Anyway, had my 10 day update with Dr. Rapaport. Sent him pics and a few questions, all of which generally had to do with putting a timeline on my healing. He didn't really answer any of the questions, rather reiterated the 1-3 year estimate and insisted on my following his instructions. I'm just going to copy & paste what he wrote:
"1- in the tub at least twice a day for 30 minutes- nothing added. Moisturize after- lubriderm? aveeno ? vaseline ? you choose.
2- must use Burow's compresses on face- get crusts to fall off- I worry about bacterial infection underneath- 20 minute twice a day- 1-2 packets of powder in a pint of cool water
3-You are now getting my advice and experience with 3000 patients- please do not believe all the at times nonsense that is on the internet- please stop gauging "their" experiences with yourself- all kinds of variations- only leads to frustration
4- your skin appears to be ready for sunshine or UV light therapy- it is summer please take full advantage- every day if possible- minimal clothing, swimming, no sunscreen at beginning and then some protection but it is the full rays of the sun that is therapeutic
5- followup with pictures in 2 weeks "
So...ya. Very different from what I've been doing. But ya know what?! I'm going to give it a shot. Because what I'm doing isn't helping and I'm still super uncomfortable in my skin. I admit I'm hesitant to moisturize as I don't want to go through another moisturizer withdrawal in the future. I'm going to use the Clofibrate Ointment that I ordered from Dr. Fukaya's website that I know some people have found some benefit from. I mentioned in an earlier post that I tried it for 5 days and ended up stopping because I thought it may have caused me to flare. But anyway, the reason I'm going to use this is because it's based in vaseline (I think) and may have the added benefits that others have mentioned. I'm only going to spot moisturize the places that are super dry and hurt whenever I dry out after a bath. Speaking of drying out, this is one of my main concerns for bathing TWICE a day. And without dead sea salts. I guess without the salt, I won't feel as dry, which will be good. I did take a bath the past 2 days and have to admit it was not that bad. In fact yesterday I almost went for that second bath!
I would like to point out that I do believe in moisturizer withdrawal and think it is greatly beneficial to most people. But no 2 people experience the same kind of withdrawal and what works for one may not work for another. I think I did mine quite early (at 2 months) and was flaring like crazy so my reaction to the withdrawal of moisturizer was incredibly severe. Maybe if I had waited until my skin calmed down a bit, I would've gotten that comfort that everyone else talks about. But hey, I did it for 3-4 months so it's not like I didn't try! And like I said, I'm only going to spot treat. I definitely do not want to get back to that place where I need to bring lotion and ointments with me wherever I go because I can't go 10 minutes without applying something. I'm ONLY going to use after a bath.
One last thing about moisturizing....I kind of can't believe Dr. Rapaport is recommending these over the counter lotions. They're so unnatural, chemical-laden and just weaken our already weak skin barriers. Found that weird...
Anyway, my next post will be about travelling with TSW, as I have a wedding to attend next weekend. Stay tuned!