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  • Learning to Savor the Small Moments

    I have found as I navigate this bizarre world of both patient and provider that it is the small moments that can make the biggest impact. We often are not even cognizant of the impact until much later, but they make an impact and a difference in our journey and path we forge trying to achieve the wonder that we call remission from symptoms. This week for me has been fragile, full of triggering moments leaving me feeling as if I’m dangling on a cliff’s edge one moment and then left speechless with a small moment of how far I have come the next.

    I encountered a woman this week who is the twin of a nurse I had during the last psychiatric hospitalization, back in June 2013. She was a kind white haired woman who took the time to sit with me during her shift and check in. She talked with me about how we were nearly neighbors, told me things about common threads we wove, and talked to me at length about sometimes how long it can take to find the right cocktail of medication for bipolar disorder. She knew because of a family member. She shared that with me. She shared that when it works and you find the magic combination it’s like Christmas morning.  It did not take as long for me to find the magic combination as it took for her family member. I digress. I was so excited when I saw this woman this week for I was sure it was my former nurse. I wanted nothing more to embrace her and tell her how her words helped me and were an integral part of the reason I am here today, doing what I do. She is one of very few providers from my inpatient stays who made a difference and I wanted her to hear that and see it in the flesh.

    I had one horrible psychiatric hospitalization in February 2013 that left me feeling disoriented and not ready for reentry when I came out. My husband, when he picked me up, handed me a Starbucks venti chai latte extra hot with soymilk along with a brand new iPhone 5 fully loaded with all the apps he thought I would like. Both have been my crutch ever since and typically not far from my hand. The other night, my youngest (by two minutes) informed me I spent too much time with my phone and that it was going to stop. I looked at him and agreed. Last night, I picked up all the boys and took them on a date. No phone. We had a ball. I learned so much about them and we laughed, played games, and talked through our meal. I didn’t pick it up again until I was in bed for the night. They have slowly been learning I am a safe, dependable parent, but now they can learn I am a present parent too. I just have to figure out what we can do tonight – phone free and without my crutch.

    The best part about my job as a psych APRN is when a patient finds their own small moment that is pivotal for them, helped them see the hope in a situation they thought otherwise and they bring it to me. My patients don’t know my story; they don’t understand the passion I pour into my career to see them succeed, as it is irrelevant to achieving remission for them. And they definitely don’t get to see my happy dance after they leave on their small moment days. But it’s there.

    Now I just hope my front office staff never figures out YouTube.

  • 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.

     

  • The Medical Provider Bias of the Psychiatric Patient

    There has been so much going on in the last week in terms of my physical health, it has been overpowering my need to protect my mental health. I fell apart physically, rather abruptly and unexpectedly. Testing has proven inconclusive thus far, which is both encouraging and discouraging. I am encouraged to know there is no serious ailment, however discouraged that my symptoms remain vague and without cause. With my husband consistently at my side, and a dear friend who stood up and staunchly advocated for my needs we were able to come up with a plan to move forward, so I will be fine as always. I'm a tough bird. 

    What I wanted to call your attention to was a guest post I wrote a year ago for another website that I linked below and am republishing: the topic of feeling that our physical concerns are not taken seriously when a provider sees in the EHR that they are dealing with a primary psychiatric diagnosis before they meet you. There is a very real bias that exists and the more we ae aware of it and talk about it, the better our care can and will be. 

    http://www.everythingbutthecat.net/#!Guest-Blog-Medical-Provider-Bias-of-the-Psychiatric-Patient/c1kyp/55a39e840cf21636d2fcd246 (first published July 23, 2015)

    A patient presents to their local emergency department at the prodding of their spouse in the midst of experiencing about 36 hours of mid-sternal chest tightness with an inability take a deep breath. It is not relieved with antacids or aspirin. The patient feels worse when moving around. They are checked in to the emergency department, and EKG is done and they are sent back to the waiting room to wait. And wait. And wait.  After a few hours, a polite inquiry is made as to when the patient might be seen knowing chest pain is usually considered to be a serious malady. They are told the ECG was normal and that they are waiting for a doctor to come speak with them. Frustrated, the patient leaves and a two days later seeks help with the primary care provider (PCP) who diagnoses them with costochondritis, which is an inflammation of the cartilage connecting the sternum to the rib cage and the pain can often mimic that of a heart attack.  It is easily treated with a two-week course of a non-steroid anti-inflammatory medication. The medical record shows the patient was seen for the primary problem of anxiety, secondary problem of chest discomfort. 

