Late (EARLY?) Stream of Consciousness

NOTE TO START: this is a stream of consciousness post written AFTER taking PM meds mostly on the topic of my experiences with mania and supports in my life. Not a standard post at all but definitely straight from the heart. Due to the timing of the writing being after my nighttime meds, I may clean it up a bit tomorrow. Wanted to get you guys an update though. 

Since my last post, my life has been all over the place. I’ve said it before and I’ll say it again, the number one way to fight stigma is to share our stories and show that we all are indeed human, regardless of diagnosis (or diagnoses). I mentioned in my last post that I am finally employed again and, in that post, I was embracing quite the optimistic view of things. Now, I am still embracing optimism and looking to focus on the good, but a part of sharing stories is being transparent, and so this is my transparency post for the month, I suppose.

I am a firm believer that you can’t help other people with their mental health if you are neglecting your own. 

Now, I don’t meant that you need to be completely healthy or recovered to do good, I’m talking more along the lines of that age old saying that if your own glass is empty, you can’t really fill the cup of someone else. Some have suggested that perhaps I jumped into this “blogging thing” too soon. The point of this statement is not lost on me. I started this blog less than a month out of the hospital while still engaging in intensive stabilization treatment. I can see how some would consider that my own recovery may not quite be far enough along to be jumping in to help others. But I disagree.

I disagree because I am not trying to write this blog from the perspective of someone who is “better” or is an expert. I am writing this blog to share my recovery process, in all its messy glory. The successes as well as the setbacks, the victories as well as the defeats. And, I hope, to share some things that have helped me which may help someone else as well.

That said, due to the fact that my recovery is still young and I am still learning to navigate this new life of mine, the “ideal” version of this blog – developing and realizing the vision I have for this blog – has been a pretty painfully slow process. 

And I recognize that that can be frustrating to you, as a reader. I’m still in a rather persistent battle with the army of demons. Some days are better than others, some weeks are better than others, and some months are better than others. See, when I’m feeling pretty stable and good, I tend to get very “big picture” and excited about the things I want to accomplish in this space. And I remain excited about that vision on some level all the time, but if you’ve ever experienced depression or mania or PTSD symptoms on full blast, you know that these things can really get in the way of executing any excitement in a tangible way.

So, here’s the deal: I spent last night pacing my kitchen freaking out for about an hour before I finally reached out to a friend.

My thoughts were streaking through hyperspace and I couldn’t catch a single one of them. And I couldn’t sleep. And I wasn’t hungry. And I was irritable. And, worse of all, I was obsessing over the fact that I didn’t used to be like this. I never experienced manic symptoms this extreme until November, and back then, they didn’t have a name. And, in my little obnoxious, bipolar brain, I had myself pretty convinced that the fact that these symptoms only really picked up after I started the meds to treat the “lesser” bipolar symptoms (the severe depressive episodes and “milder” hypomanic episodes of Bipolar Type II) that maybe the meds were to blame and taking them would make it worse. Now, on one level, I knew that that was irrational – I knew that my brain is now accustomed to these meds and that even if there was some connection, I need to keep taking them until I talk to someone about getting off them. (Spoiler alert – I don’t really need to get off my meds. As sometimes happens with Bipolar that goes untreated for years, my symptoms worsened over time. The trigger of my husband leaving, which kicked my PTSD symptoms into full blast also kicked the Bipolar symptoms up a notch. Common triggers for mood episodes include stress, loss of a relationship, loss of a job, lack of sleep, and drinking or using drugs excessively. Between November and January literally ALL of these things were staples in my life, thus, Bipolar symptoms increased.)

Now, my manic symptoms tend to manifest as mixed. I am wired, but not “having the time of my life.” I live in full blown catastrophic and irrational thoughts. Here’s an accurate representation of my stream of thought last night before I called my friend. I’m going to become full blown manic. I’m not going to sleep for a week. I’m going to go back to the hospital. I’m going to lose my brand new job. I’m going to lose all the progress I’ve made over the past six months. I’m going to lose my friends because my “grace period” is completely worn out at this point. I mean, really, how many times can someone answer the phone and walk me through a freak out before they just don’t have it in them anymore. Before their own cup is empty and they have nothing left to give. Cause that shit happens, you know. And it’s not because they aren’t good friends, it’s because I’m a bad one and I just keep needing all the things and it’s been six freaking months so when is it exactly that I stop being “crazy” and start being “me” again? What the fuck do doctors know anyway? Maybe they did this to me with all this intensive treatment. Maybe I’m actually fine. Maybe I’m blowing this out of proportion. Maybe I’m minimizing. I don’t know. But I know a lot of shit and taking my meds might make this worse but not taking them might make them worse too. I’m completely fine. I’m going to be fine because I’m awesome. I can muscle through anything. I can’t actually do anything. What if I can never actually work a real job again? My god everyone must think I’m a complete nut job and I’m just embarrassing myself with being so open about it, no one actually sees me as “Sheila” anymore. But I’m doing amazing things by helping people. I’m rocking it. I just need to snap out of this because I know I can. I’ve white knuckled way worse. I should call someone. No, I can’t. If I call a crisis line they’re just going to show up and take my ass to a hospital because they all see me as insane anyway so why would they listen to me. Maybe I should call my friend. Its not that late in California. No. Text. I should text her. ETC. 

