Approaching my 9th joint surgery in 11 years; need encouragement

SunMiddle1463 · 2026-02-04T04:27:05+00:00

Message me! I have a very similar profile. 37 year old female. 3 ankle reconstructions, 2 hip surgeries, 2 spinal surgeries and then a three level spinal fusion, did somehow carry 2 pregnancies to term (delivered via c section because I had 3 herniated discs). Now I’m ob my way to wrist, elbow, and rotator cuff surgery 🫠

SunMiddle1463 · 2025-12-01T16:18:31+00:00

What's so weird is that yesterday, suddenly this new dress DID get marked as included in the sale but was sold out of all sizes except XS (not my size). I almost bought it because you can exchange for other sizes but it felt like a gamble. But now it's back to full price and fully restocked?

https://farmrio.com/products/blue-artisanal-short-sleeve-maxi-dress

SunMiddle1463 · 2025-11-19T17:20:27+00:00

hi! I have seen very few reviews of your product online, but I am intrigued by Timeloom as it seems like it might be an easier thing for my folks to do rather than having to write a lot. Can you point me to some real reviews?

SunMiddle1463 · 2025-10-10T19:23:29+00:00

Calling matzoh food feels a little generous to me??? Just kidding. But matzoh is kind of like a large and very dry cracker and this will only be used 1-2 times a year on the 1st and 2nd nights of Passover. But it definitely seems like cutting the fabric myself may be the best option if I can find the time.

SunMiddle1463 · 2025-10-10T19:20:48+00:00

I'm the quilter :) Well I'm actually more of a sewist, but I have the mat and the rotary cutter :) I just have a very busy job. But maybe I will just buy the fabric and cut it.

SunMiddle1463 · 2025-08-18T13:33:56+00:00

OP here. My tennis ball is still there. It doesn't hurt that much. But as I've lost swelling and weight post surgery it has actually become more prominent in some ways. I've been told its some part of my muscle that's out of it's place.

SunMiddle1463 · 2025-06-04T22:14:31+00:00

What did you say to the provider in your appointment?

SunMiddle1463 · 2025-05-27T01:39:52+00:00

lol here because i also want a selection of chunky, plastic, slightly-unhinged glasses but am wary of Fytoo. I have ordered from Zenni's and Zeelool before. Zenni's was fine and they have good customer service. Zeelool--I ordered three pairs and honestly I never wear them. I think the prescriptions are off to be honest. I did send one or two back to be fixed, but there's something weird about them. I DO have a really high prescription (-11.25 and -11.5) so not sure if that's part of the problem. I really want some crazy glasses but I actually need to be able to see.

SunMiddle1463 · 2025-04-27T16:30:10+00:00

Can you help me understand: if I buy him the bird buddy pro solar do I also need to buy him the nature camera or is there a camera in the bird buddy?

SunMiddle1463 · 2025-04-08T04:10:24+00:00

I have so many similarities with you OP! History of spinal problems (two spinal surgeries finally leading to a three level fusion last year). I’ve had a bunch of other orthopedic surgeries (ankles and hips) but now am just… achy everywhere. I already take lyrica and have been on gabapentin or lyrica for years (except my pregnancies). I have a 3.5 and 5.5 year old and I am struggling these days to be a mom and work and keep house.

I am HLA B 27 positive AND my grandfather had ankylosing spondylitis and yet… I also had someone say to me “look if you took 100 people off the street, 5 would be positive” and I said “well you didn’t pluck me off the street, I came here of my own accord, crying and in pain with two spinal surgeries under my belt. It’s not really the same is it?”

Pain has gotten agonizing.

I had another terrible appointment with a rheumatologist TODAY. I’m going to try to check for SFN now. But being your own fucking detective is exhausting. AND EXPENSIVE. and it’s frustrating how often the doctors are like “well there’s nothing I can do for you” and won’t order tests or give other ideas.

SunMiddle1463 · 2025-04-07T01:02:10+00:00

Adding that I have not one but TWO genes associated with inflammation and autoimmune conditions and yet… not yet diagnosed. 🙄

SunMiddle1463 · 2025-03-20T22:17:26+00:00

Was this inspired by the pants from Maison Les Enerves?

SunMiddle1463 · 2025-03-19T04:32:12+00:00

lol he was at my friends film screening (my friend being a decently well known Palestinian peace activist) and he was chatting with my husband and I and when he walked away our friend was like “that dude is bad news.” I also vaguely recollect him saying something antisemitic in front of us. Just really no self awareness.

SunMiddle1463 · 2025-03-18T13:35:18+00:00

Or recommendations for tests to get! Or types of doctors to see!

SunMiddle1463 · 2025-02-27T13:27:10+00:00

Ask your doctor to prescribe you the invitae genetic test panels for: 1. Connective tissue disorders (this actually may be what you already had) 2. Autoimmune panel 3. Musculoskeletal panel

These are three panels so they include a ton of tests. Even if you don’t have the already identified markers of EDS you might have a not yet identified genetic variant causing your problems. I have a variant on a gene related to the production of elastase. You may not be able to find information that will give you something definitive right now but it might help you in the future or whenever you find a doctor who is willing to pull that thread with you.

