Power Naps – Links

I suspect I may have a sleep disorder that keeps me from getting a truly restful night’s sleep. Until I’m able to remedy this, I’m inclined to try napping as a way to refresh during the day. So far 20-minute naps seem to be ideal.

Here are some links to articles about how to get the most benefit from naps:

How Long to Nap for the Biggest Brain Benefits
different durations for different benefits

13 Tips for the Best Naps Ever

The Secret (and Surprising) Power of Naps
WebMD article

How to Design the Perfect Nap

Sleep Calculator
helps determine when to go to bed or when to wake up for the best sleep/nap

Interactive Nap Wheel
helps determine the best time to take a nap based on when you woke up

Healer, Heal Thyself

I came up with a music therapy intervention that not only meets the criteria for at least one part of my piano improvisation midterm, but is also useful for me in my everyday life! I was playing an ostinato (repeated musical pattern) in Mixolydian and kept thinking: “this wants to be a movement intervention, but it’s so tranquil.” I kept imagining myself slowly raising my arms above my head and inhaling, then lowering them and exhaling – like one might do as part of a warm-up for yoga.

Everything I’ve been learning about improvisation, psychotherapy, music therapy, and improvisation points to the same essential guideline: Work with what the client is giving you. My mind was giving me a movement, so I decided to go with it. I played the ostinato in my left hand, used my right arm to do the movement, and sang instructions with the melody that felt most natural. I added turning to one side, back to the center, to the other side, and then back to the center again.

Then I changed up my playing and added my right hand. Initially the music (including my vocal melody) had been very flowy and tranquil, “holding.” I changed it to be more like playing a drum, with shorter sharper notes and pauses between chords, “driving.” It also became slightly faster.

I sang instructions to step side to side and clap, similar to what one might expect in step aerobics. There is an option to increase the tempo (speed), depending on the client’s response and how much time there is for repetition (I need to keep it short for the midterm). I suppose other directions, such as forward and back, and possibly even turning one’s body as one steps, can be added.

After a short time, I returned to the original “holding” music (including vocal melody). I sang instructions to turn to one side and then the other first, then ended with the instructions to raise and lower arms. This gives the exercise a nice symmetry and is intended to help the client remain calm and focused. The whole thing takes about 2 minutes.

Music therapy students are encouraged to be specific regarding which clients would benefit from an intervention, what needs it addresses, and how it meets those needs. It didn’t take me long at all to realize that a simple movement activity like this would be very helpful for me: an able-bodied individual with anxiety and depression, who can follow verbal directions and typically lacks the energy and motivation to exercise.

Everyone (including scientific research) says that physical activity is a highly effective “treatment” for depression, possibly the most effective. I’ve experienced its benefits firsthand, when my symptoms have been mild enough to allow me to do it. The problem is, an intervention doesn’t work if it’s inaccessible to the client (for example, I’d need to modify my instructions – or even come up with a whole new activity – for someone who uses a wheelchair). So, even if exercise could cure depression it doesn’t, because the symptoms of depression prevent exercise.

Which is where my intervention comes in. I could totally see Wakana doing something like this, particularly on a day when my energy and motivation are so low I ask to meet via Skype. I can hear her voice saying, “Stand up, we’re going to do something about this;” I can feel myself groaning as I drag myself out of my chair and scowl at her – annoyed, but secretly hoping that whatever she “makes” me do will provide some relief.

It starts out holding, comforting, with very simple movements that don’t take a lot of energy and can feel good as soon as I start doing them. It’s meeting me where I am: in need of emotional support. The amount of movement, energy, and coordination required increases gradually. When used as a live intervention, the therapist can adjust the level of challenge to meet what the client is capable of at that time. It can be recorded and used by the client (e.g. me) as a daily movement activity that is a million times easier than going to the gym, taking a walk, or even playing Wii Fit. Hopefully it will provide enough energy to encourage additional exercise.

Physical movement aside, I believe listening to the musical intervals (the specific sound created by playing two particular notes simultaneously or consecutively) in my intervention can be intrinsically healing. The Anthroposophical Concept of Intervals describes them in terms of 1) inner or outer focus, 2) movement or stillness, and 3) balance or tension. I find that my musical self-expression, especially when my symptoms are at their worst, tends to involve mostly intervals that are associated with inner focus and tension. There is definitely a place for these elements – in life and in music – but sometimes we need a break from them!

