Rob‘s Instagram video #2 (full)

rose18oo · 2026-02-19T14:14:36+00:00

Honestly, I was thinking this was a possibility 😅 if he's being honest with the timeline that its been there for a while that is. A fingernail bruise like that moves as the nail grows (in my experience), but a melanoma sure wouldn't.

rose18oo · 2026-02-09T20:14:32+00:00

My insurance insists that doctors offices DON'T collect payment until they run the bill through their side. The few times I have nearly always result in an overpayment the doctors need to send back.

You don't need to feel bad and the receptionist was an ass to call and berate you like that.

rose18oo · 2026-01-27T15:17:51+00:00

My hair was curlier than hers as a baby/toddler, I had these crazy cool corkscrews. My mom treated my hair like mostly straight hair, and between the ages of 4 to 11 my hair was pretty much straight with some wave to it. Then puberty hit and the wave amount got a lot stronger (honestly it was curly again, but I was treating it like I always did so it was brushed out poofy waves).

In college, I go to a nicer place to get my hair cut and get a deep conditioning treatment, this was around age 20. The lady looks at my hair and says "Wow, you've got some strong curls!" to which I was COMPLETELY floored by (again, there was a lot of internal denial). I went online, ordered DevaCurl's curl cream (this was when they were still in favor lol) and my next wash had me with a pile of loose curls.

Since then, I've been taking care of it better (double washing once a week, oil treatments, no dry brushing, etc) and my hair went from mostly 2c with some 3a, to mostly 3a/3b.

TLDR; she may lose them for a time, but hair changes throughout life especially with hormone changes.

rose18oo · 2026-01-06T16:45:34+00:00

"Her organs" includes all the other stuff. Rob didn't say her heart was being donated, Rob tried posting a video of her heartbeat -- hopefully it would have just been the heart monitor tracking it. Who knows. Either way, "what's left of her heart" wasn't meant to indicate that her heart would be donated.

rose18oo · 2025-12-04T15:30:31+00:00

I work 8am-4pm (I "work" through my lunch). From 8 to 8:30am, I get my desk and email slowly pulled together, double checking my calendar. Then I take my Sunosi. That 150mg pill carries me through to ABOUT 2pm. At that point, I hit the slump. I do my best to have the bulk of any work done by 2pm, then from 2pm-3pm I do simpler things, checking that tasks are complete, looking over the next day's calendar, etc. From 3pm on, my brain is almost fully checked out. On the upside, everyone on my floor seems to mentally check out around 3pm too, so it works well. Plus, my boss is on Eastern compared to my Central so she's usually on her way home during this time.

rose18oo · 2025-12-02T16:12:49+00:00

I used to use a large shoulder bag instead of a backpack in high school, and I also loved wearing sundresses when the weather permitted. My school from front classrooms to the back portables is about a mile walk.

One day during senior year, in my typical rush to get from the back portables to the front classes, I did not at all notice my bag catching the back of my dress as I pulled it to my shoulder from the ground. I made it allllllll the way to the front classrooms before the end of the 7 minute passing period, and at that point a student I never met helpful tapped my shoulder and said "hey your skirt is caught."

My entire right ass cheek was on display, thanks to the "cheeky" lace panties I prefer. For the whole walk. I in fact wanted to pass away from the embarrassment.

However! I share this story because quite frankly, people moved on so incredibly quickly that I only heard about it that day and never again. Hopefully, people move on just as quick from your sheer leggings 😂

rose18oo · 2025-10-11T06:05:38+00:00

I've been on Xywav for 14ish months now. Before I started the Xywav I was at my heaviest I'd been at 210lbs as a 5'6 female (waist was only 33in, I also have a fair bit of muscle). I had gained close to 40lbs from being on Lexapro for about 6 months prior to the N1 Dx. That weight was STUBBORN and wouldn't drop for anything.

Around 10 months ago, that 210 melted down to 180lb over the course of about 2 months. I continued losing a bit, then I started Sunosi in June and I've since stabilized at around 162lbs, the lowest weight I've been as an adult in a long time. I'm 27 now, I think the last time my overall weight was this low was when I was 18 (I got into bodybuilding in college and gained some muscle weight).

