Personal Progress (well, maybe not exactly) on the ECT Front

After a series of uncomfortable phone calls and leaving voicemails for everyone in Seattle capable of administering ECT, bits of useful information started to trickle in. The information was useful because it let me know that my options are extremely limited (many hospitals here that provide ECT have apparently moved away from treating patients with medicaid) but I was able to set up a consultation with one of the leading psychiatrists at Northwest Hospital’s ECT unit.

While I’ve been interested in ECT for a while now, previously my mood swings were not in a position (predominantly depressive or manic, more ultradian cycling and mixed) to lend themselves to the immediate requirement of electroconvulsive therapy. Having my symptoms take a much more noticeable downward turn into depression lately made this seem like the perfect time to look into it again.

Beyond that, though, I wasn’t sure if I would be a good candidate for ECT right now. After all, I have just undergone some pretty significant physical health problems and two surgeries, one being relatively major. Ultimately, the consultation was to learn if I could even undergo the treatment right now in addition to finding out if it might help me.

I tried my best to explain this to the receptionist who tried to schedule me for ECT the following week before my consultation had even began.

The consultation itself was… uneventful. I’d already gone through one of these before at another hospital, but I wasn’t really expecting this psychiatrist to have a significantly less optimistic view on how ECT would probably go for me. While he said he wouldn’t tell me absolutely not to try it, it seemed unlikely the treatment would help my symptoms (based on the point I have reached trying almost every medication available with no improvement). He said that each medication I have tried and been resistant to has made the next subsequent medication more likely to fail. I don’t know if that is true or not, but that is the word on the street.

He also told me that he would suggest I (here’s the baton) seek treatment through DBT (and the handoff) first before trying ECT. Unfortunately this proves to be a program even more difficult to get into than ECT in Seattle as it requires a lengthy wait on a waitlist (I’ve actually already been on the waitlist for two months before last weeks consultation) or about $5000 and a somewhat shorter wait on a waitlist.

I left the facility feeling surprisingly optimistic despite the news. I guess it was just nice to have someone tell me that even if they don’t know if what they have to offer will help me they could suggest something else. Normally people just tell me I’m screwed and do I “have any questions?”

For a while now I’ve kind of felt like “all roads lead to DBT” -at least, given my symptoms and everyday problems with human interaction, working, mood swings, etc. This time I am hoping that seeking out a case manager might be a better option than trying to do all the footwork myself. People don’t respond well to my… aggressive tone on the phone, and I don’t respond well to dickheads on the phone either.

At any rate, I will be shifting focus to moving toward DBT. The hospital said they would keep my file open and get all the necessary paperwork ready in case I changed my mind about doing ECT in the next month or two if I can’t get in to DBT.

“Mixed” Messages – A Firefly in a Swarm of Bees

My bipolar symptoms the last week or so have largely been mixed. Mixed episodes have often been the ones landing critical blows on my relationship, and having one over the first weekend in three that I’ve been able to spend with my boyfriend was… well, I think the word frustrating works on both ends.

While I’ve had mixed episodes that blended pieces of mania and depression into a clear goal (annihilation of myself and everyone around me), more often my mixed episodes are an odd, muddled mixture of many distinct (and sometimes opposite) feelings occurring at the same time. As it was over the weekend, I was able to feel excitement, anger, profound sadness, desire, disappointment, and completely calm (as a very rough example) all at once.

Internally it feels like walking into a party and having a conversation with several guests at once, I am reacting to each simultaneously.

You can imagine how much of a problem this poses when trying to have a conversation with someone externally on top of that. Even just having a conversations about sandwiches, this touches the “completely calm” internal feeling I am having (so I feel like I am calm whilst having the conversation) but all of my other reactions (excitement, anger, profound sadness, desire, and disappointment) are showing through randomly through my facial expressions, my body language, and the inflection of my voice.

All of the intense emotions I am feeling in a mixed episode are spinning on a roulette wheel, presenting themselves continuously without any rhyme or reason. Naturally, this confuses the crap out of people.

Imagine I told you, “oh yes, a sandwich for lunch sounds great,” and even though that is what I meant verbatim, I am crossing my arms, stomping on the floor, or throwing my hands in the air when I said it. Or maybe I am crying uncontrollably but singing and dancing.

Or maybe I can’t decide, because I both love and hate sandwiches at that very moment?

