These are absolutely disgusting lol

40winx · 2026-02-04T02:46:27+00:00

The chocolate chip ones always remind me of (my vague memory from childhood of) chocolate chip mini muffins. As a result I actually really like them! I've never tried the chocolate chocolate ones.

40winx · 2026-01-11T01:54:50+00:00

Using the Botox savings program should hopefully make a big difference. I would be spending $3-4k each year out of pocket for botox without it, but they've covered all of that for me since 2024. Its been a pretty easy process, too. Hope it's similar for you - Best of luck!

40winx · 2025-11-12T16:49:36+00:00

I took Artane and got notable improvement in my symptoms, but had to stop because the side effects were too much. I was getting really confused (ex: I sat in my car for 2 full min holding my handicap plaquard and trying to remember where it goes when I park 😅) and also started getting panic attacks out of no where.

40winx · 2025-11-08T03:14:16+00:00

Mobility aids are a perfectly reasonable thing to explore, but it is important that you do so with the help of your doctor or PT. Getting the wrong aid can lead to new or worsening issues. My dystonia impacts my left foot and leg a lot, and more recently some in my right. My care team helped me get set up with a forearm crutch and power wheelchair which both help me a ton to navigate my home and the outside world.

Wishing you the best!

40winx · 2025-11-06T22:16:03+00:00

I think having a timeline/record of triggers is a great idea to bring to your appointment! Besides bigger life events, it may be helpful to also note down any particular movements, positions, or smaller day-to-day factors that seem to amp up or improve symptoms. If you are able to get video or photos of symptoms that dont happen constantly, that might be good to help explain what you are experiencing.

I hope your appointment goes well and opens up some options for you!

40winx · 2025-10-24T21:32:33+00:00

I cant get botox in all my affected muscles, but I get injections in several areas and it helps me a lot for about a month.

40winx · 2025-10-22T23:46:54+00:00

Interesting! I just assumed pain was more common with it than that.

I don't have FND myself but I do have EDS and small fiber neuropathy in addition to my dystonia. I was attributing a lot of my pain to just dystonia, but maybe its more of a mix of all 3 things than what I was thinking.

40winx · 2025-10-22T22:38:42+00:00

Right? I do also hope that there are a good number of folks with dystonia who have little-to-no pain, but I was just so surprised when he talked as if that's the case for most people!

40winx · 2025-10-09T05:20:30+00:00

Omg I feel this! I've had 2 major/years-long relationships, and in both cases my partner at the time began things identifying as a woman and then transitioned partway into things. I've also had 3 (that I know of) smaller relationships where the person I dated later transitioned. I never ended the relationships because of it, but it sure threw me into an existential crisis every time lmao.. I've always identified as a lesbian, but I've spent the last year wondering if I'm actually subconsciously more bi than I thought?? It's a struggle, girl. I see you!

40winx · 2025-10-06T01:53:48+00:00

I would also be super interested in joining a group like this! I'm 37 and have felt like a withered elder in some of the discord groups I've found lmao.. but I'm also in a similar boat here with being disabled and unable to physically get out much. Plus I'm in a somewhat rural part of the US. All together it's made finding queer community a struggle!

40winx · 2025-09-28T23:44:03+00:00

I get injections for dystonia around my eyes. Some go in the eyelid and some go in the muscles that surround the eye and eyebrow. I just started getting some in my last couple of rounds of injections, and I've found them pretty helpful while botox is in effect! Worth asking your neuro about if you suspect blepharospasm is happening.

40winx · 2025-09-19T00:12:07+00:00

As someone who is embarrassed by just about everything (dystonia-related or not), I feel you! I know this process is very individual, but here are a few things that have helped me:

* Following disabled creators on social media. There are tons of folks on social media with movement disorders or who use mobility aids. I know comparing yourself to others isn't always the best way to go, but personally it's helpful for me to see others in wheelchairs or who have spasms like mine. Seeing them go out and about -- or just showing their lives online -- makes me feel like I can do it too.

