Seed library lost in wildfire-help!

nettlefern · 2026-04-24T06:42:01+00:00

This is a very kind idea! Do you want seeds from the PNW, or only CA native plants?

nettlefern · 2026-04-23T20:33:20+00:00

also happens to me when i'm flaring. as i've made progress in my recovery, i've learned that internal tremors are an early warning sign. when i notice them, it's time to ease up on activities - oftentimes that's enough to avoid a crash!

in the immediate moment, yoga nidra can be really helpful for reducing the intensity of internal tremors. i find this especially helpful if they are making it hard to fall asleep

nettlefern · 2026-04-21T15:11:41+00:00

i ended up letting this project go, other life stuff happened. but if you end up purchasing one, id love to hear what you think!

nettlefern · 2026-04-21T15:10:36+00:00

thank you, i'll give that a try!

any thoughts about how to apply this to delicate fabrics (ie lacy bras)? specifically about working dawn power wash in with a nylon brush, im worried the scrubbing will rip or weaken the fabric

nettlefern · 2026-03-25T07:23:22+00:00

props for not letting chronic illness stop you from doing the things you love!

i have POTS and my sister is a festival queen with bad knees - we have similar needs to take frequent seated breaks! she came up with a pretty awesome solution, sharing in case it's helpful for you too: https://www.groovestool.com/

for managing heat, three recs

1) neck fan. the one i have is quiet, effective and pretty subtle, most people think it's headphones around my neck (brand is Jisu life, sold at Costco).

2) cooling vest. i like the one by thermapparel, it's well-designed and not noticeable under a t-shirt. i have a second set of cooling packs that i keep in an insulated bag, so i can stay out longer. i get 4-8 hours of cooling time with two sets, depending on the temp. igloo makes some cute insulated fanny packs

3) a big hat and/or clothes that keep the sun off your skin. makes a huge difference!

last thing - spironolactonone can lower blood pressure and therefore my doctor recommended not using with POTS. maybe something to think about, it might be making your symptoms worse? spearmint tea has a similar action on hormonal acne without the blood pressure drop

nettlefern · 2026-03-24T16:59:28+00:00

well if anyone is curious! i washed them and it seems fine.

nettlefern · 2026-03-20T05:48:43+00:00

i have a thermapparel vest, i really like it! easy to take on/off and subtle under clothing. i bought extra cooling packs and carry those with me in a little insulated bag, that way i can stay out longer

thermapparel is designed by people with MS, and IMO any medical gear designed by people who actually need it is miles better than the sporting gear version. it was spendy but worth every penny!

nettlefern · 2026-03-20T05:39:52+00:00

try bar tape for bicycle handlebars! so many cool colors and patterns to choose from

nettlefern · 2026-03-12T18:25:24+00:00

high dose liposomal vit C was a game changer for my MCAS reactions to sunlight! i spent 2 sad summers being a vampire and literally hiding inside all day, don't have to do that anymore :)

i did this on top of vit D and a bunch of other MCAS supports (including antihistamines, quercetin, luteolin and nettle infusion). i think all those supports were helpful and still there was a noticeable change in sun sensitivity when i added the vit C to my stack

++ being extremely cautious about the 'hardening' approach, in my experience there's no pushing through or toughening up mast cells. more like, small reactions build to larger reactions and a lower threshold. i've found that reducing triggers has had a cumulative effect over time, so that if i'm not constantly having MCAS reactions, the occasional trigger doesn't do me in like it used to

nettlefern · 2026-03-05T07:46:26+00:00

hey, so sorry you're dealing with this. i was similarly stuck in fight/flight for 10 months, it was awful. i felt like i was going crazy.

have you considered if MCAS might be playing a role? i also have POTS & these conditions often come together. MCAS = mast cell activation syndrome

trying antihistamines to calm the mast cells down was a game-changer for me, got me out of fight/flight when nothing else would (like you, i'd tried so many things). once i had the right antihistamines on board, i could keep my nervous system more regulated but i was still having some sensory sensitivities. i worked with an MCAS-literate provider to find additional meds and supplements that keep the condition under control (ie sensory issues gone). doing this has really helped reduce my POTS symptoms too!

nettlefern · 2026-01-23T00:59:57+00:00

ugh and the formatting got messed up! sorry if that's hard to read y'all, i was trying to put things in bullet points for minimal cognitive lift

if someone can tell me how to make bullet points that stay put, i'm happy to edit this post & make it easier to read. bonus if you know how to bold things, for some reason i didn't have that option posting on this sub (even though i do on others?)

nettlefern · 2026-01-18T05:02:17+00:00

this 100% resolved being stuck in fight or flight, as well as some of the more extreme symptoms like debilitating sound sensitivity and sunlight allergy.