    A patient presents to a neurologist who specializes in the treatment of migraines at the behest of their other providers for better management of their migraines. On the day of the appointment, they are experiencing a migraine, having gait difficulty and vomiting in the waiting room, with a prolonged waiting time on the day of the appointment.  The neurologist told the patient that their migraines were made up and being used as a method to get attention. The patient was further told that these migraines were all in their head and not real.  They left without medical care. 

    Outrageous right? In today’s day and age of medicine where patient satisfaction rules that day how dare someone’s chest pain be ignored, then find out they are viewed by providers as anxious despite an actual medical condition they were diagnosed with and how could a neurologist tell a patient vomiting from migraine that this was a made-up attention-seeking headache? What if I told you both of the above patient’s charts carried a diagnosis of bipolar disorder. In the age of electronic medical records, providers are fairly savvy on a patient’s medical condition and past histories before ever seeing or interviewing a patient. Are you still outraged? I hope so. Hold onto it for a moment. 

    I was intrigued by this bias of a seemingly different standard of medical care as it appeared it was being offered to a patient with a pre-existing psychiatric diagnosis versus a patient without one.  For example, the chest pain differential diagnosis (once EKG ruled out changes concerning for heart attack) is still long and warrants work-up. Fortunately for our patient, they were okay. Imagine however if they returned say 24 hours later in extremis. It is still baffling how when at no time they were anxious, they were calm and stated the facts of what was happening to them, their PCP still found a primary episode diagnosis of anxiety necessary, not the costochondritis the patient was prescribed treatment for. The migraine patient was greeted by the neurologist with the words “Oh, I see you’re a bipolar.” While that is not exactly politically correct, it should have raised red flags for the neurologist that this patient has headaches since migraines are a proven co-morbid condition, not suggest that the patient was confabulating a disorder and wasting their time. Did the patient “make-up” the vomit in the waiting room trash can too? 

    I know these two anecdotes do not even begin to scratch the surface of bias psychiatric patients experience while trying to obtain medical care. I did a literature review to attempt to grasp the extent of the problem. Not entirely unsurprisingly I was not able to find much. However I did learn a lot of information.

    In a 2013 study, Maina, Bechon, Rigardetto and Salvi noted that those with bipolar disorder have worse physical health and life expectancy reduced by approximately 30% compared to the general population (Note: that number is higher than I have previously seen). They found patients with bipolar disorder are more likely to have cardiovascular conditions, hypertension, diabetes, hypothyroidism, respiratory illness, liver dysfunction and peptic ulcers. 55% of the patients they examined had a co-morbid condition. The most common co-morbid conditions were either endocrine or cardiovascular.  64% of patients who had an endocrine disorder experienced metabolic syndrome. The biggest risk factors they found for predicting the risk of a co-morbid condition were female gender and duration of untreated illness. It was noted that individuals with bipolar disorder are more likely to demonstrate “risky” behaviors health-wise in terms of diet, poor exercise habits, sub-optimal self care, limited access to health care and perhaps unwillingness to obtain health care during periods of depression. It was also noted that the medications used to treat bipolar disorder are lifetime medications and place the patient at risk for obesity, metabolic syndrome and thus cardiovascular disease and diabetes.  (Maina G, Bechon E, Rigardetto S, Salvi V. General Medical Conditions Are Associated with Delay to Treatment in Patients with Bipolar Disorder. Psychosomatics. 2013:54-437-442.)

