8/21/23

just started taking L-lysine supplement yesterday for skin, and have been taking l-histadine as well for a few weeks now.

8/22/23

after being sick for so long and so chronically these past 8 months (years, if you count “plain” eczema, and not just EH), part of me is afraid that I’ll never recover- that I’ll never be as healthy as I was and I’ll always be on the brink of sickness. But a deeper part of me knows: if I can get past this and learn through this, I will sensually experience and appreciate and feel and own my health at a level I never have before in my life. 

today seemed like the first day in a while that the high heat and humidity broke, and it was actually nice to open the windows during the day. It was also the first day, as far back as I can remember, that I smiled while doing chores around the house for the sole reason that my feet…felt like feet. The skin is not perfect- i still sometimes get an itch episode with them, but they are intact and not weeping and require a lot less maintenance and psychological energy now, and I’m way more at peace because of it. I’m vowing to never let them get that bad again, even if I have to use steroids to prevent it. i’m constantly monitoring every little bump and rash on my body now, to make sure I nip things in the bud before they spread. 

8/23/23

said to R “it feels like fall” last night. At night it’s going down to 60s.

even though I had a pretty “normal” birth with Hunter, I still feel that that day was a turning point with my body. As if I was ripped apart that day, and have slowly been coming back together ever since. Even though I was surrounded by my supportive husband who massaged me nonstop all those hours and two great midwives and a trusty medical establishment and everything, I still remember the experience with some trauma- I think mostly because I didn’t know what to expect- how all-encompassing the birth would be, taking over my every sense- I wasn’t ready, and thought it would be much smoother and easier (the unexpected torture of breastfeeding also contributed greatly i think to how hard it was). I feel almost as if I or someone or something jumped out of my body that day, and every day since I’ve been trying to creep closer back to my body, tentatively climbing back in, slowly learning to live in it again. and this was with a normal birth. I can’t imagine how hard a recovery would be from a traumatic one.

8/25/23

R found my phone in the fridge today, laying on top of the plastic bin of salad mix. i do not at all remember how it got there. but things have been crazier than usual this week with dad just finding out he has covid and no one to watch baby for the first half of the day (the task has fallen to me every day, and i’m still working).

8/26/23

not sure if I was supposed to start taking my birth control again yesterday, but I didn’t- forgot and lost count- but started again today, it’s the first “active” pill after the seven-day break. 

had a pretty hard day today pain-wise. Woke up around eight after Baby and R did around seven I think, and was really itchy, mostly on face, but still went out with them anyway, to a lakeside beach, Atsion lake. The heat and humidity has recently returned, and this weather combination really hurt me while I was out- I sweated and it made everything feel more inflamed and itchy, and we had to leave early because I was so uncomfortable. Hunter seemed a little uncomfortable/itchy too, also because of the heat, I presume. I needed to go home to take a nap, and R dropped me off there, and took Baby to a fun place (indoor kid gym), but Baby got scared of a dragon mascot while there, and they came back home right when I was waking up from the nap, maybe after an hour.

“oh mama! you’re so pretty and brave. you’re not scared of monsters!” -Hunter, out of nowhere while running around on the bed at bedtime. (he’s been watching a lot of halloween/zombie themed youtube videos lately)

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?

8/7/23

had a particularly painful day yesterday, with skin. The heat aggravated it, and the stress of packing last minute to leave for vacation, and then Hunter is itchy too, and I started crying in the car while putting balm on his legs because he wouldn’t stop itching while I was putting it- I was thinking maybe he was in some kind of pain like I was too, and I felt so bad about it, guilty for his suffering, because it’s my skin he got, not Rodrigo’s. I was telling R that I’m not sure if my mood is 100% to do with my breakout (at first, I thought it was) or it’s also effects from the prednisone and birth control pills. But I feel a little more depressed i think. I can’t even say right now, as I once did, if I would be happy if my skin totally healed up, because it’s been bad for so long now that I can’t picture how I would feel with it clear and normal anymore.  last night, me and R talking in bed, and he told me, “I think I could be stronger if you would just be stronger.”

