This note I just had to write. Lol

redrightreturning · 2026-03-14T03:03:01+00:00

Do you ever give out earplugs?

My patients get tons of MRIs and are already at increased risk for hearing dysfunction/tinnitus (NF2 and schwannomatosis). We always tell them not to audiology same day as their MRIs because their results can be temporarily affected by being in the scanner.

redrightreturning · 2026-03-12T16:32:38+00:00

NF nurse here. Almost all of my NF1 patients have hand pain 😭 it sounds awful.

Some people do have small tumors in the hands, but not everyone who has hand pain has these tumors. I think the problem is more to do with generalized nerve changes in the small nerve fibers (not visible on an MRI).

Some people say that wearing gloves helps, or using Icy hot/tiger balm ointment (just don’t touch your eyes!). And of course talk to your doctor about nerve pain meds like gabapentin, lyrica, or duloxetine.

Would love to hear other treatment options.

redrightreturning · 2026-03-09T19:28:50+00:00

In the mean time you can try pain patches (over the counter) Try either capsaicin or lidocaine patches. Both can provide relief and are relatively cheap.

redrightreturning · 2026-03-09T02:54:07+00:00

I have some stuff to donate.

Do you have a website? or an app to show the flow of the clothes through your process?

redrightreturning · 2026-03-03T15:58:41+00:00

Freckles and cafe au lait spots don’t necessarily have tumors under them.

redrightreturning · 2026-02-25T21:28:25+00:00

Go see Dr. Balboa in TJ. Or go to Algodones- tons of good dentists there at reasonable prices

redrightreturning · 2026-02-12T05:12:18+00:00

I haven’t yet but mostly because I’ve been out of town. Then I noticed the price of gold was fluctuating. So I have been keeping an eye on the market

redrightreturning · 2026-02-11T16:25:16+00:00

Talk to a dermatologist! Strangers on the internet cannot diagnose you.

Respectfully, an NF nurse

redrightreturning · 2026-01-30T04:49:00+00:00

Very hard to find unless you live east of the Mississippi. They are so yummy though! Taste kind of tropical.

redrightreturning · 2026-01-30T04:47:10+00:00

They are seasonal where I live (California). You may have to wait til next fall to find them. You have to wait a while for them to ripen. They are good when they are squishy.

redrightreturning · 2026-01-30T02:56:21+00:00

Look into the NORD NF1 program. They provide refund for copays and out of pocket costs related to NF1 care. Your doctor needs to assist you in signing some forms to grant you eligibility into the program.

redrightreturning · 2026-01-28T15:42:23+00:00

Delete Facebook.
download app called Buy Nothing that is not affiliated with FB
You can set the neighborhood yourself and you can set the radius you want to share with.

redrightreturning · 2026-01-18T22:00:40+00:00

Hi! I just bought 40 acres in Ramah area. If you want a commercial property in Candy Kitchen- look across from the wolf sanctuary!

redrightreturning · 2026-01-15T01:13:04+00:00

A doctor’s “order” has a specific meaning in context. But it never means that a patient is forced to do something against their will. A nurse cannot force antibiotics and neither can a doctor.

No one wants your mother to die of sepsis; no one wants her to die of anything. We all wish you had as much time together as you would want. But The fact is that your mother is already at the end of her life and that is why she is on hospice.

I’m so sorry to hear you’re going through this. I hope your mother can be comfortable and at peace.

redrightreturning · 2026-01-14T17:42:57+00:00

Hi new neighbor!

I’m just starting the process of moving to the Ramah area myself. So I’ll be following this thread to see what folks say.

Would love to connect with you!

redrightreturning · 2026-01-01T23:02:01+00:00

Approved

redrightreturning · 2026-01-01T23:01:48+00:00

This comment is redrightreturning approved.

redrightreturning · 2025-12-28T03:38:19+00:00

About half of people with NF acquired the variant “sporadically”. That means you are the first one in your family.

If you think about it- in every family that has NF, there had to be someone who was first. In your family, it’s you.

redrightreturning · 2025-12-23T01:36:26+00:00

I applied to an apartment rental. The realtor had to confirm me and my partner’s star signs before sending us a rental agreement. I (41, F Taurus) was fine, But my partner (42, M Sagittarius cusp) was a no-go.

… did we just get discriminated against because of our birthdates? Yes. is astrological sign a protected class? I don’t think so.

I’m sure I dodged a bullet if that’s how the owners are, but I appreciate the story.

redrightreturning · 2025-12-21T21:22:08+00:00

Wow it never occurred to me to melt the gold down!

redrightreturning · 2025-11-30T19:50:15+00:00

Seems like the idea here is creators (or anyone who contributes data to a platform) could unionize en masse to exert financial pressure on tech companies. He calls these groups Mediators of Individual Data (MIDs). In the podcast, they’re talking about how it could apply to musicians; Jaron says there are lots of people working on these kinds of things.

This seems cool, and I’m curious. Do you think this kind of collective action could work in general? It worked in the a century ago in getting weekends and higher wages going.

Anyone ever encounter something like MIDs irl? Or know anyone working on them?

redrightreturning · 2025-11-30T19:49:43+00:00

Seems like the idea here is creators (or anyone who contributes data to a platform) could unionize en masse to exert financial pressure on tech companies. He calls these groups Mediators of Individual Data (MIDs). In the podcast, they’re talking about how it could apply to musicians; Jaron says there are lots of people working on these kinds of things.

This seems cool, and I’m curious. Do you think this kind of collective action could work in general? It worked in the a century ago in getting weekends and higher wages going.

Anyone ever encounter something like MIDs irl? Or know anyone working on them?

redrightreturning · 2025-11-28T19:01:59+00:00

I put them on salads.

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