“vacation”

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.