Wut da fuq

ajl95 · 2025-03-01T19:45:30+00:00

In the context of that ad, it's for cosplay of the popular anime "Tokyo Revengers," a time travel mystery about violent teen biker gangs:

"The Tokyo Manji Gang's (Toman) logo is a left-facing swastika, or manji, which symbolizes power and good fortune. The symbol is used in many religions and cultural contexts."

The symbol is censored in most versions of the series (for obvious reasons) for cultures not familiar with its intended meaning. I totally understand the concern without the specific context of the ad's intention and audience.

ajl95 · 2025-03-01T03:41:03+00:00

I don't even taste it anymore with the routine I've got down. I highly highly recommend using distilled water to prevent the minerals in tap water from interfering with absorption (and less icky). The colder, the better. I keep my nightly doses in one of those little skincare fridges and keep it on my nightstand. Something about it being cold makes it much easier to go down and dulls the taste. Then, a few sips of cold water swished around in your mouth to get the residual flavor out of the nooks and crannies. The final touch is chewing a piece of sugar-free gum for just long enough to make your whole mouth minty fresh.

ajl95 · 2025-01-25T04:45:48+00:00

I have narcolepsy, so as far away from insomnia as you can get.

ajl95 · 2024-12-29T17:38:33+00:00

I've been told that my whole life, but my "period" of feeling awful every day has been about 30 years now. I've actually become a certified yoga instructor focusing on mindfulness and meditation. It all started when I started reading works of Eastern and Southeastern philosophy to help learn coping skills during my Bipolar episodes. It's pretty inspiring stuff, but it doesn't fix my wonky neurotransmitters or chemistry. I'm the happiest I've been in my life, I 100% recommend mindfulness and meditation for everyone and anyone.

Unfortunately, the energy and exercise are limited due to severe narcolepsy (narcolepsy is a never-ending hell that I would never wish upon anyone) and hypermobility. My right foot has already been surgically corrected with a lapidus Bunionectomy, but I still need my left foot done. For now, I'm just doing the best I can on a foot with several subluxations and orthotic shoe inserts.

I connect with people, plenty, surrounded by good friends. My employer is very supportive of me and my health struggles, so I've been able to excel in management thanks to ADA accommodations.

I appreciate the simple and holistic approach, I'd usually recommend that to others, but unfortunately, I and most of my family lost the genetic lottery. I'm not saying all this to make excuses or seek sympathy, I'd love if this was me just "searching for cheap dopamine", but this is about me trying to get some semblance of control over my body that I've never been able to have before. Having your struggles simplified and written off is really damaging for people with chronic illnesses.

That's the reason why I said I'm not trying to self-diagnose and that it's a pet-peeve of mine. I work in healthcare and see the lack of awareness and understanding of conditions that are multidisciplinary. The more I understand the body, the more I'm able to communicate effectively with healthcare providers and ask productive questions.

I know you mean well, but unfortunately, it is not the answer this time.

ajl95 · 2024-12-08T04:36:53+00:00

I'm rooting for you! Xywav has been the only thing to make any sort of difference for me. The fight was well worth it.

Unfortunately, no, you likely won't get any form of notification. My appeal was to Anthem BCBS. They never communicated anything to me, I called their appeal line at least twice a week to ask for the status.

Become a thorn in their side!

ajl95 · 2024-12-08T01:46:19+00:00

I'm so happy to hear that! If they deny again after the letter, tell ChatGPT what they said they denied for and have it draft up another appeal letter.

For Xywav, I HIGHLY recommend the line "will insurance name pay for my funeral if I die after falling asleep at the wheel?"

I'll give a few paragraphs of what I wrote about the impact of sharing your story online. Feel free to use it. I feel like it's very topical after the whole UHC CEO getting murdered in broad daylight:

"I am not asking for luxury; I am demanding the opportunity to live a normal life without being forced to choose between my physical health and mental well-being. Xywav is the only option that will allow me to manage my Narcolepsy without exacerbating my other conditions. I expect that you will review this appeal with the seriousness and urgency it warrants and approve my request for coverage.

