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.

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?

Building a Future Together

Fox and I had a productive marriage counseling session today. We talked about how the stuff we’re doing now is working toward the future we want to create together.

It started with me expressing concern that he comes home from work so exhausted – and has such low energy on his days off – that I’m worried he will never “have the energy” to find an internship. (He needs the internship to complete his degree and enter the career that is his calling.) But he explained that right now working full time is important to him because it provides us with some income and financial stability. When the time is right he will cut back on his work hours to make finding and fulfilling an internship more feasible.

This was very helpful to me because I was seeing the situation as either-or: either he’s pouring all his energy into a dead-end job that’s currently paying less than the local, recently-increased minimum wage… or he’s doing nothing until he manages to find an internship, which might take a while. He helped me see that the situation is more complex: right now he’s pouring all his energy into the job, but over time he can put less energy into the job and more into pursuing his long-term career goals. There can be a more gradual transition; it doesn’t have to be an abrupt ending.

Similarly for me: I don’t have to go from living in Skyrim to taking classes and being in various extracurricular groups and applying for internships and trying to find a job. Right now, taking classes again is enough of a leap. I’ve decided to try joining two LGBTQ+ discussion groups that each meet on campus for an hour once a week. They are the definition of low stress: no homework, show up when you can, have a conversation, and leave. One is for LGBTQ+ students and their allies to socialize. The other is specifically for bisexual, pansexual, non-binary trans*, and other gender-queer people to talk about sexuality and identity. Of the groups offered, it’s the one that sounds like it was designed for me.

In our session I said that I’m taking my classes and I’m going to see how they go, then possibly build on that as seems appropriate. Maybe I’ll love and feel so empowered by my experiences, I’ll decide I’m ready to apply for internships. Same possibility with jobs. Maybe something will come to me once I’m out in the world doing things and interacting with people again. Or maybe I’ll just need to focus on my classes, and setting boundaries around them will help me feel like I’m asserting myself and taking control of my own life. I am in the driver’s seat. It’s up to me where, via what route, and how fast I go.

Individually, we are figuring out what works in terms of current occupational focus and future occupational goals. Together, we are supporting each other and making decisions that move us in the direction of our joint goals. For example, my hormones have been throwing increasingly disruptive temper tantrums demanding that I procreate as soon as possible.  Most recently, they convinced me to decide what I’m naming my first child – so now ze has a name; ze is an entity I’m denying entrance into the world.

I don’t know whether Fox’s hormones are also clamoring for babies, but he remains the voice of reason: “not yet.” It empowers my own, internal voice of reason: “we can’t take care of ourselves, yet. Let’s get really good at doing that before bringing a new life into this world.” Having a baby now would be a complete disaster financially, emotionally, for both our careers… it wouldn’t be healthy for anyone involved.

So together we make the decision to wait. Together we do what we can to meet each other’s needs. Together we build the foundation for our future family.

It felt good to have an idea of what the future might look like, for once. Too often it looks dark and empty, nebulous. I’ve been having trouble being creative and my experiences have taught me that nothing is guaranteed; my wanting something to happen has no influence on whether it will happen. So how can I decide what my future will look like? I can’t. It’s just… formless. A waiting void.

But I can put things in that void. They might not happen how I expect – if at all – but I can put them there and work toward them and feel good about knowing we’re building something together. Kind of like improvising: I know what sound I think should come next, but it isn’t always what my fingers end up playing. When I make a “mistake” I incorporate it into the improvisation, so what was unintentional becomes intentional – possibly a central motif! I might build an entire song out of something I never even meant to play. So with life… it’s not about knowing what exactly will be there, just that something will – and it will be something we work together not only to create, but to continuously shape.

After our session, I noticed that I was becoming very irritable. I kind of snapped at Fox for slamming the car door, and again for being indecisive when it was time to order lunch. He caught public transportation to work and I came home; by the time I got here I felt like I was being subjected to nails on a chalkboard. Cardio exercise helped me clear my mind while I was doing it, but didn’t have any lasting effect on my mood. I was very agitated and all the sounds were making it worse.

