The universe has given up on me

I dont know if anyone remembers me on here but things have been pretty decently ****** for me lately when its come to health care.

Ive recently moved 3 hours away from where I was, so I couldnt continue with my outpatient providers that I DID have. So Ive had to find new ones.

And thats where the problem has been.

I have schizoaffective disorder and I dont really feel like there are many options out there for me. Its like, most every therapist seems scared to treat this condition and when I call to look for a therapist- the office will straight up tell me that yeah, no one here will see you.

Which is frustrating and explains some of my issue.

The other part of my issue is that the few who do take schizoaffective people kinda... well. Of the ones who will even see me, they dont tend to really have much experience. And I think thats where the major issue is right now. Well one of.

So Ive been seeing this new therapist and its honestly been frustrating. I went to the office and made an appointment with her and then I tried to see a medical provider there. They put me with a PA and when I saw her she spent literally 10 minutes with me on an initial evaluation, asked me which meds “Id like to take” and then that was it. Hardly asked any other questions. I think she asked “how was I doing” and that was it. Maybe I was meant to like, explain my entire life story there but I didnt know what to say. Oh. She also asked me what my goals were and I basically said to like- maintain treatment. To stay stable. I dont think she asked anything else and she didnt seem to understand why I couldnt be specific on my goals. Maybe its me thats horrible, but IDK. The entire appointment was just weird. She basically told me that since I had no goals wed not change anything. And shed see me back in 2 weeks and to think about goals until then. Which. Again. I know Im not going to be cured. I have a long standing chronic condition. My goal is to maintain my health. And since I have an issue sometimes staying on my meds- its also to have someone I can call or talk to or whatever if I have med questions. I told her that and she didnt seem satisfied and then the appointment was over. After 10 minutes. Nothing else.

I left and then when I tried to make that 2 week follow up I was told that yeah, shes not available for another 2 to 2 and a half months. Well GREAT. Since I mean, god forbid theres an emergency or something... So I made an appointment with someone else at the office. Another PA. In the meantime.

I saw him. He actually spent time with me, which was nice. I mean. Not forever. But I didnt feel like I was being rushed in and out. But he... he basically just started switching up EVERYTHING. He wanted me off all the meds I was currently on in like- 2 weeks. To taper. And then he wanted me on medication that made absolutely no sense for my condition. But I mean, he was the professional so whatever.

So in the meantime Im seeing this therapist and shes meh. My last therapist was really good so maybe I was being unfair. But she seemed to have very little idea of my condition and had very little insight to offer me it seemed. I never felt like I was getting anywhere with her because she always seemed out of her depth, like she was struggling to keep up. Like. She doesnt seem to get psychosis at all. She just, she never seemed helpful to me really.

And yeah. So anyways. The PA stops all my medication, and Im feeling like garbage. Like. Shaking. On the edge of panic. My head swimming. Just awful. So I go to her and shes all like- ok. Just stay on the dose you are currently on and well watch it. Dont worry. Well make sure you are ok. And then, like 5 minutes before the end of my appointment shes like, but oh yeah by the way Im booked for the next month.

So Im like. What the heck. Im doing horribly, because YOU guys took me off my medication and now- now Im screwed for another month? Im on my own? Ill just get to keep shaking and be in a panic and maybe even start falling back into psychosis because of it? And I have to handle this all by myself for an entire MONTH?!?

I left and I was like. I want to see a PSYCHIATRIST. I want someone who knkws what they are doing. And so I switched med providers again to their psychiatrist finally. Thankfully. If it wasnt for that I would have left and not gone back.

Anyways. I just saw the therapist again and I see the psychiatrist in a week. Idk. Im just so frustrated. Its like, I try so hard to live a decent life. To function well. And I just need a little help. But Im all alone. I have almost no support. And when I do try to seek out support, its been BAD. Its like. Its near the point where it was more stressful than helpful. Honestly, it was probably past that point.

And so yeah. Theres my rant. Blah.

Sorry to hear your frustration and struggles with mental healthcare. Indeed, it is hard to find a provider who wants to work with someone who has psychosis. I'm in the same boat, but I've fortunately found a team that's okay with treating my psychosis, even if they aren't the greatest. So don't lose hope... because those providers do exist!

In general, I think it is a major red flag when *any* kind of doctor wants to immediately change up someone's meds on the first appt, as you've unfortunately found out. I'm a firm believer in the "don't fix what ain't broke" mentality unless I am presented with compelling evidence that my meds are extremely detrimental to my health. Though, I am very sorry to hear you were a victim of this person's ignorance, carelessness, malpractice, and inexperience. You are, unfortunately, not the only one who has been in this situation, and I know that sometimes you get desperate and need a dr really badly, so you're stuck between a rock and a hard place, and are forced to make a tough decision.

A friend from PC was given a new dr by Medicaid and the lady forced her into taking latuda even though she was on haldol for years. Haldol was working fine, but then the lady insisted on "safer" latuda. Well, that ended pretty badly: Hospital. (Again, if it ain't broke, don't fix it!)

But just to be clear... I am NOT blaming you or victim shaming you. It happens to the best of us and it's total BS! Some drs do what they want just because they can, and some of them are unfortunately influenced by big pharma much more so than others, which is why they'll actually push certain meds. So I kind of wonder if your idiot PA was getting paid to prescribe certain drugs, hence the huge overhaul. In fact, I think my first pdoc was actually paid to give me latuda... I mean, it was my first antipsychotic and the most expensive option. Why not a generic like abilify, geodon, etc.?

Hey under*over-
I really feel for you. Finding the right providers can be HARD and it sounds like you’ve really been through it. And med changes are HARD and I can’t even imagine changing all your meds at once- yikes!! I always struggle with weighing the pros & cons of adjusting a single med at a time, as the side effects are sometimes worse than the benefits. If you absolutely cannot tolerate the side effects of switching all those meds, I’d ask for the soonest available appointment, even if it’s with a different provider. And before you go in, have specific notes written down of what your side effects are and what you’re hoping to improve with medication changes. I really believe we play a huge role in advocating for ourselves (which can be tough, especially when we aren’t doing well- but I’ve found that notes really help!).
You mentioned that you don’t have a lot of support, but if you do have a family member or friend who can help advocate for you, bring them to the appointment as well.
It sounds like you’re putting in a lot of effort to live your best life- props to you. Hoping things start getting better soon-
D

Oh also I’m not sure how far into the taper you are, but if the taper is affecting you too much, you can always ask to do the taper slower- a good provider should seriously consider that unless there’s reason not to.
I apparently am really sensitive to med changes- I tried getting off Risperidone twice but became super suicidal with each taper. So on the third taper attempt, they did a significantly longer taper, over like 6 months, and it was sooooo much better.
But, if you don’t agree with the med changes they made, ask questions and voice your concerns-

Reading you post is the kind that causes me to be so sad and very angry. No one should ever be treated the way you're being treated. There need to be more, and more accessible and capable mental health professionals who can see patients regularly and often. I see how hard you're trying.

Are there any other clinics neat you that are worth trying out?

I am going to hold on to the hope that this psychiatrist is going to save the day.