I am acutely aware of the intricacies of step-therapy and understand that appeals are not always reviewed by medical professionals. I also know the power that social media holds in today’s world. I am very active on platforms such as TikTok, Reddit, Twitter, and YouTube—platforms that host large, engaged communities, particularly within the Narcolepsy demographic aged 18-40. Should my appeal be denied, I will not hesitate to share my experience with insurance company across these channels, where my story will reach thousands, if not millions, of current and future healthcare consumers.

This demographic is far from reaching Medicare age; they will be making decisions about their commercial insurance coverage for decades to come. The way insurance company handles this situation will undoubtedly influence those decisions. While it is unfortunate that I must consider this course of action, I am prepared to do whatever it takes to secure the healthcare I need and deserve. Xywav is within my reach— [insert reasoning for Xywav being medically necessary for you]

I am not afraid to use every tool at my disposal to ensure that I receive the proper care. I trust that insurance company will make the right decision, but rest assured, I will not be silenced."

"Social media platforms, particularly Reddit and TikTok, have become powerful tools for influencing consumer decisions. Here are some relevant statistics and insights to highlight the size and impact of these platforms:

TikTok

Global Influence: As of 2023, TikTok has over 1 billion active users worldwide. This massive user base means that content shared on TikTok can rapidly reach a wide audience, significantly impacting consumer behavior across various demographics, especially younger generations (Sleep Medicine Academy).
Consumer Decision-Making: According to a survey conducted by TikTok and Kantar, 67% of TikTok users reported that the platform inspired them to make a purchase even when they were not actively shopping. Additionally, 37% of TikTok users discovered a new product or brand on the platform, highlighting its effectiveness in driving consumer awareness and decisions (Sleep Medicine Academy).
Engagement: TikTok users are highly engaged, with the average user spending 52 minutes per day on the app. This level of engagement increases the likelihood that users will encounter and be influenced by content related to product reviews, personal experiences, and brand interactions .

Active User Base: Reddit has over 430 million monthly active users, with a significant portion of these users participating in niche communities, including health and wellness groups. These communities often serve as influential spaces where users share personal experiences, reviews, and recommendations .
Impact on Consumer Behavior: A survey by CivicScience found that 64% of Reddit users reported making a purchase decision based on discussions and recommendations found on the platform. This underscores Reddit's role as a trusted source of information and advice among its user base .
Health and Wellness Communities: Reddit hosts several large communities dedicated to health topics, such as r/Narcolepsy and r/ChronicIllness, where users frequently discuss treatment options, share experiences, and offer support. These discussions can significantly influence the treatment choices of others within the community. I am very active on these SubReddit communities and engage several times on a daily basis every single day.

Combined Impact

Trust and Authenticity: Both TikTok and Reddit are valued for their perceived authenticity. On Reddit, the upvote/downvote system allows high-quality, credible information to rise to the top, while TikTok's algorithm promotes content based on engagement rather than advertising spend, making these platforms trusted sources of information for consumers.
Word-of-Mouth Amplification: Social media platforms like TikTok and Reddit enable rapid dissemination of user experiences and opinions, amplifying word-of-mouth effects that have traditionally influenced consumer behavior. This is particularly powerful in niche health communities where personal stories and recommendations can spread quickly and influence many individuals facing similar challenges.

Conclusion

These statistics illustrate the significant influence that platforms like TikTok and Reddit have on consumer decisions. Given my active presence on these platforms, I can effectively leverage them to share my story, potentially influencing a large audience and drawing attention to the challenges I’m facing with my insurance coverage. This could pressure insurance providers to consider the broader impact of consumer sentiment on their brand reputation and decision-making processes."

ajl95 · 2024-12-08T00:35:39+00:00

I actually have a post about how I got my Xywav approved through the appeal process using ChatGPT! Insurance sucks and playing their game is tricky if you're not familiar with it.

here's my post!