Corey (my boyfriend) has known for a long time that I have a really hard time with making decisions when I am having episodes, but it wasn’t until I explained this scenario of mixed messages to him this weekend that he began to realize that my indecision doesn’t come from disinterest (at least not during a mixed episode) but from way too many interests vying for the decision to be made on their behalf.

Sometimes making a decision while being bombarded by all of these emotions simultaneously is like trying to catch a firefly while being stung by a swarm of bees. It is even more perilous knowing that reaching out and grabbing the wrong insect might mean exposing a volatile emotion or putting myself or others in a situation where conflict arises, damaging myself or my relationships.

“That must be really confusing,” Corey replied. “Especially not being able to always distinguish what you want.”

Sometimes “what I want” is the option that is the least harmful to myself and those around me, but honestly it can be hard to tell which insect buzzing around me is going to be friendly or harmful. Other times I try to draw from cues from people around me. Being able to ask someone else what to have for lunch helps me forgo getting stung by that swarm of bees as all of them are vying for my attention.

Ultimately, in a mixed episode it isn’t uncommon for me to want everything and nothing. To love everyone and despise them. To want to laugh and cry and scream all at the same time. It feels like being pulled in every direction at once, but also like implosion is desperately imminent. Sometimes it takes all of my effort just to hold it in, and other times… I can’t.

It has been very confusing trying to understand all of this (and I have experienced it firsthand for many years now), but tying to convey it to someone who doesn’t experience it can be even more confusing. I do think, though, that taking the time to try to explain my motivations to Corey regarding my mixed episodes helped both of us understand better… and in the long run I am hoping better understanding will set us both toward better coping.

Reveal or Conceal; Suicidal in Therapy

First I must be clear that I am not recommending people avoid being open with their therapists, especially about being suicidal. I simply have found myself in an odd situation that I want to write about because I think I am not alone in facing this conundrum.

When visiting my new psychiatrist last week I told her that her inability to help me with drugs (something I somewhat expected due to the treatment-resistant nature of my current symptoms) was really only secondary as to why I wanted to see her. I also desperately needed someone, one person in my life I felt confident I could talk openly about my symptoms with.

“Don’t you have a therapist?” she asked.

I replied rather hesitantly that I did, but then made an effort to describe the issues that arise from being so open with my therapist (or GP or any other doctor, really).

The first problem generally arises from the conversation itself.

It is not uncommon for me to have symptoms that involve thoughts of violence or suicidality, and when expressing these symptoms to people they have generally produced a sort of… physical and emotional recoil. The result is something similar to taking a bandage off a wound and showing it to someone who can’t stand to look at it, and they say, “oh yes, no, that looks just fine…” but their body language denies these words completely.

As one might imagine, being able to express that these thoughts and feelings even exist within oneself takes an incredible amount of courage and vulnerability, and a reaction like this tends to make the pain from that exposed wound pulsate even more deeply.

It took me many years to begin to believe that I am not something horrible, a creature, or a villain, or unworthy of help or kindness because of these symptoms I experience. When I see the pain and fear in peoples faces when I even just mention them (when I have been living with them for ages on my own), sharing begins to feel less helpful and more like salt in the wound.

Keep in mind, I have never had a friend, relative, doctor, or therapist who could avoid presenting this kind of reaction. The only people who I have ever been able to talk openly about my symptoms were psychiatrists because the ones I have met have had the best totally blank poker-faces I have ever encountered.

Realistically, I am capable of blowing right past this issue if I genuinely need help managing these symptoms or if I require immediate medical attention. At that point, let people grimace all they want, I am usually in too much emotional turmoil to care.

The problem I have with discussing suicidality or other symptoms with my therapist(s) come most often from discussing symptoms that are present but within my ability to withstand. Which leads me to the second problem…

In Therapy, every second of suicidality is an emergency.

Today I told my therapist about the last two weeks, and it didn’t occur to me to edit anything out or omit certain details. Normally I like to be open and honest all the time, so what benefit could I possibly get by editing myself (in therapy, the one place I want to be the most open)?

The mention of last week’s suicidal thoughts put my therapist immediately into red alert.

I am happy that therapists have been taught to take every mention suicide seriously, however this method has also left a big black hole in the area pertaining to issues we can talk about involving my symptoms.