Staying at ponderosa campground, it’s so nice. the cabin is just like i pictured a cabin should be – real wood planks inside and out and ceiling to floor (i think the actual floor tho may be synthetic wood). despite getting here late afternoon yesterday, we: unpacked, played on both playgrounds, saw the animals (goats, pig, cow, horses, chickens, bunny) and hunter even dipped toes in the pool before bed. 

last night, got the idea that maybe the saltwater pool here might help my skin. have read about some ppl’s eczema clearing with pools/the ocean. so this morning around 10, got in with R and Hunter, it was fun swimming together, had the pool mostly to ourselves. my feet were healed just enough (not red anymore- turning darker and still not weeping) to go in. the pain was manageable at a low burn (face and arms) rather than any sharp sting. but after i got out and showered, noticed my bad spots on face neck & arms and hands had turned bright red and thin and sensitive. maybe it wasn’t a good idea. took a few hours to feel comfortable again. still tapering the prednisone – just two days left til i stop, and haven’t needed to use the topical steroids at all yet- just the tacrolimus to keep it under control.

after the pool, we went to cape may zoo (beautiful- better than philadelphia zoo- more scenic all around with lots of healthy-looking animals) and then acme for some items and came back to the cabin to nap. Hunter being hilarious and having a blast since he stepped foot out of the van yesterday.

8/9/23

today the worst spots are actually on my face and neck- it looks like acne almost

started using the Desonide steroid ointment last night after shower and reapplied this morning to face, neck, fingers, hands, arms. all these places still inflamed, itchy, dry, raised, burn. last taper of prednisone was yesterday – not taking that anymore. still really uncomfortable. still applying the tacrolimus too – my back feels broken out so i applied some there as well as to my burning cheeks and eyelids. the last thing i have in my arsenal to try is the clobetasol if desonide doesn’t relieve me – that one is pretty strong i heard.

yesterday visited the zoo again, then actually went back home- home home, not the cabin- to pick up some stuff i forgot to pack and do laundry, and R had an errand to run in Riverside, then we drove the hour back here to the campground. got back around 7:30 and strolled the peaceful grounds together near the office, went to playground, i ran the big, broken-shell gravel loop lined with cabins/trailers for exercise, and R grilled a steak and drank too much. i slept a lot better than the night before though, cause R slept in the bed w Baby, who i think only woke up like once himself. 

8/10/23

eczema herpeticum again. in the middle of vacation. visited callondoc website again, at 2 in the morning. vacyclovir again, 1 gram, every 8 hours, for seven days, starting today. i had thought it was just pimples. then after talking with R last night and accidentally brushing them against cloth/hands, realized they hurt. While laying in bed last night, put two and two together, jumped into action as soon as i realized. not soon enough- they’re on both sides of my face and look and feel terrible. disfiguring my jawline a little bit. This will be my third episode. I’ve now gotten this 3 times in the past eight months. I’ve never felt so unhealthy or so betrayed by my body. i never thought about running away from my new family/suicide so much until my body started failing me like this. i need rest- real rest- rest like i had before: unrushed, one long block of uninterrupted, 8-hr sleep every night. It’s been two years straight deprived of this.

went to Higbee beach today and it rained pretty soon after we set up there. So packed up and went to cape may library bc it’s supposed to rain all day today. It was nice, they had coloring and stuff for kids. just back at cabin now resting. 

8/11/23

i just realized something while laying in bed nursing baby…all three times i got EH, it was after some disturbance in my body: first time- right after i’d gotten really sick w a fever; second time- right after i had an abortion; third time- right after i stopped a round of prednisone. it’s like my body cannot take any minor upheaval anymore- anything that messes with my immune system brings it out, no matter what vitamins and supplements i’m taking, no matter even if i’m somewhere on vacation. cause i’m still stressed and not sleeping straight through the night bc baby’s here with us.

the fever and the abortion i couldn’t have prevented- they both just happened /needed to happen. But i didn’t need to go on prednisone (i was just desperate for relief). i wonder if i’d just slathered on topical steroids and not used anything orally, if it would’ve made a difference and prevented the EH?

today noticed that my whole body (up and down legs, whole back, arms) – like wherever i’m not applying topical steroids- is low level flaring, all raised and bumpy. hope this is the extent of it and that it just goes back down in the next days. never got eczema bad up and down whole legs and arms (only in concentrated small areas) and not looking to start.

today we did laundry on site (wish it was money-operated instead of “magic pass” which makes you load at least $20- we’re leaving in 2 days and will probably never use it again) then went to the Wetlands Institute which was very pretty and interesting (turtles!) but it was scorching hot out so didn’t get to walk the grounds outside, then stopped by wawa and spent the rest of the day on the beach (stone harbor). it was nice and fun at times, and i’m trying to relax, but the bulk of my mood is stress about caring for this loud, hyper baby (who just got sick with a bad-sounding cough on top of a running nose) and intense sorrow from physical pain on my face and a bit of shame/humiliation at the state of my health. And also trying to love and cuddle and nurse baby while keeping him from touching my face or neck bc it hurts and is contagious- it’s really hard. He’s waking up several times a night now since being sick, which has really messed with me and R’s sleep, too. Applying some of this Maty’s all natural baby chest rub, and constantly wiping his nose. 

