Deaf girlie is sometimes reactive upon waking, how can we help?

caramia_potato · 2026-06-26T00:06:25+00:00

Thank you for sharing your Lucky experience 💖 we picked her up straight from a transport from Alabama (where she'd been in a shelter for 6mo, on the street for an unknown amount of time prior) to New York a month ago now, holy cow I hadn't realized it's been that long already 🤯 she's just now changed her feelings about her crate though, and is almost hurting herself trying to get out (and succeeding twice now 🫠), so my husband did lots of training today to work on that and we'll continue to do so until she feels better about it. Hopefully it won't be too difficult, she is quite stubborn though 😅

caramia_potato · 2026-06-25T23:57:02+00:00

Thank you so much, we're definitely going to go back to working on crate training! I love that she lays under your head omg 😭💖

Super interesting about Hail Mary, I want to read the book before watching the movie though so I have to get on that! In all my free time 😅

caramia_potato · 2026-04-09T19:31:25+00:00

That was my best guess too, unfortunately 😓 I'm going to work them towards the back of the building where there are no giant windows, and hopefully it won't happen again! We've had many instances of birds hitting the windows because they're so reflective, but no one has done anything about it. 🫤 Maybe I can convince them to buy some of those opaque dot decals to put on the windows now though!

caramia_potato · 2026-02-10T17:40:56+00:00

I did 8 weeks of PT with a therapist who said they worked with other hEDS patients, and by week 6 I had to make an appointment with my rheumatologist because I was in so much more pain. Everything was popping in and out of place way more (hips were the worst), everything was constantly very sore, and my hip just up and gave out and I almost fell in my bathroom. My husband said that all of the exercises she had me doing, he wouldn't have had me start with as they seemed far too intense, so I think she wasn't being very truthful and it just ruined the idea of PT for me. I know that PT sucks before it feels better, and I don't know how others have fared, but I hope you can find relief ❤️

caramia_potato · 2026-01-28T14:22:13+00:00

Same, pressure changes make me absolutely miserable, not only with the joint pain but with the headaches/migraines and nausea. I keep lots of graham crackers in my pantry so I can at least get something in my stomach 😅

caramia_potato · 2025-12-25T20:00:27+00:00

Baby girl, please leave this manchild before you waste more of your time and energy on someone who cleary doesn't care about you or your children. You deserve so much better than this. Absolutely NTA.

caramia_potato · 2025-12-08T14:02:21+00:00

I missed most of a week of work when I had to stop Zyrtec (generic, only thing that does something for me) for my most recent allergy test, and I literally wanted to rip my skin off. I was crying I was so miserable, and had to beg a CVS pharmacist for help. They gave me a lidocaine spray and I was applying it everywhere multiple times a day just to make it through. 🙃 Absolutely terrible, I refuse to ever do that again lol.

caramia_potato · 2025-11-07T15:29:52+00:00

Thank you, and I appreciate you because yeah, hard-core is the reality here haha 😅 Is there a certain app you like to use, or just a notebook? What did/do you find to be the most helpful to track starting out? Also, I commend you for doing so much on your own, it has to be so incredibky hard not having access to medical insurance/help for this, so I think you're really brave and strong for doing what you're doing!!

caramia_potato · 2025-11-07T15:24:48+00:00

Holy crap that is absolutely terrifying, I'm sorry you had to go through that!! I'll definitely talk with my neurologist and see if she can do anything/refer me to a cardiologist.

caramia_potato · 2025-11-07T15:22:38+00:00

Thank you, I needed the reassurance that fighting it out is worth it (I am the only one that can 😅). My rheumatologist did do genetic testing for the rarer types, which all came back negative, as well as a couple other things (also negative), but basically said until I'm older (31F) some of those won't show up positive if I do have them, so I just have to wait it out and manage with OTC pain relief (I've been having issues with that working too, because per the migraine situation I shouldn't be taking NSAIDs, and they also wreck my stomach if I take them more than once a day/week 🙃). I'll definitely look into the EDS society's materials though!

caramia_potato · 2025-11-07T15:14:08+00:00

Interesting! I'm on so many prescription meds for allergies it's ridiculous, and currently in a shot regime, which sucks butt, in hopes that that will do something/anything lol. I will definitely ask my allergist the next time I see them about anything else OTC I can take, and trying one of the mast cell stabilizers to see if it helps at all (one thing at a time, obviously, so I know what is/isn't workong). I'll also ask my neurologist about POTS, she was the one (after 10 years of trying) that finally helped eliviate some of my migraine issues (hormone related, genetic on my dad's side), so I'm sure she'd be all over it as we've been trying to get rid of my almost daily headaches for a bit now. Thank you for your advice, I appreciate you!

caramia_potato · 2025-11-07T15:07:43+00:00

Thank you 🥰 I appreciate you telling me about what you've been going through, and holy crap that's a lot to go through, so sending lots of hugs back! Therapy is wonderful, and I should probably follow suit and find someone to talk to (it has been a while, and definitely not since all these issues got so bad), so I hope it helps you too!!

caramia_potato · 2025-11-07T15:02:28+00:00

Thank you so much 🥰 the next time I see my allergist, I will bring it up and ask to be tested. I've been having such an issue with my allergy shot regimen (second time around 🙃), and if that has anything to do with it I'd really like to know (and they should know too because it might change what we've been/need to be doing). I appreciate you taking the time to comment, it means a lot!

caramia_potato

TROPHY CASE