These are the kinds of thoughts that spin – and spin and spin and spin some more. And I obsess. Now, I’m not proud of this by any means, but that little stream of consciousness was mostly uttered aloud, in my kitchen, to myself, as I paced. Because nothing says “I’m alright” like talking to yourself in a dark kitchen in the middle of the night right? Thankfully, I DID end up reaching out to that friend and the phone call resulted in me taking my regular meds as well as my PRN sleep pills I’m meant to take when manic stuff is popping up. That combination of medicine got me a grand total of 3 hours of sleep last night. Which is another red flag. And I’ve taken it this evening as well – about two and a half hours ago. Now, this stuff usually KNOCKS ME OUT. I mean, I take it and if I’m not in bed within thirty minutes someone is going to have to help me get there. This has not been the case this evening or last evening. I am decidedly in the hypomanic range at the moment, and I’m very convinced that the only reason I’m hypo- instead of hyper-manic is my meds. And I’m honestly even concerned about writing this, or, rather, about having some of you read this, because I’m annoying myself. And I apologize if I’m annoying you, too. The thing is, recovery isn’t linear and there’s no magic button.

I’m not trying to make this post all about me complaining about where I’m at or anything like that. I’m taking all appropriate steps to minimize the impact of this current situation.

Today was a fantastic day. Truly. A very god friend of mine became a citizen of the United States and I was honored to attend the ceremony. This friend is a former coworker of mine from the group home, and so I got to see a lot of my former coworkers and even my old bosses. I was so happy to see everyone, but my anxiety and that stupid voice in my head that like to replay every single screw up I’ve ever made was putting me on constant blast. My PRN sleep med has a half life of thirty hours and I have mood stabilizers and anxiety meds I take throughout the day. The combination of these things had me pretty mellow today, if a little overwhelmed. And I felt a deep sense of loss being around my coworkers and boss and realizing that I’m now on the “outside” of that equation. It’s a very strange position when you’ve essentially spent five years spending more time with those people at work than with your own family. I’m not sure how to explain it. I did not act on this urge, but there were more than a few times that I wanted nothing more than to profusely apologize to my former colleagues and supervisors. Apologize for not being able to handle this on my own. Apologize for needing help. Apologize for not being able to work with them anymore. Apologize for the abruptness of my departure. Apologize for all of it.

The vast majority of that is internal stigma and anxiety lies, but there is something to be said for changing roles and the difficulties that poses on one’s sense of self. I was someone who viewed my work as a core component of my identity. If you asked me to briefly describe myself before having to leave work, the two answers I would consider most important would be: mother and residential instructor in a group home for dual-diagnosed young men working toward independence. (ok, that’s a mouthful, maybe not “brief” in the strictest sense of the word, but that would be my answer.) Is it healthy to have so much of your sense of self tied to your job? Probably not. I admit that. But nevertheless, it was. And it is a real loss to not do that work anymore. And, believe it or not, when you work so closely with the same people in a sometimes high-stress environment, there is a lot of guilt for leaving – at least there was for me.

So, while seeing all of these people who I truly love, and bearing witness to my friend’s naturalization ceremony was an incredible experience I will never forget, the combination of all those unresolved feelings around leaving work for mental health reasons and the simple amount of people at the courthouse, in the elevator, and at the reception afterward was incredibly overwhelming. I took some extra PRN anxiety meds, caught a short nap on the ride home, but came home wired, irritated, and anxious. I’ve heard from more than one person that nightfall can increase mood symptoms, and that has certainly been the case with me. So, once I got my daughter to bed, I again felt incredibly irritable with those same racing thoughts and obsession over whether or not I was overreacting or underreacting, increased rate of speech, and a general “intensity” that only seems to come with mania. Despite this, I DID take my meds – both normal and PRN – and I did attempt to sleep (no luck so far) and I did both without needing to use my phone a friend life line (did I date myself there?)

I’ve just been thinking a lot about what a contrast I’m feeling now compared to my last post. I said I wanted other people to take the kid gloves off, but I literally spent two hours on the phone with my friend trying to get level headed enough to take my meds and try to rest. My head is so all over the place, I don’t know if I need complete isolation from everyone trying to help me or frequent phone call check ins and reminders. And regardless of what I think I “need” now, it honestly seems for fluctuate – sometimes day by day. So, I can see how overwhelming that is for others – it’s definitely overwhelming for me. And, as is the theme of my life since December, I again find myself needing the reminder not to make sweeping generalizations of myself being “better” or “worse”. It’s an ebb and flow. One of these day, that will actually click.

So, again, I don’t want to be an obnoxious human and bother anyone, but I really want to share this with you guys and also to give myself some space to reflect. Maybe I can even take this in and show it to my therapist to give her the true inside scoop.