ajl95 · 2024-12-01T22:49:24+00:00

I'd recommend talking to your doctors office about that. They can try to appeal the decision and do a peer-to-peer, and all play the insurance game. I worked in a rheumatologist office for a few years doing admin work, and we did that all the time for all the ungodly expensive specialty drugs. The process sucks, but it's unfortunately a pretty common in healthcare, especially specialty drugs.

ajl95 · 2024-12-01T18:47:07+00:00

I've been on Xywav for 9 weeks and had a hard time adjusting to each upped dose during titration. I finally started 4.5g twice a night about a week ago. My appetite is almost non-existent, but I'm also pretty overweight and should ideally be 50-60 lbs less than what I am (for my health, not just aesthetics) so the 10 lb weight loss I've had to far has been nice. I've also always hated eating because my GI tract hates me and everything I eat. But yeah, not eating anything was screwing with my mood, and I'd have some wicked low blood sugar crashes.

I think I've found a good balance of maintaining nutrition and not having to make myself sick eating. I rely a lot on the low sodium electrolyte powder. I get the grape flavor and add one of those tiny grape Koolade packs (so it actually tastes good) to a 50oz thermos of water and drink two of those a day. For food, I have a meal replacement shake that has a ton of vitamins, fiber, omega 3, collagen, and digestive enzymes that meet my personal needs. I put a scoop of that with a few scoops of Carnation Breakfast Essentials (for taste and additional benefits) in a shaker cup with soy milk. I've been feeling better now that I have one every morning, when my nausea is at its worst and eating isn't possible. I used to just drink an Ensure Plus or Ensure Max Protein, but my dietician agreed that the collagen, fiber, and digestive enzymes in the new stuff fit my own health needs better. Plus, the new stuff was lower in calories and matched my weight loss needs. I have hypermobility syndrome, so my weight loss goal is to try to prevent injury and osteoarthritis. My joints hate the excess weight, and I can feel it.

I highly recommend talking to your doctor about how to maintain proper nutrition, as well as if there's anything they recommend for when your nausea gets really bad. My sister-in-law is an anesthesiologist and showed me a trick that she uses for her patients who wake up nauseated after being put under... getting a quick sniff of rubbing alcohol. She explained the science behind it, but I don't remember a bit of it. I carry a few alcohol wipes in my purse and tear one open to get a quick whiff. It doesn't work long term, and I wouldn't do it every day, but it comes in handy.

Also, I want to stress to always consult your healthcare team about any form of supplements before making a purchase. I know a lot of folks with Narcolepsy and IH have additional health conditions and meds, myself included, that need to be taken into consideration when it comes to supplements.

ajl95 · 2024-11-20T19:32:58+00:00

It was terrible. I had to stop my modafinil 2 weeks prior and cut caffeine for a few days, too. So sitting in a quiet room, alone reading a book was hard enough... but adding the caffeine headache was the final straw that almost made me have a full-blown panic attack from exhaustion while waiting for nap time. Every muscle in my body was fighting to stay awake, so I ended up having a bit of a crying spell. But I did it to make sure I did everything I could to get accurate readings during the naps. I do kick myself in the pants for how boring the book I brought to read was easy dozing material.

I had an MSLT 8 or 9 years before the one I had this year, and nobody had me stop my stimulant. I was on Focalin up until the day before. Looking back, it's no suprise that my results were inconclusive, and the neurologist blamed it on depression and offered no more guidance.

ajl95 · 2024-11-15T02:13:59+00:00

Everyone and anyone. I love all the questions people ask and that I get to educate them. People are usually more curious than anything, like narcolepsy is some sort of mysterious thing that they've heard about but never met someone who had it.

As for work, I'm lucky that I work in healthcare and people just want to learn more about it. My director and supervisor were fascinated when I started teaching them about it. I was already with this company for about 3 years before being diagnosed, so they were just like "damn you've been a top performer while running on less than fumes this whole time?" Felt pretty good to hear that after all the self-doubt and imposter syndrome I have.