8/12/23

have been using the clobetasol – the strongest topical steroid i was prescribed- for the past two days on arms, hands and feet bc the desonide didn’t seem to be enough. it’s working ok/better i guess, keeping inflammation down, but my skin is nowhere near healthy. Got some Cerave cream cause I heard good things and have been applying that too, but not much difference- still rough and dry. Still on the antiviral pills and my face seems to not to be throbbing with pain anymore, but still looks terrible- I applied some zinc balm to the bad spots, which kind of highlighted them in white and didn’t really come off in the shower either.

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.  

7/23/23

today as we were getting out of the car to go into Sprouts, I realized I didn’t bring a jacket, and had short sleeves on. I said, “oh no…I have nothing to cover myself with” because my skin looks bad on my hands and wrists and arms. As we walked through the parking lot, R reached out and clasped me to his side with one arm and said, “i’ll cover you.”

I really appreciate how it seems that: even when i can’t hold hands physically with R, we can do it with our minds/personalities- we can still comfort and connect in that way, even when physical touch is temporarily out of the equation. I’m so glad I married him. He’s the one.

something i read on a blog that’s resonating w me: we call things as we know them to be- not how they appear this moment. we speak healing truth over ourselves.

went to beach (R, me, Hunter, granny, granpa) – LBI, late in the day today, it was nice. R and I just ran together down the shoreline. it was beautiful.

was thinking how: for a while now, R hasn’t worn his wedding ring cause it gets banged up at his construction job at work. and how I haven’t been either, cz the skin on my fingers is bad. but how much more married i feel now to him at this moment- riding silently back home through the deepening dusk- my bare hand over his- our glorious unplanned  baby sleeping in the back- our heartbreaking problems heavy upon us- things harder than they ever were and us going through it all together with as much strength and kindness towards each other as we can muster- than i ever did when newly married and wearing our rings every day.

7/24/23

how does your baby son feel in your hands, to lift him, to hold him close? I never thought about it until I couldn’t use my hands.

yesterday and today, ran seriously with R. I read in a Reddit group that someone cured his eczema by regular, going-hard, aerobic workout. So yesterday we were at the beach with Hunter, granny and granpa and I said to R, “let’s run.” We ran down the shoreline. He was laughing at the way I ran and told me, “you can pump your arms and close your fists, you know” – I guess I was running with my arms out and hands open? But I was in some pain – I told him I can’t close my right fist, cause my one finger is so bad I have to hold it out kind of straight all the time, and then my feet too.

Then today, he was home for longer and had time to run with me – we ran around the track at the park right next to the house. I noticed when he sprints past me and I see him getting so far ahead, it really pushes me to push myself to catch up to him. Maybe same for him when he’s losing steam and my seemingly greater endurance is pushing me past him? this is a side of him/an area we’ve never really explored together, and it’s really nice. I also noticed how much more impulsive he is than me today. I’d planned to stick to a strict routine: run around the track three times with a rest in between each time, then go home. But with R running with me, he spies some opening in the forest or something off in the distance as we round the corner of the track and asks, “Want to go there?” And we end up wandering off, finding ourselves on little adventures. These past days and weeks of hardship…besides feeling like a nightmare mostly – the sliver of light in all of it is that it’s made me realize how much I love my husband and how glad I am that I chose him. He supports me and helps me and complements me, and doesn’t make it worse than it already is.

7/30/23

Did hard, sweat-inducing exercise 5 days out of the last 7. Though I was aiming for daily, not bad for just starting out. Will continue this for as long as I can, even if skin gets “good” again. I know it’s so essential to health. I feel like shit most when I first wake up, but noticed that about midway during/just after exercising, my mood peaks.