I suspected I may have been experiencing symptoms of withdrawal from Lamictal, which from what I read can be quite the nightmare. (I had abruptly stopped taking my 75 mg dose, per the APN’s orders, on Monday.) Part of my mind was clamoring for me to take a 25 mg pill to take the edge off. Part of me was thinking that if this is what withdrawal from such a low dose is like, maybe it’s better for me not to be on it at all.

The thing is, I have my classes, and I have all the stuff I just wrote about. Plus, Fox and I have been talking about adopting a new pair or trio of rats; we want to raise them from as young as possible this time. Last night we learned that a nearby rescue has several newborn babies that will need homes within the next six weeks (once they’re weaned); that gives us time to prepare but also a nice kick in the pants to do so. Our past pet rats brought a lot of joy to our lives, so we’re hopeful about adopting again. (I also hope that having pets to care for might get my hormones to quiet down a bit!)

So I can’t be going through withdrawal symptoms right now. I just can’t. I need to be able to focus and direct my energy at what’s important to me and enjoy my time with Fox. Things snowball and become horrible when I’m irritable toward him (which is different from when I’m justifiably angry – then we can talk and come to a new understanding).

I felt guilty about “bothering” the APN’s office again, but I also felt like I was going crazy and needed to do something about it immediately! The only way I was going to get the help I needed was by asserting myself. So I called and said I needed to talk to the APN about my medication.

I actually got to talk to her right away! and it was very helpful. Ironically, I still don’t know which risk factors prompted her to take me off the lamotrigine – just that she had weighed the risks and benefits and thought I’d be better off not taking it. She asked if I had a rash – so maybe that’s it?

Anyways, I told her that I thought it had been helping me at least somewhat, particularly by decreasing my suicidal thoughts. She said, “Oh, I hadn’t realized it was so helpful to you. I’m glad to hear that.” She instructed me to start taking 25 mg again. I considered arguing for 50 mg, but I didn’t want to push it. Maybe I am better off at the lower dose?

I still have enough of the medication to take 25 mg every day until after our next appointment, so I was able to start taking it again right away. I feel much better – in part, I think, from expressing all this stuff, being listened to, and getting my desired result. I’m calmer, less irritable. I can think more clearly. Life is good.

Feim Zii Grom! (Become Ethereal)

trigger warning: pressure from medical professionals to lose weight, a potentially suicidal thought
content notes: From this point on, assume I’m being sarcastic, unless otherwise indicated.

I’m so grateful to my APN for forcing me to schedule a sleep study at the particular center she chose! I met the most wonderful doctor ever at my consultation. He had the miraculous ability to diagnose me with obstructive sleep apnea before conducting an actual sleep study, based on my answers to a few questions – and my weight!

Did you know that losing weight will solve all of my problems, including but not limited to sleep apnea! Clearly my lifelong history of depression, irritability, and anxiety are the result of my recent weight gain (which caused the sleep apnea) and not a lifetime of difficult family dynamics, codependency, emotional & physical abuse, and painful losses I never fully mourned. If I just lose weight, the sleep apnea will go away and I’ll be a happy, healthy, energetic, fully-functional adult! I’m so excited I want to go bake some cookies – but I won’t eat them!

[not sarcastic: Okay, I need to take a breather. *takes deep breath* My ability to put on this false, overly-cheerful tone is scaring me.]

I thought I was going to learn more about what the sleep study will entail: what kinds of tests they’ll run, what I’ll be expected to do, what treatment options might be proposed. Maybe a boring discussion about “practical” things like what my insurance is likely to cover and how I can access whatever I’ll need to get a better night’s sleep… why would I ever want that?

I’m so glad that instead, I got a lovely lecture on how weight loss could help me. You know, there really is an unfortunate shortage of information about dieting and what ideal bodies look like in this culture. I could almost cry to think of how fortunate I’ll be to have the opportunity to consult with a nutritionist and learn things about healthy eating that aren’t plastered all over the internet and every physical object that stands still long enough!