NOTE: MANIA IS NOT FUNNY OR QUIRKY, IT IS A SERIOUS MEDICAL CONDITION WHICH REQUIRES TREATMENT BY A MEDICAL PROFESSIONAL. DO NOT STOP OR START MEDICATIONS WITHOUT SPEAKING TO A DOCTOR FIRST AND RECEIVING AN RX. In addition to medication and friend support, I have a phone call in to my psychiatrist and therapist’s office to see if there are more things I can do to help manage my symptoms at the moment. I am a member of a peer support group as well. I don’t want you thinking that I’m flying solo and barreling toward the deep end. I’m managing and it will get progressively better as long as I stick to my treatment plan.

“Trauma Informed Care” as featured on Betty’s Battleground!

I’m REALLY excited to share a guest post I did for my blogger friend and fellow PTSD Mama Betty. Her blog is amazing and I’m so happy I was able to contribute! Here’s my guest post on Trauma Informed Care. In it, I speak at length about my professional experience and training in trauma informed approaches and contrast my professional experience with the decidedly-NOT-trauma-informed nature of my experience with receiving crisis stabilization.

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When treatment is NOT trauma informed, and you’re dealing with trauma, it kind of makes you feel like this. 

I’m really proud of this piece, as I feel it’s important to the overall conversation on the state of mental health care in this country and around the world. I hope you’ll read and consider sharing it!

ALSO, please check out Betty’s site and connect with her on FacebookTwitter, and through her site (linked above). 

 

C-PTSD as featured on Sidereal Catalyst!

I’m really excited to share with you this guest blog I wrote for Sidereal Catalyst, a blog owned and operated by Abbie Zebrowski. If you’re not familiar with Abbie, I’d encourage you check out her work! She is a published author and poet and a force for change in the issues facing those of us living with Mental Health diagnoses! Depression: Catalyst for Change is a fantastic collection of helpful resources and a place for individuals to share their stories without shame. One more way to break down the stigma around mental health! I’m very thankful to have been given to opportunity to contribute to this blog, and I hope you will give Abbie a visit and take a quick peek around her corner of the internet (after you read, like, and share my post, of course! 🙂 )

 

 

Please welcome my Depression Catalyst for Change guest, Sheila, who shares her story and her struggles with Complex Post Traumatic Stress Disorder.

via C-PTSD by Shiela O’Donnell | #DCfC — Sidereal Catalyst

Top 5 Ways to Get Through a Bad Situation (Without Making It Worse)

There’s a lot of information out there about preventative measures for relapse into a mental health crisis. There are also great resources on what to do in a crisis situation. But what do you do when you’re just having a really hard time? What if you’re feeling completely overwhelmed, but you’re not posing any threat of serious harm to yourself or others?

I’ve learned a lot in the past few months about distress tolerance skills. These tips and tricks have been immensely helpful for me in my recovery. Tonight, I’d like to share with you my Top Five skills for dealing with negative, overwhelming emotions.

NUMBER ONE

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If you’ve been following my story, you know that I live with Complex Post Traumatic Stress Disorder. Included in the PTSD gift basket are things like dissociation, panic attacks, and flash backs. Each of these events are about as fun as getting your tooth drilled without Novocain (this happened to me once at the hands of a very incompetent dentist, so I feel justified in making the comparison). You may have heard of different variations on this particular grounding technique, but my favorite method is this: look around the room you’re in and pick a color. Now, find five different shades of that color, or, if you can’t find different shades, just find five different objects of that color. Once you’ve done this, find five things you can touch. If you can, physically reach out to objects around you. Are they hard or soft? Are they smooth or rough? Are they warmer or colder than your hand? Etc. If you cannot manage to reach out, consider things you can feel without moving. What does the fabric of your shirt feel like against your shoulders? If you’re sitting – what does the chair or couch or bench feel like against your thighs and back? If you’re standing, what does the floor feel like against the soles of your shoes? How does your hair feel against your ear or neck? And so on until you’ve hit five. Finally, what are five things you can hear? This one really helps bring me back to the present, because you have to really focus to find five unique sounds. It can be challenging, and it may take a few minutes of intense listening, but I have yet to be in a place that I could not, with concentration, find five different noises. If you are still not grounded after going through these steps, repeat. In my experience, this is nearly 100% effective when I need to get back to the present and back to my center ASAP.

