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stigma
  • Summer Meltdowns, Loss of Control and Missing the Hospital

    Today was one of those days. It’s been coming for a while. The type of day where I recognize my mental health is in a precarious state due to many circumstances I have zero control over and I’m all at once slowly and rapidly losing my shit to the point I miss the hospital. I want the hospital. I meet zero criteria for the hospital, but the hospital is controlled, with rhythms and routines and predictability. My life presently is not. My brain and my body are seeking it in any way possible.

    I’m not sure when I began to recognize the tides were turning. Was it when my two “best” friends turned on me inexplicably and iced me out without word? Perhaps. That wound is still bleeding from lack of understanding and closure. There are three sides to the truth. All I know is my truth is I was always kind, always there when asked, willing to lend a hand when needed, there for every child birthday party or major event invited. I am not perfect, so sometimes I was needy with my mental illness and needing someone to listen at perhaps inconvenient times. Or just needy. Maybe that’s what did it. I’ll never know. I do know that my children’s birthday party is not prioritized the way I would and one person was supposed to have a major role in the surprise twist to my children’s birthday party. But not anymore, I think they actually forgot.  BOTTOM LINE IS: take all that away, my heart hurts, I still lack closure and a major portion of my mental health support system is gone. Poof. Just like that.

    I did learn I had another support system around me, subtler, less in your face but equally precious. One that I’m grateful this ‘ice out” has given me the opportunity to grow and blossom, though not healing the wound any less. 

    Perhaps the tides were turning when we grew more and more suspicious with the behavior of one of our children. Despite extensive evaluations, our guts kept telling us it was something more than what every doctor had told us. We kept watching and tracking and adding up symptoms. No sleep. Limited food intake. Irritable aggression. Going on for over a week. My faulty genetics being passed down the line and parental guilt kicking in as I never wanted to pass this wretched disease onto one the boys. It has been and always will be my worst nightmare and my worst day as a mother: diagnosis day for my son. 

    I already feel a bit like a parental pariah with his other diagnoses, and now to add this to the pile. I can’t publicly advocate for him, loud and proud the way I do for myself. He has to understand his disorder first. Then, when he’s older, it will be his story to tell. In the meantime I need to figure out to fill up my fuel tanks for puberty for this will be a loathsome combination.

    Perhaps the tides began to turn when I did publicly advocate for my children. One in particular was subject to racial slurs two years in a row by classmates and as a family we took it public to bring about community awareness and change. Being a maven and fomenting change is exhausting and uncomfortable at times while being exhilarating at it’s best. I am confident not everyone is on board with my loud message of preaching diversity be it skin tone, mental health, or being neurotypical/atypical.

    Then we have my grade in my current class for my doctoral program. I am used to being a very high achiever. I graduated UVA with masters summa cum laude. To get punched around in a doctoral level class and be one point below a passing grade is humbling. It’s not reflective of the hours of work I put in each week and my capabilities as a student. It wears on my psyche week after week after week.

    I needed to ugly cry today. I needed to get it out. I needed to ask my husband to hospitalize me. I needed to hear from him that it wasn’t the right thing to do, that I have better choices (and days) ahead of me whether I have the ability to recognize it or not. Right now, I need stability, routine, calm, and peace. I need the chaos, lack of control, zero predictability and no sense of routine to stop. Most of all, I need to my support system is there when I need it.

  • Don’t Call It A Suicide

    I took a HIIT class at my gym this morning. That’s high intensity interval training for those gym neophytes like myself. It was my first one and I wasn’t sure what to expect other than my body wasn’t going to like me very much later today. You see, I joined a gym in January determined to incorporate more exercise into part of my care for myself. Medications: check. Sleep hygiene: check. Regular visits with my team: check. And now regular exercise: check in progress.

    We started the class with an exercise the trainer referred to as “suicides.” It consists of running back and forth to various points ultimately across the entire room with the goal of being able to do five sets of these. It’s a hard, exquisitely challenging exercise without a doubt. It’s defined as “a high intensity sprinting drill, suicides consist of running to multiple progressively distant lines, within a set, as fast as you can. Speed, endurance and agility are all highlighted when running suicides as they test your ability to push through mental and physical fatigue to meet your goal.”  livehealthy.chron.com/suicide-running-drill-8784.html 

     Challenge met. My mental and physical fatigue was peaked. In between the “suicide” drills we had other exercises to perform as well. Perhaps I’m being overly critical or picky today but I hate that they are called suicides. Call them hell burners, call them your least favorite drill of the day, but don’t call them suicides. We aren’t there as a class running back and forth in the depths of despair plotting how to end our lives. We aren’t there contemplating methods of lethality and how we can avoid people so that our plan to complete actual suicide goes unnoticed.

    I’ve been there, both contemplating suicide and attempting suicide with failed completion. It’s not an exercise. It’s pain, but it’s not an exercise to be found in a gym. If I’ve said it once, I’ll say again and again and again until I’m understood. Language matters. Words matter.

     There was a piece of my brain in class this morning thinking about my attempts and the aftermath.  I got dizzy – I suspect from low blood sugar and couldn’t complete the last twenty minutes of class. I have to question the mind-body connection to a degree; thinking too much about the past and what I had done before, residual effects on my family, the thought of my children being raised without a mother versus now just asking me where I’ve been mornings and hearing my cheerful reply “oh, the gym.”

    In the end what mattered today is that we were there in HIIT cheering each other on, lungs burning, and gulping water as quickly as we can, alive. Gloriously and amazingly alive this morning, enjoying how magical it is – what our bodies are capable of. And it’s not called suicide. 

  • Oh Dear Logan, Apology NOT Accepted

    Turning on the news today one read how a YouTuber named Logan Paul with 15 million subscribers got himself into a bit of a pubic relations disaster overnight and that’s putting it mildly. Logan Paul is a 22-year-old video blogger who posts daily short “shows” to his channel and had managed to garner quite a bit of fame doing so. However overnight a video was posted by him of himself and his team in the Aokigahara forest at the base of Mt Fuji, Japan – most commonly known as the suicide forest. He took the time to bleep out his curse words, but posted the body of a deceased person in full-view. The video got 6.3 million views in the day it was available prior to being taken down. http://nymag.com/selectall/2018/01/logan-paul-suicide-forest-video-youtube.html

    The video since been taken down, reportedly by Logan himself only after he came under fire for having the lack of decency and let’s face it – balls – to be so disrespectful to the family who lost a loved one by suicide. He claimed at one point they stumbled onto the forest, but last I checked, no one “stumbles” into Japan’s infamous suicide forest incidentally. He then claimed he did it for mental health awareness, but my god, I can think of a million and one ways to promote mental health awareness that do not involve a corpse and re-traumatizing a family whose loved one is in the forest or all the other families who lost loved ones to suicide.

