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.
Marriage Journal 