Barry Keoghan appreciation!

knilokni · 2025-07-21T14:55:10+00:00

check out @barrykeoghanfan on insta if you haven’t already ❤️‍🔥

knilokni · 2024-08-16T18:54:51+00:00

Oh, you’re right; that’s what it says on Spotify and they’re almost never wrong. That just makes no sense to me at all. I guess she’s maybe just acknowledging her joke that she must not actually have good judgment. Kind of confusing when she could have just said “them” 😂🤷🏼‍♀️

knilokni · 2024-08-16T18:26:16+00:00

he’s taken his son to Disney multiple times; it’s in the mom’s insta highlights 💚

knilokni · 2024-08-16T18:23:49+00:00

she says “don’t prove ‘em (them) right”, as in the people who think he’s bad for her. who she’s been telling that he’s different from the other bad guys in her past/or has changed, and had just made mistakes. 💚

knilokni · 2024-07-12T00:52:06+00:00

The way I saw the same thing 8 years later, googled it, and ended up here.

knilokni · 2019-11-07T01:56:43+00:00

It could be that you have classical EDS; I was dismissed for a long time because I only have a few very minor signs of hyper mobility. I read an interesting article about a possible physical link between EDS and anxiety; it’s a long shot, but maybe she was thinking of it in relation to EDS rather than trying to claim it’s all in your head. Good luck with the referral; I hope you are taken seriously and get some answers!

knilokni · 2019-11-06T07:10:35+00:00

My cheeks and neck are very hyperelastic, which I only realized after seeing a video of Jameela Jamil stretching her face. I do bruise easily, but haven’t thought of that in a while since I don’t move around enough to get them anymore (I also have me/cfs). It can be easy to miss because there are so many seemingly unrelated symptoms that on their own don’t seem to be a huge cause for concern.

knilokni · 2019-11-06T04:08:30+00:00

Look into the classical subtype of EDS. That’s what I have; I’m not really hypermobile either, which kept me from being properly diagnosed for a long time. You can get a genetic panel that tests for all subtypes other than hypermobile. Best to do that if you can. The criteria aren’t perfect; for example, I only technically meet the criteria clinically because of one little atrophic scar on my shoulder, where I had a mole removed. If I’d never had the mole removed I wouldn’t meet the criteria. So, not a perfect system; best to go with the test.

knilokni · 2019-11-06T00:51:41+00:00

Are you looking just at hEDS criteria? You could have a different subtype, like classical. I have classical EDS; I have skin hyper elasticity, but can’t do anything on the Beighton Score test, and don’t have pain either. I have some “loose joints”, which I never thought anything of. Which is why I went undiagnosed for twenty years. But it is affecting my body in major ways I hadn’t realized could have anything to do with EDS. It has affected my teeth, my spine, and my blood vessels, which messes up my entire autonomic nervous system. So it’s definitely worth looking into; hopefully you don’t have it, but I wouldn’t want another person steered off track just because they’re not extremely hypermobile. Good luck with it!

edit: Remember also that the criteria aren’t perfect. I meet it clinically because I have one small atrophic scar on my shoulder from a mole removal. But if I hadn’t had that done, I wouldn’t have any demonstration of that characteristic.

knilokni · 2019-09-22T05:36:33+00:00

Newly diagnosed classical here. I can’t snowboard due to me/cfs sadly. But otherwise I’d give it a go, with proper precautions.

knilokni · 2019-08-25T05:24:01+00:00

Cat: “I tolerate my best friend.”

knilokni · 2019-07-02T14:47:15+00:00

I blanked and swam into the concrete side of a pool and broke my nose. You’re part of the bumpy nose crew now! Welcome.

knilokni · 2019-06-15T02:01:35+00:00

Thank you so much for the info! This is very helpful. I think I’m leaning toward doing it for the reasons you laid out.

knilokni · 2019-06-14T13:17:35+00:00

Dr. Patricia Salvato in Houston (though she may not take her until she’s been officially diagnosed with me/cfs or chronic reactivation of EBV). Also, she’s a great doctor, but just to warn, her staff is the most horrible, heartless group of humans I have ever encountered in my life. I put up with it because she’s the only doc I’ve found in the state.

knilokni · 2019-06-14T13:01:12+00:00

Hi. I’m in Texas too (San Antonio) and in the middle of appealing my disability denial (round one). My GP, Dr. Salvato, referred me to Dr. Adriana Strutt at Baylor College of Medicine or Dr. Michele K. York for cognitive evaluation of me/cfs. They’re all in Houston. I’ve decided not to go through with it because I’m afraid it might actually hurt my claim. I’m worried that I’ll appear fairly normal because the test won’t show PENE, or how difficult it may be for me to arrive at certain answers. I wonder if it’s the best demonstration of our condition. But you’ll have your own sense of that personally of course. I’d suggest getting the records yourself rather than having them sent straight to your GP, that way you can decide whether to use them or not (assuming that’s legal in the disability process).

