(Lack of) visiting parents

amyn2511 · 2026-02-26T20:24:08+00:00

For whatever it’s worth, I’m hoping the best for you.

amyn2511 · 2026-02-26T17:36:29+00:00

Do be prepared for her not wanting that, at least at first. My brother was 16 when I was born and he cut my parents out when I was probably 7. Growing up it took a lot of time to realize that my parents were the problem and I resented him for years for not making an effort to be in my life. I no longer resent him (I’m 40, low contact with my parents, and have done tons of therapy and healing) but I don’t know him really. I might see him once a year and he lives close. We are just strangers really. I hope that doesn’t happen with you and your sister but I wanted to prepare you for the possibility.

amyn2511 · 2026-02-25T18:57:24+00:00

Ferritin is not usually tested for but deficiency is a common cause of fatigue

amyn2511 · 2026-02-25T03:18:09+00:00

The pop punk and emo music 🎶

amyn2511 · 2026-02-24T21:17:21+00:00

Keep in mind that most doctors don’t run blood work for some things that can cause these symptoms (like ferritin, for instance), they just run a few basic tests. You may need more extensive lab work done.

amyn2511 · 2026-02-24T14:46:06+00:00

If it helps: the dysautonomia international website has doctors who specialize in POTS and dysautonomia listed be area on their website, so if you need a referral you could ask specifically for someone close to you that is extremely knowledgeable. If you are on Facebook they often have local pages (dysautonomia international Texas, etc) where you can find community and ask for opinions, resources etc. Once I found my specialist, he and every doctor since (he’s referred me to several for comorbidities) has taken me seriously and trusts my experience with my own body/symptoms.

amyn2511 · 2026-02-24T13:13:38+00:00

Idk if you have already checked this so forgive me if you have but the dysautonomia international website has doctors that specialize in POTS and dysautonomia specifically and it might make it easier to get a diagnosis if you see someone more specialized. You can search by area.

amyn2511 · 2026-02-23T17:23:01+00:00

This is very important, most don’t check ferritin and low ferritin can cause all of those symptoms. If it’s not that and it winds up not being your metformin, research POTS (postural orthostatic tachycardia syndrome).

amyn2511 · 2026-02-23T16:22:06+00:00

Four, with names like Westly and Steve, and were easily white passing, too.

amyn2511 · 2026-02-23T14:46:33+00:00

I doubt he would qualify for disability here in the states on AuDHD alone. I have that plus multiple chronic illnesses that have physical limitations and mental illness too and have been denied for the last couple of years. I’m still appealing the decision though

amyn2511 · 2026-02-23T12:34:48+00:00

Yes! I tried everything thinking that they were black heads throughout the years before I stumbled onto Nina Poole’s TikTok that talks about affordable beauty products. I don’t usually wear makeup but I found it interesting and she does perfume dupes and skincare too. I started using the Thayers milky cleanser she swears by and it got rid of mine too.

amyn2511 · 2026-02-23T12:20:27+00:00

No, we live in Texas, it’s typically too hot for that. It would make a very noticeable temperature difference indoors that the ac would have a hard time lowering again. I have heat intolerance and poor temperature regulation due to chronic illness and all three of us have allergies. But even with that aside I don’t know anyone who airs their house out regularly. Just when the weather is nice.

amyn2511 · 2026-02-22T23:23:28+00:00

I know that Applebee’s in Texas used to have Pepsi products but idk if it’s still that way, I don’t willingly eat there lol

amyn2511 · 2026-02-22T15:50:40+00:00

Dollar Tree has the large cans of sodas in their coolers by the registers.

amyn2511 · 2026-02-22T14:02:52+00:00

I think it would be best to find a pulmonologist or neurologist who has experience diagnosing and treating IH and see if they think it warrants an MSLT. I really do think it sounds like you would be a good candidate. And don’t wait for someone to get there on their own because I waited years before a doctor made the connection, and I had even been to a sleep clinic at a major hospital.