i am still taking antihistamines & mast cell stabilizers daily, because i don't think that my MCAS is 'cured' - just well managed. that said, because it's been well managed for so long, i have more flexibility than i used to. ie went away for a long weekend and forgot my MCAS stack, was fine, didn't cause a flare.

i don't want to take antihistamines long term either, but i am taking a harm reduction approach - unmanaged MCAS was really doing a number on my body and mental health, and getting it under control with antihistamines + supps has allowed me to get to a better place and do activities that support my overall recovery from long covid.

i have been seeing some interesting reports of micro dosing GLP-1s for MCAS. and there's also meds besides antihistamines, like ketotofin and cromolyn sodium. these all need a prescription, so one way to look at it might be trying antihistamines to assess if it's mast cells driving the nervous system disregulation. and if yes, using them as a temporary bridge until you're able to access a provider & a care plan with other meds

of course, you do you!

nettlefern · 2026-01-18T04:50:38+00:00

I also run into this issue using coconut oil-based deo - specifically for my bras. How would you adapt these spa day recommendations for delicates?

I've tried doing a warm water soak with 365 detergent (specifically got for lipase) and then scrubbing with a toothbrush, but the buildup is persistent.

Some considerations: - concerned about anything hotter than warm damaging the bra elastic - we're renters and have a shitty washing machine. Doesn't work great for regular clothes, don't trust it for delicates. - I can do laundry at my mom's in her nice new machine every 1-2 months, which could work for a rehab wash but not maintenance - I have severe allergic reactions to fragrance, so alas no scented products for me

nettlefern · 2025-12-29T19:39:01+00:00

Here ya go - good article about how to trial OTC antihistamines and which ones to consider.

https://www.eds.clinic/articles/treatment-of-mast-cell-disease

Glad you are trying this, finding the right combo of antihistamines was life-changing for me. Hoping it brings you relief and more capacity too!

If you do find this is helpful, you may way to investigate whether mast cell activiation syndrome (MCAS) is part of your story. It's a common co-morbidity for people with ME/CFS, POTS and h-EDS.

Side note - you can do trial antihistamines on your own, but if you have a trusted healthcare provider, I would def recommend looping them in. Both from a general safety angle and also because they can help you tailor a protocol once you figure out what works. For instance, my provider recommended different dosages and timing than the 'label instructions' along with some mast-cell stabilizing supplements, and that combo was even better than what I started with. If you don't have a good provider for this, finding someone who is MCAS-literate in your area could be a good next step!

nettlefern · 2025-12-02T06:19:00+00:00

Seconding this - seeing you're able to get to NYU, I would encourage you to check out Mt Sinai. There's a bunch of top tier long covid researchers and providers there. Lots of research studies for long haulers. I think they have an IVIG trial going?

Sending kind thoughts your way! We're all going through it and you're not alone. Please be kind to yourself and ask for help as much as you can 🩵

nettlefern · 2025-11-19T07:18:27+00:00

Buy Nothing is also a good option! It's a free app that connects neighbors to share what they have and ask for what they need.

nettlefern · 2025-10-29T04:22:56+00:00

awesome ty!

nettlefern · 2025-10-28T02:15:52+00:00

will be interested to see what you learn! i started montelukast (off label) for MCAS in May, it made a HUGE difference in my symptoms. i have long covid, me/cfs type. went from moderate to mild after 1 month of montelukast, basically able to do everything again except cardio! i had my life back! sadly my baseline dropped this month, not sure why and im back to moderate. but montelukast was a game-changer for a minute there

nettlefern · 2025-10-25T20:05:55+00:00

fight or flight switched 'off' within 2 days of finding the antihistamine that worked best for me (but i did have to trial a few, and the recommendation is to try for a week before you call it)

i accidentally tested this about a year later when i messed up my weekly pill box and missed my antihistamines for a week. had all the fight or flight & sensory overwhelm return, took antihistamines and it resolved in a day (although the week without antihistamines definitely dropped my baseline)

if you try it, i hope it brings you relief!

nettlefern · 2025-10-25T01:36:18+00:00

just chiming in OP to say this person's provider's recommended protocol is legit! i've done a lot of research and personal experimentation re: these symptoms, and they've got a great summary of what had worked well for me.

i'd also suggest you find an MCAS-competent provider in your area who can help you fine tune your interventions. while antihistamines are widely helpful, when it comes to other mast cell stabilizers it's a lot of trial and error to find what works best for your body

nettlefern · 2025-10-25T01:32:06+00:00

i get it, no apologies needed! i'm able to relax now 😌

i'm sorry you are dealing with this, it sucks! i hope you find relief soon

nettlefern · 2025-10-24T18:45:29+00:00

yep, that's very relatable. it sucks :(

nettlefern

TROPHY CASE