The Epic Quest for a New Prescriber

At my last psychiatric appointment, my prescriber of nearly 3 years (an awesome advanced practice nurse) informed me that she’s retiring – and the community mental health clinic where I’ve been receiving care isn’t hiring a replacement. There wasn’t any offer to help me find a new prescriber or set me up with one. She just gave me a list of numbers to call, and sent me on my way.

I knew I should’ve started the search immediately, but I was stressed out by the idea so I did what I do best: I procrastinated. I got distracted. I focused on just about everything else. To be fair, “the incident” happened soon afterward; I needed time and energy to recover from that. (Things are going well, by the way, update pending.)

Two months have passed.

Somehow my lamotrigine & clonazepam prescription refill cycles got de-synchronized, so I’m in a kind of weird situation. I used the last lamotrigine refill a few days ago; “additional refills require authorization.” I have 26 full doses left, including today’s. There’s still one more refill on the clonazepam.

So it’s crunch time. I need to find some way to refill these medications – preferably before I run out or resort to cutting pills in half. I honestly fear for my life if I have a disruption in access to my meds – if not my physical life, my ability to continue my activism and maintain healthy relationships. Perhaps more importantly, I fear losing the ability to do the things I need to improve my life – such as completing my degree, finding a job that pays a living wage, consistently functioning well in that job, and learning how to keep my home from becoming an unlivable nightmare. Even more importantly, I fear losing the ability to take care of myself, which includes the ironically (read: cruelly) daunting task of accessing and engaging in treatment.

These fears are among the most potent triggers for my worst depressive symptoms.

Oh, and by the way, my state just cut funding to community mental health. Clinics are closing or cutting whatever (whomever) they must to try and stay afloat. My current clinic no longer serves clients with private insurance, and it had to let go of its front desk staff.

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Star Trek: Next Generation characters Picard and Riker both facepalming. The text reads: “Double Faceplam. For when one facepalm doesn’t cut it.”

So, yesterday, I began The Search. My counselor (who helps me with behavioral approaches to wellness) had suggested that my primary care doctor could possibly authorize refills, so I called his office. They said he “might” be able to, “depending on [my] situation,” so I made an appointment. I’m hoping he can authorize a one month supply of the lamotrigine, and if necessary I can return to him for a three month supply of both medications. (Clonazepam is a controlled substance, so any ‘new’ prescriptions not filled within 30 days expire and need to be reauthorized – at least in my state.)

Even if my primary care doctor can help me, seeing him for psychiatric consultations is not sustainable. I don’t have, nor do I anticipate developing, the rapport I’d need to literally trust him with my brain. I need a specialist who really knows what they’re doing, especially if and when it becomes necessary to make adjustments to my medications. (Which may be soon, I’m still trying to figure out to what degree my current problems can be addressed through music therapy and changes in behavior, vs meds.)

Ideally I’d like to switch to the other prescriber at my current clinic, whom Fox has been seeing and seems to like. If not her, perhaps someone at another location in the same agency – surely that would provide some consistency of care, right? I called the intake office; the person who answered seemed surprised I hadn’t been referred to another prescriber. “Well, you might want to call the other numbers on your list, because we’re currently scheduling for September.” “September?” “Yes.” I hung up on them.

I started making some additional calls. Bad number. We don’t do that. We’re not accepting new clients. We’re currently at capacity, but may be hiring someone, you can check back.

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My to-do list item on Habitica.com with several steps checked, reflecting the efforts I put in yesterday.

There are several additional numbers on my list, but most of the clinics are in urban areas that may be … inconvenient … to access. Middle class suburban snobbery aside, I anticipate that these locations are even more likely to be “at capacity” or otherwise struggling to serve clients for whom they’re the only choice.

So I’m gonna try calling intake for my current clinic/agency back, see what they can do for me. (I realized later that September is only about a month and a half away.) Hopefully my doctor can set me up through August, maybe September as well; if there’s any interruption in my access to meds it will hopefully be short enough that I’ll be okay. And I’d rather have this set as a backup in case my doctor can’t help me and/or I can’t find a prescriber elsewhere; the longer I wait to make the appointment, the later it will be and the more likely this is to become devastating.

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I forgot to refill my prescriptions until I ran out – of course on the day I was running late and had to rush out the door. I tried to put in the refill request for the clonazepam first, but was unsuccessful; somehow my prescriptions got de-synchronized so I was out of refills with that Rx number and I didn’t have the new one to put in. I was in crazy anxiety rush mode, so I didn’t try refilling the lamotrigine – even though it had 2 more refills with that Rx number.