NUMBER TWO

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Sometimes, you’re so overwhelmed by your emotions tolerating them feels impossible. Everything starts to close in and your anxiety or depression seems to be consuming your entire being. When I’m really overwhelmed with depression, it feels like there’s a gaping hole in the middle of my chest and everything “good” about me is seeping out. It physically hurts. When I’m overwhelmed with anxiety, it seems as though the entire world is folding in on me and it’s suffocating. How can you sit with such intense emotions? Often, the mere thought of being “in your body” anymore seems impossible. You almost wish you could just crack your rib cage open and shrug off your skin and muscles for a few minutes to get some relief. These intense feelings tempt many of us to revert to old, unhealthy, maladaptive coping techniques, such as: self injury, binge eating, or substance abuse. In these moments, sometimes the best thing you can do is remember that the discomfort is temporary and find some way to distract yourself until the intensity of the feelings decreases a bit. It’s important to note that there is a difference between distraction and avoidance. Avoidance is complete neglect of your feelings, unwillingness to get curious about the causes of your distress, and, in the long run, it is not conducive to mental wellness. Distraction, on the other hand, can provide a healthy, temporary reprieve from those feelings until the intensity has diminished enough for you to sit with them and consider what may have triggered you. I’ve found it very helpful to keep a list of easy-access distraction techniques on me at all times. I keep mine in my smartphone, but I have friends who carry theirs on actual pieces of paper in their wallets. Some people I know also have a list posted somewhere in their house. Whatever method you feel will work best for you is the one you should use. When you’re not in distress, compile a list of short distraction activities you can utilize. My list includes playing a few rounds of Galaga or Tetris on my phone (10-15 minutes maximum), doing dishes, playing the “Wikipedia game” (pick two completely unrelated topics, start at one, and click links in each article to see how few clicks you need to get from the first topic to the second), and going outside for 5 minutes of fresh air and a change of scenery. Your distraction list will be unique to you, but it’s important to choose activities that will take a short time to complete to decrease the intensity of what you’re feeling until you can face it and deal with it. Choose things that you enjoy; choose things that will help clear your head.

NUMBER THREE

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I’ve mentioned this one before, but I want to expand a little on it here, because it really is a wonderful tool! Whether you’re living with a mental health diagnosis or not, every single one of us gets overwhelmed from time to time. For some of us, it’s completing that big work project or research paper for school; for some of us, it’s getting out of bed or doing the laundry. Whatever the task at hand, if you’re feeling stuck, the 10 minute rule can help. It’s pretty self explanatory – you set a timer for ten minutes and work on whatever it is you need to work on until the timer goes off. If you’re seriously depressed and feel like you can’t get out of bed, set a timer for 10 minutes and walk around your apartment for that time. When the timer goes off, you can go back to bed if you feel so inclined. If you’re writing a paper for school, set the timer for ten minutes and write until it goes off. If you feel the need to, stop once the timer goes off. I say “if you feel the need to” because often times, I’ve found, action precedes motivation. Once you actually start moving around or start writing, you might find that you’ve gained some momentum to keep going. Or, you may be completely exhausted after the ten minutes. But either is fine! You’ve done something. In those ten minutes you are tolerating a task that you thought you absolutely could not do. And you can be proud of that!

NUMBER FOUR

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Mindfulness is invaluable. Truly. I don’t care what your diagnosis is, or if you even have one – in this rushed, consumer driven, plugged in, instant gratification culture of ours, mindfulness can save your life. Mindfulness takes many forms. You can mindfully eat an apple by focusing on the texture of the fruit on your teeth and lips and tongue, the flavor, the juice, the smell, and the crisp snap of each bite. You can mindfully take a walk by considering your feet against the ground, the feel of the air on your face and hands, the sounds of traffic or nature around you, and the way the sunlight reflects off your surroundings. Mindfulness is simply being present. Not considering the future or the past. Traditional mindfulness practice involves things like deep breathing and guided meditations, but practice is definitely not limited to these things. Some people prefer traditional mindfulness practice, and that’s fantastic! If you’re moving through a busy work day and need a few minutes of guided meditation on your lunch break, I’d recommend checking out the Headspace App, if you haven’t already. As a trauma survivor living with PTSD, though, I struggle with traditional mindfulness. Focusing on my body and breath tends to trigger a panic attack, and if I’m doing it with my eyes closed, I’m in for a full-blown flashback. So, I’ve needed to get creative in my mindfulness practice. Doing the 5-5-5 technique mentioned above when I am not triggered is great mindfulness practice, and, it keeps the method fresh in my mind for easy access when I really do need it! Choosing to walk away from my phone to engage with my daughter, focusing solely on whatever game she wants to play, the details, the characters, and the inevitable laughter, is mindfulness practice. Completely devoting my attention to learning to play a new song on my guitar is mindfulness practice. Photography is mindfulness practice, as you need to really take in your surroundings, consider the person or object you’re shooting, evaluate the lighting, and position yourself in relation to that person or object to best capture the message you wish to convey with the photo. Opportunities for moments of mindfulness are everywhere. And practicing mindfulness every day can really help you access those skills when you are feeling distressed.