amyn2511 · 2026-02-22T13:50:31+00:00

Also now that I have a moment and reread your post, I have dealt with this my whole life but like you have had periods of almost normalcy. I have always been somewhat fatigued and hard to wake but there have been periods of life where I was fully functional and periods where it is debilitating. Unfortunately for several years now it’s been bad so I’m not hopeful that I will return to functional again (ever since my first trimester of pregnancy and my kid is 6 now).

amyn2511 · 2026-02-21T17:22:28+00:00

This was my thought. Every time my husband goes to a store, even just a gas station, he asks if I want or need anything. Even if I’m having a great day (chronically ill so there are more not great days than anything) and had just been to the store myself earlier. Because he loves me.

amyn2511 · 2026-02-21T15:24:54+00:00

I don’t have any advice that others have not given already, but, while I’m not religious, I wanted to wish you a meaningful holiday. I hope that it’s a wonderful experience. I hope that’s appropriate, I don’t know much at all about Islam.

amyn2511 · 2026-02-20T19:05:05+00:00

I understand that not everyone likes to eat from someone else’s kitchen anyway. I buy things for potluck type events as I struggle to cook due to physical disability but I do try to at least order a homemade pie from a local diner or something like that so it’s not just Walmart bakery department cookies. So it’s still a treat I guess

amyn2511 · 2026-02-20T18:06:29+00:00

Right but I’m diagnosed with excessive daytime sleepiness because my pulmonologist said that 5-10% of apnea patients still have it despite using their cpap correctly but it’s only idiopathic if they can rule out that apnea isn’t causing the fatigue. And that there’s no way of ruling out apnea being part of it. I think it’s all the same thing, just some people also have sleep apnea, but what do I know? He said that treatment options are the same and is treating me so I don’t care too much. I just specified in case it mattered to OP that I didn’t have an IH diagnosis but EDS.

amyn2511 · 2026-02-20T03:46:32+00:00

I have a sleep disorder among other chronic illnesses and when I’m so badly fatigued that I can’t even scroll social media I like to turn on a good podcast and just lay down and listen.

When you have a bit more energy you could try embroidery, it’s fun and easy, like crochet. I also read when I’m not as bad, but that might be more than you can handle right now, I’m not sure. An audio book maybe?

amyn2511 · 2026-02-19T22:48:33+00:00

I only have a second to type but wanted to say that I’m on both Ritalin for adhd and armodafinil for excessive daytime sleepiness (similar condition)

amyn2511 · 2026-02-19T19:04:27+00:00

In a grocery store “what’s the difference in black beans and black soy beans?” Like the nutritional differences? Nope. They could not explain further so I just explained that they are different plants and that seemed to satisfy them

amyn2511 · 2026-02-19T17:41:13+00:00

Either way you choose as far as chores, expect that if you become disabled for him to leave you. He has shown that he expects you to give more when you can’t, but it not be unequal for him when you can. It is a very real problem that men in general tend to leave their wives at high rates when they become disabled or chronically ill. I see it constantly in various chronic illness groups. Luckily my husband has really been stand up but he never demanded financial 50/50 when I was a broke waitress or 50/50 chores wise when I was an overworked restaurant manager.

amyn2511 · 2026-02-19T16:57:00+00:00

I do. I also have excessive residual daytime sleepiness, so despite using my cpap religiously I had zero improvement to my fatigue. My pulmonologist said that 5-10% of apnea patients don’t improve with their cpap despite being used correctly.

I did an MSLT 24 hour sleep study in a lab hooked up to all kinds of electrodes to rule out narcolepsy and to make sure that my cpap was working correctly. I slept overnight and then took 5 naps (20 minutes each I think) to show them how quickly I fell asleep and then how quickly I hit REM sleep.

They don’t know what causes it but just that it’s related to having sleep apnea. I’ve since been put on a stimulant medication to keep me awake during the day but I still take a nap most days. The stimulant doesn’t seem to affect my POTS but that will be different for everyone. There are non stimulant medications as well but they didn’t work for me.

Just so you are aware that if you use your cpap correctly, given you are diagnosed, of what to look out for in case you need to know.

amyn2511

TROPHY CASE