My therapist was so revved up all she wanted to talk about for the rest of the hour was suicide and while I tried my best to try to explain to her that suicide isn’t a “one hit wonder” for me (only popping up in times of emergency), the notion that anyone could live with suicidal thoughts for long periods of time and be able to simply sit with them, to prolong one’s existence by constant negotiation with these thoughts… or that there might be varying degrees of suicidality, well, it was all lost on her.

I’ve met so many people who, like me, live with suicidal thoughts that linger for days, weeks, months, maybe even years at a time. If I were to immediately be hospitalized for every situation involving suicidal thoughts I’ve had, I would probably be spending at least 1/4-1/3 of my time hospitalized or have an extraordinary number of individual hospitalizations.

Over the years I have become very familiar with my suicidal thoughts. If they are out of control I absolutely have cause for immediate concern, but that might occur in the span of a few hours, or it might take months of constant nagging to reach that point. I find these thoughts, these feelings and urges to be as fluid as my other symptoms, and coming up against my therapist (and many doctors or healthcare professionals I’ve worked with) who believes they are as rigid as a diagnosis must not have ever experienced them for themselves.

Overall, I wouldn’t want the whole system to change. I think it is important that when people begin talking about suicide there can be immediate action taken to help the situation. I guess I just wish there was more room for suicide (or other difficult symptoms) in conversation, more room for a more broad understanding of how these symptoms operate and how absolutely strong the people are who live with them every day without being able to tell anyone (for fear of recoil or blind panic or unnecessary hospitalization).

It is unfortunate to enter into an arrangement (like therapy) where I expect to be able to talk about the things I might not feel comfortable talking to other people about and find myself having to edit what I say or hide the very aspects of myself that have led me to being there in the first place.

 

When There’s No Room at the Inn… Chill in the Barn?

Sometimes I imagine the Virgin Mary showing up at the inn, hours before giving birth to Jesus, and the inn keeper simply telling her, “err, well, sorry but we just aren’t a provider in your insurance’s network. Off you go!”

I basically just had the same conversation with one of the only TMS/ECT treatment facilities in Seattle. The woman on the phone was able to make it quite clear that people like me (on Medicaid) were not accepted at their facility. In fact, she wouldn’t even give me a figure of how much the treatment would cost without insurance. I felt like I had been marked in some way, as soon as she knew my socioeconomic status I was officially cut off from the prospect of hope.

This is an example of a relatively common conversation for me, and normally I wouldn’t complain, except that this woman had the audacity to go on and tell me that none of the other facilities I had listed to her would be interested in me either and I should just give up now. I told her that was excellent advice for someone currently going through a severely suicidal period and found myself missing the days of owning a phone I could bang on the receiver to signal my frustration upon hanging up on her.

While I am still making calls to other less convenient facilities (including the one I visited in this post and another that would require inpatient hospitalization during the full course of ECT treatment (yuck)), things are looking pretty grim on my treatment front.

To get you up to speed, my depressive shift after that manic/psychotic period a few weeks ago has gone from a walk down a hill to a rapid luge course at the Olympics. The speed and ferocity at which I am encountering extremely disturbing depressive symptoms is almost kind of impressive to me. Of course, I’d be more impressed if I wasn’t also watching it crack (not just strain) my personal relationships, my ability to communicate with friends and strangers alike, and all sense of self.

Part of me is hoping that the sudden intensity of this shift will also mean a rapid rise out of the pit once things have cooled off, but I already know that my mood-swing-predictor isn’t very accurate and in the situation where that doesn’t happen… this very well may be the biggest depressive punch I will have seen in a couple years.

I have unveiled all arsenal; special happy-feeling foods (donuts, cheese), sleeping when I’d rather not be conscious during the day, cuddling with my dog probably more than is healthy, The Muppets… but the depressive symptoms are progressing so quickly that they are almost near the point where none of my usual helpful coping skills are working.

Needless to say, a very bad time to be going separate ways from my psychiatrist of 5 years and my appointment with my new psychiatrist, although not condescending or bossy, did not go as well as I had hoped. She made it clear she didn’t really want to touch me with a ten foot pole and said that if she can help keep my symptoms from getting worse it was the best I could hope for.

If there was any time that seemed like revisiting the idea of ECT was a good one, this seemed like it was it. Unfortunately, now that I finally feel like I am at a point in my life where I welcome the idea of ECT (my mood swings being in the proper spot to warrant it), I have researched it thoroughly (including doing so while I was more rational and stable-ish) and the verdict in the psychiatry world is that I have pretty much exhausted all typical medication options… I’m having a hard time getting in.

