Cynthia, first thing’s first, gentle digital hugs from me. It’s very apparent that you’re going through a hell of a tough time right now, and while I can do little more than try to reinforce that you are definitely not alone in your thoughts above. Dark thoughts tend to breed darker ones, and it can be hard to get out of that loop.
I understand that well, and have a fair number of physical and mental scars from those times when I went down those dark loops myself, so trust me, you’re really not alone on this stuff.
Do not let yourself go down those loops, and if you feel yourself doing that, reach out to a friend who you can count on to be a rock, or even these forums.
Know that, even though tntlamb, as he describes himself, is a crusty old fart, I’ve never seen anything he’s said on these forums as motivated by anything other than concern. I believe he wants you to get better, or at least better treatment.
(Side note: I’ve known some folks like lamb in my time, and I consider it an honor to have counted some of them as my friends. They’re generally the kind of person you can count to have your back, no matter the situation, even if they’re kicking your ass at the same time.
I’m also pretty sure he and I have the same person in mind here, too, and I agree.)
I understand where you’re coming from on not being told things, especially by someone who’s supposed to be treating what you’re being told from everywhere can be a very aggressive disease. Doctors and communication can be super fun, especially when you have to find out from elsewhere that a step is necessary and they’re not telling you that. That’s one section where I would say you need to find a different Rheum, but, it also depends on how they may react to you bringing up the information to them. Are they receptive, are they willing to work with you, etc?
For example, my rheum hasn’t brought up PT (and I forgot last time). They want me to do stretches every morning to help with the stiffness, but never mentioned anything other than that. I’ll be bringing that up to them next appointment, always assuming pain levels remain at the manageable levels they’re currently at. While my rheum has a lot more wiggle room in my mind, cause he’s a loveable old gnome man who is awesome otherwise, and I’m not giving him away, his response to that if he was otherwise would give me pause on returning to him, depending on the answer.
Which is a long winded way of saying - no one here is judging you. We don’t think you’re doing this to yourself, we don’t blame you for your disease and disability. I don’t believe anyone would blame you for not doing something you weren’t being told by an authority figure you should be doing.
You’re not alone, and you are cared for, at least around here.
