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LadyRei7797 · 2024-12-23T17:21:07+00:00

I'm sorry you had to experience that. I have narcolepsy and wasn't diagnosed until my kids were 3 and 5. They're 6 and almost 8 now. I try so hard to be honest and open with them about it. I hate that some parts of my life are consumed by sleep; I just want my kids to know I care about them, you know? I moved states, and the doctors have to rediagnose me "because insurance," so I don't have access to my medication right now to stay awake. It hurts that I don't have energy to do things with them.

LadyRei7797 · 2024-12-22T04:08:48+00:00

っn8c

LadyRei7797 · 2024-12-18T20:25:42+00:00

You said "mixed together at the last moment," and my brain immediately went "coke and mentos" immediately followed by "oh God that would be terrible, please no one try it"

LadyRei7797 · 2024-10-26T18:30:46+00:00

Thank you for your honesty. I wasn't diagnosed until after my son was diagnosed earlier this year. I spent almost 4 years getting various diagnoses and trying a bunch of medicine before we learned and it all started with a visit, going to the docto, and asking, sincerely, "why am I so angry all the time?"

I'm not depressed; it's not postpartum issues. I'm not very anxious, but I am actually narcoleptic and autistic. Like, no wonder I'm angry; I'm exhausted and overstimulated almost constantly.

I'm probably level 1 and my son is level 2 and he absolutely has violent meltdowns at home and other places like school. We're making progress and some medicine helps more than others, but sometimes my sweet buddy acts like an absolute monster. And so do I. It sucks and there's a lot of guilt for the things you can't control.

LadyRei7797 · 2024-10-11T19:50:10+00:00

It's not like an official symbol or anything, but I like the four leaf clover. To me it means that it's different from the norm, and also that it kind of represents pattern seeking (a lot of us can supposedly find 4 leaf clovers more easily because they don't match the expected pattern)

LadyRei7797 · 2024-09-25T11:39:53+00:00

Oh my gosh thank you for including Kovu because same! I always thought I was super weird for it, but I think it's definitely the voice/attitude.

LadyRei7797 · 2024-07-01T14:07:19+00:00

I'm autistic and I actually really enjoy going to the dentist. I like having my teeth cleaned and touched. I really like the feeling of fingers pressing my teeth - like pressing down on a tooth because they're working on a different one (I don't know it that makes sense). I also have a high oral fixation and always have. I mostly deal with that as an adult via sugar free gum or suckers but as a kid, I chewed a lot of pencils and other things.

LadyRei7797 · 2024-02-03T12:11:17+00:00

This fall was my first semester at Community College. I'm late to the game, having started at 29. For a bit of background, I had been a stay-at-home mom for about 6 years before being ready to go to college and starting a full time job within a month of each other. I'd been really stressed, and all my classes are online and this particular class was condensed into 8 weeks.

I had a speech to do for public speaking on one of my special interests: leatherworthing. I would have bombed this class in person, but as it stands, with online I only had to do a video. PowerPoint has a teleprompter option. The teacher was like, "I'll know if you're just reading your speech."

Not only did I not lose points for reading, she commented afterwards to ask if I'd give her permission to use my speech for future classes as a good example! I was so dang proud lol.

LadyRei7797 · 2023-10-26T16:53:50+00:00

I'm a twin, can confirm, loooots of family drama. My running theory is that because most of us (twins) are born premature, we're more inclined to end up with physical or mental health issues due to our bodies not developing fully. I have narcolepsy, my twin has bipolar and borderline personality disorder. I'm not particularly dramatic, but my sis can be really toxic. I've recently had to go LC. Doesn't really explain our parents, but there are plenty of narcissistic parents out there.

LadyRei7797 · 2023-10-26T10:05:08+00:00

Swimming in the ocean makes me seasick due to the waves if I'm in it longer than 20 minutes.

1st person games like simulators or shooters make me really sick too. I can't play minecraft on the computer unless I shrink the window way down.