Took my first prednisone pill (10 mg) today, a few hours ago. I know that rebounds after stopping are really common. I know that you should taper off them. I know it’s really strong medicine. But this is my last resort: it’s painful everywhere – face, neck, arms, wrists, hands, feet- and each day i wake up, not any better at all- for months now. It’s weepy, raw, itchy, dry, crusting depending on the body part. I feel gross 90% of the day, every day from open wounds/wounds partially healing then breaking open again when scratched. When I look at my skin, just visually, it makes me feel sick and almost like throwing up. I lose my appetite at myself. At its worst (like after scratching) I’m shaking from the pain. I can’t hold my baby because of painful weepy fingers- I can’t change him right, put on his clothes right. When he reaches out to touch me, I cringe bc it’s most likely a place that hurts. I don’t mean to convey meanness, but when he (inevitably) touches a place that hurts, I recoil immediately away from him—that can’t be good for him, for his mental health – I’m sure he doesn’t understand why I’m doing it (skin pain – not because of him).  Besides the like 20-30 min I’m exercising, I’m hunched over in dull pain all day. I realize that the rebound after stopping the prednisone could be worse than my present state. But I feel, as of today – it can’t be much worse than I am right now (if it keeps going like this, i feel i’m just a few weeks away from being bedridden, completely taken over by it) and worth the risk because of how bad my quality of life is now. Like I’m pretty sure this will work- it’s strong medicine- and it seems to me that my current condition will turn into a disaster if I don’t do something drastic to stop it – it’s spreading- I see it coming up the left side of my face now and also above both my eyes – it’s never spread like this before. I’ve exhausted so many other less drastic avenues that I feel out of options, and suffering more than i can take- i’m so desperate for relief. maybe I’ll be one of the lucky ones that it just helps, and doesn’t come back to bite.

I’ll do everything I can (water, self-care, vitamins, supplements, sleep, exercise, super-slowly taper the medicine, etc.) to prevent it. After I’ve done everything I can do, it’s up to God. I know I’m doing my best. I know steroids are temp solutions. I still have the functional medicine doc appt that’s like going to bankrupt me in one month – hopefully we can get to the root of it then. Please God, take care of me. Bless my decisions. Don’t leave me.

Supplements I’m taking now:  garden of life women’s probiotic, bacilus subtillus probiotic, lots of Omega 3 fish oil and vit D, vit A, calcium-magnesium caps, vit B complex drops, purenatal vitamins by pure synergy,  l-histadine caps, started the armra powdered colostrum again. Also the fulvic/humic water, just once in awhile cause it’s almost finished and trying to make it last.  Also just stopped the over-the-counter antihistamine and started taking a more natural allergy medicine – Creekside children’s snifflex (kinda sharing it w Hunter). Have cut out gluten, like to zero. Cut out refined sugar to almost zero (still eating sweet fruits and stuff that contains natural sugar). Reduced dairy, but not eliminated (still eating cheese, though eating more goat/sheep cheese, and will eat like a pat of butter). Drinking more (water, water kefir, smoothies, rooibos tea) and eating more veggies. Exercising hard nearly every day for around 20-30 minutes.

In one week starts our week-long vacation to Cape May – i really don’t want to go into it a pain-filled zombie like I am now- what a waste that would be- our first attempt at a real vacation ever as a family. i want to be able to enjoy it some. If i knew i would be in such a bad state back when i planned it, i would never have planned it. But I booked it at the beginning of May when i still felt ok. And we can’t really take it back now, with all the planning and payments and PTO already in place.

7/19/23

no weapon formed against you shall prosper.

applied to see this local functional medicine doc, dr caffrey, for my skin. he responded quickly and accepted me, but looks like next available appt i can make is not until like a month out. feel a little hope with this, tho lots of $$ and not covered by insurance- maybe good it’s a month away, bc not sure yet how i’m gonna afford it.

feet are better from the new disinfect-moisturize-wrap routine i started. not dramatically, but definitely a step up. hands were doing worse today and i resorted finally to using the prescribed Mupirocin. amazingly, where i applied it felt a little better almost immediately, so i applied it to my neck too, which was also doing worse/very bad. it didn’t sting and seems to be doing… something. something good i think.

