Moody Monday: Feedback

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

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

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

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

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

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

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

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

Moody Monday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

illustration by Jessica Krcmarik

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

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.

Second 3-Month Review

Wow, it’s hard to believe this blog is already 6 months old! It’s grown a lot since I created it in mid-December. I’d like to say I’ve grown a lot, too – at least, I’ve gained a better understanding and acceptance of what’s going on in my brain, and turned my focus toward tending to my mental health needs. I don’t always do my best with that, but at least I’m trying; at least it’s my priority.

So far I’ve published 105 posts (this will be #106) and Fox has published 2: “Masculinity, Tools of Violence, and Embracing Femininity” and “From a Supporter’s Point of View”. A Day with Depression has gained over 100 followers and receives over 400 views per month from visitors all around the world! I cannot express how inspired I am by the readers of this blog. Thank you all so much for your support!

A Day with Depression 6-month Stats

The dark blue columns indicate number of viewers per month, while the light blue columns indicate number of views. Click the image to view a larger version.

The dark blue columns indicate number of visitors per month, while the light blue columns indicate number of views. Click the image to view a larger version.

I would like to extend a special thank-you to international readers, who make up about 1/3 of the visitors to this blog. Click the image to view a larger version.

I would like to extend a special thank-you to international readers, who make up at least 1/3 of the visitors to this blog. Click the image to view a larger version.

I posted my First 3-Month Review on March 12th; check that out to read a synthesis of posts from mid-December through mid-March, organized by theme. My current review begins just after that post.

As tempting as it is to focus primarily on my depression, anxiety is a significant factor in my life that affects everything from my ability to get ready and go places in a timely manner, to my ability to sleep, to food choices, to my very career. On March 15th I changed my tagline to reflect this. I also reflected on the primary sources of anxiety at the time: my rats’ health, my own academic performance, and becoming a caretaker for Mom (who was, at the time, preparing to receive double knee replacement surgery). In all these situations I felt like I lacked control, questioned my ability to “perform” well, and expected to have unpleasant experiences. It didn’t help that I felt “violently torn and ripped to shreds” by Mom’s expectation that I would meet her needs arising from a decision she had made, in combination with (what I perceived as) her simultaneous lack of respect for a decision I had made.

I found that taking action seemed to help reduce the anxiety – at least temporarily. “Taking action” included doing my homework and beginning to take anxiety medication (Buspar) in addition to the SSRI (Zoloft); I’m thinking perhaps it should also include regular exercise. The thing about taking action that relieves anxiety is that it gives at least a small amount (or semblance) of control over a stressful situation. For example, I take control over my academic performance by doing my schoolwork, which generally turns out to be high quality. But in life there are a lot of extra factors involved, such as noises waking me up in the middle of the night and the job market and my difficulty finding clothes I like that fit and how expensive everything is and the cruel malicious things people with power and wealth do to make a profit and misogyny and all the messages in mainstream American/Western culture that make me want to turn into the Hulk and destroy everything associated with it.

Click the image to read the blog post: "Being Carrie Marin."

Click the image to read the blog post: “Being Carrie Marin.”

Sometimes I need “taking action” to mean blocking it all out; my default form of doing so is to play a game where my character doesn’t have to deal with all that shit. She can take more direct action to accomplish things I feel I (currently) cannot: earning money, creating things with value to herself and others, dressing sensibly but fashionably, traveling, making friends, and ridding the world of evildoers (and people who piss me off). Best of all, anxiety is never an obstacle for my character; she never has to worry about the sacrifices involved in “desirable” life transitions (as I described in Giving In). If the shit hits the fan, I can reload a recent save and try again!

In early April, “taking action” meant making the very difficult decision to drop the two graduate-level courses I need to complete my degree and enter my chosen career. I had already waited 2 years to take them and will have to wait 2 more years. But my anxiety and self-criticism attached to those courses were posing a significant threat to my health, possibly even my life. It was the first time I made such a huge sacrifice in my academic life to tend to my mental health.
What I Need + Withdrawn + Taking Off the Mask + Grace

Around the same time I started using poetry as a means of expressing what I found difficult to say in prose. Themes included: my need for space to rest and work through the depression (Wish & Taking Off the Mask), my guilt about spending so much time playing The Sims 3 instead of with Dog (Groundhog Day), what I was trying to block out (Re: Groundhog Day), anxiety (Nightmare), and why I was avoiding my mother (Silence).

ambivalenceThen, the shit hit the fan. Fox learned he had to move out of his apartment after the end of the semester and requested to move in with me. I addressed my thoughts and feelings regarding the matter in Living Together, but the issue went on the back burner until fairly recently. We’ve both been stressed out of our minds about the whole moving process: his need for me to drive him there and back, sorting through and packing his possessions, and finding space for everything in my home. I’ve been procrastinating going through and reorganizing my own stuff because I’d find that stressful in the best of times, and right now I’m terrified of merging with him. A huge part of why I tend to get up in the middle of the night is because it’s the only time I can truly be alone, focused 100% on whatever I choose.

warning-signs-of-caregiver-stressWhile Fox moving in was on the back burner, Mom had her double knee replacement surgery. I was overwhelmed by anxiety for her, frustration about not really being able to do anything for her, my own fear and hatred of hospitals & medical professionals (stemming in part from bad past experiences when loved ones – e.g. my father – were terminally ill), my inability to manage other responsibilities such as schoolwork and chores, and my resentment toward her for being able to receive the treatment and support she needed – including from me – while I felt left largely on my own to try and survive with severe depression and anxiety. I was eventually able to talk to her about some of this stuff and found her to be more compassionate, concerned, and supportive than I’d expected. She’s actually been quite independent (and willing to call on other people for help), doing all she can to lessen the pressure on me – especially as she gains mobility. She also shows a lot of appreciation for my efforts to help her.
PANIC!!! + Don’t Hurt My Mommy! + How to Visit Mom in the Hospital + (Barely) Holding It Together + Sculpture + Communication + Awesome

An unexpected self-portrait.