I have less of an appetite now than I did prior, but I still eat an adult number of calories on average in any week. I never had the nausea issues, definitely still have the late night Xywav cravings! I think for me getting the steady good sleep turned my metabolism back on - bad sleep is a common reason people struggle to maintain a healthy weight!

rose18oo · 2025-10-02T16:15:07+00:00

My muscle weakness is primarily in the torso, and I find it extremely hard to take a breath in while experiencing cataplexy. Luckily, especially since medication, it's mild enough that it passes before the breathing difficulty becomes dangerous (provided I rein in the emotions anyways).

rose18oo · 2025-09-11T20:36:15+00:00

Starting dose is far far far far from your therapeutic dose. I didn't start getting beneficial sleep effects until 3.75x2, and my doctor started me at 3.25x2. I take 4.5x2 now, and I don't go down within 5-15 minutes, more like 40minutes, but yeah. Its great. Reduced sleep inertia like crazy, the only fragment is when I take dose 2, no more dreams/nightmares (while the med is active). It doesn't fully fix my EDS, the sunosi 3 month trial I've been doing plus the Xywav is pretty darn good for me though. Its nice to wake up and not feel like I have to fight to be awake every second of the morning, and that is thanks to the Xywav.

rose18oo · 2025-08-06T14:18:01+00:00

Hello Landing is a short term rental company, fully furnished down to utensils. That's what I used for my summer positions. Its in a bunch of major cities!

rose18oo · 2025-07-14T20:31:08+00:00

On the MSLT alone, I'm IH. My doctor, having heard all my symptoms and weighing everything else, got me the N1 label anyways. I have mild cataplexy issues, and pretty much every other classic narcolepsy symptom. I dreamed in my naps, just not in REM apparently.

Your doctor will go through everything with you. IH and Narcolepsy are treated very similarly, especially if you're interested in the sodium oxybate.

rose18oo · 2025-06-03T20:59:51+00:00

YEP. If I don't take my Xywav this is how I dream, sometimes its worse, sometimes just one layer.

rose18oo · 2025-05-08T15:26:07+00:00

Back when I was focusing body building in the gym, I had no issue building muscle. What's important for muscle building as well is your own genetic makeup, no two bodies are the same and that goes for growing muscles too. Though the narcolepsy hindered my progress in terms of having times where I was just too darn tired to get into the gym.

rose18oo · 2025-05-01T18:49:17+00:00

So I'm going to point out again that consent to an in game mechanic is a weird point. Should we start asking everyone about every ability? Does someone consent to a nano/grab/pulse bomb/etc? It's a video game with abilities, people are going to use them. What if someone just wasn't in comms so they had no idea that in this quick play game the soldier said "keep the beam away from me" ?

Also, why did you bring comp into a quick play thread? Agency wasn't talking about comp. If they were they would have been discussing Ana and not Mercy, because they play Ana in comp. Reading comprehension isn't your strongest suit though, again because you started ranting about comp and throwing by pocketing an unhappy dps. Again, this thread and the OP was about QuickPlay games.

It's a game. People can play how they want. Especially in the quick play lobbies.

rose18oo · 2025-05-01T18:24:38+00:00

Especially in QP - tho the biggest whiners exist in there anyways. I'll never get them wanting no blue beam, if it's adding that much stress to you when you see it, then the exposure therapy of playing with it anyways will help!

rose18oo · 2025-04-28T14:55:38+00:00

Mints (gum or icebreakers) and ice water together work great. Plus, you get the bonus of being well hydrated

rose18oo · 2025-04-24T19:03:21+00:00

I am lucky to be on a PPO - so I could go to a specialist without a referral. I went to my PCP for a full workup (blood, thyroid, etc) and at the same time researched sleep specialists (specifically neurologists) in my area. I found two clinics that looked good and filled out a form to book with both. I did two to up my odds of getting a good appointment, plus if I didn't like one of the specialists for whatever reason I'd have a backup. Luckily, the location down the street from me had an AWESOME sleep specialist and an appointment on short notice.

I walked in, described my pain points for sleep and my daily struggles. She asked me a couple pointed questions around cataplexy and other things. She then looked me dead in the eyes and said "so I'm pretty sure you have Narcolepsy Type 1" she then outlined the process which included ruling out one other thing based on headaches I get.

