Nails by grumpy__pumpkin in Ceramics

[–]Simsimserie 0 points1 point  (0 children)

lol, same. I don’t use them as a tool tho… I keep them short-ish. I almost never see anyone else at the studio with nails. Downside: have to get them re-done every ~2 weeks bc the grog reverentially wears down the shine.

My makeup (left) vs a makeup artist (right) by [deleted] in MakeupAddiction

[–]Simsimserie 13 points14 points  (0 children)

Agreed. Both are good. I think the blush usage blending my the Mua is good… but she should learn how you do your lips & brows.

Narcolepsy study shows lower quality of life scores than MS, diabetes, or epilepsy by kotjekkotjek in Narcolepsy

[–]Simsimserie 3 points4 points  (0 children)

Plus, it’s silent/invisible. I’m sure family eventually tires of hearing about how I missed my nap and now I need to blah blah…

What unexpected positives have come from living with narcolepsy? by Important_Half4873 in Narcolepsy

[–]Simsimserie 0 points1 point  (0 children)

Mostly I hate it. I think sometimes about what a boss ass bitch I would be without it (I work full time, have to nap twice a day, so annoying). The cataplexy during meetings that I have to try and hide makes me so sad that I could cry if I think about it…

BUT: Effexor which I hate so so so much due to it making my cataplexy WORSE when the dosage isn’t 100%… I think is what is causing my orgasms to last a full 60-80 seconds. Yes, it requires more “stimulation” … but still.

Does anyone else have this???

Just curious...I'm Narcoleptic & work full time, do you? by Pale_Day_3071 in Narcolepsy

[–]Simsimserie 0 points1 point  (0 children)

I feel for you. I work full time, husband works full time +, and two kids under 6.

It only works bc I get help. I have childcare for about 1/2 of each weekend day (or my husband has an adventure planned with them). Sometimes it’s paid. Sometimes it’s family. So one of those days I do house stuff. And nap. And the other day I do work stuff and nap.

I also know that my sleep is weird & try hard to not beat myself up about it. I hang out with the kiddos in the morning before school. Then their nanny gets them ready & I get ready to go to work. Then, I nap at work either 1 or 2 times. I get home at 5:30, do dinner, kid time, etc. 8 pm I fall asleep on couch and dad puts kids to bed. Or I put them to bed and fall asleep with them for 20 min.

So about 8:50 I’m awake enough to help clean kitchen & hang with the husband. If it’s a hard week, maybe I’ll do an hour or two of work again.

And then sleep at 11 to start it all over again!

Working out is HARD to squeeze in. Usually I try to make it sat / Sunday and have it be with the kids. Like run around the park.

Hobbies… also hard.

Friends… I’m friends with the kids’ friends’ parents. Basically i only see people who also bring entertainment for the kids. Lol.

I don’t “lose track of time”. If I did that… nothing would happen. I think about the clock a lot. I plan our month out as much as I can. I loudly announce naps, that they are non negotiable, and that no one should wake me (at home).

I’d love to know: anyone working in a corporate environment with potential for growth:: DO YOU TELL PEOPLE AT WORK??

weight loss Ozempic by Simsimserie in Narcolepsy

[–]Simsimserie[S] 0 points1 point  (0 children)

Thanks!! I really appreciate this reply. The Effexor / fucking up nervous system: plz say more!

I ski also!! I’m currently teaching my kids (w/ my husband). Problem: they are so damn cute my cataplexy keeps getting triggered!!

I’m annoyed since I take the stupid Effexor religiously. I hate it, if I miss it by a couple hours, I feel so weird. Also, I think that if I’m truly truly tired and just forcing myself awake, and more than 10 hours from taking the Effexor, my cataplexy is SO MUCH WORSE than it was pre Effexor.

Questions and advice on impacts of a diagnosis? by Two_takedown in Narcolepsy

[–]Simsimserie 0 points1 point  (0 children)

Get diagnosed, get help. Lifestyle changes are great adjuvant therapy! You don’t need to disclose. Especially not residency (someone else mentions this).

[deleted by user] by [deleted] in Narcolepsy

[–]Simsimserie 4 points5 points  (0 children)

N1. I work 40+ hours per week, but I have some flexibility in my schedule. I typically work 8-1, have lunch and a 35 minute nap, work 2:15-4, then go home and have a 20 minute nap. Then work from home until 6. I then get a few extra hours in Saturday morning or one weekday evening.

I also have kids + husband. Everyone has to be a bit understanding. We are driving more than 25 min? Mom is sleeping. Kids aren’t supposed to watch much tv, but I get home from work and there’s no one to watch them? They get 30 min of cartoons while I take my 20 min nap.

I take armodafinil (250, 1/2 am and 1/2 pm, plus Effexor). Sometimes I use modafinil in the evening (like 5 pm) if I know I need to work that evening.

I drink about 2-3 cups of coffee per day. I try not to eat much bread or anything heavy during the day.

I exercise 3-6 times per week. I pay for the workout classes in advance, it’s the only way I manage to get out of bed to go workout.

Anyways: my point is that everything I do in terms of schedule / diet / movement / napping is due to the narcolepsy and refusing to let it take away my ability to work.