    As a suicide survivor, I don’t accept his defensive, tearful apologies. There has to be a point where you, Logan, understand your actions and that you took your fame too far. Stick to your silliness and comedic acts. Hold a fundraiser if you want to raise some awareness. Participate in American Foundation for Suicide Prevention (AFSP)’s Overnight Walk and encourage your followers to do the same if you want to raise some awareness. Do something for the seriously mental ill, the ones who get ignored, who can’t get care, who get funneled into the prison system; raise awareness for them if you really want to get serious about mental illness and mental health. I’d be happy to give you some names and point you in the right direction. Let’s start with Treatment Advocacy Center, huh?

    But Logan, please let’s just be honest with the public and with suicide survivors like me first. You knew what you were doing and you did for views. The American public is not stupid. You underestimate your followers. And my children, who used to watch you for kicks and laughs? I say used to because as of 6:45 this am your content in any format is banned in my home. My nine-year-old is pretty savvy and has an impressive level of awareness regarding mental illness and mental health thanks to having a mother with bipolar disorder, so he knows EXACTLY what you did and thinks you lack morals. My nine-year-old. Sleep on that tonight.

     

     

  • Even The Mighty Fall

    Buckle up kids. It’s been a long while since I have felt well enough to write and I have a lot to say today. You see, I’ve been talking to you for the last few years, educating you and advocating for others from the enviable position of having my bipolar disorder being in a stable state of remission. Remission is a beautiful thing. In some ways it’s almost as seductive as mania, only remission when sustained over years can make you feel as if you will never get sick again. Now those who follow this blog regularly know I deal with bipolar 1 disorder, most often associated with the oft-reckless highs of mania. However 40% of bipolar patients are initially diagnosed with unipolar depression. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2945875)

     

    Depression is a far more common mood episode and apparently I am no exception. In mid-late August I presented to my psychiatrist with my husband for concerns over an increasingly low mood at which point all I can recall is collapsing in his office and sobbing uncontrollably. It’s a blur, to be honest. A decision was made that I needed to be hospitalized for a course of ECT (electroconvulsive therapy) as it was felt there was not time to wait for medication to work. I felt too poorly to argue which said something to both my doctor and my husband given my feelings on repeat hospitalization after the last experience four years ago. We went home to pack a bag and give me the opportunity to say goodbye to my three boys.

     

    The psychiatric ER, which served as the entry point for my admission, was a strange experience. My psychiatrist had to coach me on what to say when I arrived as his desire for my admission alone was not sufficient to meet the criteria that would ensure I would have a bed waiting. My husband was not allowed to visit and sit with me except during certain hours. I was not allowed to “just have” the bag I packed. It had to be inspected and locked away. Anything I had at my bedside required a physician order. The attending psychiatrist who came to determine if I actually would be admitted is on my town’s Board of Education. I recognized the name immediately. Heck, I even voted for the guy. (That should have counted for something, but I was afraid to ask.) I told him everything my psychiatrist told me to say, although a phone call still had to be placed to my psychiatrist to discuss my case and whether or not admission and ECT truly was the best option. Dude. Seriously? I. CANNOT. STOP. MOTHEREFFING. CRYING. I don’t care if I live or die at this point. Just make the pain stop.  They decide I will get admitted but tell me it may take days to get a bed. I push them to start the pre-ECT testing process while I am still in ED so it is done by the time a bed opens up. Luckily I get a bed the next day.

     

    I’ll confess. I do not remember much about my admission. I was severely depressed and significantly anxious. I did not both to interact with any other patients. I refused to leave the unit to attend groups or go to meals. I refused to attend groups on the unit. I spent my time sleeping pretty much around the clock. I did meet with my treatment team each day. I came out of my room for visitors – my husband visited everyday and my dear friend Barbara came once in addition to calling every day. It is the first time I allowed non-family to visit me. I went to ECT. The team adjusted my mood stabilizers and when they stated I could go home after my second ECT treatment, I held them to it, even when they tried to back track expressing a desire to keep me there longer.  The hospital is a tough environment. It’s challenging to find fellow patients to connect with, particularly when your mood is so low that you just don’t care to talk to anyone else or you feel so anxious any behaviors they do cause you to isolate further. In hindsight, I can’t even tell you if I slept so much due to major depression (likely) or to escape (also a very strong possibility).

     

    I was discharged to home to attend ECT three times per week. Monday, Wednesday and Fridays. No driving while this process was occurring as I was receiving anesthesia regularly. One of the known side effects of ECT was the risk of memory loss, typically thought to be transient and slowly return once the series of treatments is complete. There are two types of ECT, right unilateral and bifrontal. (https://www.mayoclinic.org/tests-procedures/electroconvulsive-therapy/basics/definition/prc-20014161) (www.psych.med.umich.edu/ECT/common-side-effects.asp) Fortunately my providers have a strong interest in the cognitive effects of ECT on the patient. I had to undergo baseline cognitive testing and then periodic cognitive testing during and after treatment to measure any rate of memory loss.

     

    ECT took place in the basement of the psychiatric hospital. I would get brought into a six bed holding area. They would place a cardiac monitor on me and start an IV line. Before every session I would get a dose of Zofran to quell any nausea and Labetalol, a beta-blocker, to lower my blood pressure. When it was my turn, the attending psychiatrist of the day (there were three who reliably rotated through) would come wheel my stretcher over to the area in which ECT was being performed.  There another nurse and my anesthesiologist greeted me. Electrodes were placed on my head. I had 17 treatments in total over 6.5 weeks; 14 were right unilateral treatments, 3 were bifrontal in an attempt to mount a more robust mood response. Anesthesia provided Toradol, a powerful anti-inflammatory to stop the aches I typically complained of later, usually in my jaw as well as my anesthetic. Off I went to sleep and woke up in recovery later. After a half-hour of monitoring by the nursing staff, I was delivered back to my husband and able to go home.

