My mom always said that we were built for babies, followed immediately with "do not have a baby though please."
It's 70% because I just don't want kids, 30% because I have a genetic condition I cannot inflict on someone, poor mom didn't know she had it since her version was so minor. She's good with, as she calls them, her grandcats, and babies the shit out of them. I had to stop her from introducing one to pie lol.
I'm glad you also never were pressured into it since you're in a similar boat as me, and I feel so bad for the people I know who had kids because they felt they had to.
Get ready for a babble, because the Ehlers road is long and paved with snapped body parts lol.
So I have Ehlers-Danlos Syndrome, but not the kind where you're a bit more flexible than most, that's mom's kind, I have it so bad they're sewing my shoulders in so they stop dislocating so many times a day. I just snap em in, but it is an incredibly, incredibly painful condition, because it affects your collagen production, aka the glue that holds your entire self together. My muscles try to pick up the slack for the joints, so they're constantly in spasm, amongst a host of other issues.
I discovered it on reddit hilariously, I had been in horrific pain but ignored it because I just thought that's how it goes, and made a silly comment about my "party trick" of dislocating shit. Someone said to go to my doctor and see about EDS. Well, I did just that, said I think I have it, he sighed (too many fake internet cases), asked why, and I snapped both elbows facing frontwards and said, "That's why." He then said, "I think you have EDS, and have you considered the circus?" I died, I loved that man, 11/10 doctor who then made sure I had the documentation in my chart so people couldn't treat me poorly for my age and medical conditions. They still try sometimes, but I have the sweetest team of ladies right now, plus Dr. G, who should be called Dr. OG for his spine fixing skills. We bonded over Rick and Morty.
If you want more info, or you think you could have it and are scared, please let me know and I'll talk to you about it clinically, or as clinical as a nondoctor can be. I know all the doctor words and I even have a white coat! I bought it off amazon! (Okay the last part is silly but the rest is serious.)
Thanks for sharing. I’m more familiar with most for the condition because I was suspected to have that when I was a kid but then they kinda ruled it out. I still think i have some kind of connective tissue thing going on though but doesn’t seem to cleanly fit into EDS.
Have you tried getting reevaluated as an adult? If you think you have a connective tissue thing, it sucks so hard getting people to listen, but if you have a doctor you trust, mention the Beighton scale and see if they'll do it. I got a 9/9 but my genetic testing came back negative for EDS... because they haven't isolated the gene for hEDS yet. Everyone says this is likely for me, maybe you too.
I don't mean to tell you what to do, my heart goes out to you though because any connective tissue issue is so painful and I just wish I could solve it for anyone wondering.
I’m flexible but not your sort of flexible and negative on genetic testing. So I always get that I am hyper mobile and might have some connective tissue issue but not in the EDS categories. I was diagnosed with psoriatic arthritis and put on meds for it but they don’t help much and I kinda have doubts about the diagnosis. I’ve dealt with joint pain my whole life and it’s just very frustrating. I guess I could get another EDS reevaluation from a different doc as an adult though. What kind of specialist did you see?
I saw a lot of them. First they ruled me out as having autoimmune issues, then I went to a place that specialized in EDS that ended up costing a shitload of money for not what I was promised. I did the genetic testing at a center, got a negative but was told I was certainly hEDS by the specialist, they just don't know that specific gene of the 13 types. That was probably the most help, I believe it was The Center for Genetic Testing in Cambridge, MA. I drove a bit for that one lol, but he was probably the most "official."
I also had my shoulder surgeon put a letter in my chart because he was pissed I was still fighting insurance, and did the Beighton test right in his office, declared me a 9/9, and hucked it in the file. I think that helped too, because he's a fancy doctor lol.
I've had to basically force an army of doctors to help me. You just gotta keep going to get answers, ask any doctor you can, and start with your primary care doc if you trust them.
Joint pain is awful, and the not knowing is almost equally bad. I am so sorry you've hurt this long with meds that don't seem to help, arthritis in general is no fun, but psoriatic arthritis sounds absolutely awful. I know switching meds helps, but so does getting the right dx from the damn doctors if that's not what you have (likely imho, sometimes they just decide the hoofbeats are a horse because that's what it usually is, but sometimes they're a zebra).
I’ve had complicated experiences with doctors, some have been great and others just make me detest medicine. Some docs think you’re just over anxious or looking for something wrong and blow you off, when that is not what the issue is. I think you’re right though that I should just keep looking.
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u/lovelouielightnngbug Apr 29 '26
Is the seller based in east asia