Even more exciting is the idea of having an exercise regimen! Ooh! The word “regimen” inspires so much joyful anticipation in me! I wonder how many crunches I’ll have to do each day, and how frequently the number will increase. Most of all, I look forward to seeing the expressions of disappointment and hearing the additional lectures about how important weight loss is every time the number on the scale isn’t what they’ve determined it should be. I just revel to think of it!

[not sarcastic: Actually, if they require me to adhere to an exercise regimen and be held accountable to someone else for weight loss – especially if treatment for my very real and serious mood disorder is contingent upon my successful compliance – I will … be dangerously tempted to kill myself.

also not sarcastic: By the way, there is one area in which I’m fairly confident taking Lamictal/lamotrigine was helping me: it reduced my suicidal ideation a great deal. I went from having suicidal thoughts almost every day and urges more frequently than I’d like to admit, to only occasionally having suicidal thoughts and rarely having suicidal urges. Even with all the stressful stuff I’ve been writing about, the temptation to harm myself has been a lot less severe than it was before I started taking this medication.]

Think you’re excited now? Just wait until you learn what happens next! When I – like practically everyone else – fail miserably at my attempts to intentionally lose weight, I can try bariatric surgery! (or, as Chrome’s spell checker wants to call it, “barbaric” surgery!) I can’t wait to trade in treatable conditions like sleep apnea for new long-term complications like low blood sugar, malnutrition, ulcers, and death (rare)! Equally exciting is the opportunity to struggle (for the rest of my life) with the same dieting I failed at when trying to lose weight without surgical interventions…

By far, the best part of today’s consultation was the rapport I developed with this amazing doctor. I was worried that he might listen to me when I told him about how my past efforts to intentionally lose weight have resulted in long-term weight gain. It would have been so terrible if he had respected my silly assertion that I “don’t” want to have bariatric surgery.

Ah, what a relief it is to have a doctor who dismisses my clearly-stated preference to receive treatment for the condition that brought me to his office in the first place. I’m so glad he spent most of our time together advertising for a surgeon he knows. Now I have the name and number of a doctor I may never be able to afford, and who most certainly doesn’t take my health insurance! I have never been more blessed.

I can’t wait to go to the surgeon’s free seminar and plead with him to take mercy on my poor obese soul by mutilating my body for a reduced cost. Perhaps he will take pity on me by referring me to a butcher whose fees are within my meager budget. I shall commence saving for it immediately. I know! Let’s use the money we foolishly used to spend on groceries! That should kill two birds with one stone.

[not sarcastic: I wish I’d read Ragen Chastain’s recent post, When You Have to Confront Weight Stigma before going to the consultation this morning. I could have brought her cards from What to Say at the Doctor’s Office with me. Maybe they would have helped me keep the focus of the sleep study consultation on my need for help getting a better night’s sleep! At least I know of these resources for next time, and now you do, too!]

Fus Ro Dah!

Since writing my last post and looking at lists of Lamictal/lamotrigine side effects, I’ve done a 180 and no longer feel safe taking my medication. Part of me believes it is a lot easier than confronting the APN about her decision to have me stop taking the medication. Part of me believes that I’ve been experiencing side effects the whole time and either ignoring them, not attributing them to the medication, or acknowledging them and attributing them to the medication but refusing to admit that maybe this isn’t the right medication.

All of me is angry at the APN, psychopharmacology, and the entire “healthcare” system: all doctors, their administrative staff, and especially managed care… I want to say I know it’s irrational, but is it, really? My blood pressure and heart rate are high and that’s set off some alarms regarding the medication… but maybe it’s due to the stress of trying to access medical care!

There isn’t really anywhere for this anger and the accompanying destructive urges to go. The APN’s office is closed for the federal holiday, so the earliest I might be able to talk to her is tomorrow. I have too much other stuff on my plate to waste time trying to get in touch with someone as flaky and dismissive as her! Verbally abusing anyone else would be mean and probably backfire. Physical acts of aggression, homicide, arson, etc. would take way too much effort. I’d rather play Skyrim. Shouting at people in that game is a lot more satisfying, and if it isn’t enough I can set them on fire with my mind.