    I looked at a 2013 study from Crump, Sundquist K, Winkleby, and Sundquist J, which knowing bipolar disorder is associated with increased mortality sought to examine what effects the disorder has on the individuals physical health over a 7 year period. Their study found that for the individuals identified as having bipolar disorder over 60% were middle-aged, the majority were women, they were more likely to use alcohol or other illicit substances and have lower educational or income levels.  They found that these patients had three times the amount of outpatient visits and two times as many hospital admissions on an annual basis. The diagnoses these patient were more at risk for was influenza or pneumonia, COPD, diabetes, cardiovascular disease – specifically mentioning stroke. When mortality was examined, it was found that women, on average, passed away 9 years earlier than other women and men, on average, passed away 8.5 years earlier than other men. This represents a 2.3 and 2.0 fold increase in mortality. It also calls to attention the notion that those with bipolar disorder are less likely to receive primary medical care, thus in essence preventative medicine for many of these disorders. Modifiable behaviors are also noted, such as, obesity, smoking and substance abuse. (Crump C, Sundquist K, Winkleby M, Sundquist J. Comorbidities and Mortality in Bipolar Disorder: A Swedish National Cohort Study. JAMA Psychiatry. 2013;70(9):931-939.

    The final study I want to call attention to is from 2014 by Gras, Swart, Sloof, van Weeghel et al looking at stigmatizing attitudes healthcare professionals may hold toward psychiatric patients. They acknowledge upfront their study was limited by a bias toward providers likely wanting to provide a socially appropriate answer. They sought to look at the beliefs held by general medical professionals (GPs), general mental health care professionals  (MHCs) and forensic psychiatric professionals (FPs). They hypothesized that the GPs would hold the most stigmatizing beliefs; the MHCs would hold the most accepting and the FPS would be in the middle.  They found that all three groups held a “moderately positive attitude” and that their hypothesis was correct. It was noted that only between 26-38% of the providers across all three groups admitted having personal experience with mental illness. (Gras L, Swart M, Sloof C, van Weeghel J, et al. Differential stigmatizing attitudes of healthcare professionals towards psychiatry and patients with mental health problems: something to worry about? A pilot study. Soc Psychiatry Psychiatr Epidemiol (2015) 50:299-306)

    It is worth noting that bias exists, and that primary care providers have been shown to hold a more stigmatizing attitude than other providers. It could be hypothesized that same said attitude carries over to providers of a non-psychiatric specialty, however given a paucity of data available in my literature review, we don’t know that answer.

    Patients with a psychiatric diagnosis deserve better in our care and need to stand up for ourselves. We deserve the same standard of care for our healthcare needs as anyone else. We ask for and expect parity with our insurance and it is reasonable that the very same parity would extend to our medical care. The data clearly shows the collective we hold a higher risk of cardiovascular disease, endocrine disorders, stroke, and risky modifiable behaviors. There is no reason for any single one of us to hold increased mortality versus the general population if our care providers sit down and pay attention. I did not even get a chance to discuss the increase lifetime risk of suicide that an individual with bipolar disorder carries over the general population. 

    Why don’t we empower our care providers to provide us with the very same standard of care that a non-psychiatric patient would receive? In an increasing era of patient satisfaction and concierge care, speak up and talk to your providers. Encourage them to listen to you. Would a non-psychiatric patient be told their medical ailment is made up? Would a non-psychiatric patient be seen for a physical complaint but end up with the primary visit complaint a diagnosis straight out of the DSM. If the answer is NO, then stand up and speak up.

  • My Shit Is Real

    I am sitting here awake in the early dawn hours; long before my alarm is due to go off because my sleep is off again. Insomnia is creeping back into my life and as you know, the fear of hypomania or mania is real for me.  It is never a good sign when a seasoned individual on the support group scene once remarked, “I remember your mania. That was a bad one.” I remember most of it too. It was.

    I have so many thoughts, so many feelings with the struggle to put things down on paper at times. As if seeing the words in black and white allows them to become more visceral, therefore only making sense that I would procrastinate on writing about these things to avoid the reality of my fears.

