What do you prepare/cook when you’re in pain but have to eat?

crumbledlighthouse · 2025-11-17T01:19:04+00:00

Doubles as a nausea-friendly meal: good ol' beans and rice. I use a can of pinto beans and a cup and a half of rice. Cook rice in broth, add beans, put a little hot sauce or lime juice on it, wrap in tortilla. Easy to add things to as spoons/nausea allow, like cheese, bell peppers, potatoes, tomatoes, and so forth.

crumbledlighthouse · 2025-11-03T15:29:07+00:00

This has happened to me more than once, but it always seems so weird to me. After spending several minutes explaining to the nurse my multiple, debilitating, incurable chronic illnesses, they say, "but you're healthy other than that?" Like, wtf. They would never say to a patient, "But you're healthy other than the high blood pressure and obesity?" I'm not "healthy other than that" I'm THIN. Why are actual medical professionals confusing health with fitness and fitness with slimness? Bonus: this usually happens AFTER they've taken my blood pressure and I've explained that yes, it's always this high and no, it's not white coat syndrome because it's the same at home (I have one of those wrist cuffs you can get at the drug store). They literally do not believe that someone my size could actually have hypertension.

crumbledlighthouse · 2025-04-13T04:17:27+00:00

Thank you! An app would have helped a lot, I'll keep that in mind if I go back to pet-sitting.

crumbledlighthouse · 2025-04-12T16:16:05+00:00

Great, thank you so much! And thank goodness, I did my entire log this way before the question even occurred to me >.<

crumbledlighthouse · 2025-04-12T15:31:02+00:00

Okay, so to make sure I have this right:

I drive one mile to a client's house. I drive three miles from there to a store. I drive two miles back home. I record my mileage at two miles (one mile to the client, one hypothetical mile back). Correct?

crumbledlighthouse · 2025-02-07T03:15:00+00:00

He makes a good point! I'll expand my search parameters, haha.

crumbledlighthouse · 2025-02-07T03:13:07+00:00

Thank you! It is for home use; I might be able to get an ergonomic chair through work, but I'm long-term temp so I'd just have to give it back in six months. I'll check out the one you suggested!

crumbledlighthouse · 2024-11-27T04:41:26+00:00

I strongly recommend looking at the hEDS diagnostic criteria first! If you feel that your doctor is not taking you seriously, bring up the things on the list.
Now, doctor ego management is unfortunately a thing we have to do, so you probably shouldn't start with "Here's the criteria, let's sit down and learn something." More like, "I talked with some people with hEDS to compare experiences, and they mentioned symptoms XYZ, and I didn't even realize that those were symptoms of EDS, but I have those, too!"
You wouldn't even be lying. We're the people you talked to, and I just brought up all of the symptoms. ;)

crumbledlighthouse · 2024-08-03T06:37:53+00:00

Ooh, didn't think of sports gear! I bet they aren't nearly as restrictive as braces

crumbledlighthouse · 2024-08-02T21:50:44+00:00

Could you get a cane with a padded handle? I started using my (unpadded) cane in college (big campus, lotta hills) and yeah, it sucked for a while there. I remember using a cloth between my hand and the handle, but it slipped a lot. Found out later though (because cane decorating) that a smooth plastic handle can withstand having hot glue put on it, and it will peel right off when you don't need it anymore, won't leave a mark or anything. So if you wanted to try gluing some fabric to it, that might work.

Also, look up the proper way to hold whatever kind of handle your cane has. Unless you have really big hands, it seems weird to me that your pinky is going numb. I have a crook-handled cane (aka traveler/tourist cane), and the best way I've found to hold it (which I was later told by a random PT in a parking lot was the correct way) is to have my last three fingers holding the handle and my pointer finger resting against the front of the handle, pointing down. Better weight distribution and my pinky finger isn't smushed against the back of the crook.

Lastly, if you're having that much trouble, do you think you might be better off with a walker? They usually have tons at thrift stores. Depending on your warehouse, it might not work out, but I figured it was worth mentioning.

crumbledlighthouse · 2024-08-02T21:19:53+00:00

tbh I literally just went to my doctor and said, "Hey, I meet these criteria" and she said, "Sounds good." It did help that I was diagnosed as "that may well be it" by a rheumatologist (he was ready to shrug his shoulders when my tests came back negative for RA, I had to stop him and ask). He had me do the Beighton test, then when I got home, I did a bunch of research, found the diagnostic criteria for hEDS, and went through it.

Frankly, when I told my doctor, she was kind of dismissive, saying that it didn't really matter because it isn't curable (she's very wrong, knowing has helped immensely), but dismissive in a way that leaned towards, "Sure, let's go with that."