So I’m just fed up with the whole thing and the thought of swallowing their b.s. in the form lamotrigine dispersal tablets makes me sick! I checked, online sources state that stopping lamotrigine without slowly reducing the dose first is safe for people who are being treated for bipolar, but not epilepsy. (do NOT take this as medical advice! Always talk to your doctor before stopping a medication.) Given the alternatives, I’d rather say “fuck you!” to medication and harness the energy from my anger to be awesome at my classes than keep taking something that may be making me sick.

There is a quiet voice in the back of my head saying that maybe it’s the therapeutic effects of the medication that have helped me get to this point. But my symptoms haven’t been much better than before I started taking it, and I’m inclined to attribute the ups and downs to the circumstances of my life. I can’t tell if it’s making a difference, so maybe it’s not. “There’s no point in taking it just to take it.” Right?

I’ve been wasting too much time and energy on this. There are about a million better things I could be doing!

Dismissed

I had another appointment with the APN on Friday. She took my blood pressure – which was a bit high, both for me and based on the health guidelines I’m aware of – and said it was “fine.”

Then she asked how I’ve been. I told her about being tired and unmotivated to do anything; sometimes I don’t even feel motivated to play Skyrim. I tried to put it in the context of everything that’s been going on: the stress of the holidays and then everything just stopping. I told her when I’m very depressed there’s less anxiety because I don’t want to do anything so there’s nothing to be anxious about, but when I’m less depressed and starting to want to do things I feel anxious about them. (To be honest I’m not sure that’s entirely true. I experience different kinds of anxiety. But I didn’t express this to her.) I also told her about the ominous voice twisting all the imagery in the guided meditation into things I found threatening. I told her I’m both excited and anxious about my classes starting next week: excited because I’ll have some structure in my life and anxious because of the responsibilities. (Not to mention my social anxiety.)

As I was talking about this stuff, she was making notes on the computer (facing away from me). Then she looked back through her notes from past appointments and the information I’d provided in the intake paperwork before our first meeting. She weighed me and told me I’m a candidate for sleep apnea. She told me to go get blood work done so she could see if there is a problem with my thyroid or something (past blood work has ruled that out, but I haven’t been able to show her the printout to prove it). She also called a sleep center for me and handed me the phone, basically forcing me to make an appointment for a sleep study.

Okay, I’ve been dragging my heels, I can kind of understand her being a bit heavy handed. But the next thing she did utterly terrified me.

She told me to stop taking the Lamictal/lamotrigine. She said I’m “sensitive” to it and it doesn’t seem to be helping. “There’s no point in taking medication just to take it.”

That’s it. No plan for slowly reducing my dose over time to minimize withdrawal symptoms. No concern over what effects suddenly stopping Lamictal might have on me. Granted, I’m only taking 75 mg, but we’ve worked our way up to that dose very slowly. If I’m “sensitive” to it, doesn’t that increase my chances of being “sensitive” to suddenly not taking it?

I honestly don’t know if it’s helping. Maybe it isn’t. Maybe it’s wreaking havoc on my central nervous system and I should stop taking it immediately. She didn’t explain why she thinks I’m sensitive to it, and gave a very simplistic explanation of why I should stop (which suggested she views me as medication-seeking). Her tone sounded dismissive to me, so I didn’t feel comfortable asking questions. I couldn’t think quickly enough to formulate them and felt like she wouldn’t listen anyway.

Maybe it is helping and my depression would be a lot worse without it. I feel like she’s not taking my life circumstances into account. I was doing great up to the wedding, then suddenly all my loved ones had gone back to their own lives, nothing meaningful had changed, and I no longer had something important to work on. I couldn’t sleep for a week or so while Mom was having work done on the roof. Then the holidays were a blur of excitement, socializing, not getting enough sleep, and thinking my godmother was going to die. Then, once more, everyone left and everything stopped – except worrying about my godmother. The floor dropped out from under me – and my pending courses for the Spring semester are looming over me.