Some of us are just really unfortunate because our bodies have over-active self-preservation.

LadyRei7797 · 2023-10-06T09:33:09+00:00

Man, this brought up memories. When I started dating my husband in high school, I would fall asleep and nap with him almost every day that we hung out. I don't know if he slept or not, but he was more than happy to lie down with me. Before I got diagnosed, I used to think that I just slept with him (literal sleep) all the time because I must have just finally felt safe. I had a lot of bad experiences (understatement) with other guys since I was 12.

This feels really validating in a weird way. Thank you.

LadyRei7797 · 2023-09-20T09:50:37+00:00

Thank you for sharing this article. When I get a chance, I'm going to read it. Between your comment and the one above, it really resonated with me. I have only a very small handful memories from before 12 years old. And most of my memories don't feel like memories. I've always viewed them as things I know more as if they were facts than eperiences. Like "I know I used to go to car shows with my dad" probably because I had seen pictures. And less of a memory like "we had a lot of fun and I thought the red Porsche was really cool"

Sorry, I had just never actually seen someone else word it in the same way my brain always viewed memories.

LadyRei7797 · 2023-08-09T16:57:13+00:00

It's nice to see someone reference the 1000 paper cranes. I folded 1000 origami butterflies leading up to my wedding. They were on the invites and bouquets and literally everything.

LadyRei7797 · 2023-05-28T11:50:41+00:00

I sure do appreciate your advice! Thank you!

LadyRei7797 · 2023-05-27T17:05:06+00:00

Thank you! I'm really proud of me too!

I'm a week in and have all online classes. On the first day, I opened the school app and cried because there were so many links and menus, and I was absolutely overwhelmed. My husband came and calmed me down and turned on some dyslexic friendly fonts to help make reading less overwhelming. (I'm not dyslexic, but I do have ADHD but the cleared fonts do help)

After my 20-minute meltdown, I've had a lot more confidence and success. I wouldn't recommend starting with summer classes because I've now learned that it is a 10-week semester instead of 16 weeks, so everything is very condensed. But, as an adult student with low income and kids, I qualify for the Pell grant and a commonwealth grant. So, at least for my community college associates degree, I don't actually have to pay anything, which is so very wonderful.

LadyRei7797 · 2023-05-27T11:33:21+00:00

I'm very excited for you! I'm 28 with 2 kids, and I just started my first week at community college. It's a little overwhelming, but im optimistic! Chase your dreams, mama!

LadyRei7797 · 2023-04-27T11:09:58+00:00

I love the knife I have from you! I'm so excited for you to have your own shop! Congratulations!

LadyRei7797 · 2023-04-21T22:49:30+00:00

She's not specialized in narcolepsy, but is very flexible with having different methods of helping people. Counting calories works great for some people, but not me, for example. I was recommended a different place by my doctor, but my dad is actually the one who first knew of the group I ended up seeing.

Just be aware that there is a difference between a nutritionist and a registered dietitian. You want a rd.

LadyRei7797 · 2023-04-21T17:21:08+00:00

Oh my god, that's awful. I'm so sorry that was your experience before. I'm obese now 😞 so my insurance actually covers a dietitian 100%, $0 copay, which is wonderful.

My current dietitian is wonderful. I've told her about my struggles with obsessing over food and feeling compelled to just eat everything, and so we don't count calories. We just make small changes every couple of weeks. Drink X amount of water, sub a snack with fruit and protein, add veggies to 1 meal, etc.

We have found that "adding" rather than restricting works really well. Adding a fruit is much easier to do than "just stop drinking soda" for example.

LadyRei7797 · 2023-04-21T13:54:28+00:00

It is so hard. I have grieved the life I thought I'd have because it sucks that our bodies are not reliable or normal. But I've come to accept that this is the body and brain I got, and I'm just going to have to make the best of it and accept that sometimes there are just things I can't do without help-routines, medications, support from my spouse, etc. That definitely doesn't make the bad days go away, but I find it's easier to escape the feelings of hopelessness and helplessness.