I know that I can ride this the way that I always do. Hold on. Let my sense of self be stripped away completely. Check myself into the ER when things get too sketchy. Get agitated in the hospital enough for me to want to leave. Come home and continue to ride it out. Eventually it will get better. Eventually patch things up with my friends and family who haven’t heard from me in months. Hopefully the people around me can withstand it.

At any rate, if there’s no room for me I’ll just stay in the barn. Maybe if I close my eyes and breathe deeply the sweet smell of the hay will make me forget why I’m there.

Tug-of-War Psychiatry; Fighting for Better Policies

This week is one of those rare weeks where I find myself in limbo, last week was my last appointment with my psychiatrist and next week is my first appointment with a new (potential) psychiatrist.

The last five years I have grown very close to my recent psychiatrist, and I could tell both over email and when we met that he was deeply apologetic that we wouldn’t be able to work together anymore.

After he told me why he was leaving the hospital he was currently working at though, I abandoned all regret and any frustration I may have been harboring. He was making the decision to leave because a group of psychiatrists (the majority) quit after the hospital was implementing new policies to try to make their office visits with patients shorter (mind you, they were already 15 minutes a month) and forcing psychiatrists to pass some patients off to primary care doctors to make room for new clients (among other things).

The first thing I did was blurt out, “um, no I think you’re doing the right thing!” and he looked at me perplexed. Even though his departure from this hospital means we can’t work together anymore, I was thrilled to hear the reason he was leaving.

Obviously I am not thrilled that the hospital is trying to implement policies that treat patients in the mental health arena as little more than cattle that need to be herded in and out as quickly as possible, but I AM thrilled that the mental health professionals acted in such a way as to denounce these efforts and protect the right of their clients to receive proper treatment.

“Most of my clients have responded the same way you just did,” he said to me. Unfortunately, this is just a situation where our doctors leaving us means they are protecting our rights, they are standing up for us (in places we can’t stand up for ourselves) and I am happy to think that if I have to work to find a new psychiatrist (trust me, not an easy task) it is because there are other good, ethical people fighting for me and my rights to be treated fairly.

From what I’ve heard, the hospital has began to backpedal in regard to the new policies they were attempting to implement and while some psychiatrists may be returning to work there, mine isn’t. I don’t blame him, think being put in an environment where major decisions about patient care are being decided by board members (and not their doctors) is ridiculous.

In the last five years I have been down this road twice, finding myself without a psychiatrist (and not of my own accord). The first time was when I was put on the state disability program and was no longer allowed to see my regular doctors. After six months they still had not paired me up with a psychiatrist so I dropped the program. Being able to see my competent doctor through a charity service was a much better investment for me at the time than $200 a month and being able to afford the medications I couldn’t get prescribed without the doctor!

The second time was during the healthcare reform, the psychiatric department at the hospital did not want to accept my medicaid insurance but I managed to pick the one subgroup my psychiatrist was able to accept. After several months I was able to start seeing him again.

To say I am not nervous about finding a new doctor and explaining all the odd quirks about my mental health, about my resistances and intolerances to so many medications, and potentially finding someone who is capable of listening as much as they speak would be… well, a lie. However, I have three things on my side that I didn’t have the last few times I went looking for a psychiatrist.

1. I have insurance. Say what you will about Obama, about politics, I don’t care. Ten, even five years ago in Seattle doctors were lined up to turn me away without having hundreds of dollars to make a deposit before a psych appointment or insurance to cover the appointment. Though I am lumped in with a group of people, many who desperately need psychiatric care (with very few psychiatrists to treat them) I cannot be turned away completely. For that, I am grateful.

2. I know who I am. I know so much more about my symptoms and how they effect me than I did five years ago, and also how my body reacts to medications (generally poorly). Knowing these things makes communicating them much simpler, to say the least.

3. I can tell the difference between a good doctor and a bad doctor. In my life, a pychiatrist is the one person I want to be able to trust explicitly. Luckily, I have also formed bonds with many of the good doctors in the city, each of whom has passed on the names of good doctor colleagues to me in case I might need them. I am not willing to see a doctor who is going to be detrimental to my mental health by being manipulative or uncommunicative. Period.