NUMBER FIVE

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Self soothing is intrinsic in the fabric of our beings. Self soothing skills are some of the very first things we learn as tiny, brand new humans on this planet. When things are really bad, though, we have to remind ourselves to get back to the absolute basics. We need to feel warm, safe, secure, and comforted. My favorite self-soothing techniques are wrapping up in a heavy blanket or wearing a baggy hoodie that I can burrow into and away from whatever it is in my environment that is overwhelming me. I also like to light candles or burn incense with comforting scents. Sometimes, I will put on some music, either calming or songs that bring up good memories of time spent with friends and loved ones (I have a special playlist for these moments). Occasionally, I’ll take a very warm bath. I also like to snuggle my cats. Tactile. Real. Sense-based. Basic. These are the essence of self-soothing. These techniques are for the really bad moments. I use them most when I’ve just had a flashback and I’m grounded and present but need that extra level of feeling secure and comforted. I use them when I’ve just woken up from a terrible nightmare and I’m not ready to even attempt to go back to bed yet. I use them when that gaping hole of depression in my chest feels like it’s going to swallow me up entirely. I use them when anxiety is making the world collapse on me and I feel like I’m being crushed. Self-soothing is very literally about just holding on and riding the wave of intense emotion until it passes. No goal in mind afterward. Just getting through the moment as comfortably as you can.

 

There you have it! My personal Top Five distress tolerance skills. What do you do to get through a bad situation without making it worse? Do you have any favorite grounding techniques, healthy distraction methods, motivational tricks (like the ten minute rule), mindfulness techniques, or self-soothing activities or items you like to use? If so, I’d love to hear your tips and tricks in the comment section below, on Twitter (@paradichotomy), or on Facebook!

On Shoveling, Fathers, and Forgiveness

If you live in New England, you’ve probably seen a lot of posts about shoveling and snow today. As I write this, I’m sitting cozy in my bed, wearing a hoodie that once belonged to my Papa, acutely aware of the fact that there is a minimum of 2 feet of snow covering the ground outside. Why am I acutely aware of that fact? It’s not all the Facebook posts. It’s the fact that I spent about 2 hours today shoveling it.

Growing up in New England secured shoveling as a familiar task to these arm and leg muscles. Now that I’m a bit older, I can safely add back muscles as an affected area, too. Despite the physical strain (and the pain I will no doubt feel tomorrow), I’ve always enjoyed shoveling. It’s quiet. It engages your whole body, but is so repetitive, it leaves plenty of time to let your mind wander. It’s nostalgic, in a strange way. For me, each shovelful of snow scooped up digs up memories along with it. Tossing that snow to the side leads to a lot of reflection on the past.

When I was very little, snow storms meant playing in the banks my Papa made as he shoveled the driveway down to the cement. That was one of his things. He shoveled with a precision no plow could ever hope to achieve. Don’t believe me?

Look at these shots of his handywork in the snowstorm of April 1997.  IMG_20170315_184753_151

That’s no photoshop or trick of the light; this man, at the age of 77, did that single-handedly with his $20 orange shovel from Hoxie’s (an Ace Hardware/ convenience store up the road). My Papa’s idea of shoveling was insane perfectionism personified.

I, too, have channeled my perfectionist tendencies into shoveling, though not in the way my Papa did. (Back road living simply doesn’t allow you to shovel down to the ground, as the dirt is frozen and uneven and there are sporadic clumps of grass in the way). My perfectionism was in my strength. I was in a constant, unspoken, competition with my brothers, to prove that I was just as strong, to prove that I could do anything they could do. I took pride in my ability to clear the driveway without help. It validated my strength. It also elicited a genuinely proud “Wow! Good job, Sheil!” from Tom, my stepfather. And isn’t praise from one’s father what every child wants more than anything?

As I was shoveling today, listening to the same ’90’s music I listened to through my Walkman back when I was shoveling with Tom, I started thinking about how complicated my paternal relationships have been. I guess the association of shoveling and being praised for it and the idea that it’s traditionally a “man’s” job got the thoughts churning. I thought of that snowstorm in ’97, I thought of snow fights with Tom, I thought of times sitting in the snowy woods alone thinking about my life and God and the nature of love and fathers when I was a kid (I have always tended to wax a little philosophical, I suppose.)

I’m not even sure where to start digging in to those complex connections.  I guess I’ll start at the beginning.

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These three photos are all precious to me. There’s my mom and my biological father with little 6 month old me, then one year old me and my Papa, and finally 13 year old me and my stepfather, Tom.

My dad wasn’t around when I was a kid. He struggled with heroin addiction and Bipolar 1 and was in and out of jail for most of my formative years. I don’t want to sound silly or overly sensitive or anything like that, but having basically no contact with my father left me feeling pretty lost as a kid. My mom did her best to assuage this by answering my questions with honesty when I asked, but the truth is, not having your dad around leaves a sort of hole in the core of your self image. Father-Daughter dances were out of the question for me. Father’s Day was confusing. (It still is, sort of, honestly.) No one “gave me away” at my wedding. When I was in school and the other kids would talk about their dads and ask about mine, the reactions to the fact that I had a stepfather were almost always shame inducing. (Baptist school, remember.) And, as kids are prone to do, the curiosity would get the best of them and they’d ask, “Yeah, but what about your real dad?” And that shame would grow along with the burning in my cheeks. Because I never knew what to say. And almost none of the other kids had any frame of reference for someone not knowing their father. I felt, deeply and at a very core level, that there must be something wrong with me. And all of the talk of “God the Father” was simultaneously alluring (maybe God can fill this hole) and discouraging (I don’t even know what that word really means.) When I would pray to God to fill the hole and be my father (a prayer I uttered frequently) it never seemed to work. Maybe I’m saying it wrong, I would think. Or maybe I’m just not meant to have any father at all. 

