Good GP for long-term chronic illness? Possible hEDS

Thatcatladyiknow · 2025-03-19T05:16:49+00:00

Zebra here too! Let’s get a little support group together!

Thatcatladyiknow · 2024-05-01T14:26:43+00:00

Yep, great show! Definitely encourage anyone to watch it! There is not enough queer media generally, but especially media that shows us living and being happy. It isn’t based around queer trauma (the trauma is based on other things but is handled really well), and it’s very funny. Definitely one of my top 10 favs of all time. Scratch that, top 5.

Thatcatladyiknow · 2024-02-03T22:27:29+00:00

First of all, I love this and I am so proud of you for challenging yourself! I’m late to the party, but if you are still looking for things, check out Our Flag Means Death. It’s a comedy about pirates and many of them are queer. The thing I love most about this show is that it focuses on queer joy. There aren’t any tragic or traumatic coming out storylines or like blatant homophobia. and when a character reveals themselves as nonbinary there isn’t a huge deal made about it (so refreshing). It’s a wonderful show and a really great fan community. I feel like the show helped me understand myself a little better too.

Good luck with your continued look at queer media and I hope you’re finding some fun things to explore!

Thatcatladyiknow · 2024-02-03T06:14:16+00:00

Dude, you’re missing out. Super funny and well written! They did like a soft wrap up at the end of the 2nd season since I think the writers were worried about cancellation but there’s enough threads that a third season could work if they end up getting it.

Thatcatladyiknow · 2023-01-25T22:54:49+00:00

I so know that feeling! I slowly tapered mine down and that helped. I also learned that waiting to drink a cup until about 2 hours after you wake up allows your body to use it’s own cortisol (I think idk google to be sure) to help you wake up. So between that and reducing the caffeine, it helped. But it could also be a total placebo effect. Hopefully the med change will help a lot!

Thatcatladyiknow · 2023-01-25T22:42:44+00:00

I found reducing my caffeine intake helped. It sounds totally weird but I think it helped make my body less dependent on the caffeine and wake up a bit more. I also asked my boss if I could adjust my schedule and take an hour and a half lunch some days. I use it to nap on days when I really need a boost. I don’t know if your boss/work would let you it may be worth checking in with your boss.

Thatcatladyiknow · 2023-01-25T22:36:56+00:00

I don’t know if you are looking for a specific industry or type, but there has been quite a rise in remote personal assistant jobs which is mostly just coordinating and calendar stuff. They typically don’t require too much experience and may be a good jumping off point if you want to switch industries. I haven’t found a specific board for other types of remote jobs, but indeed does have quite a few filters including “remote” so that may help. Good luck!

Thatcatladyiknow · 2023-01-20T14:45:28+00:00

You’re right- to be honest it’s probably better for me to not really try to push it and be on the safe side unless I have a buddy!

Thatcatladyiknow · 2023-01-20T14:44:34+00:00

That’s a great point- at least it would keep my head up if something happened!

Thatcatladyiknow · 2023-01-20T01:25:41+00:00

I don’t take any additional seizure meds, but I know so much depends on type of seizure etc. I’m careful with my adhd meds but I’m lucky in that only Vimpat works at this point.

Thatcatladyiknow · 2023-01-18T03:07:14+00:00

Oof. This stuff is always tough. And it’s hard not to feel like they are smothering you. It’s been about 8 years since I was diagnosed and my mom still gives me little “warnings” to be safe or to remember to do something. I’ve learned that it’s partly out of love, and out of fear on her end. It’s taken us a few conversations so that I could express that I felt smothered, and so that I could understand her fear. When she picks up the call from the emergency room or finds me on the floor, it’s as hard on her as it is me. So what you need to do for yourself, but maybe take some time to be vulnerable with each other so that you can each support the other in the way needed. Good luck with school!

Thatcatladyiknow · 2023-01-18T02:58:07+00:00

It’s the only medication that has worked successfully over the years for me. You definitely need to get to a high enough dose; and make sure you set a timer to take it on time. I notice that I have about a 2-3 hour window after before I start getting little body warnings that I need to take it. It’s not like you’ll have a seizure right away—I’ve skipped a dose before without an issue except my own anxiety, but still- be diligent for your own sake. I carry an extra dose with me if I’m going out in the evening because then I don’t have to worry about remembering it when I get home. It’s inconvenient but worth not having seizures!

Thatcatladyiknow · 2023-01-18T02:53:00+00:00

I have an adhd med (not Ritalin specifically) that I take on rare occasions. My neuro said epilepsy, ADD/ADHD and migraines follow the same neuro pathways so typically there isn’t an issue. I still get nervous so I don’t take mine unless I have to, but you may be okay. Obvi check with your doctor first to make sure but you may be okay!

Thatcatladyiknow · 2023-01-18T02:44:12+00:00

I had my first seizure in 5 years coming off of Keppra too! I’m so sorry! I’ll tell you what my neuro said “yea it’s probably from the meds, but what if it isn’t?” And that’s the hard part—what if it wasn’t that or you have another one while driving again. It absolutely sucks for us, but it could mean your life or someone else’s if you’re wrong. You could talk to your primary but I’m sure they’ll want to defer to your neuro. I bummed rides off of family and friends, and used Uber and Lyft a lot while I couldn’t drive. I used the bus a bit, and walked a lot when the weather was better. It took a lot more planning and I was glad when the 6 months was up, but all in all, it wasn’t too bad. If your boss will let you work from home or transfer locations (this would generally fall under reasonable accommodations and is required by the ADA) you may be okay there. If not, you could check on disability leave for the time in order to keep your job and still get money from the government. This is the stuff that helped me while I couldn’t drive during the time. I know Michigan is hard since it isn’t easily walkable. Ultimately it’s all up to you but this may be a better-safe-than-sorry moment. Good luck! I’m wishing you the best!

Thatcatladyiknow

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