     

    Due to the anesthesia, I couldn’t have anything to eat or drink after midnight on treatment days. My husband always stopped at Starbucks and got me a chai latte to sip on when we were driving home. Once home I retreated to the bedroom to take a nap still feeling fatigued from the anesthesia. Or some days I might choose to nap on the couch and pretend to pay attention to the television. I did find I had the attention span of a gnat. The longer my course of ECT ran, the worse it got.

     

    As I explained before, memory loss is a serious side effect of ECT. When I underwent ECT in 2012 I experienced some. It eventually came to the point where I finally had to learn to stop calling my husband a liar, trust that he was telling the truth and just reply “I don’t remember, but that sounds nice.” I went into ECT this time optimistic and hopeful that no memory loss would occur given all the cognitive testing they were doing. Part of me also worried they would not know if I had memory loss as they were administering tests to me that I give my dementia patients all day long every day. I mean I was going to rock those tests with one hand behind my back and my eyes closed. Well, let’s just say now I understand why we tell patients depression can impair cognition. I certainly was not thinking straight at the start of treatment. With regards to memory they do right unilateral first as it’s been shown through both research and experience to have the least impact on memory. However my team moved me to bifrontal, as they felt right unilateral was not making enough of a difference in my mood. It became apparent rather quickly that the bifrontal was impacting my memory in a negative way.

     

    This was rather stressful as I work using my brain all the time. I am a nurse practitioner highly reliant in my knowledge and intellectual capacity. I already deferred graduate school one semester due to the mood episode and now recognized deferring a full year was the most reasonable and rational course to take. As always, I feared never getting my memory back.   I chose to stop the ECT against medical advice due to the rapid nature of memory loss. That was probably of the hardest decisions I have ever made regarding my care. Even now as I write this I have to ask my husband so many questions about that time as it’s “foggy” “hazy” “blurry” and I cannot trust my own brain for accuracy.

     

    What happened next is I was left a shell of myself. I had zero interest in anything or anyone. I became quiet. Afraid. Anxious. Paranoid as Fuck. The minute light started shifting in the sky all curtains in the house had to be pulled and blinds closed. I was convinced people were able to see in or coming to get into the home. This irrational fear of peepers or home invasion existed within my brain.  (We live in a rural wooded area and there are limited neighbors.) I would, and still do, go around checking all the doors ensuring they are locked. My husband couldn’t understand why at 3:30-4:00 pm I would be pulling the curtains and my only answer would be “because.” If a door got opened for any reason, I’d start shrieking to close it and be unable to stop until the door was closed and locked again. I couldn’t have the lights off at night. I had to sleep with the lights on in the bedroom.  Not a nightlight. The actual lights. When we lost power with a recent storm, I insisted flashlights be on in the room all night to quell the anxiety I felt.

     

    The symptoms were brought to the attention of my doctor. Initially I was placed on a first generation antipsychotic to try to decrease the paranoia and improve my functioning in the home. Unfortunately it did not work. I was unable to allow Halloween decorations this year as I found the theme and spookiness of the holiday too distressing. It fed the paranoia. I continued to struggle with sleep as the hours of darkness were simply serving to make my soul distraught. My husband called my doctor and told him we needed a change.

     

    I came off the first generation antipsychotic and went onto a second-generation antipsychotic. My brain seemed to like it better however I needed to have the dosing adjusted a bit to find the magic number. It’s fatiguing and helps me sleep; however at higher doses caused some akathesia (feeling of inner restlessness and compelling need to be constant motion) and other uncomfortable side effects. It finally felt like the paranoia was coming to a dull roar. I still come home and check locks, ensure the curtains are pulled though as of one night ago I slept with the lights off. (Baby steps, people, baby steps.) I have a need to have every day the same if I can manage it. If my husband watches one more episode of Shark Tank in the evening I suspect he might lose it.  I hate to be alone in the dark. My office manager walks me to my car in the evening. It’s been tough on my husband. He tried to go to the grocery store one evening and I cried at the thought of being alone in the house without him here. It worked only by him promising to be gone no more than a half-hour and to call/text me every step of the way.  He recently had a nighttime photo shoot and a friend came to “babysit” me until he returned.

     

    Given that there is still a level of impairment and I have still been checked out of portions of my life with some concerns for mood beyond the paranoia, at the next medication check visit we added more. We added a low dose SSRI cautiously as the goal is to improve my mood, decrease my anxiety and improve my functioning without inducing mania. My psychiatrist also added a benzodiazepine for emergencies.

     

    I think we finally have the right combination, now I just need to wait patiently for me to return bit by bit. It’s not going to happen overnight. It’s been a long three and a half months. My family has really suffered with this particular episode, as I have been physically present in this house but emotionally completely checked out. Nothing hurts more than to hear your child ask “Mommy, are you still sick?” and you genuinely have no answer for them.

     

    I do have to say my friends, my family, this town I live in have been incredible during the worst days. They all proved mental illness can be a casserole illness. From those who came and simply lay next to me in bed when I was too sad to move, from all those who took the time to make and leave a meal for my husband and children, from the little trinkets that showed up in the mail, the bouquets of flowers, the Facebook friends who showed up at my door in real life and lifelong friends who dropped everything to be at my side and family who came to help with needed: we thank you for the kind gestures and stigma-busting attitudes.

  • Children, Resiliency and Mental Illness in the Family Unit

    I was away presenting at a nursing conference last week. I was discussing the provider as a patient in the context of both serious mental illness and the need to bring nursing practice back to the basics. If we, as providers, focused on the core of what we do as nurses, creating a consistent therapeutic milieu in interaction with both patients and colleagues alike, it will make it easier for colleagues to seek assistance when they need it. Essentially allowing the provider, the “hidden patient” if you will, to feel safe enough to be provider one day and patient the next. 

    I used my story as a case study named Carly interwoven throughout the presentation. At the conclusion we discussed her remission and I did choose to share that her story was actually that of my own. While I had hoped the question and answer session would be more of conversation regarding how we can focus on these “hidden patients”, I understand the audience seeking more history and questions regarding the case study presented. 

    The question I struggled with the most was how much support my kids had throughout the process and the impact my disorder had had on them. I answered truthfully in that they have received a tremendous amount of care and support from husband and were protected from my illness. I shared that they are incredibly resilient little guys. 