    I stopped watching Netflix before bed. I read instead. I could bring back the evening shower, a long instilled habit from shift work, to help me wind down more. Last night I sat outside in the backyard, without the fire pit roaring just talking with my husband, completely relaxed. Certainly that should have helped. My alcohol intake is rare due to my medications. Exercise, though. That would help fatigue me more.

    I do not understand how working parents find the time to fit exercise in. I’m up early, put in a full day at work, try to enjoy the kids before bed and then it seems it is time for me to retire. The body is willing to sleep; yet the mind is resistant. I like the idea of exercise, my Pinterest board is chock full of exercises I am capable of doing in my unconditioned state. Now the mind is willing, yet the body is resistant.

    Do I retire later in the evening? Do I go to bed too early? Is that the issue? I am so afraid if I stay up, then fall asleep on the couch and then move upstairs I will be unable to fall back asleep. How many sleepless nights have I had when something woke me, and my mind could not just stop and relax thereafter? Countless.

    My mind. Not my brain, which contains my bipolar disorder but my mind. Me. My intellect. So many thoughts run through it. Am I better or worse for reading so much lately? Everything makes me think. I finished a book two days ago that has just haunted me. While it was someone else’s story told so beautifully, I was devastated when I finished to learn there was one small piece of the story in which the ending was not what I expected. Which made me think: why do some marriages crumble in the face of or the aftermath of an illness and some not? 

    Why is my husband still here? What makes us so special that we can work through all the crap that bipolar disorder throws at us and come out a better team? Do we bicker? Yes. Do we fight? Sure. Do we disagree on how to handle some issues? All the time. Yet we stay unified and pushed through all the garbage, all the bad and remain loving to each other because at the end of the day if the five of us are still a family then nothing else matters.

    Why does that not happen for everyone? It is hard sometimes to comprehend that I am one of the lucky ones in our mental health system. I was able to come back from a serious mental illness and am able to achieve periods of remission. I have been able to go just over three years without needing the hospital again. To have a family who stands by me every single step of the way. I have insurance and more importantly, a provider who accepts insurance to care for me.

    This is just a fraction of the things that go through my mind on any given moment, hour, day, night. As someone said earlier today – My shit is real. And it is. It is so very real. For all of us.

  • The Hardest Goodbyes

    The beginning of my journey with mental illness was shrouded in secrecy.  It was kept quiet for numerous reasons, all completely valid at the time. We had no idea what was wrong. Was I just a complex case of post-partum depression requiring ECT treatment to jumpstart my neurotransmitters into talking to each other properly again? Was it something more when in the subsequent months new and equally perplexing behaviors crept in? We had young children to shelter from the storm inside their mother’s brain, we had a professional reputation to try to protect and we were trying to integrate within a new community. Therefore, it was only natural we stayed quiet and to ourselves. Our circle was small, tight and with a few friends allowed in meant to bring joy versus serve as confidantes.

    When the knowledge of a mental illness goes public, be it by personal choice, accidental leak or a less than private display of symptoms; it is often said one finds out who will stand by them, remaining true and who is going to walk away. The always honest and eloquent Nicole Lyons once posted this graphic online some time ago, and I saved it, thinking “Yes! And how! And how much better I am for it. “

    Which is the truth. My new circle is small. It consists of family, friends from kindergarten, some from graduate school and a few dear friends here in my tiny rural town. I wouldn’t trade them for the world. They have been there, reached out, texted me, celebrated special days with me. They know with a single look that my brain may not be okay that day. They are incapable of anything but love.

    Does it mean it hurts any less on the days you recognize someone walked away? Someone YOU cared about, YOU invested time in, YOU laughed with, YOU may not have spoken to in some time, but as the saying goes:

    Needless-to-say, I’m realistic enough to know people have walked in the face of my bipolar disorder. Some I metaphorically waved as the door hit them in the ass on the way on out. Some have crept quietly away and their absence is still not noticed.

    This absence stings. It hurts. I cried for the very first time ever over the loss of a person. I don’t even know how long they have been gone. It was the realization today. The realization that they didn’t simply quit social media like I once believed. I was simply just de-friended. (Who DOES that when there is a mute button?). I am de-friended and my husband was kept on as a friend. I am not worthy of “hello” when we see each other. I now understand why texts to get coffee or lunch went unanswered. Or plans got cancelled last minute and why I quit trying after a time. All by the only non-family member to ever visit me in the hospital when I was down. It hurts.