I want to be fair, despite my father’s absence, I did have father figures.  Papa was my constant growing up. In truth, he was the biggest and most influential father figure I had. He taught me how to ride a bike, tie my shoes, play basketball, throw a punch, sail, and gave me my sarcastic sense of humor. Though he lived 300 miles away for most of my life, I talked with him and Nana on the phone every single night when I was a kid and visited them every school vacation. As I grew older, if I was in trouble or needed advice, Papa was the first one I would call. He loved me as his own daughter, and I never doubted that for a minute. But, try as he might, he could not fill that hole of not having a “real” father.

Then, there was Tom. Though he told me explicitly not to call him “dad,” he was also a father figure. While there were many times in my life that I was scared of him, I also have a decent stash of good memories – camping in the White Mountains in New Hampshire, driving around listening to Pink Floyd, watching Star Trek,  and playing Monopoly and Poker are some of the highlights. Tom was not an overly affectionate man, though. At least not to me. The picture above is one of probably 5 hugs I received from him in my childhood. And I cherish that picture as I cherish the good memories of Tom I have.

When I was admitted at Dartmouth, part of the intake process was explaining what brought me there, which meant going into some of the specifics of what caused my PTSD. After a few days on the unit, a nurse was checking in around something (I can’t remember what exactly, my first few days there are pretty hazy from a lack of sleep coupled with med changes). What I do remember, very clearly, is this nurse saying, “This man, if you can even call him a man, Tom… god, who does that?” She spat out his name. She had no regard for the fact that maybe I had some good associations with this guy along with the bad. (As children who grow up in chaotic or abusive homes often do.) I felt that old creeping shame at her comment. I’m not allowed to love Tom. I shouldn’t love him. But I do. And I realized in that moment that all these complicated feelings from when I was a kid didn’t just go away because I grew up. That sad, ashamed little girl is still alive and well in this grown-up’s body.

Now, I need to make something explicitly clear. I love my father. I’m happy to say that I’ve been in touch with him for the past 10 years, and I have been very grateful to get to know him and to have him not only in my life, but also in my daughter’s life. But having him in my life starting at 19 cannot undo the fact that he wasn’t there when I was 9, or 16, or when I went to my first prom, or when I graduated high school with honors, or when I was accepted to college.

I loved my Papa. For my entire life, he was there, and I placed him on a pedestal. (I imagine the same pedestal that most kids place their actual fathers.) His ability to perfectly shovel the driveway is the exact analogy for how I viewed him and everything he did: perfect. In my little girl eyes, he was absolutely perfect. But, as an adult, I can see that he was not without his faults and struggles. He faced many adversities in his life, and his mentality was to just keep shoveling through. Keep your head up and just keep pushing. And he occasionally did things that caused me pain. When I was a child, he told me not to tell others about what was happening at home. Hearing from him, the man I trusted and loved more than anyone, that I needed to be secretive and keep everything to myself did help cultivate that shame I felt so deeply. And, of course, eventually, my Papa was not able to “keep pushing”, and he left us in the messiest way possible when he died and took my Nana with him. Which was, and remains, the biggest curve ball this life has ever thrown me.

And, yes, I love Tom. Truly, despite everything. I love him for being there when I dislocated my knee in seventh grade. I love him for the time he and I hiked into Sawyer Pond a day before everyone else to set up camp and woke up with the sun to go swimming and cook oatmeal over the campfire before the rest of the family arrived. I love him for the entire summer that he spent introducing me to classic films like Casablanca and Cool Hand Luke. I love him for the time he said, “I promised you when you were 6 years old that if Pink Floyd ever toured again, I’d take you. I don’t think that’s going to happen, so I’m doing the next best thing.” and we took a trip to see the Australian Pink Floyd Show play in Manchester, New Hampshire. I love him for the times he threw me across Kiwanis Pool when I was a kid, and the times he’d “A-Bomb” splash me and my friends from the high dive. I love him for every joke, every laugh, every happy memory he gave me. But there are plenty of bad memories, too. PTSD-inducing bad memories. And those can’t be simply ignored or brushed over.

But I love him because I recognize that, through everything, he was doing his best. And my Papa was doing his best. And my Dad was doing his best. They were all doing their best. It wasn’t ideal. But it was what I had. And I can’t change that.

Psychologically, I understand now why I always gravitated toward tasks of physical strength, like mowing, moving heavy furniture, and yes, shoveling. Because, from my frame of reference (Baptist) those were “man’s” jobs, and if I could prove to myself that I was strong, maybe life without a “dad” was a little less scary. If I could handle doing those things on my own, maybe I’d be ok.

My relationship with my father, and with my stepfather, and even sometimes with my Papa, wasn’t at all what I hoped and prayed for when I was a kid, and there’s still that little girl inside of me wishing things were different, trying to make sense of everything and find her place in this world. Trying to balance the good with the bad, and internal strength with the ability to fall apart and borrow strength from others when she needs it.