The courses are the thing that has me the most concerned about stopping my medication. I’d like to have a bit of stability going into such a big lifestyle change; the last thing I need is unpredictable changes in my body chemistry and mood at the same time I’m going into a frightening and challenging situation. The last time I took these courses I had to drop them because they were triggering self harm and suicidal urges. I don’t feel safe trying to take them again without some kind of safety net. (I should probably talk to my instructors about this.) At least taking medication is something I’ve been able to do with some consistency; I feel like I’m doing something to help myself!

I suppose I could possibly enjoy the same effect from continuing to take my supplements (omega-3, vitamin d, and a vitamin b complex with folic acid and vitamin c), but I really don’t want to give up on the Lamictal just yet. Wakana has been urging me to take medication for so long (since before I started this blog), I hate the idea of finding that yet another one doesn’t work. I don’t want to start from scratch again…

During the meeting with the APN, my mood went from 1) low energy, depressed and a bit anxious, to 2) slightly higher energy and a bit irritable, to 3) more depressed, frustrated, and wanting to cut myself. She ended the appointment after telling me to stop taking the Lamictal; she didn’t even ask if I had any questions or concerns or anything else I wanted to talk about. I feel like she thinks I’m not really depressed or only mildly depressed and that I’m being lazy.

(Much of our conversation was her giving me advice: to make healthier food choices, move around more, make a schedule for myself, and give myself a to-do list with simple tasks that help me feel good. Some of these are lifestyle changes I want to make anyway and think would be helpful, but in general it sounds like stuff laypeople say to people with depression because they don’t understand it.)

I left and made sure I have future appointments pre-booked, but thought about not coming back. In an ideal world I would find a better psychiatrist, but with my insurance that would be a nightmare. And I’d have to start the whole medication dance all over again! When I was halfway across the parking lot I thought about going back to ask about reducing my dose slowly, but decided I wanted to consult with someone before trying to advocate for myself. I had just utterly failed at advocating for myself and was in no state to do so successfully.

I talked to someone I know who works with adult psych patients and has bipolar himself, and with his wife who has a good amount of medical knowledge – including potential effects of different drugs and what various symptoms might indicate. Together they helped me decide to continue taking my current dose of the Lamictal until I’m able to talk to the APN again. They encouraged me to talk to Wakana about it and have her talk to the APN as well. My friend with bipolar also made an important point: my insurance might not approve the sleep study right away, or in time for our next appointment, or ever. I can’t wait, untreated, while they bathe in red tape (as I have been for my tooth – brief update: I have an appointment for a periodontal consultation and another to get a root canal).

At the very least, I want a better understanding of her thought process. I want her to sit down and look me in the eye and answer my questions until I feel confident in whatever course of action she prescribes. Is that so much to ask? If I have to go off Lamictal, I feel much safer reducing my dose slowly with a plan we’ve come up with together. If possible, I intend to have Fox there with me. He’ll be there for my future scheduled appointments, at least!

a day with episodic mood disorder not otherwise specified

Today I asked my APN what her official diagnosis for me is, hoping (among other things) it might help me present myself more accurately on my blog. She confirmed that, especially based on my past response to anti-depressants, uni-polar “depression” doesn’t capture the whole picture of what’s going on. I guess she’s not sure what’s going on. To the extent that I do know, I have no idea what to call it. I was hoping she could give me an idea. But “episodic mood disorder not otherwise specified” just doesn’t have a good ring to it – even when shortened to “mood disorder NOS.” I might as well just say I have emotional issues. Well, almost. I have clinically-relevant emotional issues.

