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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

  • Maintaining a Little Hope

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

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

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

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

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

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

  • Insurance, the Final Frontier

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

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

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

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

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

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

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

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

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

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

     

  • Is it me or Isn't it me?

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

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

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

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

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

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

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

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

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