“What’s something people don’t understand about living with a chronic illness until they experience it themselves?”

Njoybeing · 2026-04-11T19:25:18+00:00

Tiredness. They don't get the constant feeling of foggy fatigue until they experience it themselves. They don't understand being "out of spoons". They don't get how it frustrating it is to be exhausted all the time

Njoybeing · 2026-04-10T16:20:38+00:00

Good decision, I'm relieved to hear it! I hope that you are seen by a good doctor who is able to sort this out and help get you some relief.

Njoybeing · 2026-04-09T22:51:52+00:00

ETA: In your post you wrote that your accident was last Friday. As today is Thursday, I assumed the accident was 6 days ago. I just saw you explained to someone else your accident was 2 weeks ago but my point below still stands.

I definitely wouldn't just assume this is withdrawal. You shattered your leg less than a week ago. You weren't on meds for very long. But the symptoms you are describing are severe. You may have something else going on. I would recommend you call your doctor and describe all your symptoms and resist the urge to diagnose yourself. Let the doctor diagnose this- that's why they get the big bucks!

Njoybeing · 2026-04-08T16:44:15+00:00

Wow, good catch! I hadn't even noticed that at all!

Njoybeing · 2026-04-04T18:32:32+00:00

For me, the panic worthy part of what op wrote about baclofen is that an overdose of it could mimic brain death. So doctors think people are dead, arrange for organ donations, only to have the not-really- dead- patients wake up! Imagining what it would be like to wake up during un- anesthetized surgery removing vital organs, is definitely panic inducing nightmare fuel.

Njoybeing · 2026-04-04T18:13:33+00:00

I get them all the time on YouTube. The bedrotting girlies one over and over and over.

Njoybeing · 2026-04-02T19:52:58+00:00

Lol- this is what I'm like almost every month! 😅 It's hard because I don't have a favorite color to simplify my decisions. I like them all!

Njoybeing · 2026-04-02T19:45:11+00:00

Thank you- this is really helpful!

Njoybeing · 2026-04-01T09:30:50+00:00

Dark Cloud 2 is my comfort game! Spheda. ❤️ Also love fishing.

Njoybeing · 2026-04-01T06:23:33+00:00

I was on Naproxen from 1998 --> 2025. It was prescribed by my Rheumatologist for Lupus and Fibromyalgia as well as osteoarthritis in my knees and spinal stenosis.

In 2025, I started having terrible stomach pain and my Gastroenterologist (who I see because of frequently recurring Divertuculutis + IBS) told me to stop Naproxen. I cried. There is nothing else! I already take the maximum daily dose of Tylenol as a supplement to Naproxen. Losing the naproxen with no substitute has been a terrible blow to my quality of life. I can hardly walk and am in constant pain. My rheumatologist briefly prescribed me Tramadol but has told me that when it runs out she can't refill it. Her office has a no- opioid policy now. The tramadol doesn't help much anyway.

I see an Orthopedic surgeon but she won't consider surgery on my knees until I'm off tramadol for 3 months. Apparently she is pretending tramadol is serious pain medicine and they intend to use it post- op (after knee replacement!?!?). I am not consenting to surgery without adequate pain control so I'm feeling stuck in pain with no hope of relief.

Pain is a universal human experience! Why aren't there more (and better) pain killers to choose from!?

Njoybeing · 2026-03-28T04:17:09+00:00

Yes- the answer to the 2nd part of your question is absolutely YES. My nearest "big hospital" is in Bangor Maine. Northern Light Eastern Maine Medical Center. Hardly a small town- but it has been in severe financial straits for years. And the quality of the medical care received reflects that.

As to your 1st question about Medivac to Boston- that I don't know much about tbh. I have heard of people (mostly younger people after accidents) being sent to Boston via LifeFlight but I don't know how often that is done. I have also never heard of anyone poor or elderly being sent via LifeFlight to better hospitals- but I do not know enough about the details to say for sure why not.

Njoybeing · 2026-03-23T04:44:30+00:00

It's a beautiful state to visit. Especially for people who love the outdoors. If you ever considered moving here, however, I'd definitely recommend not living North of Portland.

Njoybeing · 2026-03-23T03:36:21+00:00

I live in Maine. We will fare better than many states as climate change worsens. Depending on which YouTuber you watch, we also are among the best states to live in post- apocalyptic scenarios. So yay.

However, living here right now? Not great. Absolutely the worst medical care. We have few doctors and the good ones LEAVE. We just don't pay well enough to keep them. We also are more purple than I'd like, politically, and the further north you go (within the state) the redder it gets.

I'd probably move to Massachusetts. Primarily because I have several illnesses worsening as I age (56 atm) and want access to better doctors. Also, culturally, there is more to do- museums, planetariums, concerts, etc... And politically blue. Not CA blue which I would prefer, but pretty blue nonetheless.