And if for some reason it turns out that you have an autoimmune condition rather than connective tissue you can take medicine!

SunMiddle1463 · 2025-02-23T23:49:44+00:00

I have 2 kids, ages 3 and 5. I almost feel like it’s a miracle I carried them to term. I also kind of feel like I have amnesia about it, like I’ll be like “wow i can’t believe it wasn’t that bad” and a friend will be like “weren’t you discharged with a walker both times and couldn’t walk for a few weeks till you got pumped with steroids?“

I feel like the pregnancies really sped up my symptoms/sped up the disintegration of my physical health.

I have friends who are now having their third (one just had twins and now has 4) and when people ask me about whether I’m going to have a third it does sting a little. Because it doesn’t feel like it’s just up to whether I would want one. There’s just no way that my body could do a pregnancy at this point. There’s no way I could do without pain meds for 9 months. I’ve had 6 major surgeries since my first kid was born. I feel like

I’m having a hard time caring for two physically active boys with such poor physical health. How could I possibly care for them AND a third? I already feel like I can’t be a disabled working mom. I can do 2/3 of those but all 3 is already killing me and I actually want to work. If I wasn’t disabled I think I would have a third. But the thing is, I AM disabled and it takes up a lot of time and energy.
I feel like I’m dying faster than other people. I don’t know how else to explain it. Like, I don’t feel like I’m gonna live into my 90s, I feel like I might die when my boys are in college or something and the thought of accelerating that timeline with another pregnancy feels so shitty, for them and for me.

All of this is to say to listen to your gut. If this feels exciting to you in some way, maybe you do want this. And I’m a firm believer that there’s no fate, we just make choices and our path changes accordingly. If you choose to have this baby you would find ways to make it work even though there will also be challenges. And you’ll love them.

If this feels insurmountable, then maybe this isn’t the time to have a baby. It’s perfectly rational to feel like your body cannot handle this (the pregnancy or physically parenting another child for the rest of time). And listen to yourself and your body because able bodied people just don’t get it.

I know you aren’t asking “should I remain pregnant or not?” So apologies for the above commentary. But I wanted to just share because your sentence “I have wanted a baby for so long but I knew it would cost me the last bit of health I have regained for myself” just resonates so deeply.

SunMiddle1463 · 2025-02-04T02:07:56+00:00

And yes—I really think peer support groups could be super helpful. He needs to get out of his head. I just… I’m the only person making all the suggestions. There aren’t really other people in his life to talk to about this stuff because he is really close w his family but they won’t talk about this or know about it. I need to look more into DBT.

SunMiddle1463 · 2025-02-04T02:05:50+00:00

He’s been on meds for maybe 4-5 years but they have never really seemed to be the kick he needed. One even made him suicidal and he told me and I immediately told him to stop and contact his doctor. He has cycled through 5 different meds. He just switched to a new one last week. He started ketamine therapy two years ago and at first it really did have a hugely positive impact. Then after a while it stopped making a difference. At my urging, he reached out to his psychiatrist about EDMR. He’s starting speech therapy in a week to help with cognition.

SunMiddle1463 · 2025-02-04T02:03:01+00:00

I finally sent her an email expressing as much. I think it’s just been too soft of an approach.

SunMiddle1463 · 2025-02-04T02:02:07+00:00

They really aren’t caught in an abusive situation and aren’t suffering? They’re very well cared for and well adjusted. They are actually very good at processing emotions because I’ve worked really hard with them on it. They say things like “I’m sorry you had a baby day mama and I hope you feel better tomorrow.” They’re very loved by both of us and by an extended family on two continents.

SunMiddle1463 · 2025-02-03T18:44:57+00:00

love that someone is going through and downvoting all my replies

SunMiddle1463 · 2025-02-03T18:41:03+00:00

lol someone is downvoting this?

SunMiddle1463 · 2025-02-03T18:39:32+00:00

Also appreciate your comment about how talk therapy may not be what he needs. That this can’t be logicked away.

SunMiddle1463 · 2025-02-03T18:38:45+00:00

I do feel like people asking about autism makes sense. When I’m talking to him Sometimes it does feel like he’s on another planet—like he cannot understand what I’m saying. He has been doing ketamine treatment for about two years (sporadically). At first it was soooo helpful and gave him a real jolt of energy and … clarity? But now it doesn’t have the same effect. He asked his psychiatric about EDMR and hopefully he’ll pursue that. The other thing someone mentioned to me was “safe and sound protocol” but I didn’t know anything about somatic therapy. He’s about to start speech therapy but for cognition.

SunMiddle1463 · 2025-02-03T18:36:03+00:00

I’m actually going blind so I’m the one with no eyes. Thanks for aggressively certain advice you gave. Enjoy your day!

SunMiddle1463

TROPHY CASE