    The truth is there is a lot in what I also did not say. They are getting older. My husband and I won’t always be able to protect them. I live with so much guilt sometimes over having children to begin with. Which is ridiculous when you think about it, since my symptoms and diagnosis came following my final pregnancy. We were done having children at that point. No one had that kind of foresight and if they did, they failed to share it with us. I have guilt because of social media keyboard cowboys who from time to time have taken to telling me via this blog that people with bipolar disorder shouldn’t be parents. Fortunately they have not been as cruel to me as they have to other bloggers I know.  I have guilt because I am not always the type of mother I envisioned I would be when I first learned I would be having my oldest. I have guilt because I think I live in a perpetual state of role strain regarding the family unit. 

    My children will eventually start to ask questions about why I might be isolating. They might start to ask questions about why I am excessively irritable. They already fail to understand my noise sensitivity, which does affect them. Have you ever tried to explain to elementary school boys that they are too loud? Successfully getting them to lower volume is an Olympic feat.

    My oldest has already started to explore basic principles of neurobiology and mental illness to “better understand you, Mommy” as he puts it. He put together a PowerPoint presentation on this topic, presented to his second grade class in May 2016, which caught the attention of the International Bipolar Foundation. I didn’t discuss that in answering the question of the impact my disorder has had on the children. I didn’t discuss that because it makes me insanely proud and incredibly guilty all at the same time. It leaves one feeling conflicted. Is my child growing up too fast because of me?

    In the end, there is no right and there is no wrong. Parenting is a matter of feeling out what fits for each family whether mental illness is present or not. 

  • What does Size have to do with it?

    I was never the thin girl. I have been thinner or larger at various stages of my life. High School. College. Pregnancy. Post-pregnancy. Working girl. All a stage associated with a various size and a healthy dose of self-hatred to boot. I was the thin girl for approximately 8 months – so thin I was accused of an eating disorder – during my mania and initial recovery. A healthy dose of self-hatred still accompanied me everywhere I went. It turns out the thigh gap and the clothes do not make the girl. 

    What does though? I identify myself as a mother, wife, nurse practitioner, writer, and teacher. Size is not a factor in self-identity. It is everything I see however when I look in the mirror.

    I am presently at my largest size ever. Part of it was medication weight gain and part of it is self-medication with food. Eating increases dopamine in my brain and allows me to feel gooooooooooood. While I’m eating. When I am done, I am left feeling sad and miserable and full of shame. The transient increase in dopamine, a powerful neurotransmitter, creates a vicious cycle with my brain always seeking more. Unfortunately it is usually craving more Cadbury Mini Eggs and not tuna with avocado mayo. 

    I’m bringing this to attention since as of late I have been trying to highlight the risk of cardiovascular disease in those with mental illness. My annual physical is coming up and I have to admit: I am terrified. I had high triglycerides once before. I also reversed it with lifestyle change. I am not so optimistic this time. I am scared to my core my lipids will be high, my blood pressure will be high and that I will not be able to reverse what has begun. 

    I need to finally admit it. When I am happy, I eat. When I am sad, I eat. When I am bored, I eat. When I am tired, I eat. It is equally as destructive as my bipolar disorder at this point in the game. Turning 42 this year, there is not a “tomorrow, I’ll change” anymore. Tomorrow never comes presently. 

    Fit Bit, exercise, increasing activity, giving up dairy, eating paleo, food diary. Nothing is exciting enough to create lasting change or prevent me from getting bored. I stay sad and full of self-loathing. 

    Not looking for advice. Just being honest today. My shit is real.

  • Nevertheless, She Persisted

    From time to time, I struggle with writer’s block. I think to myself that I have nothing to say and that I have nothing to say in which people want to hear. I often view it as normal and part of the process of a writer/blogger. In the advent of a rare snow day resulting in the closure of my office, I anticipated spending the day writing and drinking tea. The reality is I spend the day binge-watching Empire and asking my husband what I should write about. He suggested politics. I laughed.

    Until I didn’t. This week, a quote making the rounds in the news has sat with me as I rolled its words and meaning around my head.

    “She was warned. She was given an explanation. Nevertheless, she persisted.” This was a statement Senate Majority Leader Mitch McConnell said in defense of his cutting off Senator Elizabeth Warren from remarks during a confirmation hearing for the position of Attorney General. Women all over have adopted this as a new rally cry in defiance of a new administration in Washington, which has been less than friendly to women’s rights. I digress however, as this is a blog about life with mental illness.

    “She was warned.”

    I was warned, sort of. I see this as more of the stinging rebuke once passed onto me by a therapist who chose to give up on me as a patient than take the time to assess if my diagnosis of postpartum depression needed to be revisited. I was deemed by the provider to still have the diagnosis, but that I was unruly, untethered, wild, and unable to be properly treated. And so, with the unruliness statement and the subsequent discharge from the practice I had my warning. I had the warning that I was too sick to manage, too sick to be treated and too sick for other providers to consider.

    “She was given an explanation.”

    In time, I was given an explanation. It took a second suicide attempt and hospitalization to get one. It was explained to my husband and I that I was bipolar. The diagnosis of postpartum depression, while once fitting, no longer applied. It was an explanation that I would need to hear over and over and over before I could really hear it. I would be hospitalized two more times before I would begin to understand what this explanation, what being diagnosed with bipolar disorder really means. This explanation still needs to be repeated to me from time to time as a refresher to best grasp the implications for my family and myself. I have an explanation no matter how many times I need to hear the words that I live with bipolar disorder.

    “Nevertheless, she persisted.”

    And how. This diagnosis, this challenge, has not kept me down. I persist due to my family. I persist due to the psychiatrist who thought “what the hell, I’ll take her on.” I persist due to my own bullish tenacity to prove others wrong. I persist to prove my old therapist wrong. I persist to prove any and all naysayers wrong. I can and did achieve a fragile state of remission. I persist to demonstrate to the attending psychiatrist during my last hospitalization that she was right. She told me I needed to get better and use my voice, my knowledge, my medical training for good rather than self-pity.

    Nevertheless, I Persist.

    And so can you.

  • Dear Former Therapist

    Dear Former Therapist, 

    When you told me I needed to leave your practice that day in 2012 because I was too surly, too out of control, I was too beyond your help, did you know how sick I was? When you left my family and myself without a safety net, could you understand the consequences your actions would later have?