When I was creating this intervention I intentionally chose intervals that are associated with 1) both inner and outer balance as well as 2) active movement outward. Whether I move my physical body or not, use of these intervals reassures me that I am safe and I can direct my energy outward. In other words, these intervals directly contradict the distortion at the core of my mental illness. They free me to be the healthy Self I always am.

All that, in two minutes! I love music therapy.

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.

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!

All I Want for Christmas Is to Breathe

trigger warning: nicotine/cigarette addiction, hospitals, life support, potential anxiety medication side effects

My godmother is addicted to smoking cigarettes, struggles with depression and anxiety, and is socially isolated. She’s been doing less and less and getting tired very easily. She’s been in and out of the hospital with respiratory issues, but this time was extremely scary: at one point on Christmas Eve she was actually turning blue!

I hate hospitals. I watched my father deteriorate when he was dying from lung cancer in a hospital. I was powerless. I could do nothing to help him, my other family members, or even myself. The environment inside (traditional) hospitals is the worst for healing. There’s a whole awesome movement – arts in healthcare – to transform hospitals into healing environments with natural light, curved surfaces, open spaces, pleasant colors, nature scenes, less toxic noise… but I don’t think they’d even started researching that stuff when my father was in the hospital. And the hospital where my godmother currently is has never heard of it, either. This hospital is a contender for a version of Hell. We would have wandered lost in a maze of spaghetti box hallways in drab colors with ominous doors and incomprehensible signs for hours if the nurses hadn’t decorated the area around their station for the holidays. When I saw that I said, “Let’s go toward the bright colors before I have a panic attack.”

When we arrived on Christmas afternoon, my godmother was on her back with a mask suctioned to her face, practically forcing her to breathe. I wasn’t sure if she was conscious. She squeezed my hand with a pulse. When she tried to talk I couldn’t even make out syllables, never mind words. She sounded so small and scared. We told her we were here and we loved her and spoke to each other in hushed voices. I tried to find a song on my phone that she might like, but my data connection was limited and the songs that came up weren’t exactly conducive to healing – for her nor anyone else in the room. I felt foolish as well as powerless.

The hospital staff were talking to her father, brother, and son about putting a tube down her throat that would require her body to make even less of an effort to breathe. Life support. I don’t know what her or their views on life support are, but in my mind it’s worse than death. If a person dies they can be at peace and the family can mourn. Existing for god-knows-how-long on life support is just torture for everybody. There’s no peace, no healing, no recovery, no closure. Just life-destroying medical bills.

I didn’t even need to express my views; the family members with the right to make such a decision made it clear that it was unacceptable. Her brother and son told her she needed to try breathing on her own, it was the only way she could recover so they’d be able to take her home. She was scared, but they convinced her to switch to a mask that would just provide extra oxygen – without forcing air into her lungs. We were asked to leave the room; I was an emotional wreck.

I don’t even know how long I was folded in the cocoon of Fox’s arms, while he worked some kind of magic, before I was able to relax. It was amazing! When I stepped back and looked at him I felt calm, grounded, like my whole world wasn’t shattering.

With the new mask my godmother was awake and able to speak coherently. She wanted to sit up – to stand even! The nurse and everyone else kept telling her she’d exert herself too much and she was fine lying in bed, but she wouldn’t hear it. I asked her why she wanted to stand and she said the wires and tubes they had attached to her were pressing on her chest and neck. As far as we could see they weren’t, but she insisted. After some more back-and-forth, she sat up – practically without assistance.

Only then did her complexion approach normal and she said she was feeling better. She asked for water and talked with us, even smiled at our jokes. I felt connected with her and inspired by her determination as I watched her work to hold a seated position – without back support – and to breathe. In a whirlwind of “you need to do this” and “you look like this” and “are you sure you don’t want to do this” I did my best to remain the voice of empathy. “How do you feel?” “What do you want?” “Is this helping?” “I can relate.” She really seemed to appreciate it.

Physically, she was working to breathe and she said she felt like shit, but otherwise everything was normal. Her lungs are okay considering how long and how heavily she’s been smoking. Her resting heart rate and blood pressure were a bit high, but not enough to cause concern; her blood had plenty of oxygen in it.