7/23/23

having “period” now

started oral antibiotics (amoxicillin) today in the morning, now must continue it 3x a day for five days. when I wake up, most days this past week, it seems no better, and I even see some small spots where it’s starting to spread (on right wrist, both arms, lower face), despite my natural remedy tactics. I don’t know what else to do now besides just follow the dermatologist’s directions (that she gave me a week ago). At least i just bought this probiotic (bacillus subtilis) to balance out the effects.

taking antihistamine too (OTC Equate brand loratadine) because I’m feeling really just irritated/allergic too these days. Especially when I get overheated/sweaty, it really triggers it. I don’t know what’s the main trigger though. We eliminated coconut from Hunter’s diet (and from mine too)- just started two days ago- to see if that’s triggering him, because he still has itchy rashes too (R mentioned that mine and Hunter’s skin seems to get bad at the same time. idk). He seems itchier lately so much so that I bought him two “scratch sleeves” to keep him from morning and night itching as well as some more moisturizers w/o coconut (a beef tallow ointment by vintage tradition, Waxelene, and Alba organics Un-petroleum jelly).

I keep wavering back and forth between wanting to strictly stick to my all-natural standards and then not caring what it takes (even if that means pumping my body full of steroids), if it means relief.

today had just dropped baby off at Granny’s, driving in the car just R and me, we were quiet, and then I asked him, “Do you think the more someone suffers, the greater their capacity for happiness?” He said yes almost immediately. He said…he thinks that’s why rich people who’ve always been rich are never happy.

7/8/23

the kids bday party today was really nice- my close coworker- i was glad to see her again after so long (a year). the only thing was it was so hot and they had an awesome blow-up bounce house water slide and i couldn’t go in cause it would have been hell for my skin. but i’m glad i went; i liked all the ppl there- laid back and non-judgmental, they seemed. Hunter had a blast playing in the bounce house and pool and inside with the bday kid’s toys.

spotting today, just a tiny little bit

tonight, at the end of nursing, he unlatched, opened his eyes and looked at me and said, “mon… monkey.” Then he closed his eyes and fell asleep. hahahaha

7/9/23

he’s started wrapping his chubby warm arms tight around my neck when i pick him up now, and leaning his entire body into me while i carry him. i can’t explain the feelings this jolts out of me…protective, loving, in-love feelings.

spotting again today

7/10/23

had a little spotting for two days. makes me a little sad that because of the bc pills, I won’t really know where I am in my cycle anymore/gives me an artificial cycle. I tracked it so closely, for so many years. I think like twenty years. I took pride in knowing.

I still feel my boobs filling up, and he’s still breast-feeding the normal amount of times he usually does. sometimes, rarely, he keeps switching sides and seems unsatisfied, so maybe it’s gradually getting less? I don’t know, maybe too soon to tell. *update 7/14: my milk supply does seem to be lessening.

The past day or so, I’ve been wondering if Hunter’s skin flareup last week was due to his sickness just before that- he just got over a cough not too long before that I think. Cause I was reading that back around his first birthday, he had this like whole-body, measles-looking rash which the doctor diagnosed as the after-effects of going through (and successfully ending) a sickness, so maybe the same thing just happened to him now after that cough? because his skin seems to be getting better/not worse.

7/13/23

woke up from nap late morning today with conjunctivitis in right eye, and skin (fingers, hands, feet, etc) hurting as usual per the last few weeks. i feel sick, disgusting, disgusted, weak, dirty, contagious, sad.

kind of decided tonight: even though the bc pills don’t seem to be helping my skin, gonna give them the three months the doc said i should, cause this method is so much easier for me than the interruption of opening condoms every time- i like this bc method better. And my natural family planning method I used for most of my life is kinda out the window now: my sleep and schedule is just too erratic now (with the baby to care for), to take BBT temp and give it the kind of attention it needs to work, and even when I was using this method, it didn’t work a lot times (I’m NOT fixing to have another baby). but i’ve read that birth control pills deplete vitamins and minerals and your good gut bacteria…so if i see like significant health problems starting that i’ve never had before by the 3-month mark (or later), i’ll consider stopping it altogether. just want to give it a good try.

if I ever get better and survive all this to flourish and thrive, please know that i couldn’t have on my own – i would be dead on my own, i think. i needed so much help and support. from my husband, my parents, doctors, friends, hospitals, scientists, medical staff…. i needed so much help, or i wouldn’t even exist, i realize. I needed everyone’s help, and i’m so lucky they gave it.

