5/21/23
The part that you walk alone is holy. When the road opens up to companions, it’s a blessing. so my life has gone, alternately: holy to blessing, and back again, back and forth.
rodrigo just left with the baby and asked if I wanted to go to the park. I was so stressed at the moment I did not answer, and I think he was so stressed that he did not give time for my answer and just picked up baby and shut the door, but in my head, I replied, “why would I want to go spend more time with someone whose shit (just cleaned his big messy poo) and pee (peed on me while I was cleaning him) and yogurt he just spilled is all over me?” My right tit was also throbbing-hurting from being bit during our recent nursing session. But after I cleaned myself up and finished all the chores I needed to do in the house, I missed him, and was out the door to go see them. I love running next door to the park and searching all the stranger-faces until I find them, and hurrying to their side, and watching baby play. I feel peaceful and where I should be when we’re all together (and nothing too stressful is happening).
still have the weird congested feeling in my lungs, but it’s not painful or keeping me from being able to do anything. will get it checked out if it doesn’t go away.
5/22/23
was thinking how privileged it is that i live somewhere that after amazon delivers my packages, i don’t feel too much anxiety about having to collect it off the porch right away, like not high crime around here. like one less thing for me to worry about (but something that another woman somewhere does worry about.)
not much appetite past few days, maybe due to sickness, but also due to not being able to open mouth wide to chew and eat- it breaks open the sores that are crusting over, and after I eat, they are freshly oozing and so uncomfortable. I miss eating whenever i want- currently only eating when absolutely necessary (when very hungry). Some small spots look like they’re drying and healing, but I’m not sure if the earliest ones, right under my bottom lip, are going to, because they look so, so bad.
Taking me two or three times as long to finish a small meal now, and I was a slow eater before. Cut my food in tiny pieces, open my mouth the little it opens, stick my tongue out, carefully angle the food in, chew slowly and swallow, over and over. it’s almost like a meditation.
Realizing how much of a privilege it is to be able to open mouth to receive food and savor it, and smell it and taste, and chew and swallow without discomfort. What a beautiful gift, eating. What a pleasure.
5/23/23
The lesson, I guess: as soon as you dream of the snake, start taking the antiviral pills.
healing is going so slow. the first incident, when I went to the hospital, I was pretty much healed when I went home after four days. This time around, I’ve only just started feeling healed late in the day today- a full week since I started the antiviral pills (at this rate, I think it will be about another week until I feel much better). I attribute it to the hospital intravenous meds working a lot faster in the body probably, than just pills alone. But at least this time I stayed out of the hospital, and Baby (and R and parents) both times so far, did not catch it from me, from what I can see. Both blessings. Two fucking by-the-grace-of-God blessings, and I couldn’t ask for more.
5/24/23
appetite coming back, last two days or so. starting to feel better. all the spots drying up more every day.
5/25/23
sores are drying out even more, and some even started to fall off. Heard the same question in the back of my mind a few times today: are you ready to have your life back soon? The answer: mostly I am elated, and so looking forward to not wearing face masks to hide all the time, to sitting close to R again and not feeling embarrassed, being able to show my face, and just feel normal again, and be not so pitiful-looking. There’s another side to it though:
a few times, surprisingly, during the sickness, I felt glad to have it. They were: when I was biking alone to CVS to pick up my antiviral prescription, I was wearing a mask, but the thought occurred to me several times during the ride, that if any man tried to stop and rape me, or anyone tried to do me harm on my way there or back, all I would have to do was take off my mask and tell them how painful and contagious my condition was, and I’m certain that that info paired with the horrific looks of my face would’ve been enough to scare them away, to keep anyone from touching me. I felt more secure, protected. So i guess… in my normal state, I am insecure about my safety, and a little scared when I’m out on my own. i definitely felt like my sickness protected me in this way.
The other times I was “glad” to have the sickness was when I could use it as a completely valid excuse to stay home when R went to visit his relatives and took baby- it’s a bit uncomfortable for me because I don’t speak the same language (Brazilian Portuguese) as them and though they are the greatest most generous people, it’s mostly awkward for me sitting with them during gatherings because of not really talking/being able to communicate everything I want to, and I was glad to avoid that. The stress of it. It does stress me out a little I realized- surrounded by how far I have to go, how much I have to learn before I can communicate significantly with my extended family—it seems impossible- and I guess every time we all hang out, it’s like in my face—how much I haven’t done/haven’t learned. The ideal thing would be for me to learn the language and speak fluently with them and be all jolly and happy, and that’s what I want, but I have not put the work in/have not found a way to work it into my daily life so that I learn it (R and I always speak English to each other, it’s just easier). I also was glad when R took the baby to go see them because it gave me time to myself. Maybe when I’m well, I shouldn’t let myself feel too much pressure about going with R every single time he sees them- that I can skip it sometimes and shouldn’t feel guilty. maybe also lock down- into a routine- a very accessible, non-intimidating way to learn a little bit more Portuguese every day.
I was also glad to have an excuse to not have sex. I always am wanting physical affection and closeness and cuddles from my husband, but as I mentioned in earlier posts, ever since the baby was born, I have not slept right at all, and have not been feeling nearly well enough or with enough energy to initiate sex- R has been the one initiating all the time, since baby. When I was sick these past few weeks, I was glad to have a very obvious excuse not to – an excuse i’m sure he could understand and so wouldn’t have any chance of hurting his feelings, the way the excuse “I’m just too tired” might, no matter how true it is (it’s 100% true- I feel certain that if I could just get enough sleep, the 8 hours or so a night that I need, which I’m not getting now- I’m getting like half of that now- but if I could, I’m sure I could get into it again and initiate like I used to, I still love and desire him as much, or even more, than ever).
