8/13/23
felt better today- sores drying up (though still unsightly and i’m wearing my hair down and kinda in my face to cover it) and the sharp characteristic pain is gone. but still have a low level, full body flare at least, starting from my eyelids down to my toes.
8/14/23
weird dreams in the morning. living on my own in a foreign city; not my hometown. in a busy marketplace. strange characters and many things going on at once. someone big wanted to hold me.
i think i would never take prednisone again-it just made my body weirdly hot and i felt off and anxious and it didn’t even help that much. will just use ts next time if it gets so bad i need it…but hopefully never again. the topical steriods help the most i think. i haven’t had to bandage my feet in a few days, and last night was the first night in idk how many months that i was able to sleep without socks (how i prefer) because there’s no more weeping. it was nice to touch my toes together while i was resting and laying down; i haven’t been able to do that in a long time. however flawed and side-effect’d topical steroids may be, they were the only thing that allowed me this heavenly respite. Nothing else I tried did that.
8/16/23
One week, I’m hunched over in pain in the CVS, stocking up on bandages and gauze wrap once again and not knowing when I’ll ever heal and be able to stop buying them, to this week: just wearing socks like a normal person, and not needing the wraps and bandages anymore. All because of topical steroids.
face drying out, feeling a little better today. my very last dose of the vacyclovir is tonight, then it’s over, it’s been a week of taking it. The sores are all scabbed over; I think they’re going to come off within the next few days (they’re leaving red rashes when they come off though – the skin isn’t perfectly smooth underneath).
skin on feet seems better every day. I can’t believe how much better – for months it seemed, I had to wear bandages and deal with the physical and psychological effects of them weeping every single day (and night), which was so hard, and now that aspect is completely gone from my mind (where I think it hurt the most). the skin’s still too soft and tender there, but gaining more normal/stronger texture and turning from pink to a more normal color like the surrounding unaffected part as more time passes and i keep maintaining/spot checking it. I think it’s pretty much solely due to the topical stuff I’m using: tacrolimus and clobetasol. I apply the tacrolimus the most- 1-2x a day- and only use clobetasol sparingly on little spots that pop up weeping/out of control, which hasn’t happened with my feet in like a week, but it has popped up here and there on my fingers this week. finally starting to feel some relief. The worst parts now have changed- used to be feet, now it’s my face.
Appetite was large today – couldn’t stop eating/snacking pretty much all day, but they weren’t bad foods: gluten-free noodles with sausage and fish, white rice porridge with thousand year egg, sweet corn chips with guacamole, three wishes unsweetened cereal (with a handful of sweet cocoa rice puffs added) with almond milk. i could still do better – i could cut out sweet stuff more, and add more bitter stuff.
8/17/23
I’m pretty good into the habit of exercising daily now. I usually do it every day and haven’t skipped more than 1-2 days a week since I started a few weeks ago cause in my mind, it’s right up there with things like eating and brushing teeth in terms of priority every day. Been doing it inside these past few days (I like the Juice & Toya vids on Youtube cause I can just switch off my brain and follow them) cause my face still looks a bit fucked up (and it’s also been hot & humid out). During vacation last week I improvised, like running around the beach pulling baby across the sand on the boogie board, but I made sure to get my heart rate up somehow every day. I feel like it def helps – not just maybe skin, but just everything in general – mind-body.
8/19/23
This whole past week, mom and dad kept Hunter overnight. I only saw him once during the week on Wed when they stopped by and he nursed real quick, then they took him again (he had to be convinced – “surprises! buy toys!” etc). And now he’s with us for the whole weekend. I told them how I kept getting sick with EH and how even with R sleeping with the baby, it isn’t enough sleep for me cause I have to get up early (5-6 am) when R gets up to go take his place and baby gets up to nurse all those subsequent hours, etc. So that’s why they tried sleeping with him all week. It was definitely a respite for me/us. But I don’t know how sustainable – dad’s sick with a bad cough now – is it because of too much childcare, watching Hunter (with mom) night and day?
Marriage Journal 