Ultimately I know all of this is just another situation of fallout coming from the healthcare war that happens every day. As much as I don’t like finding myself in a stressful situation, the fact that it has come around because my doctor is trying to be the best advocate for me that he can be is uplifting.

Thank you, Seattle psychiatrists who have been willing to make big life changes to advocate for better mental health policies. I know I am not alone when I say it is appreciated.

The Difficult Relationship of the Empath

I read an article today I thought I would share called The Toxic Attraction Between an Empath and a Narcissist. While I find the article to be a little rough (and I certainly don’t agree with all of the generalizations) it did make me look at the relationships I have had with people a little differently… and therefore was worth the read.

Every bipolar support group I have gone to that has brought up personality categories or alternative views on bipolar symptoms as a “mental illness” has typically led to one word: empath.

An empath is someone who can easily find themselves feeling the emotions of others, and generally has little trouble imagining themselves in someone else’s shoes.

Needless to say, when I sat in a room of people with a bipolar diagnosis and found that every single one scored the same result (empath) I wasn’t surprised. I have known for a long time that the emotional state of those around me have a huge effect on my own emotions and that I have always had a genuine desire to help others (being able to feel and see situations from their perspective), but it took me many years to learn that there were people who were interested in manipulating these traits and that I needed to protect myself by being selective of the relationships I have with others.

One of the best things I have done for myself is to keep the relationships I have with open, genuine people and discard the rest.

At any rate, an interesting read… and if you’ve found yourself drawn to people who tend to hurt you (romantically or otherwise) check it out!

Keaton Farris; Mistreatment Bringing a Town Together

*Trigger warning; contains some detail about the mistreatment and death of a man with mental illness*

It seems like every day I hear of a new situation where someone with mental illness has been taken advantage of, abused, or killed with little repercussion. It isn’t every day, however, that I hear about this happening in the small town of Coupeville I grew up in on Whidbey Island in Washington State.

That isn’t to say it doesn’t happen there. I definitely received some spotty (at best) mental healthcare when I lived there 15 years ago, but reports from my family, friends, the community, and the local news have detailed a story much more disturbing than I could have imagined happening in my tiny, sleepy town on my own.

Keaton Ferris, a 25 year old local man who was diagnosed with bipolar disorder was in the Island County jail after not showing up for a hearing. Two weeks later, he was found dead in his cell, with the autopsy report showing he had been denied enough food and water to survive; he died of dehydration.

His parents had been asking to visit him but staff denied all of their attempts to see their son, and they were never told that he was physically unwell.

Allegedly Keaton was denied his medication in jail and quickly became psychotic, at which point the staff was unwilling to treat him properly because they were afraid of his violent behavior.

(Keep in mind, there is a hospital three blocks from the jail, and though there are hospitals in Washington state designed to house and treat people in the criminal justice system with extreme mental illness, they are often too full to take on new patients, leaving them at local hospitals or jails that are completely unequipped to manage in a professional way.)

While the staff neglected to properly feed and hydrate Keaton, they also did not check on him regularly (as policy dictates). By the time he was found deceased, the coroner has reported that he had been dead several hours without notice.

I guess this situation is hitting pretty close to home for me because I spent the first 18 years of my life in that town. Well, that and I know what being on the receiving end of discrimination because of mental illness feels like, even to the point of having staff withhold my medications and becoming very ill. I feel lucky that I have made it to this point, but as a young woman with mental illness, the writing is on the wall.

If this could happen to Keaton Ferris it could happen to me, and that is a truly terrifying notion.

My goal is not to instill fear in anyone, but just to tell stories of my experiences and the experiences of those around me who can’t speak for themselves. Equal rights, proper treatment, and the acknowledgement of our medical needs in times of mental crisis seem like the basic human rights anyone deserves, right?

So where are they?

There was recently a rally in front of the jail where community members gathered to protest the treatment Keaton received, and while I wouldn’t ever suggest that one young man’s torture and death is a positive thing, I am certain that this situation will touch the lives of every person in that town, and I expect people will begin to think differently about mental illness… begin to act differently about it… and that is how the change begins.

You probably aren’t part of this small community, but that doesn’t mean this story wont touch you, or infuriate you, or inspire you to change even one or two small things in your life that will make a difference when we put them all together.

I would encourage anyone who is interested in learning more or helping support our community’s cause of demanding equal rights and treatment for those with mental illness in the criminal justice system can find all news articles, videos, and up to date information at Keatonh2o.com