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.

jiFfM

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.

newprescriber1

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.

Run, Bernie, Run (all the way to the White House)

I recently posted about why I’ve joined the “Bernie or Bust” movement – why I will not compromise regarding my vote for U.S. President. A lot of people say it’s important for Democrats and people who lean Democrat to unite behind the nominee – regardless of who it is – in order to avoid a Trump presidency. The concern about what could happen if Trump were to become president is valid, but I don’t want to be dictated by fear, or to vote for the “lesser of two evils.” And frankly, a lot of polls have been consistently showing that Bernie is the Democratic candidate who has the best chances of winning the general election (Bernie has +13.4 chance vs Hillary’s +6.5).

a chart with a blue line representing Bernie Sanders' poll results above a red line representing Trump's

chart from RealClearPolitics.com showing Bernie’s considerable lead over Trump in polls since January 1, 2016

 

a chart with a blue line representing Hillary Clinton's poll results above a red line representing Trump's

chart from RealClearPolitics.com showing Hillary’s less impressive lead over Trump in polls since January 1, 2016

I’ve been saying for a while now that those of us who support not only Bernie but the political revolution, who want our government to be truly for and by the people, need to unite and vote for him in November – regardless of whether he is the Democratic nominee. In my post (link above) I asked readers to email an individual who is building a campaign for Bernie to run as an Independent, should the need arise. (Our first goal, of course, is for him to win the Democratic primary.)

an image of Bernie Sanders with a blue background and the text "Petition Bernie to run as Inependent"

a screenshot of the 4Berni.com website

Well, it took less than 2 weeks for the movement to gain over 2000 supporters! We now have our own website – 4Berni.com – which features a petition for him to run as an Independent if necessary. Our goal is to reach 2 million signatures in time to deliver the petition at the Democratic Convention in June.

If you’re a Bernie supporter, if you need access to healthcare, if you are not a multi-millionaire, if you are a member of a group that is regularly discriminated against, if you have student debt, if you want our planet to remain hospitable to human and other life, if you want people’s well-being to be prioritized over profits, etc. Please get involved in Bernie’s (official) campaign (for the Democratic nomination). Please commit to voting for him – in your state’s caucus or primary if you haven’t already, and in the general election on November 8th. (Visit CanIvote.org for information about your voter status, how to register, and how to vote.)

Please also sign the petition for Bernie Sanders to run as an Independent if he is not chosen as the Democratic nominee.

An image of a form including text boxes requesting one's email address, first and last name, zip code, and information about willingness to volunteer. Below the text boxes is a check box to receive updates and the submit button.

an image of the petition form on 4Berni.com

The form to sign the petition includes a space where you can describe the level of involvement you want to have in building a campaign for Bernie to WIN the presidency as an Independent candidate. It automatically registers petition signers to receive updates via email, but you can opt out by un-checking the box. This is an independent petition not linked to any of the popular online petition sites.

I think, if it’s ever been likely for a 3rd-party candidate to win an election, this is it. Bernie is the only candidate with a positive favorability rating. He’s “YUGE”-ly popular with non-affiliated and young voters. He’s been drawing massive crowds at rallies, inspiring marches, people have even made murals of him. He’s the person who has really made this campaign about the issues that are important to everyday Americans from day one. He is running a successful grassroots campaign that is entirely dependent on individual donations, and he has inspired record voter turnout.

He is also the only candidate who has outright stated that mental healthcare should be easily accessible for everyone.

So, yeah. Bernie or Bust! Are you in?

A Line Through Time

One of the worst things about my mood disorder is feeling disconnected from my past self/selves. I feel like I’ve lost something and I want it back, but I’m not even sure what it is. Most of my work with Wakana has focused on reclaiming aspects of my Self and my life experiences that I’d repressed, abandoned, or otherwise been ashamed of. It can be very painful It is excruciatingly painful, but with every step I feel closer to being whole.

Last night I decided to make a timeline of my relationships. I started with meeting Banji over 15 years ago and continued through college, my first full-time job, grad school, meeting Fox, Banji moving away, getting married, all the way to this year. I realized there was at least one major transition – including but not limited to beginning, losing, and ending relationships – in every calendar year since I graduated from college about 10 years ago.