    People change. I get that. I do. We grow, we evolve, and we are busy with children and commitments. My heart doesn’t change. My brain chemistry cannot help the changes it made.  You do not have to be my friend and I do not ever to know the specifics why, but you hurt me.

     

     

  • Let's Talk About Illness over Health This May

    Every year I talk about how much I love mental health awareness month, held during May. I enjoy the time we get to spend discussing accomplishments and achievements made in the mental illness community over the past year. It warms me to have for 31 days, a focus on mental illness. This year is different. There is a change I’ve noticed. It’s subtle, smoldering underneath the shiny signs and banner we metaphorically wave decrying stigma and asking for acceptance. My Facebook feed isn’t as filled as compared to last year. I don’t see lime green washing over society in waves the way October shimmers in pastel pink.

    I could spend hours waxing poetic on theories why. It was a rough year for me. I left a position of nearly 5 years, after working with one of my surgeons for nearly a decade of my life and chose to move on to a field that stimulates me both personally and professionally. While I have never regretted the choice, I left good people behind and have a small hole in my large heart for those I no longer see. I found myself this winter in a depressive episode that was severe, rendering me incapable of doing anything beyond showing up for work. I lost two months of family time, hidden away safely in my bed under the covers. The light dimmed. Not wanting to talk or interact with the world.

    I cried multiple times a day, trying to figure what I did wrong. What I could possibly have done to feel so black and empty despite making lifestyle changes that excited me? How did I fall into a black hole? And the truth is: nothing. It is my disease. There will be times when I cannot control the onset of symptoms regardless of how hard I fight and adhere to my medications as well as non-pharmacologic management techniques as well. What a bitter pill to swallow, the notion that one can do everything properly and that mood episodes can and do still ensue.  And how does this relate to the lack of chatter on Facebook and absence of bright lime green? Perhaps others are having a challenging year as well. 

    I chose not to participate in my state’s annual NAMI walk this May for a myriad of reasons, however through emails encouraging participants I noticed two things. First, with sixteen days left before the walk there are over 50% less teams than goal participation and less team participation overall than last year. Last, the state chapter has raised less than 50% of their fundraising goal for the walk which helps bring programming to families and affected loved ones throughout the state. How is that possible in a day and age when there should be more discussion, more participation than ever?

    If I am becoming more selective in groups I support, perhaps others are as well. I think the bottom line is, for mental health awareness, which is really a way of avoiding saying mental ILLNESS awareness; we need to find our voice, find our message to be loud, clear and effective. For me I can no longer pretend it is strictly a stigma issue, but it is an issue in which we do not care for our own the manner in which we would want ourselves cared for with any other disease process. With mental illness, those who are the most ill, in need of the most care are ignored and passed over in favor of the less acute with less needs. With mental illness, those who are the most ill have the most trouble finding insurance coverage and obtaining the mythical parity we discuss on a daily basis. With mental illness, those who are the most ill are left to discriminatory practices in the workforce, with housing and from providers themselves based on personal bias not concrete evidence. We need to change that and talk about the most seriously ill. Would we leave the septic patient in need of critical care management homeless and on the street? Would we leave the cancer patient in a neutropenic crisis unable to fight off infection without care because they are too needy? Would we or would YOU accept anything less than our very best for any other disease. If your answers are no, then get familiar with the plight of those with serious mental illness among us and start talking.

    It’s mental illness awareness month, after all.

     

  • The Season of New Beginnings

    Pinch me. I think I’m dreaming. What I mean to say more accurately is “Pinch me, for I’m positive I’m dreaming.” The last medication change to pull me out of that deep dark depression I was in this winter has really worked. Mentally, I feel great. Most days I feel like me. Sounds like a bit a paradox, doesn’t it? However I mean I am finally starting to feel like the “me” pre-pregnancy with my oldest. I am feeling like me. No hypomania, no mania, no depression, just pure Ann. Before you get all excited and start jumping up and down like a wide receiver in the end zone, I am very much still vigilant and here’s why.