In other news, she decided to lower my Lamictal dose from 75 mg to 50 mg due to concern about possible side effects. On the one hand I’m glad she’s taking my concerns seriously and being cautious with the only brain and body I have. On the other hand, Wakana had suggested I should increase the dose – that the lower doses aren’t enough to be therapeutic – and I’d been expecting us to move in that direction. I guess there’s still the possibility of increasing the dose if that seems to be the best course of action; it’s probably better to trust the person who has the required training, certification, and experience to make decisions about this sort of thing.

But APN is talking about adding a new medication (that I’ve never taken or heard of before) to help fight the chronic lethargy I’ve been experiencing. I’m really not a fan of taking multiple medications. Even just being on one medication has me concerned about long-term effects and my ability to safely be a biological mother on my own terms someday. Let’s say I do experience side effects: how am I supposed to know which medication is causing them, or whether it’s an interaction between the two? More medications also means more risk of interaction with environmental factors, food, caffeine, and alcohol.

I may not be too thrilled with how today’s appointment went, but I still have confidence in my APN. She’s not just prescribing medications, she’s looking at the whole picture. She suggested I get blood work done so she can get a better picture of my physical health, including how it might be affected by the new medication she’s considering. She also re-encouraged me to have a sleep study done. Maybe if I do that, they’ll address the lethargy well enough that I won’t need to take a second medication! Finally, I appreciate that she asked me if I was seeing a therapist or would be interested in therapy. It shows she considers therapy to be an important part of treatment. She also encouraged me to work on setting boundaries, so I can distinguish between what I’m feeling and what others are throwing at me. That’s what most of the posts in this blog and the work I’ve been doing with Wakana are about, so I guess I’m on the right track. It’s just taking an uncomfortably long time to get where I need to be.

Side Effect?

I’m having an experience that’s new since I’ve been taking Lamictal/lamotrigine, possibly since my daily dose was increased to 75 mg. It happens when I’m very tired and close my eyes and drift off a bit: if there is a sudden sound, I see an explosion of small white lights. Kind of like fireworks. The sound doesn’t have to startle me, just bring my attention back to the present. The phenomenon isn’t painful, scary, associated with a change in mood, accompanied by physical symptoms/movement, or anything else that would suggest it is a serious concern. It’s just… different. I’m not sure whether I should be concerned about it, but I plan to bring it up the next time I talk to my advanced practice nurse.

Oh! How It Burns! (depression checklist)

I have now been tracking my scores on the Burns Depression Checklist for four months straight! Go me!
(July-August, August-September, September-October)

This month, my average score was 18. My scores for more than half the days were in the teens (the low end of mild depression); I had an unprecedented 5 days when my score dropped below 10, into the “normal but unhappy” range. To put things in perspective, my usual level of functioning is mild-to-moderate depression; “normal but unhappy” days are the best days of my life! This month’s scores are a huge improvement over previous months (linked above), when I was moderately depressed on most days.

Ziya's scores on the Burns Depression Checklist from October 17, 2014 to November 18, 2014.

Ziya’s scores on the Burns Depression Checklist from October 17, 2014 to November 18, 2014.

Ziya's (standardized) scores on the subcategories of the Burns Depression Checklist from October 17 to November 18, 2014. The subcategories are Thoughts and Feelings (blue), Activities and Relationships (red), Physical Symptoms (green), and Suicidal Urges (purple).

Ziya’s (standardized) scores on the subcategories of the Burns Depression Checklist from October 17 to November 18, 2014. The subcategories are Thoughts and Feelings (blue), Activities and Relationships (red), Physical Symptoms (green), and Suicidal Urges (purple). I only had suicidal urges (mostly just thoughts) on 6 days this month!

The Lamictal / lamotrigine I’m taking definitely seems to be helping. I’ve consistently taken it around 4:00pm every day, starting September 29th. My dose doubled from 25 mg to 50 mg on October 27th (purple vertical line). I’m very pleased with the benefits I’ve been receiving from it and especially the lack of side effects. It also seems to be helping with my anxiety symptoms, and I feel less irritable (though to be honest I haven’t been tracking those symptoms).