But her anxiety was through the roof, to the point where if we weren’t there comforting her it would have interfered with all the physical stuff. In the moments when she was able to retreat into her own thoughts, we could see the pain they were causing her on her face. Guilt. Self-hatred. Anxiety. The realization that she could have died. Knowing she has to give up the one thing that’s been consistently there for her through loss and change and loneliness and the most difficult times. She’s tried to quit smoking and failed because overcoming the chemical addiction to the nicotine isn’t enough. She needs emotional support. She needs something to replace the role the cigarettes play in her life.

The solution she was handed was “Don’t be anxious.” I looked her in the eye and said, “Yeah, but how?” I told her about anxiety goggles, the idea that sometimes it’s like someone has put these goggles on me and everything seems overwhelming and I’m lost and I don’t know what to do and I can’t imagine how the world would look without the anxiety… but if I remember that I’m wearing the goggles I can think, “Maybe it isn’t as scary as it looks right now. Maybe that thing that seems so horrible isn’t as bad as I think. These goggles are distorting my view.” and I can try to separate myself from it. I wanted to suggest meditation or something she could do to channel the anxiety out somewhere or something, any of the number of measures people have suggested to me and I’ve found helpful. But it was hard to think in that room, hard to get my voice in among the people saying “Don’t be anxious,” and I felt a bit self-conscious about it, too. Would my contribution be taken seriously? More importantly, would she actually find it helpful?

My godmother requested a particular medication for anxiety – not the one the hospital staff seemed to want to use because that interferes with her breathing – so a doctor came in to talk about it. He said something to a nurse about giving the patient her medication when the family leaves, because that’s when she becomes the most anxious. When my godmother told him about the medication she wanted, he expressed concern because “it could cause your stomach to expand and force anything in it to come up and you could choke on it.” “Well, that’s not a problem, I haven’t eaten in three days.” “It’s still a concern. You could suffocate on your own secretions.” A doctor seriously told his patient who was struggling to breathe moreso due to anxiety than any physical ailment that she could suffocate on her own secretions! I don’t even have the words.

Self-consciousness be damned. I raised my voice to make sure he could hear me. “Let’s lower the anxiety in the room please!” I asked if they had any interventions for anxiety other than medication. He said he’d have the psychiatrist evaluate her. I backed off, mostly because I didn’t know what my godmother wanted so I didn’t feel comfortable trying to speak for her. I also didn’t know if the kinds of interventions I could think of would cost the family more than they could afford. But I don’t think – and I didn’t at the time – that she needs a psychiatrist. I learned later that the psychiatrist had already seen her and clearly wasn’t helpful. In the time since that moment, I’ve refined what I wanted to advocate for: someone to calmly inform her of any available alternatives to medication for managing her anxiety while in the hospital, and to follow through on whatever she said she thought would be the most helpful. Bonus points if they could also give her resources for when she leaves the hospital. Someone to listen to her. Why oh why would no one else listen to her?

Hours later, after she had decided she wanted to lie down and we had left to go have dinner, I learned that her son had been permitted to stay with her overnight. The nurse had advocated for it. I was so relieved to know that at least one need could be met: he was better than all the rest of us at noticing when she was retreating into her mind’s torture chamber. He could pull her back out of it.

Overall, I actually consider it to be a relatively positive Christmas experience. I got to connect with family members I’ve been feeling disconnected from, talking and joking and being honest with each other. We didn’t have TV or other convenient distractions; we were each other’s distraction from the hospital. We were there for each other.

Music was supposed to make me invincible, but it didn’t. My cousins’ compassion and determination – and her courage – were what got my godmother breathing on her own again, sitting up and conversing with us. All my years of schooling – and maybe even the lifelong involuntary therapist training – were worth it, because in the middle of hell with all of everyone’s (especially my own) anxiety I was able to help someone by empathizing with her. By being with her in that moment. By being honest about my own vulnerability. And by speaking up. It was a valuable learning and healing experience for me.

All I’ve heard since is that she’s still in the hospital. She texted hugs and kisses to Mom; when Mom asked if she could talk she replied “no.”

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.