    My treatment team hasn’t completely bought into the unconventional cocktail I pushed them into trying. And that’s okay, as long as we all stay open with the communication channels at all times and discuss when there are changes in mood or other symptoms which may be concerning or have the potential to be concerning. I may be a provider in my day job, but when it comes to matters of my own health I need to always remember I am the patient. I am THE PATIENT. Being the patient means I get to have a voice at the table and advocate for myself. It additionally means I need to learn to sit back and take my provider cap off and trust my team’s judgment. I chose them to treat my brain for a reason. We’ve been on this journey together, managing to avoid hospitalization for the last three years because of a sound collaborative relationship of trust. They trust me to be open and honest about what is really happening on the inside. I trust them to do what’s needed to fix mood episodes or to keep me stable.

    I get antsy still when I do not sleep well. We have discussed here before about how poor sleep for me is a known trigger for hypomania. I have been experiencing more restless sleep and incredibly powerful, vivid, disturbing dreams since the medication change. For a while I thought I was going to have to stop following the current election cycle because each night I was stuck in a different candidate’s campaign. I was questioning my TV choices before bed given the raw, ripped from the headline cult-esque kidnapping style dreams my sleep took. Only I’m prone to revisit Gossip Girl on Netflix whenever I get bored with a show. My dreams have been plagued with people from the past, and not even individuals who I thought had significant meaning at the time. With the restlessness comes daytime fatigue, and with the daytime fatigue comes increase caffeine intake and with the increased caffeine intake comes an incredible fear of hypomania or mania. Only, I’m not. I’m just sleeping in a restless fashion and the dreams are now dissipating. I’m just me. Getting up and going through my day.

    However, with my day I daresay (and my husband would agree) old habits are incredibly hard to break. Being ill and symptomatic for so long I developed routines that would allow me to feel secure and comfortable. Were they functional? Not entirely. Were they useful to anyone other than myself? No. But I could do my job. I could get dressed. I could feel. And I could hide when the feels got to be too much for me. These old habits that helped me in the seemingly dark days are not what I need now. I need to learn to break them and live more in the moment. Breaking dysfunctional routine or changing old habits is extremely uncomfortable for even the best adjusted of us in society. I, on the other hand, need patience, kindness, patience, gentle reminders, patience, encouragement, patience, praise and did I mention patience to keep me moving forward with uncomfortable change. I am capable of it: self-awareness is the first step.

    And with that, I bring you the best Spring of my life. The season of New Beginnings.

  • Presidential Campaigns and Mental Illness

    In the days of my depression, in my absence from writing I was able to fill my time in isolation with reading and watching the political atmosphere of our current presidential primary election season. I’ve been paying closer attention than usual for a few reasons. The first reason is having a candidate I really admire in the race and have wanted to see run for the better part of a decade is both exhilarating and refreshing. Yet most importantly, my husband and I work behind the scenes to talk to congressional representatives about the importance of mental health reform and passing law that will make a real impact on care for those who need it. It is vital to me, as a citizen of this country with a serious mental illness (SMI) that our next President of the United States be not only well-versed on the issues facing the mentally ill in our country but also be equally committed to foment tangible reform.

    We can argue each candidate is equally unsuitable for the bombastic and rash uneducated remarks they have all said in the heat of debates or for a great sound bite to have the press repeat over and over and over. Which they have gladly and citizens have whipped themselves into a frenzy over on social media, the most recent example being Senator Bernie Sanders referring to the Republican debates as an example for the need of more spending on mental health reform. I chose to write a long letter to the senator explaining why his remark was in poor form and sent it to his campaign where it was well received. Which raises the question: instead of Twitter or Facebook bashing the candidates for their gaffes, are we educating them on why reform is needed and how what they say matters?  Which isn’t to say I’m not guilty. I recently posted on article on Rep. Paul Ryan remarking he gave up anxiety as a character defect for Lent. It bothered me. He may have meant it in the context of choosing not to focus on worry and “Let go and let God” however it’s not what he said and not how it was presented in the article. I should have written his office and educated him in hindsight.