An unexpected self-portrait.

As if all this weren’t enough, I’ve been struggling with my own symptoms and lack of much-needed treatment. I was off my meds for five days (ending a week before Mom’s surgery) because I couldn’t juggle refilling the prescription in a timely manner with everything else that was going on. I kept seeing disturbing images of knives cutting various parts of my body. I was hurt and angered by Psychiatrist B when he interrupted me in the middle of talking about suicidal and self-harm ideation to take a phone call. A later conversation with Wakana (who had hoped to coordinate treatment with him) confirmed that I need to find a new psychiatrist. I haven’t gotten around to doing that yet because I’m frustrated with the whole process and have been distracted by everyday shit such as the end of the semester, followed immediately by Fox’s move. I’ve been hypersensitive to loud clangy sounds, to the point where I had a severe anxiety response to an action movie. Wakana had to cancel a few of our sessions due to health and family issues, and I had to request phone sessions because I lacked the energy, motivation and/or time management skills to get to her office. I’ve been so physically and mentally exhausted and obsessed with Elder Scrolls IV: Oblivion that I haven’t been able to focus enough to express my thoughts and emotions through writing or other creative means (on most days).

That said, I have made some efforts to express and care for myself. The Bloody Arms Project was an attempt to channel the self-harm ideation (which mostly involved an urge to cut my arms) and the painful emotions behind it into artwork. Not long afterward I discovered the joy and catharsis of Sculpture, which enabled me to channel my anguish into art I took pride in and perceived as beautiful.

CaptureMay“Sculpture” also became a metaphor for taking control over my own life and depression treatment, including asserting my needs in conversations with Mom. I learned about the potential benefits of aromatherapy and had the opportunity to try it out, with good results. Although I have yet to really act on taking a full day once per week to focus exclusively on my own health (Ziya’s Day), it was after I asserted this need that Mom really started being more independent and turning to other people (instead of just me) for help.

Finally, Writer’s Block, In Search of Truth, and this untitled post were my recent attempts to express myself visually when I didn’t have the words to write. For now I feel it’s best to let them speak for themselves.

Aromatherapy Treatment of Anxiety and Depression: More Research Needed!

I did some research in peer-reviewed scientific journals about the efficacy (effectiveness) of aromatherapy as a treatment for anxiety and depression. Most of the articles I read seem to support it as a complementary treatment – that is, to be used along with traditional treatments such as psychotherapy and medication. There is a need for research that 1) separates the effects of aromatherapy from that of massage and 2) examines the relative efficacy of specific essential oils. Lavender is an essential oil that might help with anxiety, depression, and sleep disorder.

Here are my notes on three review articles:

A review of 16 studies from 1990 to 2010 found that aromatherapy can safely be used as a complementary therapy to reduce anxiety (Lee, et al, 2011). More research is needed to understand how best to implement it (e.g. massage or inhalation) and why it works biologically.

A review of 6 studies from 2000 to 2008 found that aromatherapy-enhanced massage can safely be used to improve mood in people with depressive symptoms (Yim, et al, 2009). A substance found in essential oils, citral, “produces relaxation and antidepressant effects” (192). It is unclear whether particular essential oils are more effective than others; additional research is needed.

Perry & Perry (2006) examine use of aromatherapy in a variety of disorders, including sleep disorder, anxiety, and depression.

Sleep Disorder – “In one study, a blend of basil, juniper, lavender, and sweet marjoram was applied by hand massage; satisfactory sleep increased from 73% to 97% of patient nights […]” (264). Lavender is the essential oil most discussed in the treatment of sleep disorders.

Anxiety – There is limited support for use of aromatherapy to treat anxiety, but of the essential oils, lavender seems most promising.

Depression – There is some support for the use of chamomile, citrus, and lavender. Controlled trials are needed to confirm efficacy.

For more information about aromatherapy, including safety and quality information, visit the National Association for Holistic Aromatherapy.

References

Lee, Y., Wu, Y., Tsang, H.W.H., Leung, A.Y.., & Cheung, W.M. (2011). A systematic review on the anxiolytic effects of aromatherapy in people with anxiety symptoms. The Journal of Alternative and Complementary Medicine, 17 (2), 101-108.

Perry, N. & Perry, E. (2006). Aromatherapy in the management of psychiatric disorders: Clinical and neuropharmacological perspectives. CNS Drugs, 20 (4), 257-280.

Yim, V.W.C., Ng, A.K.Y., Tsang, H.W.H., & Leung, A.Y. (2009). A review on the effects of aromatherapy for patients with depressive symptoms. The Journal of Alternative and Complementary Medicine, 15 (2), 187-195.