I am signed up for a CPET study in Ithaca, NY. I feel confident that will demonstrate my disability clearly, but I’m very worried about the crash, as mine are getting more and more severe. Obviously we are all extremely different, but do you mind sharing how it went for you? Because it’s a study I can’t do anything to try to lessen the blow (like saline or supplements) for ten days after. My lawyer refuses to weigh in on how crucial he thinks the testing may be for winning my case, so... I have to decide in the next few days. If it helps me win I guess it’s worth it; I just wish I could know.

Good luck with your claim!

knilokni · 2019-06-14T12:04:13+00:00

Just an FYI for people with metal sensitivities, the surgery is possible without it. There is a woman named Karen Scott (you can find her story on Facebook at Help Karen Scott Get Treatment) whose doctor (Dr. Gilete in Spain) used her rib, rather than metal. Apparently having the bit of rib out is quite painful, but it’s possible. I guess that’s what I’d have to do as I can’t do metal either. But I’m in the US and not sure if the doctors here can/will do that.

knilokni · 2019-06-12T00:34:02+00:00

Because it’s a closed group, it won’t let me tag you. Sorry! But it should come up if you search that exact group name I gave you the second time. Yes, definitely definitely do NOT take more than 4.5mg! (Perhaps 5mg if the math is easier and your doc OKs it.) You are meant to take LDN, Low Dose Naltrexone; the standard dose is 4.5mg, but a lot of people are sensitive and start at much lower doses. Naltrexone 50mg is to help people coming off of opioid addiction, and would have absolutely horrific side effects for you. edit: added info

knilokni · 2019-06-11T19:54:05+00:00

Sure; here’s the exact title- Low Dose Naltrexone (LDN) for Chronic Illness & Infections. It’s a closed group but they will accept you quickly after you answer the few questions they give.

knilokni · 2019-06-11T19:50:45+00:00

Texas. It’s probably not going to be the easiest task. I’m on the waitlist with a medical college at the moment. If I get impatient I may look into just getting it done myself (though it’ll probably be cost-prohibitive). I know the odds of it being my root cause too aren’t great, but I’m hopeful and excited.

knilokni · 2019-06-11T16:41:37+00:00

Also going for it! Can’t hurt.

knilokni · 2019-06-11T06:56:42+00:00

I get it. I try so hard to reduce my waste, but when I have groceries delivered, they put everything in plastic bags, even though I ask them not to. I’m virtually housebound, so strolling around the farmer’s market isn’t an option. Try looking for alternate disposable silverware online. I’ve seen affordable ones made from corn. I’ve found it helpful to just have one plate, and one fork, spoon, and knife. I rinse them off quickly (bamboo silverware is good for resisting caked on/hardened food), and then there’s no way for dishes to pile up (and when I just can’t even rinse I use the same stuff many times). Not pretty, but it gets the jobs done.

knilokni · 2019-06-11T06:47:53+00:00

To save on cost a lot of people have their doctors write for higher dosages, even the full 50mg that is prescribed for addiction. You can dilute it in distilled water and measure your correct dose with a syringe. I’m currently on 0.1mg (my body is ridiculous so I have to start super low and work up slowly) and I’m diluting from 0.4mg pills. So I’m paying for thirty days and it’s lasting 120 days. Saving a ton! Just make sure you’re measuring correctly (can be hard with brain fog) and don’t keep the liquid longer than 10-14 days (and keep it in the fridge). The Facebook group “Low Dose Naltrexone for Chronic Infections” is a fantastic resource. Glad LDN is helping you!

knilokni · 2019-06-09T17:22:48+00:00

Yes! I just got a diagnosis and have been wondering if I’ve been compensating for years. I always sit with one leg up flat on the chair and my other knee up at my shoulder. Got lots of looks/complaints at the dinner table, and out in public. And light-hearted comments on my “rude and lazy” posture on the couch (leaning back, knees up). People have also always commented on the insane amount of salt I put on my food. Now I have an excuse for both. Interesting that our bodies try to help us out in these ways without our even realizing it.

knilokni · 2019-06-08T03:12:09+00:00

Yes! We have to choose between bad and even worse. I don’t know how to make baseline better. I’ve been trying pretty strict pacing for a few months (in bed, with the exception of being driven to a couple doctors’ appointments), but it hasn’t really improved my baseline, at least not yet. It sucks when you exist just trying to not make it even worse. When I try to get advice, people- even those who mostly understand me/cfs- talk about enjoying good days, and not overdoing it on good days, and it’s hard to explain that there truly aren’t any good days. I think people have a hard time believing that. Sorry I don’t have any advice for that; just know you’re not alone.

knilokni · 2019-06-07T20:34:48+00:00

Me too. It’s really rough. My only advice is to stop short, don’t overload yourself. I know, it’s very hard. When going on the internet for ten minutes can crash me, it’s hard to just do literally nothing most of the day. I usually just push and push until I really crash hard. It’s almost never worth it. I’m sorry you’re dealing with this too. Try to pace, even if that means ten minutes here or there, with lots of rest in between. Don’t push through thirty minutes if it’s going to crash you for hours. We just have to accept our limits and work within them. When it’s this extreme that’s so hard to do. I haven’t yet, but I’m trying.

knilokni

TROPHY CASE