I asked Fox to go to the pharmacy for me and he did, because he’s wonderful. He said (they said) they didn’t have anything in the system for me. I was tabling at a pride event and he had to leave for work and it was Sunday, so there wasn’t really any opportunity to follow through on anything.

On Monday I realized I should’ve tried to refill the lamotrigine, better to have one of my meds than neither, right? That was no problem, but I had to speak to a pharmacy representative to deal with the clonazepam. The person I talked to at the pharmacy had an irritating tone to her voice and was too nonchalant, like there was no problem with them not having the information necessary to make sure I have access to a medication that keeps me alive. She didn’t even try to be polite like saying ‘sorry’ – but she did offer to fax my prescriber. And she explained that the clonazepam prescription had expired because it’s a controlled substance, so it has to be filled within 30 days.

I walked to the pharmacy with my inner voices screaming, an irritable mess, barely holding myself together. By the time I got the lamotrigine my ears were ringing and my eyes were so full of static everything was in a darkened haze and I couldn’t think straight and everything felt completely WRONG. That was after missing one dose – and it’s not even that high a dose. I took the dose – better to at least take one of my meds, right? and everything cleared within minutes. The difference was noticeable to Ron over the phone.

I had to play phone tag with my prescriber for a couple days, but I was able to refill the clonazepam today. I didn’t notice as much as an effect when I took it, except that maybe I’m a bit calmer? And I was rather sleepy, I attributed it to waking early from a bad dream, but the medication is known to make people drowsy. Ron seemed surprised I’m able to function at all taking [my dose] of it every day.

To be honest, between what ze’s been telling me about it and what I’ve read online, I’m a bit wary about staying on the clonazepam. Apparently it’s habit forming and it’s better not to take it for extended periods of time. But my prescriber added it for a reason – I think because even with my mood stabilized I was still struggling with anxiety. And I don’t know if I wrote about this yet, but my prescriber is retiring, so I need to find a new one within the next month or two. I’d rather not change my meds until I’ve developed a good rapport with the new prescriber.

So, yay, I’m back on my meds! I anticipate that going a day without lamotrigine and two days without clonazepam will have thrown my levels off; it might take a while for them to get back to normal. And I’m a bit shaken by how profound my (withdrawal?) symptoms were before I took the lamotrigine. I’d come to accept that I’ll probably be taking these medications for the rest of my life, and I’d rather do so consistently than risk going back to how things were before I started taking them. Still, this was a rough reminder of how dependent I am.

Medical Update

I ran out of Lamictal because my appointment with the APN on Friday was cancelled for reasons outside my control. The receptionist said the “other doctor” would refill my prescription that day. Nada.

I called today around 11am and the same receptionist said the APN would take care of the prescription within the hour. “I’ll call you.” Four hours later, no call. I called back at 3pm and she said “by the end of the day.” I had important things to do today, so I couldn’t sit around waiting for it. But, according to the voicemail I just listened to, it’s waiting at my pharmacy.

I called my dental insurance to find out if there was any update regarding my periodontal referral for my Endangered Molar. I had received authorization for a consultation only; the periodontist (whom I saw on January 22nd) had to request authorization to actually treat me.

The dental insurance representative said they hadn’t received any such request from the periodontist! It’s been almost four weeks! And to make matters worse, she tried calling the office three times and kept getting a busy signal. She said she’d leave a note for someone to try again later.

When I’d met with the periodontist, she seemed to be on my side. They said “we’ll call you to make an appointment,” so I was a good patient and waited. They made it seem like any delay would be because of the insurance. I trusted them! I feel betrayed.

In related news, I went to get a root canal on Root Canal Molar last week. The endodontist-in-training attempted to perform the root canal, but had difficulty accessing it for several reasons – including but not limited to my inability to open wide enough for her to reach the back top of my mouth. Apparently the tooth is also rotated toward my cheek, making it even harder to access. We both put in our best effort, but all she really ended up doing was beating me up.

We’re officially at 6 months since I started having unbearable toothaches, and I still have yet to receive treatment! The bone damage near those teeth keeps getting worse; I can see it as a growing dark area in the x-rays.

I have an appointment to go back and try the root canal again… In two weeks… But I’d really rather not. We’ll need at least a couple of painfully long visits just to complete the root canal, then another 2 or more for the crown – if it’s approved – and there’s a chance I may have a problem with it later and have to come back again…

No, just no! That’s not happening! I’d rather just get the damn thing pulled and be done with it! I don’t even want to replace it with anything.