There is a concentration of intense transitions from 2011 through 2013. As Banji was preparing to move away, I essentially proposed to Fox – despite only knowing him for a handful of months. Spring 2011 was the last time I facilitated music therapy sessions for actual clients. Banji moved over the summer. I applied for an internship and thought it was a sure thing, so I waited months to learn whether I’d been accepted… only to be rejected twice. By the end of that year I’d moved in with a friend from college.

I don’t have much written down about 2012. I spent a lot of time trying to find the right medication and psychiatrist, and ended up taking some meds that probably did more harm than good. I adopted a pair of rats early in the year, one of whom died about a month or two later, and I had to euthanize the other by the end of the year.

Banji moved much closer to home (but still 5 hours away) around the beginning of 2013. I followed suit by moving back in with Mom; I’ve barely seen or talked to my former roommate since. Mom got knee replacement surgery, my uncle died, I had to drop the classes I’d waited 2 years to take because they were triggering my worst symptoms, Fox moved in with me that summer, and we got married in the fall. Looking back on it in that context, I think I must have been crazy!

Some of the above transitions were out of my control, but others (like moving) I imposed on myself. I honestly don’t regret them; they were necessary for me to reach the point where I am now. But they definitely added to my stress and were not entirely beneficial to my mental health. I couldn’t do most of the things I was used to doing; I stopped doing things that had been meaningful to me. I made at least one decision that I do regret now. In hindsight I think my worst problem may have been the guilt and shame I felt because of the problems I was facing – particularly as they affected my pursuit of a career.

Things have been improving since last summer, when Fox and I started marriage counseling and finally gained access to the medication we need (thanks to the Affordable Care Act, aka “Obamacare”). Fox has been working full time for several months now. I did well through a challenging semester on a sub-therapeutic dose of my medication. Now I’m on a therapeutic dose. We’re regularly using the skills we learned in marriage counseling (which our therapist terminated 2 months ago). Our relationship brings us both a lot of comfort and joy.

Of equal importance is that Banji and I have worked through at least some of the issues impacting our relationship; we’ve become closer as a result. We’ve adapted to the current physical distance between us. Whenever we meet in person, we blend continuing fun traditions from the past with planning for the life we intend to build together. We’re not where we want to be – living within a 10-minute drive of each other – but we’re hopeful.

I haven’t been putting off applying for internships because I’m afraid of rejection. I’m not even sure it’s accurate to say I’m afraid of success. Starting an internship would be Another Huge Transition: new relationships, new routines, new responsibilities, even a new role/identity. The dynamic between Fox and me would change – hopefully for the better, but it would still be a change.

This is something I actually have some control over; I am exercising my control. I am not procrastinating and I do not have anything to be ashamed of. I am choosing to postpone another huge world-shattering transition because I’ve learned that it’s harmful to have too many of them in such a short period of time. There’s a lot of pressure to start my internship as soon as possible, and a lot of benefits that could come from doing so. But there are also benefits to waiting, at least for few more months.

I need some time to breathe.

A New Normal?

According to the current clinical depression screening tool on MoodNetwork.org, I am not depressed. I was so surprised by this result when I first got it, I answered all the questions again to make sure I hadn’t lied on any of them: Sad most of the time, check. Trouble falling asleep and waking early, check. Feeling tired, check. All these other questions… no, my appetite hasn’t changed, I’m actually more motivated and active than usual, and I DON’T FEEL WORTHLESS!!! (or suicidal). I feel… okay.

a checkmark in a green circle next to the words, "You are not depressed."

screenshot of my result from the depression screening: a checkmark in a green circle next to the words, “You are not depressed.”

I’ve been re-taking the screening for the past few days now, and I keep getting the same result. I’m not depressed. I’m not depressed. I’m not depressed. I’M NOT DEPRESSED!!!

Oh my GOD!!!

I know, I know, it’s just an online screening. It’s not a substitute for a mental health professional’s evaluation. Well, I met with two mental health professionals this week. My prescriber told me, “It seems like your antidote to feeling sad is keeping busy.” She agreed with my decision to stay at my current dose of lamotrigine (50 mg 2x/day) because I don’t want to try to medicate away my feelings. Wakana congratulated me, said that clearly the therapy and medication are working, and told me I’ve been making good progress.

I am not depressed. Part of me wants to scream “I’m cured!!!” – but I think that might be a little bit premature. (or complete bullshit.) I’m… better. I’m okay.