There are definitely environmental / situational factors that influence my depression symptoms (not to be confused with situational depression). For example, on Election Day (red vertical line) my score shot up from below 20 to 43 and I experienced my first suicidal urges in 2 weeks. To be honest, I think that’s the only sane response to the new Congress that – among other things – has vowed to repeal the reason I can afford medication! I don’t want to know what else they plan to do, but none of it is good for the vast majority of the people in this country.

There was also my and Fox’s big family wedding on November 9th (green vertical line). I felt really good leading up to that day and had a ton of important things to do. I got to be creative and problem solve and collaborate with Mom and get my hair done at a salon full of awesome people I enjoy talking to and wear a gorgeous dress and be congratulated about a million times. Sure, there were some aspects of it that were stressful, but a lot of it was fun. I was proud of myself for running the rehearsal on the night before as well as I did. I got to forget about all the stress at the combined bachelor/bachelorette party our friends threw for us; that was a fabulous time! And then there was the day itself… I’ve already written about it twice!

My scores on the depression checklist increased gradually from 6 on the 8th and 9th (OMG, 2 consecutive days with such a low score! That’s heaven for me!) to 34 on Monday (eww). I felt every point of increase and it was incredibly painful. I didn’t have the energy to connect with Fox and I’d cry when he left for work each day. I’d cry for no obvious reason. I had no motivation. I just wanted to fade away and stop existing. The worst part is I knew that if I stopped playing The Sims 3 and went out to socialize I’d feel better. But I just couldn’t bring myself to do it!

Finally, yesterday (Tuesday) I dragged myself out of bed to go see Wakana for our regularly-scheduled music therapy session. Just being able to do that felt awesome. She witnessed me expressing how I felt through words, body language, and music. She empathized. She helped me address some of the things that are really getting me down. For example, Mom had brought up how much it costs each month to see Wakana, with the very strong implication that I should stop draining her of that money. She doesn’t seem to get how much I need and benefit from it, and I feel like that matters less to her than “getting ahead” financially. Sometimes it seems like she sees my whole life as a financial transaction; she’s “investing” in me and losing all her money. I can’t repay her – at least not financially. My love, the joy in my life from experiences like getting married and having children someday, whatever academic success I can muster, even the financial security I’m still striving for … these things cannot be a repayment of some debt! I owe her my whole life, but I can’t live it for her. I have to live it for me.

Wakana heard and understood and strongly encouraged me to apply for jobs. She also said I could invite Mom to one of our sessions. I’m kind of dreading it – assuming I can convince her to come – but I think it may be necessary.

Jobs. I signed up to be a tutor, which is kind of hit or miss depending on whether students decide to contact me. I think I’d be okay in the subjects I said I could teach. Today I was going to apply for a job I found yesterday that sounded awesome, but when I went to look at it the listing had been deleted. That undermined any motivation I had to do useful things.

Anyway, I decided to hang out at a nearby cafe after my session yesterday and enjoyed myself quite a bit (including saving potential job listings to apply for later). The food and drinks were good, it was a pleasant atmosphere, it got me out of the house and away from The Sims 3, and best of all I got to socialize a little bit. Even just being surrounded by people who were all doing their own thing was energizing. I’m still coming to grips with this whole being an extrovert thing. I like being around people. I need to stop isolating!

But how?

Exhausted

I’ve been spending a lot of time with my mother lately, mostly doing things for the wedding (or talking about them). It feels good to be productive and my social activities score on the Burns Depression Checklist has been extremely low (which is good). Things are getting done, it’s all coming together, and for the most part I’m happy and optimistic.

On top of wedding stuff, I’m doing my best to be supportive of Fox: giving him massages, making sandwiches, doing my best to be responsive to his needs. It can’t be all I am, but for now I find it empowering because I can make a difference for someone I care about and he appreciates it. (He’s working full time in a job that has him on his feet all day to support both of us.)

The only catch is, all this stuff doesn’t really leave a lot of time for me.

The time with Mom usually starts out good. She gives useful suggestions and feeds me and we talk and we get stuff done (admittedly, more than I probably would if left to my own devices – but don’t tell her that!).