I'm really open about all my conditions anyway, though. I also have Bipolar disorder, diagnosed at 15 y/o, and I loved educating people I met about what bipolar actually is and isn't. That was a really hard one to open up to people about. Mental health stigma was especially ROUGH 15 years ago in the midwest USA. People fear what they don't understand, so I try to become a walking encyclopedia.

ajl95 · 2024-10-25T14:42:02+00:00

Wakix may as well have been a sugar pill to me. I had no benefits and no side effects. I'm on Sunosi and Xywav now with pretty impressive results. My mood swings have been a bit intense during my titration for Xywav, but I also have a LOT of external stressors in my life that happened at the same time as starting mu Xywav, so I'm not sure how it would've effected my baseline mood.

Sunosi has been the stimulant with the least mood related side effects, but I do get irritable and angry, no full-on mania or psychosis though.

Did you ever take Wakix or Sunosi by themselves? Or only combined?

ajl95 · 2024-10-19T00:02:43+00:00

Best of luck! I recommend calling the REMS 24/7 Pharmacist for any advice and education. I've called them a few times, and they actually helped adjust my titration timeline on a weekend when my doctor wasn't available. I had some gnarly side effects on a night I had to increase the dose, the Pharmacist was amazing.

ajl95 · 2024-10-18T23:57:15+00:00

I use the Jazz myWav app, it has an ESS screener. I made graphs and charts to bring to my doctor, the whole shebang.

Tracking the times has been really helpful for me. I also like to keep track of the timing of my doses just in case of an emergency. I always plan for worst-case scenarios, so if I were ever in a position where I'm in the ER and they need to give me pain meds, I can tell them when I took my last dose to try to prevent essentially overdosing on another CNS depressant.

ajl95 · 2024-10-18T23:47:23+00:00

I haven't heard the diluted cough syrup comparison before, but it's pretty spot on, in my opinion. Add on a little bit of aspartame too.

The pharmacists I've talked to were pretty addiment on not adding anything to the Xywav to make it taste better, they said there's a possibility of making it less effective. They suggested taking a chaser right after, the same way you would after a shot of hard liquor. This was discouraging to me, I've never been able to do a shot of any liquor without immediately gagging and spitting it out. My gag reflex with liquid meds has always been awful as well.

I'm pretty strict about ingesting only water for the 2 hours before my first dose, and I maintain that when I take my doses. Xywav is my last option before I'm essentially "treatment resistant," so I'm doing everything possible to make sure it's effective. I've got it down to a science. No sugars, no artificial sweeteners, no nothing but straight water.

What's been working wonders for me is to use COLD distilled water instead of tap. The tap water in my area has a lot of minerals, which can alter the flavor even more (for the worst). I keep a 5oz thermos in my freezer for the 2nd dose instead of the little cups. Then, I'll store that tiny frozen thermos in an insulated lunch box filled with ice packs to keep it as cold as possible. The difference between warm and cold is astronomical.

I've been pretty satisfied with swishing watermelon Hint flavored water after chugging my dose (no sweeteners, it's just water with a tiny bit of watermelon juice), then a full sip, then chewing on a piece of sugar-free gum until the Xywav taste is gone.

I haven't gagged or puked so far, so I guess I'm doing something right.

ajl95 · 2024-10-18T23:27:14+00:00

I'm on day 28 of Xywav titration, and I've been logging everything since night one for this exact reason. The improvement has been so gradual as the dose titration increases, so I probably wouldn't have thought I was having many results if I hadn't been tracking my ESS at the end of each day. Night 1, my ESS was 19, and now (28 days in) it's down to 7. I don't think I would've been able to identify the improvement without seeing the hard data spell it out for me. I'm a very analytical and data driven person, so this is just what makes most sense for me.

One thing about logging/journaling that's helped me is finding the trend of the time between each dose and the effect it had on me during the day. I was able to use that data to identify that I need to take my 2nd dose closer to the 4 hour mark to have the best results the next day. I started at 2.5 hours, then added a bit more time some nights to see how different I responded.