7/14/23

funny thought I had today after researching more on birth control pills: if men die earlier, and I’m older than R and maybe get complications from taking bc pills long-term, maybe then we’ll die at the same time/more around the same time.

had a dermatologist appt today. called yesterday in bed, as soon as I woke up, and made the appt bc I was feeling so bad and didn’t know what else to do. weird: was expecting her, like all others, to prescribe topical steroids, even oral ones (and I was actually mentally prepared/preparing take them- that’s how much I want relief) –  but all she prescribed was antibacterial ointment (Mupirocin 2%) and oral antibiotics (amoxicillin 500 mg) and said to use Aquaphor and wrap my feet in saran wrap to create a moisturized environment for healing and use the antibacterial ointment on the red spots (my right foot, my middle finger, and neck). She asked if I was still breastfeeding and said she wanted to avoid steroids because I was – so maybe that’s the only reason she wasn’t as quick to prescribe them as the other docs. I’m just so desperate for relief right now, i was ready to go down that road. But maybe this is for the best though – to try the minimum first and see if it works.

7/3/23

I don’t feel like I’m fully here. Like I feel like I’m half in this life and half not. It’s because of the pain.

i just want it to not hurt when someone touches me. especially my baby, he is so sweet, and i hate recoiling from him. i hate it.

7/4/23

Hunter’s whole body breaking out in rashes this week (actually though, i saw the beginnings of it starting the week before this): hands, arms, feet, legs, torso. the rashes are raised red patches that are itchy and his skin is drier than normal all over. and although there’s one that briefly sporadically comes and goes around his mouth, his face is thankfully spared. Trying to keep him from overheating in this hot weather, moisturizing his skin more (also ordered lotions that have MSM in them from Amazon to see if that helps), rosemary hydrosol spray, mineral water with splash of ACV spray, giving vitamin supplements, playing with him more and trying to be extra gentle and loving and attentive. mom cooking a lot of chicken soup for him.

i’m doing pretty bad too- similarly having worst skin ive had in a long time. been on the birth control five days so far (birth ctrl not the cause- skin bad for the past year) – gonna give it at least the 21 days (if not more) to make sure it does/doesn’t work. the doc did say it could take up to three months before it “fully takes over” my cycle though – should I wait that long?

7/5/23

ever since having baby, i realize regularly: i don’t have as much patience as i thought i had. I’m not as good as I thought I was. He tests everything – pushes us to all our limits. He just did a bunch of rapid-fire, stressful things in a row in a span of about 3 minutes: threw his food on the floor, then turned the full bowl upside down on purpose, then knocked over granny’s coconut water so that it soaked the dining chair and everywhere, stepped on my bad foot, and when he did the last thing while i was trying to clean everything up- he picked up a click pen that had the writing end exposed and was waving it in the air shouting, “i want to draw i want to drawww!!!” – i just, at the end of my patience in the moment and without any gentleness or regard for his delicate baby hands, ripped the pen straight up out of his grip with all my grown-up strength. No apparent harm done, but still, when i realized later how i acted without much physical concern for him at all, i was ashamed. And also a little scared realizing just how easy it is to physically cross the line with a baby, if you’re not careful. I consider myself a pretty careful person, and have felt right up at the boundary of crossing the line many times since he was born. i feel like i should have been made to pass tests and get licenses before having a baby. I can’t believe babies are entrusted to just anyone – anyone. You birth a precious, innocent new life, you take them home while the hospital staff wave bye-bye, and you’re on your own from there.

I get a little excited every day before I take my pill. Like a few hours before, I start counting down to 5 o’clock, which is the time I take it every day. I just want another dose and another of whatever will heal me. I just want to get closer and closer to the day when this is all over and the pain is gone. I want to fully live, i want to feel normal again. I want to shower without pain or dread. I want to wear appropriate summer clothes – it’s so hot out now.

still getting the recurring thought if I should use steroids. Have a kids birthday party to attend on Saturday, and don’t know if I should go with my feet/skin so bad like this. Don’t want any pity looks/vibes from ppl, don’t want to spend hours feeling insecure/fighting insecurity.

kind of made up my mind: if feet not getting better by the 21st day of taking birth control pills, I’ll use the steroid cream, because I don’t think I can take it for much longer mentally and emotionally. I’ll just use it on my feet, which is like the furthest away from internal organs you can get, and I will use the least bit possible needed for healing. but I just wanna give these pills a chance- if I do steroids now, i won’t know if the pills had an effect or not. I put a reminder in my phone, so i can count down and have relief to look forward to. just a little longer. hold on. you’ve endured months straight before- you can do it for 2 more weeks.

