really bad day: can’t take PRNS with us on visit and Jonathan has still not connected with my parents!

So today was really bad I spent half the day crying.

First of all the lab tech came at like five in the morning and took blood.

Then I went to see Dr. Patel. Well both Jess and I. And she said great about the visit. We both planned to take some PRNS with us, ya know as needed meds. For us it’s ativan and klonopine. I was thinking having one for once a day if needed plus my scheduled dose.

Well apparently that’s not allowed! Some sort of state law for these facilities. They don’t allow you to take them with you because they’re afraid you’ll overdose or otherwise abuse them. We had no idea at all about this. Especially in this type of situation with all the stress I have experienced ever, like seeing my parents after five years the conference and everything. The way I don’t take prns, I probably wouldn’t take them. Or maybe like one. But that doesn’t mean I’d give them away to drug addicts on the streets of boston or take them all at once.

She said to talk to Karen director of nursing. Karen had no idea about this except there is no way she’s gonna break a state law. This whole thing is just so outa hand like we only found out this past week that we’d even have the money. Both for the hotel and the flights. The more days go by between now and when we want to fly the higher the plane tickets are. And Jess needs an extra seat too.

Jonathan did text us back on Friday saying he was working on stuff. Which we think included returning my victor player charger that we thought was my phone charger, and he talked to Anna and Nakia about the trip a little. But he did not get in touch with my parents to talk about making sure we get safely to the airport and on the plane and finding a time where he or someone else could do this. There’s just been absolutely nothing from on that. We write/ text/ call several times a day. He hasn’t seemed to be in much at all this past week. Staff are right when they say they often can’t get ahold of him. If I worked for him and he pulled this disappearing act every so often I’d be very mad. But he can be really intimidating I’ve witnessed him raise his voice it’s not pleasant.

But he knows what a big deal this is! This is like all my therapy has built up to this. Me being able to do this trip. Me wanting to move out with Jess and start a new life it’s what everyone’s been wanting. We have an appointment with the boston center for independent living to talk about resources. More and more people I connect with on facebook want to meet Jess and I. If I don’t see them now I honestly don’t know where my parents will be living very soon and I certainly wouldn’t be able to see the house.

There’s so much at stake. And it’s already so emotional and stressful for me getting each thing done with this. But there is just more and more stuff thrown in my path. I have two psychic friends who I both trust. I don’t know exactly what they tap into but I know that many times it’s been right on target which is scary.

And they’re great people.

They say if you’re on a path and things seem like an uphill fight maybe it’s npot meant to be. Not to say you shouldn’t fight for what you want/ need. But they’re saying that we can will things to happen that The Universe or like our core self or whatever doesn’t want to happen at that moment and then it can blow up in your face.

I’m wondering if they’re right.

Jess is convincing me to not give up til Wednesday at least. I’ll do that. Though it kills me to just not cancel and forget the whole thing. Tomorrow will be the test because that’s our meeting day. Of course that didn’t happen last week. If we can’t find him tomorrow I don’t know what we’re gonna do.

I suppose we could take paratransit but from what I’ve heard from other blind people taking it to the airport is not fun. And we’d be on our own with all these bags and Jess trying to guide me and I can just feel the anxiety!

So yeah we’ll just have to see. Will be sure to keep you posted. I’m just grateful for supportive friends.

I’m sick of these facility rules though. Like who denies someone medicine they need when they’re actually facing more anxiety than their every day stress level?

Part of me can’t wait to move or at least see what’s out there but if we don’t do this trip now I don’t know when the next chance will be. Because the whole point on how this thing started was the conference. We just didn’t pick a random date three weeks away and decide to go for it.

And previously without any pressing incentive like something like the conference we just haven’t been able to get it together to go.

So we’ll see I guess that’s all I can do.


3 thoughts on “really bad day: can’t take PRNS with us on visit and Jonathan has still not connected with my parents!

  1. If you don’t go on the trip, you ethically should be obligated to refund the people who donated through your online fundraising efforts. Unless you amend it (the fundraiser)that you’re going to make a good faith effort to go and live independently of the nursing home, with the funds.. and even then you might come off somewhat dishonest.

    They made the donations in good faith that you would use the funds for the trip and paid for you to go.

    If you don’t go, and spend it on toys and snacks, people in the future are really not going to trust you much if you start another similar fundraiser. At least they shouldn’t.
    There are many people online who say they’re raising funds for bills and emergencies and later on you found out they just wanted spending money. One guy cried poverty and wanted funds for his injured cat, and then was showing off his new legos shortly thereafter and never mentioned the cat again. People felt deceived. Also, he’s thirty five.

    Just a tip, there.
    Few more tips: Book the flight now, book the paratransit and don’t rely on an unreliable person. I fly out of O’Hare for work trips, they have staff that can assist you.
    You have a college degree, you seem smart overall. You got this.

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