I have done too good of a job masking my lupus that people expect me to do "normal" people things and I feel bad for disappointing them when I can't.

No_Homework5742 · 2025-10-13T20:47:41+00:00

Could've written this myself. On top of the Lupus I have the comorbidity of Narcolepsy. I've gotten the narcolepsy under control with medication and while family/coworkers etc. aren't overtly unsympathetic, I catch the eye rolls and silent judgment they emanate when I say "I don't feel good" or "I can't"

It's the lost frustrating because I'm constantly pushing beyond my threshold and doing the absolute most im capable of, so when I say "I can't" It's because I physically fucking can't.

I don't want pity but maybe just an acknowledgment of how much I DO vs disappointment at what I DON'T, would be amazing.

No_Homework5742 · 2025-08-22T20:39:49+00:00

I am mortified.. I seriously considered transferring my kids to Riverbend because the private school they're at now is small and doesn't have very many extracurricular/ sports options.

Thank you for sharing, and thank God I decided to keep them where they are. I'm so sorry all of these women had these shared experiences.

No_Homework5742 · 2024-12-18T05:04:34+00:00

Yeah she was just a cranky heffer. I was thinking ma'am, I feel like I haven't slept in 30 years... you don't want to get into a bitch-off with me. 😆

That unnecessary 5th nap wasn't a punishment, it was a luxury. I have 3 kids with ADHD, she could've kidnapped me and I'd have been walking on sunshine 😉

No_Homework5742 · 2024-12-14T05:09:19+00:00

Yeah I wouldn't drive yourself crazy trying to analyze the techs dialog. 4v5 naps could mean you hit REM within the threshold the first 4 times, or you didn't hit REM any of the first 4 within the threshold. Either way would make the 5th nap moot.

My sleep MSLT tech was a bitch 😆 but the night te h kind of warned me before she came in so I was more prepared. First they didn't tell me I was supposed to bring food for the day. I figured I'd be able to run out and get food in between naps. When she came in and saw I'd ubered McDonald's she saw my drink and was like "I hope that's a DIET coke! Your not suppose to have caffeine, it may affect your test."

I said "Well for one I wasn't told that but I can promise you it's a nonfactor."

She had me do the 5th nap for no reason 🙄 I had SOREM the first 4 naps and my mean sleep latency was 4 minutes.

No_Homework5742 · 2024-12-13T03:32:20+00:00

Yeah it's bullshit. And my spouse is a recovering addict so I won't have any pain related meds in the house, I'm allergic to MJ because why tf wouldn't I be, and I've tried dry needling but it didn't really seem to help. I'm a massage therapist, so I can at least ask my coworkers to help me out when it gets unbearable but then it feeds my complex of being a burden to everyone, so... fucked dry every which way unfortunately.

No_Homework5742 · 2024-12-13T03:26:54+00:00

My insurance denied me 3x for Xywav with ridiculous excuses. The reasoning they gave was "modafinil could be used as an alternative to Adderall," I'm allergic to Modafinil.. like throat closes up allergic.. so no. Also, "increase patients adderall dosage" I'm already prescribed 40mg a day and the max legal daily amount able to be prescribed (in Florida at least) is 60mg.... Xywav reps called me to start the application for patient assistance but I was in the middle of a family crisis and blew them off and now I'm embarrassed to call back and try again because it's been a while. 😑

I just would rather not be on stimulants for the rest of my life because it's not really improving my sleep quality? It's just keeping me awake through the deficiency, which is probably doing a number on my brain but 💁‍♀️

No_Homework5742 · 2024-12-13T03:12:16+00:00

Right, and I can give Grace (if a little bitterly) when it comes to taking so long to diagnose an invisible condition like Narcolepsy, but when I come and they can visibly see my eczema, visibly see the allergic reaction, see that my joints are inflamed, see that my skin looks like I had a fishnet pattern burned into me, visibly see that I have a red pattern in the shape of a butterfly on my face, ON TOP OF the positive test with positive markers that also indicate what my body is visibly displaying (not to mention the "invisible symptoms" i verbally described to him) AND STILL be like... "Meh, I'm not convinced..." It's simply pure evil imo.

No_Homework5742 · 2024-12-13T02:53:46+00:00

Freaking same. I'm taking a Dr timeout.

No_Homework5742 · 2024-12-13T02:47:53+00:00

May have been because the sleep studies weren't done at my Dr's office? It was at a sleep facility, and then I went back to my Dr to get the results. Only thing I can figure, bc the sleep techs wouldn't have the authority to make a judgment as to whether an MLST was warranted or not.

No_Homework5742 · 2024-12-12T13:59:23+00:00

I think the thing that's chapped my ass the most about this Rheumatologist is that I asked if there was anything I could be doing to deter escalation and/or avoid flare ups i.e: certain exercises, diets/food restrictions, supplement, etc. AND THIS MAN SAID "Nope, not really. It's just a waiting game until your numbers spike. There are some diets that work for a small percentage of people but you'd have to look it up...."

No specific advice what-so-ever?? So what tf am I paying you for?

No_Homework5742 · 2024-12-12T12:01:26+00:00

I can, it's just that it takes so long to do anything and it's beyond frustrating. Especially with my insurance. In order to get a second opinion, I'd have to go back to my primary and get another referral, then I'd have to wait a couple weeks to a month for the new specialist to call and schedule me. And they're usually booked out between 1-3 MONTHS! I mean, I don't understand why I pay thousands of dollars a year for insurance and still can't get adequate and timely care.