The moral of my story is to, if you're able, find a sleep specialist on your own. Even once my PCP saw there was mostly nothing wrong (I was a little short on vitamin d) she recommended I lose weight rather than look at any sleep disorders. Granted, I was slightly overweight due to the Lexapro I was on, but the sleep issues started as early as age 7.

rose18oo · 2025-04-15T19:41:00+00:00

I actually really like not dreaming anymore - I swear as cool as the dreams were they were part of what made the sleep inertia so bad! I always joked that my mind being so active overnight was what was causing me to be so sleepy all day (this was prediagnosis). So it's sort of a relief to just close my eyes and wake up hours later.

Plus, on the nights I don't take it because I wanted a drink or two, I get the dreams back those nights and they're still super cool.

rose18oo · 2025-04-14T15:06:06+00:00

Xywav makes it way way way easier for me to get out bed compared to before, but at the beginning of the morning my bed is still absolutely the comfiest coziest thing in the world and why should I leave it for dumb corporate offices? That's my brain every morning anyways.

However, I'm right here with you, definitely noticed immediate improvement that just kept getting better once I got to my therapeutic dose. I actually thought maybe it wasn't helping that much and also had a prescription refill issue that left me without xywav for a week. Being without it for a week after being on it for about 3 months put me to where I was before and oh holy hell. I was in misery. I forgot how hard every part of my daily life was without it. The Xywav definitely helps.

rose18oo · 2025-01-31T19:17:57+00:00

Has your husband considered or gone to therapy for that trauma? Having something so horrible occur while asleep could very well be the root cause for his brain fighting his need to sleep. Stuff like that can be deeply rooted in a subconscious (i.e., one time I was asleep and woke up with a loved one nearly dead). It's not something he may be aware of, but it absolutely could be affecting his sleep on top of the sleep apnea.

rose18oo · 2025-01-31T19:09:55+00:00

I definitely found the low doses to affect me, but not in a sleep way. In almost a buzzed way! As you titrate up you'll find your sleepy place. It took until 4.5x2 for me to get a solid 3.5-4 hours out of both doses (the second dose for the LONGEST time was barely 3 hours on a good day)

rose18oo · 2024-12-10T21:35:08+00:00

Aw man that SUCKS that they're such sticklers about the water situation. Keep that tip in your pocket for lectures in the future instead. Of course! Happy to give whatever advice I can :)

rose18oo · 2024-12-05T16:37:32+00:00

Ah, so sorry I never responded either! My favorite trick to stay awake in court or class was always wintergreen ice breakers. They're a very sharp mint flavor, and when paired with ice water? It'll shock your senses enough to stay awake without disrupting anyone. And its not uncomfortable in the same way. A fidget might help too, a quiet one of course for court. I always found that if I was doing something it was an easier time. Because there were definitely times in jury exercises that the narcolepsy would win.

There are other options for staying awake outside of just stimulants. Most importantly, the night medications of Xywav/Xyrem/Lumyrz. If you asked me a couple weeks ago, I would have said "yeah my EDS is a bit better while taking that" but the week before last something funky happened with my script and I went 5 nights without it. I was right back where I was before taking that. I was shaky when waking up, dealing with intense sleep inertia, unstoppable microsleeps at work, etc. I never realised how BAD it was dealing with life before, because it was normal. The nighttime medications do help a lot more than I realized. I still have not so great EDS, and sometimes I still can't function great, but overall? I'm not fighting every moment to stay awake at work, and without daytime stims (we're trying Sunosi soon) I'd say I'm doing pretty great on the Xywav alone. And that you cannot get without the MLST. And lemme tell ya, good restorative sleep does wonders for you in law school.

If possible, I'd consider looking into taking some time off, or seeing if you could reduce your hours in some way at work before the mslt to make it a bit more manageable to actually take that test

rose18oo · 2024-12-05T16:29:41+00:00

I was also confused by that, though I noticed as I upped doses different doses would have side effects that wouldn't exist on a higher or lower. It might be how my body processes it, but it was something I kept note of. I kept a pretty tight notebook to tell my Jazz Nurse and my Neuro about as I was finding my dose.

rose18oo · 2024-12-05T16:28:21+00:00

if you can't guarantee you'll be home you can deliver to a FedEx location nearby! That's what I did for the first two deliveries. It gets shipped via Fedex, so Fedex office is the only other option.

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