9/25/23
today when I woke up, it didn’t hurt as much as recent days. It felt like maybe it hurt half as much or less, which is good. Have not been using much steroids, but did use a smidge on my feet and fingers the past two days- once each day- because it was flaring a little. but like where it was raised on my arms before, now it is flat, and i haven’t used any rx meds there at all for weeks.
bath/shower didn’t hurt as much as usual today. I actually for the past two weeks or so, skipped my weekly bath and just did showers because my skin was so bad. today was the first day I felt good enough to actually brave a bath, and it wasn’t too bad. by which i mean: I didn’t need to put on some prime video episode (currently watching The Wheel of Time) and watch it as I itched and self-soothed for an hour after my shower today, like I have been doing these past few weeks. so that’s improvement.
something else Hunter started saying: after he got a toy ice cream and seahorse from Dave & Buster’s this weekend, I was just quickly wiping them down with a water wipe before he played with them in the car, and as I was wiping, he looked at me and said, “you’re the best mom!”. Surprised me lol. and then also this weekend he got a dragon costume from his aunt, and as R was helping him put it on, he looked at R and said “you’re the best dad!” lol
R seems to think that Hunter is very musically inclined and has rhythm – I don’t disagree. I remember when he was a baby before he could even talk or hardly stand, he was moving to the beat, and with the beat, of songs on TV. And then this weekend, his favorite thing at Dave & Buster’s seemed to be the guitar station- R said that he was moving very rhythmically to the song, as if he was actually playing it. R wants to get him a drum set. also we want to enroll him in daycare soon, when we can afford it, but he also has to be potty trained I think, which he isn’t yet.
9/26/23
Today, biked to functional doc appointment, I see him once a month now. Google maps said it would take 20 min, and I biked really hard like as hard as I could cause I was afraid of being late, but it still took a half hour actually. I think the tire(s) on the old bike might have a leak. So I was 10 min late and the receptionist was calling my cell just as I walked into the office. I was apologetic and overheated and had just biked through light rain the whole time, but felt good from the hard exercise. nothing hurt/was itchy actually. He went over my bloodwork results and i’m pretty healthy- my liver and thyroid and kidneys and all that stuff were good/normal, and i don’t even have anemia or low vit D like i thought i did. Some subgroup of my white blood cell count was high i think, which he said could indicate inflammation. He said i should be eating animal protein with every meal. Assigned me to get more bloodwork- one that tests for allergens, including local-to-NJ allergens.
9/30/23
promise to put on repeat:
With every step, around every corner, i will treat myself with love and care. no matter how bad it feels- come what may- i will wrap compassion around me like a blanket from the emerald forest- tightly secure it, and never take it off.
have not written about this yet, because I’m still dealing with it, but: I had a day or two stretch this week where are my skin seemed pretty good- not healed, but healing. Then, right after that, and without seemingly any change I can think of, these past two days I’ve had a pretty severe red breakout on my face- worse on the right side. It’s rashes that seemed to be going down that got, for some reason, inflamed and weepy, and herpeticum-like pimples popping up along my neck (right side) and around my right eye. Currently in the thick of it. tried for like past two days taking the Wisp herbal prevention supplement (it has astragalus, echinacea and andrographis), but I guess it didn’t help, so started taking the Vacyclovir today, and did not have much appetite. feeling sick from either looking at it or really am sick or like a combination. face looks so bad- almost as bad as when it was full blown, but it’s not exactly full blown yet. But it is spreading, which is why I started the prescription meds. Rested as long as I wanted, until noon today.
Even without baby (parents kept him at their place most of the week), still having trouble sleeping: falling asleep takes a long time (an hour or two). And when I do sleep, I feel like it’s not deep, bc I’m still waking up throughout the night. At my appointment this past Tuesday, the doc said it could be the birth control still leaving my system- the hormone imbalances/rebalancing can disturb your sleep and circadian cycle. Hopefully it’s over soon, and I can sleep like normal, because I never had problems sleeping before all this (before Baby).
skin hurts, but it’s not the worst pain (full-blown eczema herpeticum is the worst pain). It’s like a low-level burning. and it feels hot- to the touch and also just sensation-wise, my face and neck. I wonder if it’s the prednisone that I took a month and a half ago still coming out of my body, or if this would’ve happened anyway, and is something else. but I have this feeling- I’m not sure if it’s true- that if I can just get through this, that it’s not a cycle anymore- that I’m going towards complete healing. I don’t know what makes me think this. Maybe it’s because I’m seeing this doctor and trying new things, or some other reason? Maybe because at the same time i have this horrific shit on my face, my hand and arm rashes seem to be going down, so maybe the inflammation is just like moving up, and out of my body and has to cross my face first before it leaves? it’s my hope at least.
and I guess this grain free, soy free, dairy, free, etc. diet doesn’t help much, because my skin got so bad while in the midst of it. I don’t understand how just a few days ago at my dr appt. I was feeling so good and hopeful with my skin, and now this. How it can change overnight/within a few days.
Marriage Journal 