    Would you realize how many therapists would turn me down, citing I was too acute to accept into their practice? Would you know once I found one willing to tackle the challenge of healing my mind, it would take over a month for me to actually be seen? Would you know that they too would find me so ill that they would demand I agree to a higher level of care first?

    Did you see the decline coming? Did you recognize what was happening, woven into the surliness you were refusing to work with? I wasn’t sleeping save a few hours with a cocktail of medications. I was drinking to self-medicate feelings away. I was a waif of a human being, frail, scared and unable to cope with sight of my own shadow. Did you understand what diagnostic clues the trail of self-destruction would lead to? Were you able to see through the muddy waters of all my symptoms and recognize I was misdiagnosed with post-partum depression?

    Could you have predicted that I would attempt to take my life on more than one occasion in the months that followed? Why did you not see, with your expertise that my diagnosis was so much more than depression? Why did you not recognize I needed a new treatment plan written for the mania I was experiencing, which we now know is bipolar 1 disorder.

    Do you understand how much anger I have held in the ensuing years since toward you? Do you understand how much pain could have been avoided with a proper diagnosis rather than a reluctance to do the work and see me – really see me – for the lost, sick individual I was?

    Today I write to not only ask you these questions, but also tell you I forgive you. I Forgive You.

    Your mistake, your failure to properly diagnose me has only made me stronger and more determined. Determined to never accept inadequate care again. Determined to always have my voice heard by my providers.

    Determined to ensure patients never feel they are alone in their journey. Determined to create partnerships with patients, for if the patient buys into their treatment, they are more likely to adhere to the plan over the long term. Determined to foster autonomy when feasible and recognize when it is not.

    I will not fit into the box you tried to place me in.

    Sincerely,

    Your Former Patient

  • Saying Goodbye to an Icon and Lessons Learned

    Everyone, and I do mean EVERYONE, has had an opinion or thought on the loss of Carrie Fisher suddenly last week to a heart attack. Myself included. However, before taking my thoughts public I needed time to process the loss, what it meant and what message was getting lost in the coverage.

    Carrie was an OG mental illness advocate. She spoke openly and frankly in a time that was unpopular to do so.  She wrote with right balance of passion, gravitas and humor regarding the subject. She talked about her disease, her addiction struggles and her experiences with ECT. She talked about her family relationships for better or for worse.

    “We have been given a challenging illness and there is no other option than to meet those challenges. Think of it as an opportunity to be heroic – not ‘I survived living in Mosul during an attack’ heroic, but an emotional survival. An opportunity to be a good example to others who might share our disorder. “ (November 2016)

    She was (and still is) everything I yearned to be, as I related to her story on so many levels. For starters, I once fancied myself Princess Leia as most little girls in the late seventies, early eighties did. However it runs much deeper than that. I saw pieces of my story run parallel to hers. The period in which we are unable to accept the illness, the drinking, the ECT. The courage to say, “hey, I’m having a relapse and shit happens”.

    When I found my feet, my voice, and gained confidence in both myself and my abilities, she spoke to me once more. “Stay afraid. But do it anyway. What’s important is the action. You don’t have to wait to be confident. Just do it and eventually the confidence will follow”. (April 2013)

    Her death stings me. It hurts more than the loss of Robin William’s laughter. Carrie was everything I wanted to be and now in death, everything I hope I’m not. She lived her life exactly the way I hope to live the remainder of my days. Her death, while it has called to attention the differences in heart disease between men and woman, has the ability to shed light on a greater issue: the decreased mortality of those with serious mental illness. 

    Mary Lou Sudders, the Massachusetts Secretary of Health recently remarked those with serious mental illness have a decrease in mortality of 25 years compared to their peers. If we expect to live until 85-90 years of age, then Carrie was right on schedule at age 60 according to that statistic. Countless studies published in journals highlight this issue along various themes. What all the data agrees on is cardiovascular risk is the highest and cardiovascular disease is the most common co-morbidity / cause of death.  Journals agree providers miss the mark in treating co-morbid illnesses in the mentally ill whether it is difficult to suss out a real versus somatic complaint, patient misinterpretation of symptoms, or bias against the patient for their psychiatric diagnosis to begin with.

    I am stung by Carrie’s death as it is too soon. It is my reality without vigilant care on my part. It is my reality unless I insist my PCP and my psychiatrist work as a team. It is my reality unless I change very stubborn habits. I have a lot to live for. And I intend to savor every year I have.

    Perhaps the best way to honor Carrie is talk about mental illness and medical co-morbidities.

    “I am mentally ill. I can say that. I am not ashamed of that. I survived that, I’m still surviving it, but bring it on”.   (December 2000).

     

  • Maintaining a Little Hope

    Next week is Thanksgiving and the official beginning of the hectic holiday season will begin. Since diagnosis, I have learned to live with a pit in my stomach and a hairball of anxiety in my throat from November to January as the trend is for me to have a setback during this season. It is simply stress and as much as I try to anticipate what needs to be done, my brain ends up defeated. I have been thinking a bit more about hope in the last few weeks as it pertains to me, to the season, to evolving moods and to 2017.

    Hope is all I have. Hope that medications continue to work. Hope that I can control my moods. Hope that my disorder remains in remission. Hope that I am a loving wife and mother. Hope that I am a patient and kind friend. Hope that I am a better, more effective provider. Hope that my patients keep hope for themselves.

    2016 has not been the best year for so many of us. I started off rough, with a deep depressive episode. Hope for symptom relief kept me moving forward and out of the hospital. Hope keeps me thinking the year will end differently than it began. I have advocated and spoken to so many congressmen and woman regarding the need for mental health reform. The hope of so many of us got HR2646 passed and we maintain hope that the Senate will soon act, continuing to push reform forward. Hope keeps me in action, showing the “world” exactly what I am capable of even if it’s not in the timeline I would prefer. 

    Four short years ago, I started spiraling down. Four short years ago, I could not recognize the symptoms nor understand that I had a problem. I could not understand I had bipolar disorder. I thought I had an ineffective therapist. Three short years ago, I believed my career was stagnant and over due to my diagnosis. I felt the knowledge of my disorder would preclude me from ever achieving anything further in this life and would ruin my family. Two short years ago I started writing. I started writing to change the way the public viewed mental illness, and in particular a nurse with a mental illness. I did it for myself, to hold onto the hope that my life was bigger than my diagnosis and would mean something to my husband, my children and me. One short year ago, I accepted a position that I never dreamed I would have. Hope always wins when you want it to.

