Flights are confirmed but still issues with taking PRNS with us

Hey everyone,

Well I almost had a full day of no issues! The flights are confirmed and we have everything for that. My fundraiser money is in my bank account yay!

So things were great. Til Jess came back from seeing her caseworker. Since Monday when Patel said no to PRNS we had our caseworkers talk to her. And Nakia’s said the dr. said flat out no. And the caseworker did not ask why or try to work with her on this. Why are staff literally afraid of higher ups that they won’t get simple answers or really fight for the person their working with?

I mean this whole thing makes zero sense. My ativan is scheduled. So I can have that amount with me every night. But I can’t have some extra for a PRN even though PRNS are in my orders? I’m allowed to have all my scheduled meds they trust us with that but not the other thing.

I’m realizing that maybe one issue is that residents just don’t travel enough to where this comes up. I know that many when they want a break totally just escape to friends and that’s it. Many don’t care at all about meds so will take whatever or nothing at all.

So it could be that this really hasn’t come up if so many people don’t have answers.

So I wrote Anna and Jonathan not sure what writing him would do. She knows how much I need this med. I normally do not take it during the day because things are in a routine here there usually aren’t any really stressful things going on. And if I am anxious I feel safe sitting in the room trying to distract myself crying or sleeping. Out there just being in that house is gonna set off major emotions. Going to the conference which will be lots of fun and I’ll get so much out of it, will also be a huge anxiety because I’ll be trying to connect with others talking about moving back to MA going to the independent living center for it. Just everything that’s good about the trip is also gonna cause anxiety and I’ll be very emotionally vulnerable.

Yes I have other coping skills for anxiety mainly napping, but it’s such a safety for me knowing the ativan is there. And in all the talks I had with Jonathan for months and years about this nowhere did we even think that I wouldn’t be allowed my prns. In fact part of our whole plan for dealing with stuff is I’d take a PRN. If we knew this couldn’t happen we would have had other discussions I guess. But I’m totally unprepared for it. And of course he’s so hard to get ahold of that I’m not bothering asking for a meeting. Just wrote him on it along with anna.

It’s crazy no one will ask for a straight answer. It’s like doctor says no and their word is law. Like seriously?

So yeah we’ll see I’m seeing Anna tomorrow. Told my mom about it maybe she can do something.


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