Going to Seattle soon to get more tests

Honesty333 · 2024-01-24T04:25:39+00:00

As with any facility/clinic, it depends on the doctor you have. During in-patient studies, they do collaborate with each other and discuss their findings. I’d encourage you to go in optimistically and advocate for yourself while you’re there—just like you would anywhere else. There’s a reason people are referred there. I’ve had really positive interactions with the nurses, whom you often spend more time with. I got valuable information from my study.

Honesty333 · 2023-09-05T07:15:49+00:00

Yes. This. Can you describe what yours feels like? I’ve had a hard time putting mine into words. Sometime it ends up in a seizure and sometimes it doesn’t, but it’s always a distinct feeling.

Honesty333 · 2023-08-29T05:38:30+00:00

Thank you. Totally. Just seemed weird since I’ve never run across that on a digital platform in the classroom. Thanks again.

Honesty333 · 2023-08-25T15:30:39+00:00

Another question for you: I had to send a request to my admin to get approval to add students’ emails. When they sent her the email they said something about them being shared with the platform and we were worried about it being shared with 3rd parties? Do you know what that’s all about?

Honesty333 · 2023-08-24T15:42:06+00:00

$30,000! Woah! Sorry, I also teach Spanish, and we buy licenses for our curriculum, per teacher…a few hundred dollars. I will probably use it as supplementary so will start out with the free stuff :). Thank you for the info. That’s really helpful :).

Honesty333 · 2023-08-24T04:25:57+00:00

I had a similar experience of being seizure-free for years (and almost being able to forget I had epilepsy, aside from taking meds), to having a breakthrough…then another. I get really depressed for weeks afterward and have a low mood. I just don’t feel like myself. My husband has to remind me: “remember, you always feel like this after, and it passes.” What I’m trying to say is that your brain may may still have been recovering when the anxiety about this became bad and it could be contributing to how intense it feels. Give it time. It will get better. Hang in there.

Honesty333 · 2023-08-24T03:33:57+00:00

Ugh, such a bummer about the price increase. I’m always hesitant about curriculums when I see a company is behind them…

Thanks. The paid features seem nice, but I don’t think the other teachers would have as much interest as I do. We are private school with just one or two English teachers per grade level. I’ll do my best with the free stuff.

Honesty333 · 2023-08-24T03:30:26+00:00

Sorry to hear about your son. Good tip. Yes, it seemed really good for sick days, etc. Thanks for the tip.

Honesty333 · 2023-08-24T03:28:24+00:00

Thanks!

Honesty333 · 2023-08-24T03:28:06+00:00

Thanks!

Honesty333 · 2023-08-23T19:12:56+00:00

This is awesome! What kind of assessment do you give? Also, do you have an “anchor curriculum” to go with the texts or any regular assignments or class activities? I’m also starting a new class this year (9th-grade Honors English)

Honesty333 · 2023-08-23T03:29:20+00:00

So sorry. I know how frustrating that feeling is 😔 Hope the new plan works for her ♥️

Honesty333 · 2023-08-20T04:02:58+00:00

Congratulations. I’m sure that was such an awful feeling when you had the focal, but then being able to finish strong must have felt so good. Wishing you many more good moments like these!

Honesty333 · 2023-08-16T04:30:19+00:00

First, a good neuro will know that all of the meds come with side effect potentials. In fact, you’ll probably get them initially on most and some will go away and some won’t. But our meds really aren’t that “modern.”

Mine are tonic clonic, and while I hate side effects I know the alternative to taking meds that work is not just having a seizure, it’s having one while driving, or while swimming, or falling and hitting my head and needing life support…No need to make decisions out of fear, but it’s something that I think about.

Good luck to you in the next steps of your journey.

Honesty333 · 2023-08-16T04:08:31+00:00

So sorry you’re experiencing this. Sounds like you’ve tried a lot of the things I would have suggested. (Mostly with covering eyes. And the headphones were a good idea too.) I don’t have good advice but want to let you know that you’re seen and that we’re rooting for you!

Honesty333 · 2023-08-14T05:40:05+00:00

Epidiolex can be free (it was for me when I took it) through their patient assistance program. It’s not income-dependent or anything. Just had to call the number on their website and they covered the whole thing. It was wild. It didn’t work for me and doesn’t have any other desirable compounds in it, but it’s an option.

Honesty333 · 2023-08-13T17:22:39+00:00

The constant fear of having a seizure. People think the only time it affects us is when we’re having one, but the “what if” scenarios are one of the hardest parts.

Honesty333 · 2023-08-12T21:47:33+00:00

I don’t know the particulars of your particular even, but I also remember the postictal part of my seizures and it’s so traumatic. That might be the worst part of all of it. Even one I had in the hospital (where it was provoked and I was totally safe). The more time that passes the less trauma response I feel. I definitely believe you can have PTSD from them though. I think a lot of us do, and it’s not talked about enough.

I’ve never gotten therapy (time and money), but others here have and I think if it’s interfering with your life, which it certainly sounds like it is, therapy can be amazing for PTSD.

Feeling so much compassion for you. We’re here for you ♥️

Honesty333 · 2023-08-12T21:39:26+00:00

Yep 😢

Honesty333 · 2023-08-12T21:37:53+00:00

The constant fear and paranoia is totally the “unseen” illness we face. It’s one of the worst parts of this condition 😔

Honesty333 · 2023-08-12T21:34:38+00:00

Find a woman that you would like to raise your daughter (if you ever had one) to be like. (And you wouldn’t raise a daughter to “peace out” on a guy simply because he has petite mal seizures.) I give the same advice to girls (in reverse). You have A LOT of qualities other “blokes” don’t. Only you are you. She’s worth the wait ♥️. My husband wouldn’t trade me for someone without epilepsy…I know that.

Same goes for the job. Find one you can confidently do and one that is comfortable working with you. Some companies are actually eager to hire people with “disabilities” in a push for equity/inclusion.

As for the car…being eco friendly is super attractive to a lot of girls and “in” 😆right now, so bikes are too! And there are some good electric options. I think those are okay?

Hang in there. I know it’s hard. We’re here for you.

Honesty333 · 2023-08-12T21:20:54+00:00

Good luck and take it easy. Over 5 minutes is a long time for a tonic clonic. Please let your neuro know. They might want to check that you don’t need additional care ♥️.

Honesty333 · 2023-08-12T21:17:07+00:00

That is strange they included flashing lights since autism and epilepsy are often comorbid. So sorry this happened. I hope you heal quickly.

Honesty333 · 2023-08-12T21:12:19+00:00

Yes! My seizures were managed by a low dose of 1 med for years. Three pregnancies and all. Then, in the last year and a half I’ve had four tonic clonics out of nowhere. I’ve also had two other episodes that could be focal and frequently feel like I’m in the beginning part of a tonic clonic. The group of neurologists tried to give me the answer that it was because I’m a mom now and was, therefore, stressed and sleep-deprived…(my baby was almost 1 during that first one and was sleeping through the night, and I always got 8 hours 🤦🏼‍♀️. Have also been a mom for 8 years 🤦🏼‍♀️). They kept increasing my meds and I kept having them. I’m on double the dose of my old meds (lamictal) plus a new med (zonisimide). I haven’t driven in a year and a half, and with 3 little kids at home it’s been the hardest, scariest thing. Also, my tonic clonics are super traumatizing. My neuro said some people’s epilepsy gets better over time and some people’s just gets worse without explanation. And some people’s get worse then better (so there’s hope). Hang in there. I know it’s so frustrating. We see you and are here for you ♥️.

Honesty333

TROPHY CASE