I’m standing at the edge of a cliff with a brand new glider on my back, watching everyone else glide around, and wondering, “Is this thing really safe?”

Wakana said, “baby steps.” She used the metaphor of easing oneself slowly into a pool – which I find ironic because to me that’s torture. I’d rather just jump in, get the “it’s cold!” shock over with all at once, and start swimming oh my god swimming it’s the best thing ever!!! I want to go right now! But, umm, I don’t have a pool. So, yeah, this isn’t swimming it’s life. Baby steps. (I have friends who have a pool, and they’ve invited me to come swim in the past. I should ask them if the offer still stands.)

I guess I’m taking baby steps. I’m (literally) taking thousands of steps (that is, walking) on the days when I meet with her… and I want to take more on the days when I don’t. I’ve been having great conversations with loved ones, including Mom. Composing, making art for the fun of it, spoiling our pet rats… being intimate with Fox…  (I love having my sex drive back – and it takes some… navigating…) In the next few weeks I plan to acquire clothes I feel good about wearing, start practicing music instruments regularly, declutter, meet with my adviser about internship possibilities, and start applying for internships and part-time jobs. I had to re-write this paragraph to sound positive and not “being hard on myself” for the things I “should” be doing; now I’m worried about trying to do too much and burning out before I even get started! But at least I can re-write it.

In the past, times when I’ve temporarily clawed my way out of the bottomless pit that is being clinically depressed have been the best days of my life. For example, my wedding: at that time I was still using the Burns Depression Checklist to keep track of my symptoms; on my wedding day my score was 6. That’s “normal but unhappy” (granted, only 1 point off from “no depression”). The best I ever felt – EVER – the best days of my life were what most people would (ostensibly) consider “unhappy.”

These are not the best days of my life. I’m tired. I’m sad. I’m achy. I miss my friends, especially Banji. Last night I had a nightmare (in which my husband died). I’m going to go crazy (and spend way too much time playing The Sims 3) if I don’t find some way to structure my time (besides playing The Sims 3). For a while I was starting blog posts, then deleting them. … I think you get the idea.

Today I scored a 10 on the Burns Depression Checklist, which is the highest score in the “normal but unhappy” range. (a score of 11 would indicate mild depression.) I think I answered honestly, despite the temptation to lower my score to fit with the previous assertion that “I’m not depressed.” It seems accurate to say that I’m unhappy.

But something’s changed. Like someone lifted a blanket off me and I can see the sun and feel the breeze and stand up tall and breathe. I feel more confident. Hopeful. Maybe… even… whole?

Moody Monday: Feedback

The Mood Network is a research study that enables people with mood disorders and our family members to work with doctors and researchers to find better treatments – not only by providing data, but by sharing our insights. I first blogged about it 3 weeks ago, calling it an opportunity for activism, critiquing its implementation, and encouraging readers to “light a fire under the researchers’ butts.”

Well, some pretty awesome things have happened since then. I was contacted the next day by the head of the Mood Network: Dr. Andrew A. Nierenberg, MD. He thanked me for my feedback and assured me that he would bring my suggestions to the rest of the team. I’ll admit, I was a bit skeptical – but also pleased to have gotten his attention.

Then, on June 12th, Dr. Nierenberg commented on my first Moody Monday post:

Thanks so much for your interest and thoughtful comments about MoodNetwork.org. We are taking all of your feedback seriously and are in the process of implementing some of your suggestions. MoodNetwork will include surveys to do exactly what you suggest, i.e. to find out what is important to experts by experience. We will also have opportunities soon to not only to ask you and others about research priorities, but also will ask you about your experience in receiving care. We are also working on improving the forums and blogs – and yes, it does need a lot of love. Please be patient with us and thanks for joining.

It means a lot to me that the head of the Mood Network made a statement like that on a public site; it suggests to me that he and his team are serious about making those changes. I especially appreciate the specificity regarding which suggestions they intend to implement. (The new surveys and opportunities haven’t appeared yet.)

[Edit: there is a survey asking “what should we research?” The link to it appears in the menu on the mobile site, and in the left sidebar on the regular site.]

People have become a lot more active on the forums in the past few weeks. I’m enjoying the honest discussion, opportunities to see that others share some of my experiences and perspective (universality), and the feedback participants are providing about the site. If you are one of the active participants, thank you! (If you’ve joined or are considering joining, thank you!)