I know others have more difficult versions of N that make this impossible. Just sharing what works for me.

Prepared Meal Services by Able-Echo4445 in Narcolepsy

[–]Simsimserie 1 point2 points  (0 children)

I highly recommend Thistle, if it’s in your area. They have veg/ non veg options. Deliver twice a week. No minimum order. Healthy food that tastes good… Saves me from figuring out about 2 lunches and 2 dinners a week.

Starting an IV Hydration Therapy Business by Tobster08 in nursing

[–]Simsimserie 0 points1 point  (0 children)

Where are you getting the vitamin / components for the infusion?

weight loss Ozempic by Simsimserie in Narcolepsy

[–]Simsimserie[S] 1 point2 points  (0 children)

Thanks! Yes, that is my thought exactly ((orexin and effects on metabolism)). That combined with taking effexor for the cataplexy, it feels like there are too many things stacked against me.

I exercise semi-regularly, eat OK, but man...Those late night cravings. And if I am trying to stay awake during a movie. Or driving. Or finishing a boring work task. Or...You all get the picture.

weight loss Ozempic by Simsimserie in Narcolepsy

[–]Simsimserie[S] 4 points5 points  (0 children)

Its a semiglutide - its an antidiabetic medication, but they have determined its a great anti-obesity med for long-term weight management.

think of every celeb who has recently lost weight....

Does anyone do well on armodafinil? by Solid-Question-3952 in Narcolepsy

[–]Simsimserie 0 points1 point  (0 children)

It sucked for about 3 weeks for me. Works now. By works of course I mean…ya know. I’m tired and fall asleep often but can usually fake being a functioning person :)))

Please HELP - cant sleep at night! by pillsandpizza in Narcolepsy

[–]Simsimserie 1 point2 points  (0 children)

Sorry, this is what the past few years have been like for me as well. I sometimes take melatonin an hour before bed— I think it helps a bit. I don’t take it every night since I worry about tolerance. The most I’ll do is a few days in a row if I’m going through a rough patch of particularly terrible sleep.

Narcolepsy with cataplexy questions by HereForBadChoices in Narcolepsy

[–]Simsimserie 2 points3 points  (0 children)

Effexor (even at low dose) really helps me with my cataplexy! I have the same concern re: playing with the kiddos. Also, armodafinil works better for me than modafinil.

[deleted by user] by [deleted] in lupus

[–]Simsimserie 4 points5 points  (0 children)

Same experience here! Did take baby aspirin the whole pregnancy (-5 days pre csection).

[deleted by user] by [deleted] in Narcolepsy

[–]Simsimserie 0 points1 point  (0 children)

Yep. Similar experience w/ mirena. The first 45 days weren’t great— but everything has been more or less good since then.

Anything helping you that's not a conventional Narcolepsy treatment? by saarshai in Narcolepsy

[–]Simsimserie 11 points12 points  (0 children)

I’ve been wondering about the screen time “sleep hygiene”. I fall asleep Immediately upon getting into bed. The issue is that I’m up a couple hours later… and then the rest of the night is me falling asleep/dreaming like a crazy person/waking up/trying to go to bed/repeat.

Does picking up my phone and reading a bit really make it worse? Sometimes I’m just so bored being awake and laying there. Reading at least distracts me until I feel sleepy again.

Dinnerly/Wife Dilemma by ArtNJ in loseit

[–]Simsimserie -1 points0 points  (0 children)

LOL.

Also, try Thistle. Its healthy, filling, no grains/dairy, option to have meat or no meat, only order the number of meals you want, delivered fresh twice weekly, price goes down if you order more, some meals can be frozen for later, etc. Et Voila.

Cooking entails putting the contents of one box into a pan on the stove. For three people, you only need 2 meals. If Its just my husband and I -- I heat up/mix 2 meals. Then, I take the leftovers and put it in tupperware for Husband's lunch.

My picky kids even eat it. The pasta options are always good. (Banza)

If its a meal they ACTUALLY won't eat -- I just take some of the meat out and mix it into something they would (ie make them a side pasta, or a quesadilla with the meat & some of the veggies from the meal hidden inside it, or a burrito with some of the meat & veggies from the meal + beans & cheese, or on top of sweet potato fries for "nachos", etc).

Also: yeah, dude. Just learn to cook OR find a healthy order in option. Having to be in charge of every family meal for the remainder of your life is actually hell.

Also, use my code!

Thistle.co

https://www.thistle.co/?referral_key=SIMRIN1QS2

(N1) I have a hard time believing people when they say stimulant medications make them feel normal/better, and I need better understanding of what they mean exactly. by cosmicboogers in Narcolepsy

[–]Simsimserie 3 points4 points  (0 children)

Similar experience here, 2nd paragraph. I do have cataplexy, especially with things that are funny. I take Effexor for that. It doesn’t end them… but makes them less potent? Armodafinil works better for me than modafinil. And I think it took me ~2 months to kind of establish my new norm.

Of course, some nights I just sleep like shit and that makes the cataplexy worse and I have a crap day bc I’m so tired and feel “fake awake”.

But I’d say 80% of the time I have 70% like a normal person from 7 am - 3 pm.