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  • 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.

  • 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.

  • 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.