7/6/23

mid-flareup at 2:44 am, what I think of:

 anyone who’s ever died

curled up under repeated blows

just trying to protect themselves.

7/7/23

yesterday late afternoon, felt tired and laid down for a quick nap, and as I descended further and further into unconsciousness, I started having this dream that my laugh woke me up from. I think it was just an Elaine-from-Seinfeld-type woman who for some reason, could not stop Broadway-smiling while singing parts of her sentences whenever she talked to/answered people. Like it was a physical tic she couldn’t help – serious business-people were asking if she would please stop singing her answers, and she singsonged back that she couldn’t. After a bit of dreaming this, I actually woke up laughing out loud. Smiled as i fell back asleep. I was surprised at the sound of my laugh- i hadn’t heard it in a long time. and i was pleased that…even though sickness consumes my body, my mind is not so easily consumed.

6/24/23

heard myself think this thought once last night, and again this morning: “i can’t kill myself now- i have a family.” it’s from the physical pain all day — it hurts, burns- my feet, fingers and hands, my neck- it hurts to move and just be and it feels like…if it hurts so much, maybe i shouldn’t be at all.

6/26/23

front door lock broken currently, needs new batteries. today sitting inside with door unlocked, thought, “i’d be indifferent actually if someone came in to rob the house and killed me. That way, I wouldn’t have to suffer anymore. But it would be nice to go on living too- I could go either way.”

if God looked back on my life, I would want him to be able to say with absolute certainty: even though this girl faced difficult obstacles, that she never wavered in hope or faith.

6/27/23

Very little appetite today

6/28/23

just had a dumb kind of moment: from previous googling, I’d read that you shouldn’t use the combination birth control pill while breastfeeding, and I assumed it was because of danger of passing the hormones in it to the baby. I don’t know why I thought this- either I read something that maybe implied it, or I just jumped to the conclusion in my mind, but either way I thought I had to write off this bc method until I stopped breastfeeding.

 but as my skin is still really bad, today I googled, in a desperate, whiny way, “why should you not take the pill while breastfeeding” and as I read more about it from reputable sites like Planned Parenthood and La Leche League, I found out that it is absolutely OK to take hormonal birth control while breastfeeding – just the reason they do not recommend taking the combination pill- which is the kind I want to take to see if it heals my skin- is because the estrogen in it, for some women, reduces milk supply. Buuut if that side effect happened, it’d be all the better- I am absolutely ready to stop- it’s been almost 2 years of breastfeeding now. The minute I found out this information, I jumped on the Hey Jane page and ordered the pill from them. Currently waiting on their response with some hope, but because so many things have failed me in the past, not too much hope.

just feeling a little dumb about all my incorrect assumptions- if I had just dug a little deeper, I would’ve found it out and started sooner. but at least in that meantime, got to try red clover and chasteberry (both of which don’t seem to help). and Baby got a little more nursing time in and the benefits of that, in case this medication will render me physically unable to nurse anymore.

The past two nights, after nursing and Baby let me go around midnight or almost 1 AM, before I left the room, I kissed R on his sleeping lips. last night it was nice- he didn’t move, but tonight when i did it he jumped a little, as if he thought I was a bug, lol.

found tick on baby when changing his diaper this afternoon, on his right hip area, a tiny one, pulled it out and crushed it with the tweezers, sprayed briotech spray on it and put a little green wonder salve (from red moon herbs), and put his new diaper on. (update: looks like it’s healing well, the spot gets less red every day and I haven’t put anything else on it since)

there’s this feeling I wanted to record that came out of me being in so much pain. It’s really hard to describe, but I want to at least try so that, at least, like one good thing comes out of all this suffering. And it was like a fleeting feeling, but it felt very important, like an attitude that I should have 24/7 every moment. It went like: how every moment is so precious that the silence in that moment is like music itself. Like to be alive. It never should be mundane and like even doing “mundane” things like walking, cooking, just moving the human body and using all five senses, it’s amazing.  that’s like the best I can describe it. I hope I never lose it, sensing magic in everything. like to be healthy and alive at any given moment is a miracle and privilege, and not at all guaranteed. How every living moment is so delicate, how things can tip so easily between life and death, I think is so taken for granted.