    I suspect one has to be shown hope to have hope. I found hope when a psychiatrist believed in me and told me that during one of my hospitalizations. Prior to that moment I had truly believed I would be spending the remainder of my days in and out of the hospital. Recovering and relapsing repeatedly. I just may still. I cannot predict the future. However I have hope my new-ish pattern of stability and symptom remission will continue.

    What do I look forward to in 2017? I look forward to continuing this career I love. I look forward to working on my doctorate, provided acceptance to a program. I look forward to writing more. I look forward to presenting at a conference. I look forward to continued remission. I look forward to maintain hope.

  • Insurance, the Final Frontier

    In America, we love our health insurance. We also love to hate our health insurance. Most people obtain it through their employer and never have to give it much thought beyond griping about a service not covered, an expensive deductible, or a pharmacy co-pay. Costs are rising and we are being asked to shoulder more of the burden with increased deductibles and co-insurances. However, with coverage provided by employers it still often falls to the back of our minds. 

    I first started thinking about insurance when I spent a year seeing a therapist who did not accept insurance. Why? Because he could. He didn’t want the “hassle” of dealing with insurance companies. We spent a year paying out of pocket for my sessions and hoping to get reimbursed for what we spent. We rarely did, as the insurance company made the paperwork so overwhelming, so challenging to understand that as a family in crisis it seemed like one more headache not needed at the time. The majority of the time we would be told by the insurance company that I exceeded my allotted sessions for the year and “too bad. 

    I did not think about insurance again until I found my dream job, which unfortunately does not provide insurance for employees. Why, you ask? Because there are only 10 full-time employees and employers with less than 50 full-time employees (FTE) are not mandated by the government to provide insurance. There is no tax penalty for said employers, but they would be eligible for tax credits if they chose to offer insurance. Now, as an individual, I can get penalized in a tax penalty if I don’t obtain insurance on my own. My family does not qualify for subsidies in the Affordable Care Exchanges and we are then mandated to pay dearly by purchasing a plan at retail value. For our relatively healthy family of five, it costs approximately a mortgage payment a month. Fortunately, or unfortunately, depending upon how you view it, we pay over 8% of our annual household income in premiums and would not be penalized for lack of coverage.

    Why the obsession over insurance? Let’s look at a hypothetical but all too real scenario for Americans who rely on the Affordable Care Act for coverage. For the sake of utilizing what I know I will pick on my family.

    Well, as person with mental illness, I depend on that coverage to keep me in remission. I depend on that coverage for my prescriptions and ability to afford to see my treatment team. I never wanted to be a position where I would have to choose money over mental health. Except now I am. What if we were to fall behind in premium payments by just one month? Insurance companies are now actively dropping coverage for just that, without opportunity to make good on the premium due. One would learn of coverage loss either via letter or when attempted to pay. The insurance companies are now holding firm that there is no recourse in such situations until the new calendar year occurs. One can always appeal, however appeals are based on whether or not medications and care are for what the insurance companies deem as life-threatening. Let me repeat that: what the insurance company deems as a life-threatening condition or medication. Mental illnesses get denied on the basis that the condition is not life-threatening and medications are not life-saving.

    My family and I beg to differ based on the history of mood episodes. We object based on the number of times suicide was attempted while manic. We object based on the simple fact that with consistent medication I have proven the ability to remain stable, employed, out of the hospital and most importantly without active suicidal ideation. My medications are life-saving. They saved my life. They saved my life repeatedly.

    This means in a mood episode, I cannot afford my medications. This means I cannot afford to see my treatment team. We have children to feed, to clothe, and provide opportunities for. Keeping food on the table will always trump paying out of pocket for my psychiatrist. This means in my current mixed state – still running amok – I have to cancel my previously scheduled psychiatrist appointment because I cannot afford it. This means I white-knuckle it until January 1, 2017.

    I don’t parent well white-knuckling. I don’t “wife” well white-knuckling. I throw all my emotional energy into my job, as I always do which leaves nothing left over at the end of a workday for the people who actually matter most to both my heart and my brain.

    Despite this hypothetical scenario described, what still angers me, leaving me simultaneously sad is that I would still be one of the lucky ones in this country in terms of mental health care and access for my illness. I have the ability to speak up, fight, appeal and appeal again to get coverage reinstated. There are an awful lot of people in our country who cannot, whether it is out of fear, stigma, lack of financial resources or the physical ability (such as our homeless).  It is inexcusable in today’s day and age. It is inexcusable 6 years into the Affordable Care Act. It is inexcusable 8 years after the passage of The Mental Health Parity and Addiction Equity Act.

    My mental illness and need for insurance coverage for treatment and medication is no less important than someone with cancer or heart disease. What will happen should I have a hypothetical brain attack of neurotransmitters running wildly in my head and become unstable? I do not want this disease to claim me as a statistic, nor anyone else for that matter.

     

  • Is it me or Isn't it me?

    “It is you. Not everyone has your diagnosis.”

    We go back and forth in the mental health community about language all the time, how it can hurt, how labels matter (or don’t for some). One infallible truth however is that words do hurt and we can’t take them back. I did an exercise with my children on the day prior to school starting to demonstrate this very point, taking a tube of Aim toothpaste, squeezing the entire tube onto a plate. I asked the kids if they thought they could get the toothpaste back in the tube exactly as it been previously. They laughed and told me “no way!” We reviewed that once words are out there, you cannot put them and some people will never be the same. We took the time to talk about being kind, thoughtful citizens of the school community. I do not know three days into the school how long the toothpaste experiment will last, but we are working on it.

    “It is you. Not everyone has your diagnosis." 

    Not everyone has my diagnosis. It’s true. As of 2014, there are an estimated 5.3 million adults in the United States with bipolar disorder. This statistic does not differentiate between bipolar 1 and 2 disorder. (www.treatmentadvocacycenter.org/resources/briefing-papers-and-fact-sheets/159/463)

    I somehow do not believe words like this can be slung so carelessly at someone however in my situation. Those eight words leave someone, including me, with the impression that my disorder and my symptoms are my fault. I’m 41 years old. I know when I am being a jerk for the sake of being a jerk. I also know when I feel utterly helpless and cannot control my swirling tornado of emotion, thought and word due to a mood episode and resurgence of symptoms. Thus begging the question, is it really me?

