Where are my other chronically ill SZs?

This has always been my favorite analogy.

I’m making my list for my doctor’s appointment tomorrow and it’s frustrating trying to pick and choose what to prioritize. Because even though I get 50 minute appointments, we only have time to talk about a few things. :sob:

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This is so true.

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I’m currently debating if mentioning that I’m sweating like a white girl living in Mombasa in August is important enough to mention to my primary, or if I should wait a month and tell my obgyn.

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This analogy is spot on.

No matter how many things I tell him about something new always comes up. Old problems reappear. When get out of his office and return home I realize something I forgot to mention to him.

Recently I am finding it real useless.

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I always make lists to bring with me. I usually start it a few days before. But even still, I rarely get through all of it. Even if it gets briefly mentioned, it doesn’t actually get discussed or anything.

Get a quick notes app for your phone, it’s a huge help. I used to have a post it note type one, but now I just use Google Keep.

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Exact same thing with me. Used to make list on small piece of paper. Now use notes stored in phone.

Have difficulty discussing all topics on list.

Even things he addresses I felt overwhelmed listening to him. I tell myself this is no use. It’s not working. No point in returning next time. I can’t figure out how things he tells fit in life. Can’t apply what he tells.

Life feels like Groundhog Day. Or Sisyphean.

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I’m sorry. Being chronically ill is so overwhelming sometimes.

I was just talking to my partner about how no one within a 1.5-2 hour drive of me knows how to treat my dysautonomias. And now I’ve been diagnosed with heart failure, which has pretty much the opposite treatment. :sob:

No one around here knows how to treat me, so I’m just dealing with my same cardiologist and hoping I eventually find someone. It’s exhausting.

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This sucks. Hope you find help.

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So, so true.

Sadly.

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Speaking of millions of fires, I saw my doctor today.

After much discussion about when to go to the ER, she decided the best/safest thing to do is put a flag in my chart that if I call asking for advice for anything that would immediately prompt the nurse to tell me to go to the ER that they have to get my doctor’s opinion first.

Because otherwise I’m just not going to call and not going to go to the ER. Because if I call and say hey, my chest hurts and I’ve passed out twice, but my blood pressure is mostly back to normal after an extra dose of midodrine and my O2 is normal. Do I need to watch out for any other symptoms?

The triage nurse wouldn’t even think twice, they would just tell me to go to the ER. But really there’s no danger with me feeling like that. It’s just my normal every day unless something else is different.

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Gosh how do you get that? Cuz I super need it.

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Hi @LED how have you been?

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:skull_and_crossbones: tell your doctor that Monday after your soccer game you noticed you’ve got pretty severe chest pain/pressure, shortness of breath that’s preventing you from being and to finish a sentence without taking breaks, left arm heaviness and achiness, a headache, pain in you upper back/shoulder, stomach cramps, and mild nausea. All those things are symptoms you have sat varying frequencies, though topically not all together. But your BP, HR, and O2 were WNL so you didn’t go to the ER due to covid. And most of those symptoms didn’t START getting better until Wednesday and the rest still aren’t any better. But you weren’t sure at what point you should go to the ER because pretty much all those are ‘normal’ symptoms. Add on that I’ve been passing out a little more frequently because of some recent med changes, and there’s only one possible outcome to me calling and asking for advice. No advice and immediately being told to immediately go to the ER. Plus you didn’t die in your sleep Monday night, so that means you can probably make it to your appointment on Thursday if things don’t get worse.

So she drew some labs and ordered a stress test since I don’t really have any recent heart testing aside from the echo that showed the surprise heart failure. Because she agreed the likelihood of me dying now was low enough that it’s probably fine to not go to the ER unless [insert list of criteria I agreed I would go to the ER for], but I definitely should have gone Monday evening. :grimacing:

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I’m alright. Still having a pretty rough time emotionally, but I’m just trying to ignore the bad things that have happened this month and focus on what is happening TODAY. Everything that is a tomorrow problem I refuse to think about. Lol

What about you? How have you been?

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I got put on rexulti. That didn’t go well. Just trying to stay strong.

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I’m sorry it didn’t work for you. :cry: That’s what they switched me to and it’s not nearly as good as the perphenazine, but it’s at least keeping me out of the hospital.

How are things with you and your bf?

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Good. 1515151515

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