6/30/23

12 pm: just got the notification from Hey Jane that they sent my birth control prescription to the pharmacy. I’m excited, maybe this is it. Maybe this is the solution. I’m also nervous because I’ve never relied on conventional medicine so heavily before- this is a pill I must take every day. I usually turn to herbs, vitamins, supplements/my own concoctions first. With the pill, there’s a risk of blood clots and strokes and such, I read. But I was thinking that if this helps my skin, I’d rather die from a heart attack with clear skin, having been comfortable most of the time leading up to it, than not try it and continue to suffer every day.

even though it is beautiful out today, and a wonderful only 15-minute bike ride to the pharmacy, and exercise is always my first goal, I didn’t bike there because of how bad my feet hurt. but I drove the three minutes and got it, and I’m back now, and I took my first pill.

about an hour after I took the pill, feeling drowsy, but not in a bad way, kind of in a lightheaded, high kind of way. (*felt the same feeling after the second time i took it too) but something that worried me was I was folding laundry, and whenever I leaned on my left side, over my heart, there was a not a stabbing pain, but a little poking sensation/pain there over my heart, whenever I kind of put weight on the area to lean over- I don’t think I’ve ever felt this before (*this feeling thankfully did not come back the second time)

7/1/23

the best gifts give you exactly what you need at that moment. the most heart affirming, loving thing someone can do is to meet you where you are, especially when you feel far from ideal/where you think you should be.

when i finally find a moment without pain, i call all my senses to come back and we sit quietly humming inside it, trying to soak up every second before it’s gone again.

6/17/23

just last night, started taking chasteberry extract for skin. the taste is more bitter, more medicinal than red clover. taking 3-4 times a day and not sure if I could stomach the alcohol extract (using glycerin extract which lends sweetness).

6/18/23

On my birthday, left R and Hunter at home and drove alone back to my parents’ on empty late-night roads, went upstairs to my childhood bedroom without anyone noticing I was there, and curled up in bed in the fetal position. slept like a baby. in their house I can sometimes, fleetingly, still be the baby. I think everyone, sometimes, needs to be babied. Especially during hard transitions. My body was reaching out for it. The whole drive there I heard it saying: “Take care of me! take care of me. Hold me! Feed me! Let me cry.” It was all I needed and wanted. The next day, after a whole night and a whole morning with no demands on me, I felt back on track.

6/19/23

today was the first day in weeks and weeks that walking around the house doing chores, my feet felt fairly comfortable and not like they were cracking open with every step. have been doing bandages with various ointments and then socks, maybe this is better than no socks/socks only.

6/20/23

last night at like 3:30 am though, woke up with it bad, weeping over a large area (the tops of both feet) and today it feels bad again. Today had the fleeting thought again to break out the steroids and just be “done” with it – not sure how much more of this I can mentally take.

6/22/23

I think one of my favorite changes I’ve made recently is starting to make water kefir. I bought some grains online from Cultures For Health, and now there’s always a batch in the make on the counter and one in the fridge ready to drink. It’s too strong for me to drink straight-  I pour out a little and then fill up the rest with regular water and it’s a nice change from just plain water; it’s like a tangy water. I was especially craving it today after eating ice cream.

although my face is all clear now (thank god), I noticed in the past week, that under my chin, there is still a lump under my skin, like right under where my tongue is, where I think there shouldn’t be. so that is a little unsettling, as if it is just waiting in the wings to strike again. I keep pushing and poking it in, as if that will deflate it, but it doesn’t seem to help. Thinking to look into lymphatic herbs to address this.

when dad took Baby this morning and was driving away with him, I felt not one shred of guilt.  I realized why: I just gave this baby my everything- I had no more to give, and was passing him on to the next person until I recharged. Last night, nursed him late into the night, around midnight. Worried about his cough (he currently has a bad one, but no fever or anything else), remembered we had cough syrup that I bought him as an infant that we couldn’t use because of the honey ingredient in it, dug it out from the back of the fridge, placed it near the bedroom for the next day. Got up early to nurse him, tiredly but willingly nursed him on both sides- two times on each side, per his request- from 6 am to 9 am, dozing in and out all the while, so tired. When he finally woke up for the day, cuddled with him while also a little sadly (because I can’t do everything at once) eyeing the work just sitting in the queue on my laptop that I could not do yet. Changed diapy, changed his clothes, gave him a dose of the cough syrup and then packed it up for dad for the day, and finally handed him off, with nothing left- Time to start the day now. After starting it like four hours ago.

*

thoughts that occurred while in pain with feet tonight:

touch hurts it, and touch heals it, all at the same time.

nothing you encounter in life will need running away from.