    The House and the Senate both currently have bills this session looking to pass various types of reform. The House bill, HR 2646, is the stronger bill by far of the two. It works to comprehensively deliver better care to the more seriously ill in our country. It is not a one size fits all bill and never has been. It protects those who do not meet criteria for hospital admission, but desperately need treatment. It protects those who cannot understand they are ill but desperately need treatment, allowing their families to get them help instead of watching helplessly. It allows for families to have conversations with their psychiatrists, therapists and others on the treatment team that they were previously unable to without completely violating their right to privacy at the same time. Something that my husband would tell you had he been able to do, my last suicide attempt – the one that landed me unconscious on a ventilator for three days – could have been prevented. Critics of HR2646 want you to believe human rights are being taken away. Those critics are the ones that this bill does not apply to and have nothing to fear from its passage. This bill as a matter of fact does not apply to me in my current health state, yet I argue for it because it once did and someday might again. My family will need to have options for me. My husband and I want other families to have those options we did not. Congress, President Obama and a new incoming president (regardless of party affiliation) will need to understand this.

    The previous Senate bill, SB1945 worked to begin to address this, however when the bill went to markup the committee started over and created a new compromise bill with a number of amendments. The new version, SB2680 is sorely lacking in what is needed most. It has no reform for the most seriously ill among us. It has no provisions for HIPAA and allowing families to have dialogue with providers. The Senate is championing reform for changes in substance abuse prescribing practices now allowing for mid-level providers to participate in buprenorphine clinics and expansion of the number of patients that the clinics will be allowed to treat annually. My biggest fear is should HR 2646 make it the Senate and vice versa, treatment for the most seriously ill will be “compromised” right out of any reform bill.

    Unless we pass real, significant reform that is based on scientifically-proven treatment that works, I don’t see the system of our citizens who have a real illness being forced into the streets and jails changing. No other disease process is treated like this in our country, and SMI is no exception. Imagine if cancer patients were turned away for a lack of beds or for not meeting criteria for hospitalization?

    I am not suggesting you drop everything and support my candidate of choice. I am saying we all need to be comfortable that the person we each support individually will do the best job for the mentally ill in our country. If you believe with all your heart, yes, then perfect. If you have questions on where your candidate stands, reach out to the campaign. Get them answered in detail. As a voting citizen you deserve that much.

  • Surviving the Holidays with Mental Illness

    Have a holly, jolly Christmas; it’s the best time of the year… Unless you are me. Then you would treat the days between Thanksgiving and Christmas with dread and apprehension. I find myself often gasping, completely anxiety riddled and unable to cope with my emotions during those days and weeks.

    “What is the matter with you?” You might ask. You might tell me to focus on my three handsome little boys who spent their time eagerly awaiting the arrival of Santa, meticulously plotting, and writing out wish lists hoping they were on the nice list. And I do focus on them. In fact, the only reason I get out of bed during these days is for them. If it were not for them, I would gladly crawl into bed following Thanksgiving dinner and come out on New Year’s Eve avoiding the whole holiday hullaballoo altogether.

    This year, fortunately, I stayed on my mediation unlike last year when I stopped my medications in a fit of self-consciousness regarding weight gain. That was horrible and a Christmas I would rather not repeat. Despite remaining on my medication this year and having a ton of self-awareness in how the holidays affect me, I still found myself ill-tempered and short with people. The symptom of irritability remained high.

    It is a challenge for me to explain to loved ones how much I dislike the holidays, particularly when they themselves are so full of joy and excitement. I dislike the expectation, the pressure, and the obligation when I really need a day that I can be stress and worry free. I will always start to lash out and try to control anything that seems tangible enough to have any control over in order to internally maintain a sense of calm amid chaos. I need those who know me best to be able to sense when I get tense, or anxious, or irritable and have the ability to pull me inward and keep me calm. I need those who know me best to not react to my irritability with anger or tension of their own; as it will always escalate any negative symptom I might be experiencing. (Screaming back at me when I am ranting like a lunatic – yes, a lunatic – over scotch tape will never get me back to a level state of emotion.)