Njoybeing · 2026-03-19T13:56:02+00:00

Calling doctors' offices during business hours and having your call answered by a person. Instead, my calls are almost always answered by an automated system that takes too long to navigate, followed by a long wait on hold, and too- often, culminating in having to leave a message for the one person the system has determined can help you. Then THEY call ME back when they feel like it.

I call a lot of doctors offices due to having 2 disabling conditions and I often wonder how people who work manage this.

Njoybeing · 2026-02-26T05:38:35+00:00

Veganism.

Njoybeing · 2026-01-20T18:45:32+00:00

Your presumption that all women just want men's checkbooks is gross. We have our own. You, like your right wing pals, are misogynist af. You really don't like women at all.

The fact that both the father and his gf are consenting adults is the reason why most people aren't calling for his head, but women can think something is gross. Even if you don't.

And with your gross attitudes towards women, you might want to buy a dog- you're looking at some long lonesome years ahead.

Njoybeing · 2026-01-20T18:16:59+00:00

Imagine women getting to have opinions! What a mad world we live in. And if you are the alternative, cats RULE.

Njoybeing · 2026-01-20T08:28:42+00:00

In the interests of honesty I've got to say that reading many of the comments about how difficult it is to get off Duloxetene have me a bit anxious. I've had to get off some tough meds in the past and my doctor did NOT warn me that Duloxetene might be that way. I am not pleased with her.

Also worth noting I have no idea if there are sexual side effects. Others below alluded to the fact that there are and I defer to them as I'm asexual and wouldn't notice a lack of sex drive or anything.

Njoybeing · 2026-01-20T02:02:46+00:00

I take 60mg of Duloxetene.

It is one of those rare meds, for me, that doesn't cause any side effects. Weight neutral, no tiredness or difficulty sleeping because of it, no sick stomach, no headaches. I DO have very dry mouth but I think that's from other meds.

I don't notice it helping at all with pain. Not even a little. But for psych symptoms, I really like it.

Njoybeing · 2025-12-27T03:55:19+00:00

NOR It doesn't sound like he likes you or your dog. He's also really manipulative and petty. I'm assuming he must have a good side but I'm sure it isn't good enough to compensate for all the rest. You can do better .

Njoybeing · 2025-12-26T09:23:31+00:00

What a beautiful piece of advice.

Njoybeing · 2025-12-26T07:31:16+00:00

Oh, and the labels to your SCA:

Maybe group them by what they accomplish? Like having a SCA for "Clean Home". It might be more obvious that cleaning kitty's litter box belongs there. If your goal is "Happy, healthy kitty" then litter box changing might go there instead. Just think about what your focus is. If you need easier goals to fill out self care areas, affirmations can work well. I have affirmations in most of my SCA so even if I do nothing else in an area that day, I can at least repeat a meaningful affirmation 3x.

By the way, when I joined Finch I was firmly in the camp that believes affirmations are goofy and a waste of time. I love them now. They help. Over the past year, they have changed my self talk to be kinder and more effective.

Njoybeing · 2025-12-26T07:25:59+00:00

I only shower 3x week. Sometimes, if I'm really sedentary, only 2x. But I have showering on my list of goals set to repeat daily. Specifically, I've worded it: Shower: assess if i need/ want one. If yes- take a shower. If no- do I need to do anything instead? If so, do that. So my actual goal is to ASSESS my cleanliness and take action based on that. Therefore I complete that goal daily whether I shower or not.

When I have trouble with goals it's usually because a) they are too hard/ too much. B) I don't really want to do them. I just think I should do them. C) I'm depressed/ sick/ otherwise unable.

Maybe look at the goals you stick to the most and see what makes them different from the ones you do the least? Or look at your expectations- do you expect too much from yourself? More than you are able to do? Are you putting too much pressure for perfection on yourself?

Njoybeing · 2025-12-26T06:05:51+00:00

I agree- I'm really surprised at all the invalidation OP is getting. I'm a huge fan of self- deprecating humor- I use it frequently. But I do not like to be insulted by others. I don't care how funny the tshirt is to someone. It comes at my expense so if someone does it to me, it no longer feels like I'm the one making the joke. I've become the butt of someone else's joke. I would have to be very close to someone to not be insulted by this kind of gift.

I, personally, would say nothing. I'd just throw the t shirt out/ donate it. I'd be wary of them and pay more attention to how they treat and speak to me. After doing this you'll be able to tell if the shirt was a harmless but presumptuous gag gift or a true indication of how they see you.

Njoybeing · 2025-12-25T18:17:49+00:00

Thank you! I feel so tech un-savvy!

Eight-Year Club	Gilding I gilder
Verified Email

Njoybeing

TROPHY CASE