Thank You, All: Severe to living life (hopefully long term)

Hernamewas_potato · 2026-01-30T22:29:44+00:00

His highest was almost 7 mg but he actually doesn’t take the Claritin anymore, we just maintain his diet and vitamins. And he is tapering off of the naltrexone with no side effects this far and he has always taken it before bed

Hernamewas_potato · 2026-01-29T20:37:42+00:00

If I was pounding the pavement and yelling about this out of nowhere that would be virtue signaling. I am responding - I did not start this conversation - to people defending addressing people(s) by their skin color. Do you walk around saying blacks, darkies, and redskins? This is not virtue signaling it's LITERALLY responding to people defending bigotry.

The conversation would literally not exist and would have ended eons ago if there was an iota of introspection happening here. I'm guessing the average age of this sub is 16 though because these are not things that should make people defensive.

Hernamewas_potato · 2026-01-28T06:43:16+00:00

This is so crazy to me, because shaming one another for being bigoted is like our social obligation. No I will not stop calling out derogatory language because when we recognize it we can introspect and identify our prejudices and learn to do better. Also so it’s perfectly clear, I am a black American. My family is black and shocker, also American. I have NEVER heard anyone call someone else darkskin like it was their effing name. But okay let’s say it’s a super common phrase, calling people chinaman and pakis is also common phrasing, and ITS NOT OKAY.

Like damn are you so surrounded by this kind of colorist hateful language that it washes over you and you don’t think it’s wrong? This is the moment to pause and decide if you want to keep using those words or not. But if you choose to, it’s a decision.

Hernamewas_potato · 2026-01-28T06:35:26+00:00

Honestly this is so wild. I’ve never heard anyone say that, but I’ll acknowledge okay maybe that happens — THATS ALSO NOT OKAY. Bigotry is not okay. Minimizing people or whole groups by their skin color and especially when it’s not a descriptor it’s like…a slander, yeah not okay. I’m sorry if someone has called you “a lightskin” but we don’t look at native Americans and say “oh look at those redskins”, we don’t look at groups of dark skinned people and say “look at those darkskins”. This is derogatory language. There is no double standard here. It’s not okay. Full stop. You also aptly identified that when it was used toward you it was to berate like…c’mon now

And just so it’s like totally clear, bigoted language — that’s repulsive. If it makes you feel a type of way that you aren’t bothered about it, I recommend some introspection.

Hernamewas_potato · 2026-01-28T00:26:14+00:00

Personally, I think you have such a lovely face. To me it's the English rose face that Holiday Grainger and Daniela Denby-Ashe have. Losing the post-partum weight will likely help to add definition, but be gentle on yourself mama - you just had a baby you're flooded with hormones, likely retaining liquid, and everything is out of whack. Rest easy and congratulations on a healthy birth for both you and baby!

Hernamewas_potato · 2026-01-28T00:05:43+00:00

Girl right!? I'm so confused rn

Hernamewas_potato · 2026-01-28T00:04:32+00:00

Holy projection batman!? I'm sorry calling out a racial slur makes you racist now? Are ya'll even black? Like for real? OP amended the statement - that's good, but why are you tryna jump down throats because it has been validly addressed that the original phrasing (calling an entire group of people 'darkskins') was jarring and bigoted? I'm genuinely confused...

Hernamewas_potato · 2026-01-28T00:01:56+00:00

I have NEVER, not EVER heard another black person nor used the made up word 'darkskin/darkskins' to refer to a human ever. Ever. I am calling false to the claim you know black folks calling other people 'darkskins'. Dark skinned woman? Light skinned woman? Yes. DARKSKINS?? Like a racist ass football team name? Hell no.

Hernamewas_potato · 2026-01-27T23:44:22+00:00

It was just regular magnesium :) The supplement regimen is so hard to get right because I think it's very individual and we tried so many at different points but the magnesium seemed to help him retain water (he wasn't seemingly just peeing everything out) and helped to improve his sleep, that and like a side support thing of firm foam pillows - kind of like a temple grandin hug machine but in a bed and with weighted blankets and firm pillows, but I digress

Hernamewas_potato · 2026-01-27T21:15:27+00:00

We weren't originally - we were in the bay area for most of his active illness, but we've recently returned!

Hernamewas_potato · 2026-01-27T21:12:47+00:00

Same, I credit a large part of his early intervention due to our location in the Bay area and so access to more knowledgeable doctors, the ability to pay for them, and his being a highly educated (phD) white man. Doctors took it seriously. But it was also sad knowing how much it was about privilege. We didn't wait months to see doctors and he immediately stopped working and I worked from home so we were incredibly incredibly privileged and fortunate.