    There is nothing I dislike more than my diagnosis and the impact it will wreak on my daily life from time to time. There is nothing worse than hearing your child ask you where Mommy went because “this isn’t my Mommy right now” when you are in a manic rage. It stops you in your tracks, kicks you in the stomach and renders one unable to breathe. It hurts because I didn’t ask for this. I did not ask to become ill. My children didn’t ask for an ill parent either. All of us (the kids and myself) asked for love and some understanding of our behaviors. The kids, because they are immature with developing brains and will do obnoxious things at times. Me, because I cannot achieve remission again without love, patience, time and a solid treatment team.

    “It is you. Not everyone has your diagnosis.”

    Not everyone has my diagnosis, and the things I CAN control are simple: putting down the phone and staying away from social media when it’s bothersome to me and liable to set me off. Sitting down every single night with the kids for dinner. Instituting family time every single night regardless of how tired I am. Bedtime snuggles and hugs. I can show my kids how much Mommy is always there, even when my brain is misbehaving, neurotransmitters have run amok and makes it physically impossible.

    I can’t put the toothpaste back in either. All I can do is work as hard as possible every day to make sure I never squeeze it out in the first place.

  • Mania, the Remix

    Raise your hand if you love a good remix. Personally, I am all about the remix. My current favorite is the Mike Posner “I Took a Pill in Ibiza” See B remix taking a lovely acoustic song and transforming it into a jam worthy of the finest kitchen dance party one was ever invited to. There are always exceptions to the remix rule and the original holds, such as the current Calvin Harris /Rihanna collaboration “This is What You Came For.” Strictly the original please for my tastes.

    I Took a Pill in Ibiza, remix, Vevo        

    This Is What You Came For, Vevo

    Raise your again if you are wondering what this has to do with mental illness. I assure you plenty. Now I am in the midst of what feels like the Calvin Harris of all remixes – manic episode with mixed features.

    DSM V criteria of a manic episode with mixed features states: “Full criteria are met for a manic episode or hypomanic episode and at least three of the following symptoms are present during the majority of days of the current or most recent episode of mania or hypomania

    -       Prominent dysphoria or depressed mood as indicated by either subjective report or observation made by others.

    -       Diminished interest or pleasure in all, or almost all, activities (as indicated by either subjective account or observation made by others

    -       Psychomotor retardation nearly every day (observable by others, not just subjective feelings of being slowed down).

    -       Fatigue or loss of energy.

    -       Feelings of worthlessness or excessive or inappropriate guilt (not merely self-reproach or guilt about being sick).

    -       Recurrent thoughts of death (not just fear of dying), recurrent suicidal ideation without a specific plan, or a suicide attempt or specific plan for committing suicide.

    The mixed symptoms are observable by others and represent a change from the person’s usual behavior. The mixed symptoms are not attributable to the physiological effects of a substance (e.g., a drug of abuse, a medication other treatment).

    Let’s review (briefly) a manic episode: a distinct period of abnormality and persistently elevated, expansive or irritable mood and abnormally and persistently goal-directed activity or energy, lasting at least one week and present most of the day, nearly every day (or any duration if hospitalization).

    During the period of mood disturbance and increased energy or activity or activity, three (or more) of the following symptoms (four if the mood is only irritable) are present to a significant degree and represent a noticeable change from usual behavior

    -       Inflatable self-esteem or grandiosity

    -       Decreased need for sleep (e.g., feels rested after only 3 hours of sleep)

    -       More talkative than usual or pressure to keep talking

    -       Flight of ideas or subjective experience that thoughts are racing

    -       Distractibility (i.e., attention too easily drawn to unimportant or irrelevant external stimuli), as reported or observed

    -       Increase in goal-directed activity (either socially, at work or school, or sexually) or psychomotor agitation (i.e., purposeless non-goal-directed activity).

    -       Excessive involvement in activities that have a high potential for painful consequences (e.g.’ engaging in unrestrained buying sprees, sexual indiscretions, or foolish business investments).

    The mood disturbance is sufficiently severe to cause marked impairment in social or occupational functioning or to necessitate hospitalization to prevent harm to self or others, or there are psychotic features.

    The episode is not attributable to the physiological effects of a substance or to another medical condition.”

    (Taken directly from the text of the DSM-V, section on bipolar disorders)

    How is my mixed episode playing out? I’ve met the criteria for mania through well over a week now of increased-goal directed activity, less sleep, more talkative, flight of ideas, distractibility and the buying sprees. The mixed component? Decreased mood, thoughts of worthlessness, crying daily, fatigue and thoughts of death.

    I don’t want to have another episode. I wanted to blame my irritable, hateful state on the state of the world today. That is not going to go over well either. People are going to be haters, but my disorder is life-long with periods of relapse and remission. My pdoc is on vacation and the coverage in his office always throws more benzodiazepines at me to solve the problem. That is not what I need. What I need is to lose the fear of speaking up about my mood and getting help with the team I trust the most is unavailable.

    When I changed specialties for my nurse practitioner practice, I guarded my stability and current remission state more carefully than the gold at Fort Knox. I slept, I deceased alcohol consumption, and I took my medications more faithfully than ever before. On a visceral level, I know that this episode is not my fault. I know this episode happened to just occur in spite of the best care possible.

    Here is what frightens me the most about this mixed episode. One, it caught me off guard and I could not recognize it for what it was for several weeks, as I have never experienced one before. Two, I am scared to speak up without my treatment team in town. I am a medical provider and people rely on me. Unless you stand in my shoes, you cannot possible understand what it is like to keep your brain held together for 8 hours every day, in a state of constant adrenaline because patients will always come first and to cause harm would cause you to go to the depths of hell. Three, do I need a medication change – AGAIN?

    Lastly, I fear I will become a victim of the system. I worry my disorder will claim me versus the other way around. I constantly worry about being just another statistic of this brain disease.

    It’s not quite Vegas for this remix and I don’t have a huge crowd cheering me on unlike our dear Calvin, though.

  • Facebook, Social Media and Mental Illness

    Facebook, or social media use in general, brings out the best and the worst traits in humans. When one throws a mental illness into the mix, it can be both calming at times and incredibly triggering.

