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  • 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.

  • Bipolar, Natural Disasters and Emotional Tsunamis

    Tuesday May 15th was just an ordinary day. Until it wasn’t. The kids went to school and then to the town Parks and Recreation program for after care. The husband and I went to our respective jobs. My husband’s work is outside and weather dependent, so he was watching for rain all day, planning to leave work about 30 minutes prior to the predicted heavy rains were to start. Me, I have standard hours, but on that particular Tuesday I do nursing home rounds and start at 7 am, so I tend to leave when the work is done, between 4 or 4:30 in the afternoon. I got home at 4:45 pm when my cell phone buzzed with an alert: TORNADO WARNING! TAKE SHELTER NOW! My mind filled with thoughts. 

    The kids weren’t here.

    How close was my husband.

    This isn’t tornado sky.  (If you lived through one, you know what I’m talking about).

    I want the kids.

    I called my husband. He was turning onto our road. We live approximately five minutes from the school. I told him about the warning and asked him to go get the kids, that they should be with us. He said okay. I went inside and watched the sky from the picture window in the kitchen. And watched. And watched. Then it shifted and I saw it. The sky turned this orange-blue-grey that’s indescribable. It was then that I knew, and with that the kitchen turned dark as night and I ran for the basement. The rains came with winds, tree branches and leaves smacking and beating every window as if asking to be let in themselves for shelter. Loud, fast and furious. I could hear and see trees falling in the backyard and hope nothing would hit the house. Alone, and by myself, I had a moment I thought “so this is how it ends.” My husband called to say he couldn’t make it to the school due to falling trees and was only as far as the house in front of us, taking shelter there, fearful to drive down our long driveway due to the amount of trees on our property.

    When the storm passed, my husband burst into the house to find me. I had just come upstair to assess what happened. Twigs and leaves were coating every window of the house, shining green. We went up to his car in our neighbor’s driveway together with one goal in mind: get the kids as soon as possible. Outside we quickly assessed damage, numerous downed trees, power lines ripped off our home, ripped off the utility pole halfway down our driveway; however still being in shock not really having a true idea of all the damage done. We got into the car and attempted to make our way to the town hall to pick up the kids. We were blocked at every possible route tried. Downed tree. Downed lines. Downed utility pole. Utility pole snapped in half, dangling. Downed trees being held up by the utility lines. After over two solid hours of this, bringing the time to about 7:45 pm, friends contacted us and had an extraction plan to get the kids. They could walk on a path from their property through several yards to the school and get the kids (School and town hall are side-by-side), walking them back to their home with a chance to eat and dry clothes if needed. We agreed. Better for them to be out of the aftercare program and with friends at that point since we had no idea how long we would be. [Side note: Our school principal and Park & Rec staff stayed that night until every single last child was picked up, which to my understanding, was well after 10 pm. I do not know the exact time, nor does it matter. What matters is the dedication they showed to our town’s children in a time of crisis.]

    We continued driving, continued being blocked at every possible option to get to our friend’s home. Stuck in traffic, trees, lines, downed poles. Miraculously this town of diverse opinions came together. People would get out of vehicles, assess the situation and decide how to best proceed. Text message each other what roads were blocked, what roads were passable, what roads had one lane open. We finally made it to our children after approximately 3.5 hours of driving. One of them simply hugged us and cried for a solid ten minutes. I cannot imagine how they must have felt in that storm despite being the the safest spot in the entire town. What good is that safe spot if your parents are not there to protect you?

    Once the kids were collected we had to get home. That meant walking back up the road we parked the car on, past giant trees to the car. We then had to navigate our way back home which took time, another 1.5 hours to figure out what routes would get us back to the house safely. When we reached home, we parked a quarter of the way down the driveway to stay away from the felled lines.Using iPhone flashlights, we navigated our way down the driveway and lawn to stay away from the lines. I stayed on the driveway, stepping over the lines, as I was in high heels with no toes and my husband and the kids were in the grass farther away. I could see the lines clearly and could easily avoid them. My husband is yelling to get on the grass, that I was going to get killed and not listening to me that I could easily see where I was stepping and in no danger. Was I stupid for wanting to stay dry for a moment? Was I stupid for wanting to salvage shoes? Was it my bipolar disorder telling me I could easily handle the risk? I have no idea. I’m still here to write this blog that much I know.

    We went inside, lit candles, and went to bed. My husband blew out all the candles once the kids and I were tucked in as to not risk falling asleep with them on. The kids were still stressed and refused to sleep in their rooms that night (and every night since without power), bunking with me. I spoke to my office manager, explaining my traumatized children, and the war zone of a town I was in and she graciously told me to not worry about the following day’s schedule and to take care of my family and home.

    The next morning we assessed our property, seeing lines ripped off the house, calling electricians and having the weatherhead reattached and getting on the list for EverSource (our local power company) to come reattach the lines to our home. Spend the day stacking and collecting downed branches and cutting wood until the rain began again making the task impossible. Breakfast was Starbucks, lunch was McDonald’s and dinner was Katz’s deli with friends in the same situation. In the rainy afternoon, we walked around the roads near our homes marveling at how destructive mother nature can be.

    Our front neighbors opened their home to us for showering as they have a generator, thus we’ve been able to stay hygienic. Texts have been pouring in from friends in neighboring towns offering their homes to us for whatever we need. This storm has shown us the best of people, not the worst.

    I have done well for the most part and tried to keep it all together. However I feel myself starting to crack. It’s day 3 (considering storm day as day 0) of no power. With all the line damage near my home I don’t know when it’s coming back. I know when EverSource says, but I know what my eyes tell me. There’s a major incongruency there. I need to replace the contents of my entire refrigerator. The thought of it is daunting and stressful and anxiety provoking. I haven’t been sleeping despite my medications. I’m losing compassion for others yet keeping my feelings to myself because I’m scared to verbalize them and make them real. I try to think this isn’t Texas or Puerto Rico or Katrina. However my brain isn’t allowing me to separate them. Is that my bipolar talking to me? I don’t know. I’m cracking and feeling unsafe and vulnerable. I KNOW that’s my bipolar talking. Because I handled Tuesday well and did what needed to be done. I need a shred of normalcy in my day, but my brain is not granting me it. It’s granting me ruminations and obsessions of what happened. It’s focusing on worst case scenarios, not actual case scenarios. That’s my bipolar talking too. I can recognize it.

    Today, I have to learn to make the healing the begin. As the town heals, I have to learn to heal my brain. The question is how. Introspection when one isn’t ready for it is hard, but like everything else I will get through it. If I have to crash through a tsunami of emotions to do it, so be it. Hope my team is ready.

     

  • 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.