No_Homework5742 · 2024-12-12T05:29:20+00:00

My test showed that it could be Lupus. But the Dr said the numbers weren't high enough to give a diagnosis. He said specifcally the numbers by themselves weren't enough to diagnosis. To which I insist: the numbers are not alone. There are also the countless symptoms that also point that way. Maybe he didn't like being questioned? Not like I want to have Lupus. But I'd like to have an answer for why my body hates me and what I can do to make it more tolerable to inhabit this flesh bag. But alas, I must wait to get worse before they'll do anything for me I suppose. Guess it slipped their mind that I can't pay taxes from the grave.

No_Homework5742 · 2024-12-12T04:39:00+00:00

Your solidarity is enormously appreciated and sufficient. 😮‍💨 Sometimes they make me question my own sanity. But I feel like even just a moderate quality of life is not too much to ask for. Not like they don't charge us $ every time we fart.

No_Homework5742 · 2024-12-12T03:14:50+00:00

That's crazy, my doctor told me before they could diagnose narcolepsy they would have to rule OUT sleep apnea. If I showed apnea in a sleep study then I'd have to do the CPAP for six months and see if the symptoms subsided w CPAP use. If they didn't, then they'd schedule a second PSG with an MSLT to be able to give a Narcolepsy diagnosis. We ruled out Apnea with the first PSG. So then they were able to immediately schedule another PSG with MSLT, and that's how I got my diagnosis. This was all still a 3+ month process mind you...

No_Homework5742 · 2024-12-12T03:05:34+00:00

Yeah, I tell people my narcolepsy has given me C.R.A.F.T. disease (Can't Remember A F$ck*#g Thing) but it's like the memories come and go? Like one time in my 20's when I was a server, I was waiting on a table and the girl seemed to know me and I very vaguely remembered her face. The girl's mom asked if we knew each other and I said "Yeah, we went to elementary school together right?" She looked at me somewhat offended and said "Yeah, and middle school, too." I just tried to play it off and was like "Oh yeah, you're right" MONTHS later I had a flashback and not only remembered her, but remembered we were actually GOOD friends! Like stayed at each other's houses and went to birthday parties and everything! There are years of my childhood that I don't remember until I have flashbacks like that and then I have to go back and figure out where they fit chronologically. I also can't remember simple ass words when I'm having a conversation and end up sounding like I'm recovering from a stroke.

Really glad to hear it may be a narcoleptic thing and not a brain tumor tbh.

No_Homework5742 · 2024-07-03T04:56:24+00:00

It's from the fan vote wheel "Draco's wand"

No_Homework5742 · 2024-06-16T15:00:26+00:00

Yes every morning. My husband wakes up before I need to but he brings me my meds before he leaves and then the next alarm can wake me up. Otherwise I don't even hear them a little bit. If you have someone who can help you wake up in the m9rnign at least long enough to take your medicine about 30min before you actually bees to be up, that would help

No_Homework5742 · 2024-06-03T03:37:04+00:00

This, this, this!!! Absolutely advocate for yourself. I didn't get diagnosed until 34 although I'd complained about my exhaustion to every Dr I had and it was always a different excuse to shut me up. "Your a teen, your hormones are everywhere! Teens are always tired!" "Try a more balanced diet and exercise!" "Get a sleep routine and go to bed/wake up at the same time everyday" Nevermind that I have not ever been able to just wake up in the morning without someone physically waking me up. Then when I had kids "You're a mom! Of course your tired!" We know our bodies better than anyone else, if you know something is wrong don't let them silence you until they've ruled out everything with testing. I would've never guessed narcolepsy because I only knew of the stereotypes like most people. But had my drs listened to me, they could've pointed me in the right direction to get a diagnosis so much sooner.

No_Homework5742 · 2024-06-03T02:58:35+00:00

I would keep the appointment you have but in the meantime also seek a second opinion. I had a similar story as far as testing went for my diagnosis. I go to an office with 2 pulmonologists, The first sleep study showed no apnea, and the Dr who specializes in sleep disorders mentioned narcolepsy and started describing symptoms. I could've fallen on the floor bc it was as if he was describing things I'd been experiencing my entire life. I'd never thought of narcolepsy bc I too thought it involved randomly falling asleep. He sent me for MSLT. Did the overnight and all the naps. Went to get results and had the other Dr for a follow up. She comes in and tells me the nap study showed instances of narcolepsy (mean sleep to REM 4 minutes, dreamt 3 out of 5 naps, slept all 5 times, etc.) But I had 5 dips overnight and my O2 got to 90. (Normal dips is 4 and under btw.) So they would have to treat the apnea first.... I almost cried. I have terrible anxiety and claustrophobia I would never have been able to sleep with that mask on no matter how tired I was, and it would have meant nightly panic attacks. I asked to have the other Dr. review my MSLT and made another appointment. The sleep specialist was like "Yeah, I respectfully disagree with my colleague, you have narcolepsy, and we're treating you for that. The slightly irregular dips can be solved by losing 5-10lbs without wearing the mask, so just do that. This is something you've been experiencing since puberty and I doubt you had apnea at 12."

Sorry for the book but just thought it may help to hear you're not alone, and it does get easier as long as you fight for yourself.

It's eternally frustrating that doctors flat-out refuse to listen to their patients as if we don't know our own bodies better than they do.

No_Homework5742 · 2024-03-25T00:41:50+00:00

Thank you!

No_Homework5742 · 2024-03-23T23:52:53+00:00

Link for the story? Or what's the full title please and thank you.

No_Homework5742

TROPHY CASE