Most recently, two new categories have appeared on the forums: “Symptoms” and “Exercise.” I’m pleased to have more options, and very curious to see what people do with them.

Moody Monday

I’m reclassifying The Mood Network from “resource” to “opportunity for activism.” It’s a huge research project dedicated to developing better treatments for mood disorders based on the lived experiences of people who have them and our families. However, so far it looks more like a teaching model – “we’ll tell you” instead of “please tell us” – and the forums are practically dead. If this thing is going to work, it needs a lot of love.

Part of the "Participant Portal" page that becomes visible after signing in. Options include surveys to determine if you've ever had depression or mania, "ask the doctor," and discussion forums. Not visible: You can also read and comment on their blog.

Part of the “Participant Portal” page that becomes visible after signing in. Options include surveys to determine if you’ve ever had depression or mania, “ask the doctor,” and discussion forums. Not visible: You can also read and comment on their blog.

The Participant Portal, screenshot above, seems okay overall. I like the invitation to share our experiences. The forums and blog are the only places to do so, though. The surveys are similar to others you can find online, particularly at the Depression and Bipolar Support Alliance (one of the groups involved in this project.) I’m not sure if the “Ask the Doctor” option is unique among otherwise-available resources… But again it’s “ask the doctor” not “tell the doctor.”

I’ve been focusing on the forums the most and frankly, they are disheartening. A few people have gotten into discussing “Treatments,” but the “General Questions” forums are empty. I think the problem is that they create two mutually-exclusive categories that are ridiculously broad, unfocused, and don’t invite discussion of topics (or diagnoses) that may not fit neatly in either category. There is no way for participants to create new categories.

A screenshot of the "Forums" page. There are three categories: "Treatments," "General Questions about Depression," and "General Questions about Bipolar Disorder." Only the first category, "Treatments" has posts.

A screenshot of the “Forums” page. There are three categories: “Treatments,” “General Questions about Depression,” and “General Questions about Bipolar Disorder.” Only the first category, “Treatments” has posts.

I don’t know about other research participants, but I’m not there to ask questions; I’m there to share my experiences. Where is the space for us to share our stories? To discuss how mood disorders – and the associated stigma – impact our lives? To give feedback on our ability to access care and how health professionals treat us? Where is the space for our family members to discuss their experiences of living with and supporting us? What about those of us whose mental health issues don’t fit neatly into “Depression” or “Bipolar Disorder?”

One thing I’ve learned about research is that it’s important to come up with specific questions you want to answer via your research methodology. These researchers have created a space where they can ask us questions directly. They should use it! I can’t know what their questions are, but I can make some suggestions: “What makes a good therapist?” “What treatments have and haven’t worked for you?” “What barriers have you faced to accessing treatment?” “What can health professionals do to better meet your needs?” “What research do you think we should be doing?” Etc.

The words "Keep calm and formulate your research question" in gold against a red background

“Keep calm and formulate your research question” retrieved from the JEPS Bulletin.

Also, I’m annoyed that I had to choose “Male” or “Female” to register for the study. Gender (and physical sex) are so much more varied and complex than that! Trans* people face additional discrimination and erasure that definitely impact our mental health; those of us who are non-binary, fluid, agender, very proud of being trans*, etc. definitely don’t need more of that. Also, trans* people who transition medically may be taking hormones or have other unique medical needs that impact their response to medication and/or other treatments. These are all very important considerations for any health-related study.

Actually, that would be another great research question: “In what ways do systems of privilege and oppression (e.g. racism, sexism, cis- and/or heterosexism, wealth inequality, ableism, etc.) contribute to your mood disorder / symptoms?” I also like, “What community initiatives might help lower the incidence of mood disorders and/or make living with them easier?” Focusing on the medical aspect, “Do you have any medical condition(s) that have influenced the benefit you receive from treatment?” (I could probably do this all day.)

a masculine queer person, frowning and with arms crossed, is excluded from a conversation by other queer people taking place on the other side of a closed door

illustration by Jessica Krcmarik

Anyways, activism. I invite anyone who’s interested to join The Mood Network and light a fire under the researchers’ butts. Contact them directly with whatever feedback you deem appropriate, comment on their blog posts, start new discussions in the forums, send them links to mental health blogs. Spread the word. This is intended to help us, let’s make it our own!