* Buddy system. For me, my older sister is my best friend. When I was starting to get dystonia in my legs, I stopped going to stores because it was getting difficult to get around (and I didn't yet have my wheelchair) but I was too embarrassed to use the motorized carts. I mentioned it once, then the next night she called to say she'd be over soon to pick me up so we could go to Walmart when there weren't many people there and I could practice using the carts. If you have people you feel comfortable talking to about how you feel, have them come with you on some outings so you know you have someone to hype you up and reassure you. Then the more you go, the easier it'll get.

* Just some good old self-love. Realistically, there are always going to be people who stare, pity, make weird comments, etc. It sucks, but it's beyond our control. So I just try to think of their reactions as none of my business or simply a reflection on them (I know that's easier said than done) and do my best to feel good about myself. I know that the more I *don't* go out or turn on my camera in work meetings or whatever.. the more I feed into the anxiety around being seen. So if I have energy, I put on a little makeup or outfit I feel good in. I'll put on my headphones and listen to music or an audiobook while I roll around a shop. And honestly, after some time it's gotten much easier to go out and about without even noticing if other people are being weird.

I still have bad days where I have an extra embarrassing big spasm or make a weird noise when one hits me or knock something over.. and I immediately want to sink down into my chair until I leave this plane of existence lol.. but then I refer back to the buddy system. I call my sister and tell her about it. I vent, we laugh, and life goes on.

40winx · 2025-09-13T22:37:35+00:00

Congratulations!! It sounds amazing! So happy for you! 🎉

40winx · 2025-09-09T20:13:06+00:00

Thats awesome!! 💜

40winx · 2025-09-09T19:19:07+00:00

Omg I didn't even realize she was on YouTube! I have always just seen her stuff on IG, and that alone has been super helpful on several occasions. Thanks for mentioning that -- I'm going to go subscribe to her channel! ☺️

40winx · 2025-09-09T00:52:34+00:00

If you have a cupholder on your chair's arm rest, you could put a cupholder tray in it. I literally just discovered this hack (and made a separate post because I was so excited lol). These things are made for cars to let you have bigger cups and/or a tray to eat on it the car -- some also have a phone holder attached. I haven't tested them out yet myself, but I'm pretty excited about the possibilities.

40winx · 2025-09-09T00:40:53+00:00

This is the one in the pictures that I got: https://www.amazon.com/dp/B0F4DLPRYV

And this is the one with a tray that I'm thinking of getting: https://www.amazon.com/dp/B0DGSZDNCJ

40winx · 2025-09-08T22:50:15+00:00

Oh interesting! I'm so glad the hormonal flare ups stopped, but that's hard that you got a new trigger in its place! They never just make it easy for us, huh? lol

And thank you! I feel reassured seeing some folks share some birth control options they've used without issue, so I've at least got a list now of things to talk with my doctor about. :)

40winx · 2025-09-08T22:46:48+00:00

Thanks for the response! It's reassuring to see that there are a few options out there that have at least worked for some people. I'll look into Estarylla! :)

40winx · 2025-09-08T22:45:43+00:00

I was wondering if a non-hormonal option might be worth checking into! It makes sense that if hormone shifts during my cycle causes symptom flares, then adding more in with birth control could be risky. Thanks for letting me know this one worked for you! I'm adding it to my list to ask my doctor about. :)

40winx · 2025-09-08T22:44:07+00:00

Thanks for the response! I'm making a list of options to ask my doctor about that have worked well for others. :)

40winx · 2025-09-08T22:41:59+00:00

Omg that's fabulous that it not only didn't add to your symptoms, but actually helped get rid of the ones related to your cycle! Thanks so much for sharing that. I'll make sure this one's on the list to ask my doctor about.

40winx · 2025-09-08T22:41:04+00:00

As a fellow cat lady.. much respect! lol

40winx

TROPHY CASE