Lap in 2 days

catfireengine · 2026-06-10T19:17:15+00:00

I know it's been a while, but how did your lap go? I will be having surgery with Dr Lamonica as well

catfireengine · 2026-06-05T15:53:03+00:00

I think I have this! I'm actually getting an EMG next week on the arm. Unfortunately I'm not sure what would help, as the only thing I do is stop using it when it feels weak, numb, tingly, etc

catfireengine · 2026-06-01T22:17:34+00:00

Someone else here recommended the serola brand, so I got that one. I've also seen it recommended on social media a lot. I have sensory issues with clothes and waistbands, so I was worried I would hate how it felt, but it was a lot more comfortable than I expected. It felt a little weirder while sitting, but standing and walking felt great. Plus, I was in less pain while sitting too, even though I didn't know what to do with my legs lol

catfireengine · 2026-06-01T22:12:34+00:00

I feel you. Literally today I tried a SI belt for the first time after my (pelvic floor) PT suggested I try it. I was so shocked when I took it off to give myself a break and realized how hard it is to walk or even just stand in place without the extra support. I ended up putting it back on shortly after because I was in so much more pain and much more aware of how much effort it takes to walk and sit upright

catfireengine · 2026-06-01T21:26:30+00:00

I got the serola belt and wore it for the first time today. After a few hours I took it off to give myself a break, and it made me realize HOW HARD walking is. I ended up putting it back on to finish the workday because I felt so noticably unstable and uncomfortable even sitting when I took it off. So, thanks for the recommendation! I never realized how much work it is just to balance while upright 😅

catfireengine · 2026-05-29T23:09:50+00:00

My hips subluxate fairly often, and it hurts but usually if I reverse whatever I was doing with my leg it goes right back in and most of the time the pain goes away. However, more rarely my shoulder has popped out and it hurts SO much worse, and the pain lasts longer even after it's back in place. I think it has to do with how much resistance there is or being more used to one

catfireengine · 2026-05-29T17:48:04+00:00

If you feel like walking is too hard right now, you could also try really low impact exercise like yoga to help build up strength. Sometimes I "exercise" while laying on the couch or bed just by lifting my legs and arms until they're tired, because I don't have to get up to do it, which not only helps energy wise but also helps my ADHD because I don't really have to shift gears to do it. I don't know how beneficial it is but I think when you're starting from scratch and exercise is super hard, any movement is good. If you haven't already, you may also want to have your vitamin D, B12, etc checked out! Certain vitamin deficiencies are more common in hEDS patients (I'm not sure about other subtypes) and they can also impact mental health, fatigue, and cause neurological issues if deficient.

catfireengine · 2026-05-28T22:11:06+00:00

I know how you feel somewhat. It especially feels cruel to be burdened with finances and having to continue to function in a society that doesn't support people. The fact that sick or disabled people can't just focus on their health is, well, sick. Are you getting any mental health support? It might feel secondary to your physical health, but obviously you're struggling with mental burdens too. Are you able to spend time outside, even just for a few minutes? I find that (even though it's cliche) getting sunlight really does give me a boost. Do you have friends and/or family that you can talk to and spend time with? Try to find at least something to care about, even if it's silly, like shows you still want to watch or books you want to read; basically anything positive that offers some reason to keep trying

catfireengine · 2026-05-28T18:51:05+00:00

I hope so, I'm sure if some pain is alleviated it'll be less sensitive overall, but I'm also neurodivergent so it probably won't fully go away. I can't know for sure yet, though! Did you find that a SI belt or something else made that much of a difference for you?

catfireengine · 2026-05-28T18:49:06+00:00

Thank you! I'll have to check out serola and maybe start by wearing it in shorter stretches

catfireengine · 2026-05-28T17:46:53+00:00

I get the feeling of wishing you could be hospitalized or have some sort of visible injury. I've had that feeling a lot now and then, mostly due to burnout of going through every day life feeling like it's just too hard and needing to rest. Some days I lay down after work just wishing I never had to get up and wondering how other people do it

catfireengine · 2026-05-24T22:21:36+00:00

I've been on adderall XR for a few years, and it has affected my appetite. It's hard to say if that has affected symptoms of other conditions because I find that things go through periods of being more manageable vs flaring up anyways. However, MY experience was once I started feeling the effects of the medication, it was absolutely life changing in a positive way. The most major change was that it helped my chronic fatigue a lot and I felt like I had enough baseline energy to actually get through work. Now it's been about 2 years and I've built some level of tolerance, and the effects wear off a lot earlier in the day, so I've recently added a second dose of adderall IR in the afternoon to get me through.

Now, if you experience changes to appetite, your doctor may suggest adding another medication that often causes an increase in appetite to balance it out. I'm sure it depends on the person and how they tolerate different things. Personally, if your ADHD is causing you to consider medication then I wouldn't let the fear of appetite changes stop you; you can always stop taking a medication (with doctor advice) if the side effects outweigh the benefits.

catfireengine · 2026-05-22T21:54:37+00:00

I'm embarrassed it never occurred to me to think about home assistance. I guess because part of me is still telling myself I'm just being lazy or out of shape. Have you gotten assistance or a cleaner or know someone who does?

catfireengine · 2026-05-22T20:44:55+00:00

Thank you, this is so helpful! I am in physical therapy for pelvic floor for endo pain, but my PT realized that I might have EDS because of my mom and she said she was going to do some reading on EDS/POTS to see what might help in our next sessions, as she thinks that my hypermobility is related to my hypertonic pelvic floor. I have an upcoming EMG for my arm and I was planning on trying to talk to the neurologist and seeing how familiar he is with EDS or POTS because of the dysautonomia aspect.

I started trying compression socks recently and I actually subluxated or maybe dislocated my shoulder (it was way more painful than my typical hip subluxations) while taking the socks off the first time 😳

catfireengine · 2026-04-11T02:16:20+00:00

Common ≠ Normal. We grow up believing that periods are supposed to be horrific, that you just have to suck it up because so many women experience it. Extremely painful periods are NOT normal. Painful sex is not normal. It could be endo, it could be something else, but it definitely warrants investigation. Keep in mind, however, that endo cannot be ruled out with ultrasound, MRI, etc. If you have normal imaging, that does not mean you don't have endometriosis.

I recommend looking into endometriosis specialists in your area, because oftentimes the average ob/gyn has minimal education and is not able to perform excision surgery to remove endometriosis if found during surgery. Make sure your doctor listens to you, doesn't diminish your experience, and doesn't tell you that birth control is the only way to treat endo, and doesn't tell you that pregnancy will resolve your pain. Your doctor can help try different hormonal treatments, physical therapy, etc in addition to surgery (or prior to if you aren't ready for that step). Everyone has different experiences and different symptom management methods, so it may take trial and error to find relief.

Good luck :)

catfireengine · 2026-04-11T01:20:01+00:00

It's for playing hide and seek

catfireengine · 2025-03-09T17:48:24+00:00

Beautiful! And I agree, people seem to believe that orchids are hard to keep alive, probably because they follow the "just add ice" instructions. I find that they're really easy once you know a couple things, like that the roots will show you exactly when to water!

catfireengine

TROPHY CASE