7/30/23
every time i see baby come through the door when mom and dad bring him back at end of day, he looks taller and more grown. his grasp of language is amazing and cracks us up, and his grin is now so genuine and knowing, like he understands every single thing happening around him.
8/1/23
The past few days, noticed that the eczema over my eyes is causing me to not be able to open them as I normally would, so all day it’s like I have sleepy eyes because my lids are like half closed from the thickening of the skin there. def contributes to making me feel that much more abnormal, along with everything else, like not being able to touch or hold things right (fingers and hands still bad)
cutting out cow dairy as of now. I kind of suspect it.
first day I’ve woken up and haven’t felt like death really. Just feel like semi-death today. Which is an improvement. but noticed my face / cheeks feels hotter, almost as if I have a fever (but checked and my temp looks normal), and while sleeping last night/waking up this morning, felt a strange, low-burning tingling feeling where it’s bad on my neck and on my hands.. I don’t know if this is good or bad, but i know it’s the Prednisone. Skin does appear a bit drier/better, but not so significantly that I can say for sure. Noticed this morning that a lump has appeared on the top of my left wrist. it’s just a noticeable lump that wasn’t there before and that is not on my right wrist. doesn’t hurt when pressed or anything, it’s just there.
also, have been wanting to journal this for over a week now- that when I was deep into breast-feeding months ago, I worried about how I would stop, wondered how i would get my breasts to stop filling with milk, worried it might be difficult or that I’d need to follow some sort of tapering schedule or do something complicated. But it turned out just taking the birth control did drastically reduce my supply. It took a few weeks, but it has reduced to almost nothing, I feel. One day Hunter was breastfeeding and he pulled away and asked, “what happened to the nene?” to which I laughed-it was unexpected for him to say- but was also a little sad for him. He still goes through the motions and breastfeeds (technically i guess he’s just sucking) just as long at night to go to sleep, and in the mornings, but I really feel that there’s not much there anymore. every time I press them, they’re soft.
8/2/23
every time before I go out lately, I just check in the mirror that I don’t look like a monster from too far away. That’s the best I can do right now. i feel like one.
The lump on left wrist seems like it’s gone down now, deflated in like a day. That was weird though. Face is still feeling unusually hot like when going to sleep and waking up- I’m sure it’s from the prednisone. Skin does look better, but it’s really slow. Maybe this is what I want, because if it healed too fast, the chance of rebounding is greater? <– (I don’t know where I got this idea.) Still feeling the shittiest in the morning: just skin pain everywhere, and itchy, it takes me about an hour after waking to feel normal enough to start the day.
8/3/23
the last few days, Hunter has pulled away while breast-feeding, and says to me, “nene not coming out!” I reply that “I know, I’m sorry.” I have mixed feelings – I’m ready for it to be over, the work of it, I’m so tired. For fifteen months straight, i never slept more than 3 hours at a time because of it, then i got so sick i was hospitalized (i think indirectly because of it- because of how low i felt not sleeping), then after I got out of my 4-day hospital stay, another 7 months of breastfeeding but with just slightly longer stretches of sleep at night because R started sleeping with him, until now- no milk left, but he still needs to be sucking to fall asleep and wake up happy. So i’m ready for post-breastfeeding, yes please. But I’m also sad for him, because he loves it so much. He’s still going through the motions of it and asking for it, even though the milk’s not there anymore – I can feel it’s not.
also, the past week or so, something wrong with my eyes. I got pink eye in my left one (after getting it in the right one a few weeks before), then it went away after like two days, but I think eczema then settled in on my eyelids. And every night, I wake in the morning or throughout the night to them both crusted/watery, which is not normal for me. Not sure if it’s all eczema or viral or bacterial or a combination of these, but thankfully, no one else in my family has gotten it. Just me.
should I prepare for the worst? Like, after the prednisone and steroids use is over, should I be preparing now to possibly get so bad that I become bedridden (the “rebound” that everyone talks about)? Or should I just not even think about it? and how would I even prepare, since I’ve never been through it that bad?…I can imagine, certainly. I can imagine I would need super comfy clothes, which I have. I would need super easy ways to get food and not cook, which I could do already now. I guess I would be in bed a lot. I already have a lot of balms and topical stuff to soothe, and also more on the way, I have a lot of supplements around me already. I have Instacart. I don’t know what else I would need. Maybe some mental health support.
i’m still feeling monstrous with overly dry skin, and shedding every day and patches not fully healed, but at least not getting worse. Slowly getting better, but not enough yet to feel normal. I feel monstrous, but when I look in the mirror, it’s never looks as bad as I feel. (I don’t know which I’d rather: to look worse than I feel, or to feel worse than I look- but my reality is the latter.) My eyes just look half-closed all the time now, because it’s dry over my eyelids. I feel really photosensitive and being in bright light hurts (not to mention bright light spotlights all the bad spots everywhere, which makes me feel worse mentally, having to look at it).
i just don’t want to feel held hostage by my body anymore. i want to feel like it’s working with me.
realized that the effects of the prednisone are not really reaching to my feet, after four days of taking it- they’re still weepy and red (just a little less than normal- it’s definitely not enough). So started applying the tacrolimus ointment to them today. everything is still painful. Even though things are calming down, it’s so dry that I’m itching at least once or twice a day, and that makes little cuts in my skin, which burn for a while before they subside again, on my arms and hands and neck. when I try to moisturize- especially my neck- the moisturizer ends up making it itchier (sweat makes it itch too). So I’m not sure what to do – caught in a cycle. Still taking that long list of previously-listed vitamins and supplements, but stopped the colostrum (milk) and started drinking moringa leaf infusion every day, a big cup/teapot’s worth. Also started taking digestive bitters throughout the day (by Urban Moonshine) because i read that it helps skin to cut out sugar and eat more bitter stuff.
8/4/23
Did hard exercise again this week, at least 20 to 30 minutes every day. Yesterday I went outside to run the track and it was painful pretty much the entire time-did not really experience a high- bc just everywhere hurt: skin on feet, skin on neck, arms burned. it even felt like the sun was hurting my skin where it touched. today it was a little better: I stayed inside and did a YouTube video workout and it didn’t hurt as much, and i didn’t need to use any mental energy to try to avoid getting too close to people and trying to act normal, like I have to do when I go outside. still on the prednisone orally and also started putting tacrolimus topically. A little better, but it still burns and itches. if it keeps going this way, I might be decent – no way fully healed, but decent enough to travel i think- in two days, which is when we leave for vacation.
8/5/23
Today late afternoon is the first day I feel semi-in control of my skin. It’s the first time in months I’ve itched my feet and they’ve not wept (just really tender, thin and red there still). It’s been nearly a full week on prednisone, but just two days ago started the tacrolimus ointment, and I think that’s what pushed things over the edge and made it start healing – the prednisone alone (or at least at that dose) wasn’t enough, as I thought it’d be. My eyes have gotten better too – wasn’t bothered by them tearing or crusting last night/this morning, as I have been for the past nights, and can open them like normal now. maybe it was just eczema (I didn’t apply tacrolimus or anything prescription to my face, but using this lemongrass balm by the home herbalist and maybe that helped). Also I think the bath i took yesterday helped – I exfoliated a lot in there. I think normally…I can skip a few days between showers, but when I’m on prednisone, I have to shower at least every other day, because the shedding is just too much/uncomfortable without one. The medication changes my shedding rate, I think, and I have to keep up with it shower-wise, I didn’t realize til now, if I want to feel as normal as possible.
Marriage Journal 