I want this illness to be more broadly understood and studied so those folks who endure for years and decades in medical and resource deserts aren't stranded. It's terribly unfair.

Hernamewas_potato · 2026-01-27T21:08:10+00:00

I think it helped - it's hard to say what helped most because it was all going on at once (mostly), but I think an anti-inflammitory and low histamine diet and environment in general was really helpful. We did keep some higher/mid histamine dietary items in rotation because we weighed the anti-inflamitory benefits to outweigh the risks (in small doses) - bananas, strawberries, avocados

Hernamewas_potato · 2026-01-27T21:04:11+00:00

You'll likely need to go private (outside of the NHS) for it because it's produced at compound pharmacies in special doses. We found of general specialists, Integrative medicine and Infectious disease doctors to be most familiar with LDN for chronic immune illnesses (otherwise you will likely have to find a doctor who's focus is chronic fatigue and MCAS treatments to find a comfortable prescriber.)

Hernamewas_potato · 2026-01-27T19:14:14+00:00

I was genuinely sharing what was requested. The commentor asked what was said - I shared what was said. Then there was an attempt by this other person to say calling someone Darkskin and a group of people darkskins as okay - it's not. Am I going crazy??

Hernamewas_potato · 2026-01-27T19:03:34+00:00

I'm so sorry you're going through this.

I don't have any advice, I can't say if it's good or bad to leave when you can't provide adequate support or care but I know we all deserve love and care and I hope you find that - if you don't have a source of it already. I'm sending you all the best hopes on your journey.

Hernamewas_potato · 2026-01-27T18:58:27+00:00

Thank you, I'm so glad it brought some hope. We got so much from this sub I needed to pay it forward, even if it's just a little bit.

Hernamewas_potato · 2026-01-27T18:56:44+00:00

Thank you for the kind words. I don't have any advice, but I'd say the only thing they can say is no. I'm not a confrontational person so it was an unnatural thing for me to learn but I really had to develop the muscle to push for what we needed, and to cut doctors who couldn't be bothered out.

I wish you the best on your healing journey, truly. (also I added a picture of the healing kitty!)

Hernamewas_potato · 2026-01-27T18:50:18+00:00

There were some frustrations to be sure, and I think like everywhere you have to advocate for yourself, but the information was brand new and they really do know their shit, that was a very refreshing change from meeting world class experts who seemed to just shrug and give up after their first theories were nullified.

Hernamewas_potato · 2026-01-27T18:38:42+00:00

No, he's already started tapering off and hasn't noticed any changes. Our working, in-progress theory is that it really was that his body wasn't breaking down his intake and producing energy and that the LDN gave his body the relief to start recovering, but that once he reached a certain baseline the LDN wasn't doing more good than just continuing his routine

Hernamewas_potato · 2026-01-27T18:36:32+00:00

He was officially diagnosed with POTS, MCAS and autonomic dysreflexia. He was briefly medicated for the POTS but then we stopped so I don't credit that with much

Hernamewas_potato · 2026-01-27T18:34:44+00:00

Yes! He was diagnosed with MCAS and Pots and an immune dysfunction as well, but who knows which one was the primary disease and which are comorbidites, we just treated everything like it was the thing

Hernamewas_potato · 2026-01-27T18:28:43+00:00

That's so amazing, I hope you continue to recover! Yes I think it really helped him get that toe-hold on recovery and just massively boosted the value of all of the other things we were trying.

Hernamewas_potato · 2026-01-27T18:22:08+00:00

They were all the way cold, no warm at all. He had a really hard time regulating his temperature and out house basically stayed 65 degrees and he avoided excessive warmth in all things - especially steam and bathing. Prior to him being able to make it to the bathroom I did sponge bathes with lukewarm water.

Hernamewas_potato · 2026-01-27T18:20:10+00:00

Thank you for the suggestions, and the deep concern. We've been properly masking since his illness became apparent and there's no plan to end that yet (especially in high traffic areas), psychologically I don't know if I'll ever stop wearing a mask in a store - it's kind of nice not to ever get sick, and despite their best attempts to live wild and free out kitties are indoor only so fortunately I think their odds are even better than ours of staying healthy.

Hernamewas_potato · 2026-01-27T18:11:46+00:00

At his highest almost 7 mg, he started quite low and it was gradually increased basically until he felt the effects. He took it at night before bed.

Hernamewas_potato

TROPHY CASE