    It is a challenge for me to tell people what I need. Sometimes it is as simple as I don’t know what I need. Other times, the words escape me. Other times, I just isolate instead of facing my stressors head on because the stress is too overwhelming. And other times, I am too scared to verbalize what I need. I fear my needs will stress an already overloaded plate. I fear that my needs will sound irrational. I fear that no one will understand my need to regulate my brain and it’s current emotional capacity. 

    So how did I survive the holidays this year? I’m still figuring that out. I stayed on my medication. I managed to keep my sleep hygiene in check. I had the ability to take a quick time-out on Christmas Day and run to Starbucks when I needed to reset myself. A good friend texted me during the day to tell me how much she loved me. My husband did his best to recognize on Christmas Day when I would get over-stimulated. Lastly, I know at the end of the year, I will have all the time in the world for self-care once again.

    I think I did all right for holidays 2015 in the end. And I have 11 months before I have to think about it again.

  • Lockdown, Security Drills and Mental Illness

    “Good Morning. Please pardon the interruption. The school is on lockdown. The school is now on lockdown.” 

    As a parent, it always puts a lump in my throat when I get the courtesy emails to share that the school had a lockdown drill to prepare for the day someone has entered the building to cause harm. Mass school shootings have become commonplace in our society and many of us feel powerless to stop them given the congressional gridlock. However, it one thing to get a casual email to prepare parents for inevitable questions our children may come home with after a drill but entirely another to be physically present in the school and hear those very words I quoted above.

    I looked around nervously and was told it was only a drill and I followed the words of the staff meant to keep me safe. I made a joke or two about being caught inside for the drill, but my insides felt anything but calm or humorous.

    I have bipolar disorder. Many, many situations make me anxious. I never enter a room without knowing all my escape routes, where the nearest bathroom is and when I can, exactly who I am going to be dealing with. If I have to sit, I will sit near an exit. I will avoid conversation with strangers. And I might be constantly glancing around a room to take in my surroundings and assess the ever-changing situation. I did not used to be this way. I have accepted this is my reality and I have learned to adapt.

    In the darkened room, I smiled and made polite conversation as the drill was discussed. I offered a sentence or two on our fears since the Paris attacks last Friday, November 13. My brain was running a marathon with thoughts, and my heartbeat was fast, and running in second place. I wondered how everyone could be so calm. How they could be so sure it was only a drill? A lockdown situation would occur quickly and the announcement would be made without warning. How could they know? I wondered what if something is happening in another area of the building and we don’t know it? What if. What if. What if. I was a mess of what ifs. What if the silence really was danger approaching? What if the sounds of a door opening to announce all clear what someone who meant harm? I was incapable of shifting my brain away from these intruding ideas. How were my children coping? Is this how they feel? Are they wishing they were home? What about the children who cannot understand why we do this? What about the children whose brains work like mine does? How are they processing this? Are their little, beautiful hearts as frightened as mine?

    We assume that the drills will protect us and prepare us for the actual emergency. I understood rationally the goal of the exercise. My relief when the all clear came was not externally shared, I felt drained by the experience. And triggered.

    I have all these coping mechanisms when I place myself in public scenarios and events. I have them so that I know I can do what I need to do to take care of my brain. When I do not feel adequately mentally prepared I often get my husband to attend events with me as an added layer of protection. I didn’t have that option this morning, living in a household with two parents who work. I was unable to send a text to get reassurance. Participating in the drill meant not worrying about where my bag with my phone was. It meant being extraordinarily uncomfortable and not being able to talk about it. It meant treating the situation as real as it felt.

    National security has weighed heavily on our minds since Friday. Now we need to think about how to approach the subject with the sensitivity those with mental illness deserve and how we can allow them/us/me to feel safe and prepared for these events when we have days we are incapable of feeling prepared to step out of bed.