But over time she gets to me. She’s freaking out about every little thing – and freaks out even more if someone tells her she’s stressed and she needs to calm down. From what she’s told me, they send mixed messages: “You have to do this! Actually you can do whatever you want, stop worrying about what people say you have to do.” Something about goodie bags for hotel rooms, I tell her “don’t sweat it,” she thinks I mean don’t do it and gets angry because she’s already gotten all the stuff and I have to explain myself. (It’s great she’s doing them and what she has is overly generous, so she can just do what she’s planning and not worry about it – i.e. please stop talking about it.) This person’s saying this to her and that person’s afraid of that and I don’t have any of the context so I freak out because I want everyone to show up and have a good time and congratulate me.

She’s talking about it constantly and she can do whatever she wants for the wedding, but I can’t do this idea because it’s not appropriate for the type of event I’m hosting or that idea because it’s “too much” or whatever. It’s my fucking wedding, what I want should be law, but that’s just now how it works in the real world (or at least my world). She thinks we should list the buffet selections on the program, Fox thinks it’s tacky, I don’t even know what I want except for him to happy with it. Finally she agreed to make separate menu cards and we adjusted the spacing on the program so now it’s perfect. Let’s move on!

I feel like it’s her wedding and she’s constantly telling me what to do for it. I feel like my life is her life and she’s constantly telling me what to do for it. I say “I need to ______” and she says “You need to ________” like I don’t know or “Well? Why aren’t you doing it?!” – the answer is usually “because you’re in the middle of a sentence.” Planning my own wedding shouldn’t feel like I’m constantly being assigned homework.

There’s so much going on and so much that’s been done I don’t even know what I need to do anymore! I feel like I’m going to forget the most important thing, like writing my vows. By the time she decides to call it a night and stop randomly invading my space to talk about this and that, I can’t think anymore. I’m literally too exhausted to think. I kind of want to… oh please don’t say “die,” I’ve gone 13 days without any suicidal urges and I want to keep up my streak! Have some time when I don’t need to think, especially not about wedding stuff. Time when I can just exist, rest, relax … maybe meditate?

On a related note, my whole experience of life has shifted quite a bit. I’m a lot less depressed, and despite being stressed out about everything above and more I think I’m less anxious and irritable and whatnot, too. Okay, maybe not less irritable, I have been fighting with my mother quite a bit – but I consider that an improvement over being a doormat. Well, okay, I’m kind of still a doormat. I’m a doormat with at least one corner that rolls up and trips people. But I have reasons to fight with my mother, I’m not just angry at the people closest to me for no reason. That’s definitely an improvement.

I used to be depressed pretty much all the time, except for really good days when I was considerably less depressed. Now I think there are times during the day – occasionally, whole days – when I’m not depressed at all. (There might be some symptoms of depression, but not enough or severe enough to be problematic.)

Ironically, I notice my depression more because it’s a significant change in my functioning: sadness I can’t explain or that comes on stronger than I’d expect, feeling like all my energy has drained away, losing interest in engaging with other people and the world, trouble concentrating or focusing (nor not wanting to think anymore because I’m so exhausted)… I can almost say, “at about noon I was feeling happy and I had energy and I was focused on doing this and that and asserting myself and knew I could achieve what I was setting out to do, etc. … but at 6pm I felt depressed.” I’d feel a lot more confident saying that – and especially giving specific times – if I were writing down significant shifts in my mood throughout the day.

I still kind of hesitate to attribute the improvement to the Lamictal, but I am pleased to say that I’ve been taking it consistently at about the same time every day. Continuing to do so is important to me, especially with all the stress around the wedding and the crash I expect to happen afterward (based on past experience; multiply that by about a million). My scores on the Burns Depression Checklist in the week after the wedding will be the real indicator of whether this medication is helping me. In the meantime, I’m encouraged by the improvement in my scores since my dose was increased and the lack of significant side effects.

If you’re in the U.S. and you haven’t voted yet, please do so!