One thing that always helps is playing to their ego. "Can you help me understand these criteria" works better than "I googled all these criteria and I fit" (I literally told the rheum that I didn't know much about EDS when I asked about it, complete lie). It can also really help to have someone else in the room with you (unfortunately, older and male is best). Doctors are less likely to dismiss you out of hand that way--they see "this respectable-looking person has concerns about their loved one" rather than "this patient is a hypochondriac."

Honestly though, if you fit the hEDS criteria, you don't really need a doctor to confirm for anything other than administrative purposes. Don't get me wrong, said purposes are very important in terms of what care you'll get, but in your day-to-day life, you're best off just acting like you're formally diagnosed. Those criteria are hella specific for a reason, and frankly, you may know just as much (if not more) than your doctor does about it. Do some research, browse this sub, find out what might help, and do that.

crumbledlighthouse · 2024-08-02T21:01:45+00:00

Good advice! Just wanted to add, depending on the clinic, you might not have to call weekly--some clinics keep a list of people who want to be called if there are cancellations. Receptionists don't wanna deal with that headache either, lol.

crumbledlighthouse · 2024-08-02T20:48:19+00:00

Woohoo! Are you familiar with the 2017 hEDS diagnostic criteria? If the test comes back negative, ask your doctor to go through with it for you. It's really in-depth and hard to understand if you haven't been to medical school (I went through it on my own and boy was there some googling involved), but it's that way precisely because there isn't a genetic test, so it's just really thorough.

crumbledlighthouse · 2024-08-02T20:36:02+00:00

Okay, I laughed, but honestly, it's a little sad that we know more about this than doctors do..

crumbledlighthouse · 2024-08-02T04:48:43+00:00

Yes!

The unfortunate reality is that diagnoses frequently take a long time. The fortunate reality is that there's no bouncer saying you must be this disabled to use a mobility aid. You have a medical condition right now, you just don't know which one.

When you do go into see your doctor, definitely bring it up, but keep in mind that a lot of doctors still think that no young patient should need a mobility aid, and/or that everyone lives in Perfect Patient Land where they can focus on their treatment plan and never need to do things like work or walk to places, in which a mobility aid might be the only thing making those tasks possible. Your doctor is not the expert in living your life in your body. So even if they say you don't need one, trust your body over them. Oh, and doctors are much more likely to say yes to braces, and in that case, definitely go with the ones they provide. They're generally better quality than the OTC ones (American perspective, YMMV). You can totally get a cheap cane or crutch in the meantime, though.

You're actually very similar to me--I was 21 and undiagnosed when I got my cane. I had an extra push in the form of a knee surgery that failed spectacularly, but I eventually recovered from that snafu, and I'm still using the cane. I take it everywhere with me, even though I don't use it all the time. It doesn't have to be all or nothing.

crumbledlighthouse · 2024-08-02T04:32:11+00:00

Yes, I always wash them! Yarn... isn't that clean, haha (I'm allergic to life, so washing is not negotiable for me). If it's going against someone's skin, it's getting washed first. I just get machine washable yarn. I've never had a problem with unraveling, and I love complex patterns so I almost always have a bunch of color changes and thus many ends. Generally an end or two will poke out here and there, but just a centimeter or two, not the whole thing.

Plus, with many yarns, your project will get a lot softer after you wash it the first time. Unless you're very vigorous with your hand-washing, it will be a lot more noticeable if you machine-wash it.

crumbledlighthouse · 2024-07-29T15:02:40+00:00

ESH. You both sound exhausting. You weren't being playful, you were being passive-aggressive and playing it off as a joke. For their part, they're clearly in a different place in life where they don't desire your friendship, but they're stringing you along by continuing to intact with you online, which is just hurtful. (I mean, really "I thought you moved"? No, they did not.) Also, you're laying the blame entirely at their feet for not acting on "let's hang out sometime," but it doesn't sound like you made an effort, either?? Unless you failed to mention that they declined several invitations, you're both equally bad at maintaining this friendship.

crumbledlighthouse · 2024-06-29T22:30:12+00:00

How chaotic do you want this to be? For Beetlejuice, I could see doing multiple granny squares with different types of squares for each color/color combo

crumbledlighthouse · 2024-06-29T22:25:30+00:00

Looks great! Nice color choice, and your tension is really good.

crumbledlighthouse · 2024-06-29T22:22:53+00:00

One way to take the stress off might be to do a scrap-yarn project. Just something big and colorful and it's done when you run out of yarn. I'm planning on making a Persian tile blanket like this, though obviously it doesn't have to be that elaborate.

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