    As someone with bipolar I disorder, reasons why I like it:

    I have a good family, none of whom live nearby. It often provides a chance to see what is going on without picking up the dreaded phone. Sure, the phone is in my hand as I scroll through the newsfeed but one, that’s just a detail. Two, I have severe phone anxiety and three, the idea of calling to order pizza sends my heart rate soaring over two hundred. Surely you cannot reasonably expect me to have an actual phone conversation just because we share DNA?

    The same can be said for my friends. It is a useful tool to reconnect people whom you remember. Friendships are renewed, revived. We all grew up. For folks like me who came from a small close-knit community, it is nice to see how people are doing. Most of us even got better looking with age. (What is that saying about women and fine wines? EXACTLY.) Let’s face it, we all produced adorable children who may not always behave adorably, but they sure do say some hilarious things that must be shared. And I love seeing all of it, from all of you. And again, that no phone thing.

    Cat videos. Movie trailers. The New Yorker (I heart Andy Borowitz 4-EVA). Thoughtful debate. Divisive debate. The conversations it provokes privately in homes. The friendships it renews. Dog videos. For the love of pugs.

    And lastly the awe-inspiring community of like-minded advocates I have to both grow with and support me. We are all on different journeys and came together through various paths but share one common goal: better care for the seriously mentally ill.

    Reasons why I don’t like it

    Everyone loves a good funny meme to chuckle over. Why not? We need more laughter in such a serious world. My sense of humor is just as good as the next person. What I do not enjoy is the proliferation of mental illness themed memes meant to provoke laughter and merriment over actual illnesses people suffer with. We are battling our minds on a daily basis. People do not post memes inciting laughs and teasing those who suffer from physical ailments. Could you imagine the outrage if you saw one for childhood cancer? Or cancer in general? Parkinson’s? ALS?

    I do not always want to be the heavy. I do not relish pointing out the insensitivities simply because I made a conscious choice to be open with my diagnosis, protecting the many, many confidences entrusted to me since I went public. Yet I will, for that is a privilege of one of the highest honors people could give me.

    The math is simple. 1 in 4 adults have a diagnosable mental disorder in their lifetime. ONE in FOUR.  So if Ann has 640 Facebook friends that means 160 would carry a diagnosis. If Bob has 200 Facebook friends, 50 would. Look around the room you are in. Can you even tell who may or may not carry a diagnosis? OF COURSE NOT! No one will trust you enough to tell you either to use you as a support system when you are then one making fun of their illness publicly, especially without their permission even if you are not even referring to them.  Yes, humor is needed to get through the dark days. My husband and I are known to make horrible jokes about my bipolar disorder to each other to get through the hard times. It stays private, between us.

    There are a couple of memes I want to call your attention to:

    When I put my patient “hat” on, I just do not see how one willingly goes to the hospital unless they know their situation is so dire they will not turn around without hospitalization. Typically, admission occurs with an individual frightened, in tears and feeling that they will die unless they go. Patients genuinely feel backed into a corner and completely out of options. They feel that all medications have failed them. Some patients are involuntarily admitted for concerns of safety and harm, be it themselves or toward others. 

    In my case, each and every time the only reason I signed paperwork for a voluntary admission was because I was told it was better for me that way. I never wanted to go, not once. Not one of my four admissions. The last admission I had my hospital chart stated that if I tried to leave grounds and go home prior to the time a transfer to a psychiatric bed could occur, the police would be called, I would be barred from leaving and committed involuntarily. So much for the voluntary paperwork I signed.

     

    There is no cool table in the cafeteria. There are tables. Period. People find a seat, eat and leave. Conversation is at a minimum. You might trade muffins. You might barter for cigarettes if you smoke. You might talk meds if you are feeling really feisty and got caffeine in your coffee. At the end of day, you are in a psychiatric facility and what is there to discuss?

    The one I take the most offense to tried to gain traction as a game on Facebook. I found it so triggering, I actually defriended numerous people over this.

     

    I’ll paint a more accurate picture of how this would look for you

    YOUR ROOMMATE: Up all night crying with a sitter at their side because they attempted suicide and wound up in the psychiatric hospital instead. They are frightened to death to be there. You can’t tell if it is their first hospitalization or their fifth. Perhaps they are most frightened that they are still alive. The tears you hear all night are of a soul in deep, deep pain.

    PERSON LICKING WINDOWS: Is in such severe psychosis it makes you uncomfortable. You wonder why no one is doing anything to break the psychotic state or is his or her mind irreparably broken at this point. You begin to cry yourself.

    PERSON HELPING YOU ESCAPE: Isn’t really helping you escape. They are telling you everything that they think you should know because 1. they want you to view them as the Alpha of the unit and 2. all the things they tell you to the doctors on rounds have absolutely nothing to do with you or your case.

    THE DOCTOR: A person who shows up for five minutes a day, asks how many groups you show up to and increases your off unit privileges based on the answer. Also asks you five or six questions to determine discharge readiness and medications. Never answers family phone calls and punts them to the social worker that avoids you.

    PERSON RUNNING AROUND NAKED: This might make for great cinema, however with 4 hospitalizations and counting I have yet to see this. We get to wear our street clothes to avoid feeling completely marginalized. The more accurate picture is The Person Who Wore the Same Outfit for the Most Days In A Row. See also: Psychosis, because the unit washing machine is bugged and contaminates the clothing.

    PERSON YELLING NONSENSE: This could be anyone. This could be from meals consistently being delivered late when it is all anyone has to look forward to. It could be because no one showed up to visit again and you’ve been there for three weeks. It could be because the same three patient monopolize the one phone on the unit for all 30 patients. Perhaps you are sick of having to do the same kitten puzzle every day from the 1980s as an activity. Maybe five days into your stay, the 6th day suddenly your ponytail is deemed a safety hazard after five days of a nonissue. Maybe you just want a nurse to listen and not push medications.

    PERSON YOU WENT CRAZY WITH: What the Sam Hill is that even supposed to mean? Someone went crazy with me on purpose and got admitted with me on purpose? Now I know the inventor of this little game is just an a$$hole, pardon my French.

    Now I believe we can all agree we have been properly educated and shall think the humor and memes through a little more. After all, I have the best weapon: a graphic designer husband and I am not afraid to use him.

    He is a professional photographer to boot and has made some pretty inspirational memes when asked.