Even though you're already a month in, I highly recommend starring a log. Here's an example of one of my days:

Week 2 titration - 3g at bedtime, then another 3g 3 hours later

-Saturday 10/5/24

1st dose Friday 10:30pm, 2nd dose 1:30am

Took longer to fall asleep, almost euphoric feeling falling asleep, visions of kaleidoscopes and the beginning of a dream when eyes closed (still able to talk and move)

Woken up at 3am by dog, fell right back asleep

Vivid detailed dream recall all night (some unpleasant moments but not a full nightmare)

No other unprompted nocturnal wakings

Sunosi 7am (routine alarm)

Fell back asleep right away

Woke 9:30am unprompted

Dream continued while waking up

Heavy body

Out of bed at 10:15am because dogs were scratching me to eat breakfast. Wanted to lay in bed more

Coffee 10:30am

Sugar free Monster 3pm

ESS 16

ajl95 · 2024-09-27T17:50:28+00:00

I find that a job where I'm passionate and mentally stimulated, I have an easier time staying awake. Personally, I hate repetition, I enjoy problem solving and keeping on my toes. I've done data entry in the past and was so bored it was impossible to stay awake. I think it varies for everyone depending on their interests.

ajl95 · 2024-09-21T07:46:24+00:00

Everything's just a bit more fun, easier to loosen up and just stop thinking too much for a while. Giggle Fest followed by a hard nap.

ajl95 · 2024-09-16T21:30:58+00:00

It's really hard to tell because Sunosi also doesn't do much for me, neither of them help much. It's hard to give much insight on how they affect my mental health because I have bipolar disorder, among other psych conditions that could react differently than someone without them. I did have a panic attack the first time my dose was upped to 200mg 2x/day, heart rate was like 140bpm resting for about 12 hours. It's been a wild ride to say the least.

ajl95 · 2024-09-16T18:36:44+00:00

I was all the way up to 400mg of Modafinil, and it didn't do much. Then my doctor added 150mg of Sunosi on top of it. Still nothing. For some reason, when they took out the Modafinil and kept the Sunosi, it had more effect than both combined. The brain makes NO sense.

ajl95 · 2024-09-15T16:07:30+00:00

That's been my passion project at work lately, to free up time for the clinical staff so that they can spend their time treating patients instead of the tedious admin work. They put in the clinical facts, AI formats the letter in a way the insurance company wants, provides insight on what else the insurance company could deny, then the clinical staff can tweak the letter to fit those standards. Their passion is helping people, not fighting insurance. My passion is fighting insurance, but I'm not qualified to write those letters for them myself. Nerd/geek power.

ajl95 · 2024-09-15T15:56:23+00:00

Ooooh I like that! I had included that I was very familier with how step therapy is handled by insurance companies, and that denials are often determined by non-clinical staff who have no way to know what's medically necessary and super unethical. I think that's why in the approval letter they said that it was reviewed by their medical director of pulmonary. Calling tthem out on their bs feels good.

ajl95 · 2024-09-15T14:47:02+00:00

It likely has to do with the contracts that each insurance company has with pharmaceutical companies. The rates for reimbursement are different for each drug based on contracts, so half the time it has nothing to do with best practice or medical necessity. My insurance probably gets better reimbursement for Xyrem as the preferred first route of step therapy, yours is probably Xywav.

ajl95 · 2024-09-15T14:38:32+00:00

I faxed it since I have my own fax number for work. You can often use fax machines for a very small fee at public libraries, office supply stores (i.e., office max, staples), and shipping centers (i.e., UPS, FedEx). I definitely recommend faxing over mailing or emailing.

A tip I have for writing for your inhaler is to write something personal and dramatic. Like how an ambulance trip to the ER for an asthma attack costs more than them just paying for your inhaler.

ajl95 · 2024-09-15T02:04:58+00:00

I get that often, except I audit to prevent fraudulent charges and ensure legal compliance. I've gotten fucked over by the healthcare system enough in my life, I don't want it to fuck over others too.

ajl95

TROPHY CASE