is just making this worse. I'd be happy to hear any suggestions.

Here's a quick timeline of my Moisturizer Withdrawal:
0-3 days - oozing stopped
1st week- really bad skin, uncomfortably dry, not fun! However sores on face healing!
2nd week- really starting to see improvements. Sores healed, redness reduced, still really dry
1-2 months- uncomfortably dry, need to splash cold water on legs, face for pain
3 months- back in the game. feeling better, skin still dry but manageable. No sores on face, redness reduced.

Still waiting for a magic pill,
JT