5/26/23
regarding the zoom meetings, the first week of my sickness, things were still raw, so I was able to hide it by dimming lights and making the light source come from mostly behind me, and pointed the camera down from the top too (I usually aim it right at face-level). But this Wednesday, there were many black-brown spots from the scabbing over, and there was no hiding it with camera tricks, so I just wore a mask covering my mouth. I was the only one wearing a mask in the whole meeting of like 30 people, but what else could I do. I’m pretty sure the person who it was the biggest deal to was myself, and no one said anything to me about it afterwards.
Now that it’s almost over, backtracking in my mind to try to pinpoint how and why I got the relapse. I don’t know. They say symptoms start to show within two weeks of exposure, but two weeks before i started feeling symptoms, I wasn’t doing anything out of the ordinary like going to concerts or big gatherings. The only big thing that happened in that time frame was the abortion. So then I was reading into the effects of the abortion pill on your immune system, and found some studies that showed it can actually lower your immune function when you insert the misoprostol vaginally, like I did, instead of taking it buccally. I didn’t know this. At the time, it just made more sense to me that since the area being targeted was that whole abdomen/uterus area, to put it in the vagina rather than the mouth. If I had known it messed with your immunity that way, I would’ve put it in my cheeks. Wondering maybe if that was it- what caused my immune system to dip low enough for me to catch the EH from wherever I caught it. like maybe my immune function WAS good when I took my Viome sample, but then the abortion medication (vaginally) is what suddenly lowered it and created a window for things to make me sick. and if that was the case, after this all passes, hopefully, I can get my functioning levels back up again, and avoid anything that lowers it, as much as I can.
still taking the Armra colostrum powder and the fulvic humic water every day.
even though my skin is bad now (again) (usual places- neck and feet- though thankfully not hands), I feel like progress was made. Because… there were those few weeks recently where everything was healing- everywhere that was bad was reversing, getting better, becoming whole again. It was systematic, from my feet up to my face. So I know that it is possible. If I can just find the right balance of whatever- that healing is possible in my body. it got to a point where almost nothing was hurting anymore- I was so close. I saw it for a few weeks, even though it was fleeting. This gives me some kind of confidence. like, I had it. I had it. even though it squirmed out of my hands, I was holding it, for a time. my body is capable of it.
5/27/23
thought i had tonight, during late night breastfeeding: “i’m just stuck in this nightmare until it ends.” this “nightmare” all revolves around sleep: early evening around eight or nine, i get deep down in bones, all-over-body-ache tired, but have to stay up nursing him until he finally falls asleep for the night (usually around midnight). during these hours of nursing him to sleep, i almost fall asleep myself, but can’t stay asleep because need to, after he falls asleep: go pee one last time, clear away any toys and anything hard/sharp that was tossed around us during the sleep struggle (sometimes while nursing he asks for certain toys and we have to go get it from the living room and bring it back to the bed for him), brush teeth if i didn’t yet, and get into my own bed. So nighttimes are torturous for me in that I desperately want to just go to sleep early and sleep the whole night, but those hours I’m nursing, I can’t- I’m struggling to get him to fall asleep, and I’m drifting in and out of sleep myself without being able to totally surrender to it. by the time I get ready for bed and get in my own bed, these acts jar me out of my almost-asleep state, and it takes me longer, maybe an hour or more, to eventually fall asleep again, which takes away more sleep time. Then around five or six am, either Rodrigo gets up for work, or the baby cries to nurse again, or both- either way, I have to get up and go back to baby’s bed, so it’s not that much sleep that I get. Then nursing him from six till about nine (about three hours he does it, on and off in the morning), it’s the same predicament: wanting desperately to surrender completely to sleep (because I haven’t had a full night’s), but even the lying-down nursing position is too uncomfortable for me to do so, so I am painfully drifting in and out of sleep during morning time as well, until he wakes up for the day around 9 am, and i text my dad who takes him, and i’m finally alone, that I can actually settle down into the position I want (usually on my back), and pile all the blankets on (baby is always hot, he hates blankets), and get the sleep I need. I feel so bad that it’s late in the morning- i used to love going to sleep early and waking up early- that’s my natural pattern- but this is the only time I can do it. And that’s the nightmare cycle – day after day. I know one day it will stop…but it just can’t come soon enough. We all (me, R, and parents) have been strongly hinting to him when he asks to nurse (“nene!”), we say things like “big boys don’t do that anymore,” or suggest different foods he might want to eat or drink (pizza? “no!” pasta? “no!” yogurt? “no!”, etc.), and R even playfully exclaims “no more nene!” but Baby still loves it and acts like he needs it- he won’t give it up yet. if we don’t give it to him, he ends up scream-crying.
5/28/23
When R takes the baby out somewhere without me (they went to his sister’s house again for a birthday bbq) and I’m left at home, I get this burst of energy and relief. I think: “Finally. I have time to do what I need to do.”
Something so unexpected: I was reading Crying in H Mart: A Memoir (so good, so so good) on my phone while baby was nursing this afternoon, in the living room. Feeling pretty normal, pretty fine. Then I got to this part where the author says, “That night, lying beside her, I remembered how when I was a child I would slip my cold feet between my mother’s thighs to warm them. How she’d shiver and whisper that she would always suffer to bring me comfort, that that was how you knew someone really loved you.” And before I could even look down at baby who was sucking away at the edge of sleep, i broke into these deep, rhythmic, heavy sobs (kept it quiet) that shook the whole cotton canvas play tent we were nursing in. just watched the whole tent around us shaking and shaking as I cried. To suffer for true love.
Marriage Journal 