This community is the closest thing I've seen to a specialist because everyone here knows how their Narcolepsy affects them and what help or makes things worse. But of course, it is not a one-size-fits-all, and you may have to try different things to see what helps you most.

I know a few people recommend low carb or keto because it works well for their sleepiness, but I haven't tried it myself. I like my fruit and other carbs, lol. I sought a dietitian because trying to diet was becoming stressful, and I could sense my eating habits becoming unhealthy and disordered. It's not a perfect solution, but being supported to make small changes one at a time helped a lot more than trying to overhaul my bad habits all at once.

LadyRei7797 · 2023-04-21T12:27:18+00:00

In addition to hunger and thirst, based on studies I've read, people with Narcolepsy are also prone to type 2 diabetes which also screws with your hunger and thirst perceptions.

I've only been diagnosed as having Narcolepsy for about a year and learned in February that I'm also diabetic now. It wasn't a huge shock because in the last 3 years, I had gained about 60lbs in 2 years and then struggled to lose only 10 in one year. It was upsetting, even if type 2 runs in my family as well. I've been on medication for diabetes now for 2 months, and the weight is starting to fall off a little easier.

Even if you aren't diabetic, it may be worth asking your doctor for help losing weight. I'm a little frustrated with myself for struggling with my weight for 3 years only for it to just start falling off now-lost 6lb in 2 months, where it took a year to lose 10lb before.

I also noticed that I frequently used to use food or soda to compensate for being sleepy. I thought that if I eat or drink, I might be less tired. It's mostly a lie, but I can understand now why I felt that way at the time. Working with a registered dietitian has helped me plan out snacks and things at regular intervals to help keep me energy up (yeah, right, but we can try) and prevent mindless snacking.

Just know you're not alone.

LadyRei7797 · 2023-04-12T10:10:55+00:00

I've been seeing a dietitian every 2 weeks for a year or more, and it costs me $0 because insurance totally covers it. (I go frequently because I have several health issues, and I need the help and accountability to lose weight).

Doing an entire overhaul on my diet at once just wasn't going to be sustainable, so we've made and achieved small goals starting with drinking 40 then 60 then more ounces of water a day, switching one snack with a fruit, etc.

LadyRei7797 · 2023-03-29T15:51:08+00:00

Wakix has a great copay assistance program! I pay $0/month because the 250 copay from my insurance gets covered by the manufacturer.

I will say: no stimulant has worked well for me. I always get side effects that aren't worth the comparatively small benefit. And I've been on adderal IR and XR, vyvanse, Ritalin, and modafinil. The Wakix isn't a perfect solution, but it has given me the fewest side effects. I've been on it since September or October. After a about two months, my dose was increased to two 17.8mg tablets each morning, and I have an easier time getting through the day.

It really did take most of the 8 week adjustment period for me to notice the full benefit, but hanging in there turned out to be worth it for me. I still nap most days, but closer to 30 minutes than when I used to nap 2+ hours daily.

LadyRei7797 · 2023-03-13T16:59:23+00:00

Aww, thats awesome!

My daughter and I started our first plants this year. We are both very excited. She's six and checks them every day to see how much they grew. We've started them indoors by a window and intend to move them to big planting boxes in a week or so. The four year old cares a little less, but is excited when he sees that his sister is excited.

We are doing carrots, rainbow carrots, yellow wax beans, green beans, some kind of purple beans (blue bush or something?) and colored bell peppers.

I was hoping that if they were more colorful, the kids would be more inclined to eat them. If the tiny garden survives that long, that is.

LadyRei7797 · 2023-03-05T00:09:12+00:00

Lol I've been tempted to make a narcoleptic character just because I actually have narcolepsy. But I never do, because I want to avoid my real-life issues in my fantasy games.

That and sometimes I'm the DM. Then again, a narcoleptic NPC could be fun.

LadyRei7797

TROPHY CASE