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I CANT DO THIS DUDE

DragonsRKool September 11th
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I literally have 1+ doctor(s) appts a week

I'm full time navigating and nurturing my health care.

I'm exhausted

I have time for nothing else and the doctors don't talk to eachother, they barely listen to me and expect me to do all the work

;-;

2
StrawberryShaken September 11th
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@DragonsRKool

Hi Dragons,

I hope your September improves and I want to offer some supportive words as we manage our disabilities together, OK? 😊

Your sadness makes sense. Your exhaustion makes sense. Especially because of how difficult coordinating care between different doctors is. I'd love to find some way to help you with that! That's also something I'm learning.

Example, just today I emailed my old physical therapist for a referral to a location closer to home. She told me that I'd need my new primary care to give that referral... And that was after the location closer to home said I didn't, just to talk to the old PT!! It's seriously crazymaking how healthcare runs us around like this. I don't know if you're in the US too but extra support if so. 💕

What's something that you can do before and/or after of your weekly appointments to save the day? Make it your own? Some act of self-care or a hobby that would return your sense of control.

Also, I want to tell you that you deserve this care. You are worth it. Yes, it's annoying. It's hard. You want to do anything else sometimes. But even still, you are a human being deserving of being cared for. If, for you and I, that means more doctors or more appointments --  regardless of standards and expectations others and culture puts on us -- that is OKAY. We don't have to earn healthcare, no matter "how much" we use. Your life is worth protecting.


slowdecline48 September 12th
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Unfortunately that's the way a lot of doctors run their business....yeah, I've had to keep track of what was going on when I had appointments more often. So I know how you feel.

One of the reasons for this is because most doctors work with/for an HMO or PPO (in the US) or for whatever public-funded health care service is provided by the government (i.e. the National Health Service in the UK). They end up as cogs in a big bureaucratic machine, have to see so many patients per day/shift, etc. Inevitably this erodes the quality of what they do for patients. All I can say is to keep your files up to date, bring all the relevant info with you to every appointment & make sure the doc knows what (s)he should know...& to take it easy when you need to.