So now I have to convince the endodontist-in-training to refer me for an extraction and wait for that to be approved… I just hope I can communicate with her directly – and that she’ll follow through in a timely manner – without jumping through a million hoops. I can’t tell you how often I’m tempted to try and pull both teeth out myself!

But wait, it gets better! The sleep study that contributed to my crisis two weeks ago failed to reveal whether I have sleep apnea! The doctor had called me to discuss the study and, when I told him I’d slept much worse than usual, suggested we try an in-home study. I agreed and he said someone would contact me to set it up…

I was just thinking it was time to call them and find out what happened, when I received a letter from my insurance company saying they were terminating treatment by an out-of-network provider. The letter didn’t say what treatment; in fact, there is a sentence that doesn’t make any sense because the [insert colourful phrase in gorram Chinese here] who prepared the form letter didn’t bother adding what I consider the most important information! The only clue I had was at the very end: “cc Obnoxious Sleep Center.”

I was very worried that they would turn around and make me pay for the on-site sleep study (that had proven to be a waste of time and fucked up my head). I had trouble focusing on other things all weekend, I was so angry! I hated the insurance company for sending me an unedited form letter – instead of calling me to address the issue and offer help. I also suspected the sleep center of lying to me, billing my insurance for treatment I hadn’t received, etc. In short, it all made me feel very unsafe.

I called my insurance about the letter today. It had been intended to inform me that the in-home sleep study was denied because they don’t think I need out-of-state treatment. I explained that I wouldn’t be treated out-of-state, both the sleep center and my home are in the state that’s currently paying for my healthcare. But apparently the company (parent company?) that would ultimately receive the funds is based in another state. My results might have to be processed in another state, etc. To be honest, I understand why they wouldn’t want to pay for that. I just wish they’d told me in a more straightforward way!

The doctor who is ostensibly treating me was and may still be trying to get the decision reversed. As far as I’m concerned he’s welcome to continue (or not); I’ll follow through with whatever works best for me. I now have a list of names, addresses, and phone numbers that may or may not be accurate contact info for in-state sleep specialists.

I’d almost rather not even bother! But if I do have a sleep disorder, treating it could go a long way toward helping me function better in my daily life. I need all the help I can get – especially with two emotionally-intense graduate-level classes. I just need to consider whether trying to access treatment is worth the disruption it’s causing to my everyday life…

I’m considering the possibility that I might be better off going untreated, at least until my classes are over. Then I don’t have to play phone tag, listen to musak while on hold, reschedule my life around appointments that only add to my difficulties, and constantly feel like I’m beating my head against a wall. I estimate that more than half of my current stress would be eliminated if I weren’t trying to access healthcare (particularly dental) at this point in time. I kind of need to stay on my psych meds (I think), but perhaps the rest of it should be put on hold.

On a much more positive note, I took some steps toward finding a potentially-therapeutic group experience today. I met with the leaders of the “coming out” counseling group and told them that I’m trans*. They admitted that they’ve been having trouble finding members and expressed concern because the couple of clients they do have are cis, coming out as lesbian or gay. They would want to have at least one other trans* person in the group so there would be someone I could relate to on that level.

I appreciate that, even though it is a bit disappointing. At least they’re willing to work with me to find a group that might work, whether it’s the “coming out” one or another focused on general interpersonal issues. I expressed my interest in the latter and they said “if you don’t hear from us in two weeks, give us a call.”

They also encouraged me to join the extracurricular LGBTQ+ group I’ve been considering; that helped me overcome my reservations and actually show up for it today.

The facilitator was sitting at a table, surrounded my empty chairs. I walked over, said “my, what a lively group we have today!” and sat across from him. We talked for a bit about random things (completely unrelated to sexual orientation and gender identity) and had several awkward pauses.

Then he asked what I was hoping to get from the group. I told him I want a safe place where people will see me as I am: queer. He said that’s exactly what he intends for it to be, and what it had been in previous weeks when people actually showed up. His words were welcoming, but he seemed skeptical regarding whether he would see me again.

I think I’m actually more encouraged to return than I might have been if there had been a group. I felt like I bonded with the facilitator, and that makes me want to come back. I felt safe there; knowing it’s a safe place will make it easier to be there as part of a group. I feel less like I’m inserting myself into someone else’s party and more like I’m helping to establish the group. Next week we’ll be starting on the same page.