And maybe it was her outside today, shoveling for hours through high drifts and layers of packed, heavy, wet snow and memories and thoughts and feelings. Hoping with each motion to prove her strength. Hoping to validate her adulthood. Hoping to prove to herself that she’s ok, even though she didn’t grow up with a “father.” Hoping to live up to her Papa’s standards of working hard and pushing through. Hoping with each scoop and each heave, to get somewhere closer to the truth, to understanding, to acceptance, to forgiveness, to healing.

 

 

 

 

 

 

 

On My Experiences With Our Screwed Up Mental Health System

This is not a jovial or lighthearted post. This is a venting post. I may even venture into ranting territory. I would like to apologize in advance for doing all of the complaining and none of the problem solving. I recognize that that can be non-productive. But I’ve got some issues with our mental health system which have been festering for months, now, and I really just need to give voice to my lived experiences. That said, should any readers have thoughts or suggestions to improve my current situation (or, what I’m sure, is the current situation of many more like me), please share them! And if anyone knows of any resources which may be helpful, send them my way and I’ll be sure to link them so that, hopefully, others in similar situations will be able to find some useful tools here. I’m feeling pretty out of options at the moment, myself.

I’ve been struggling to come up with an adequate metaphor for our mental health support system, and I still am. I can label it – consistently inconsistent, frustrating, slow, over-complicated, etc. But a really good metaphor? Maybe a maze. Yeah. A crazy-house-mirror-maze. Only the mirrors are shattered in some areas, so you’re gingerly tiptoeing on broken glass, trying to make your way out without getting lost or injured; trying to walk the line between self-advocacy and being perceived as “overly-demanding/rude/aggressive” (because these are “behaviors” which will get you put on hold, disconnected, or asked to “calm down” in a condescending, but slightly foreboding tone that promises you’ll be in trouble if you continue to “overreact” to the situation).

If you know me, you know that I’m all about being polite and patient. Sometimes to a fault. You also know that I know many case managers personally and professionally. I am currently one semester shy of my Bachelors in Social Work. I was literally studying to become a case manager. I’ve also been on the receiving end of “self-advocating clients” who were, truly, being belligerent and unreasonable more than one time. So, I am not speaking broadly about all case managers in this post. I have also carefully considered the facts of the situation and believe that my current frustration, anxiety, and general agitation are justified and valid, which is why I am sharing my thoughts and experiences with you now.

I have absolutely no desire to be disrespectful, or to make what is already an immensely difficult job harder by being a “problem client.” But I have, over the course of 5 months, been put through the wringer on several levels, and, as the Cold War Kids said, “Hang me out to dry, you’ve wrang me out too, too, too many times”.

I am currently diagnosed with Post Traumatic Stress Disorder (PTSD) and Bipolar Affective Disorder (BPAD). I take medications to manage both diagnoses, and, in a perfect world, I would also be having sessions with a regular therapist once or twice weekly for further stabilization and management of my symptoms. But this is not a perfect world.

Here are the facts of the past five months of my life and my interactions with my primary doctor, the PHP and IOP programs I attended, the State of Vermont, and the crisis case manager I’ve been seeing at a local mental health organization until my insurance kicks in:

  • In early November, my life circumstances changed drastically, resulting in me living truly abuse free for the first time in…well… ever. And I was essentially hit in the face with 28 years of trauma and abuse. I developed severe PTSD symptoms.
  • In Mid-November, I did not sleep for 10 days straight. I did not eat. I lost 12 pounds in those 10 days. I was wired. I was having flashbacks and dissociative episodes like it was my job. I was depressed, but it was agitated depression. I could not sit still. I could not focus. I was making reckless and unhealthy choices. I was a complete and utter wreck. I went to Urgent Care on day 5 of no sleep, which happened to be a Friday. The PA I saw there was wonderful. She called the local mental health organization and was told by their crisis response that I’d be able to see the psychiatrist on Monday. She gave me a small RX of Lorazepam to help me sleep. Even with the Benzo, I did not sleep. I was doped up, but I was still wired and jittery.
  • Monday came. I was told I did not have an appointment with the psychiatrist, but the referral was in. All they could do for me was get me in to see a crisis counselor. The extent of the crisis counselor’s advice? “I get insomnia sometimes, too, and I count backward from 100 to sleep.” (I think I showed immense restraint in not yelling at her.)
  • I went back to Urgent Care that night. They told me if the Lorazepam wasn’t allowing me to sleep, there was nothing else they could do. They established an appointment with my PCP for mid-week.
  • I finally crashed on Wednesday night and slept. I crashed hard. I became very depressed, very low energy. This depression continued for a month. 
  • My PCP started me on a very low dose of Zoloft, and made another referral to the same psychiatrist.
  • I’ve been trying to get in to see this psychiatrist for 5 months, and I’m told it’s pretty much the only option available to me as psychiatrists in Vermont are difficult to come by.
  • Waiting on referrals, going to appointments only to be told I needed to wait longer, having my PCP assure me the referral was in and active while the mental health agency insisted it was not – these were all major contributing factors to me spending a week at inpatient.
  • After discharge from the inpatient unit, I spent the next month and a half in PHP and IOP. The case managers there promised me, up and down, that there was no way in hell they’d discharge me without adequate aftercare established, including therapy and psychiatry. Not only was I discharged without those appointments established, I was also discharged with no insurance and no means to maintain my medications.  
  • We only discovered that my insurance had lapsed on my second to last day of IOP. That was a Friday. I applied online for State insurance first thing Saturday morning. I called on Monday. I set up an appointment with Community Action to try to help get my application expedited. I tried so hard to be on top of my game and not be discouraged. The person I spoke to at Community Action, whose entire job is literally to help people get State Insurance, told me over the phone, “You’d be better off calling them directly. But have a book. And a phone that won’t run out of charge, because you’ll be on hold for a long time. I can’t see you in person until Friday, but I’ll set that appointment and if you don’t come, honestly, I’ll just be happy to get a break.” Verbatim. To me. Over the phone. I get burn-out, but how far past “done” do you need to be to say that to someone calling you for help? 
  • I called the State people, and I’m very pleased to report that that phone call was not nearly the hell the Community Action person made it sound like. I only read three sentences of my book before a real person answered. That real person, though, told me I was looking at an up to 30 day wait. Running out of medications with no money to get the final refills, no appointment to get further refills written, no therapy appointments set up, and nothing with the psychiatrist, either.
  • All of the back and forth and the apparent inability to communicate among my primary care doctor, the physician’s assistant I saw at Urgent Care, and the mental health agency for a referral to psychiatric services ended up costing me my career (and with it, my health insurance, which is creating the current stressors I’m facing) and my schooling, because, let’s be honest here:  if I had just been able to see someone back when all of this started, the more intensive interventions would have very likely been unnecessary and I would probably be writing this blog in my spare time between work and homework and mom-ing. (Ok, really, I probably wouldn’t have time for this blog. So, maybe that’s the silver lining.)
  • Today, the crisis coordination case manager I’ve been seeing in the interim until I can get established insurance and regular therapy sessions calmly told me I’m in serious jeopardy of not being able to maintain my medication routine until insurance kicks in, because of the out of pocket cost and because my primary doctor is unwilling to fill the types of psychiatric ‘scripts one needs to manage BPAD. In addition, insurance and all that aside, I can’t even get on the calendar to meet with the psychiatrist until I’ve met with my PCP and received a referral. A referral to the psychiatrist. You know, the very same referral that has, according to my PCP, been sent no less than three times already.
  • Today, I mentioned to my interim crisis case manager my concern that there may be a mixed-state episode in my near future based on what that’s looked like in the past (those 10 days without sleep, et. al.) and some current symptoms I’m experiencing: Screenshot_20170313-192328She responded by asking, “How did you even get a Bipolar diagnosis? That’s not Bipolar. I’ve worked with a lot of people with Bipolar and what you’re explaining isn’t Bipolar.” (How did I get diagnosed? By sitting down with a fucking psychiatrist and telling her exactly what I’m telling you, that’s how!)    
  • This interim counselor is not aware of this fact, but it took me a solid three weeks to even accept the Bipolar diagnosis. I was very resistant to it at first and did my fair share of pushing back against it before actually accepting the fact that the psychiatrist I was seeing through the PHP knew what she was talking about and was there to help me get well and stay well. So hearing the case manager (who, by the way, is NOT an MD and has spent a grand total of 75 minutes face-to-face time with me in the last 2 weeks) not only question the diagnosis, but essentially state flat out that I do not have BPAD was not only infuriating, but also incredibly invalidating of all of the work I’ve been doing toward accepting and attempting to manage the diagnosis.

But I can’t say that. I can’t say any of it. I have to hold it back, because if I start to say these things, I’ll likely end up yelling them at this point and getting myself in trouble. Because when you’re meeting with or talking to these particular caseworkers, you’re not allowed to be upset. “Upset” is for Therapists. “Medication concerns” are for Psychiatrists. “Referral requests” are for Primary Doctors. Polite acceptance, it seems, is all the Case Managers with whom I’ve been working have room for. And I am so far beyond “polite acceptance”. I am frustrated. I am angry. I am saddened by the stated of things.

You’ve heard of jumping through hoops? I’m bouncing around among five different agencies/offices and perpetually being told to talk to someone at one of the other phone numbers. It’s like a line of people holding the hoops through which I must jump, but every time I jump through one, the fucking person holding that hoop just moves to the back of the line and waits for me to jump through again.

It feels, in many ways, like this system is designed to allow people to fall through the cracks. If I wasn’t a stubborn, persistent, determined, sometimes pain-in-the-ass person, I would have completely given up on this by now. As I write this, I am discouraged, yes. But I am also genuinely scared. I’m scared that I’m going to have to taper off the medications which are still not even at full theraputic value in my system yet. I’m scared about all of this waiting leading to a destabilization and possibly another hospitalization for me. I’m scared of the implications of all of this. I see the “cracks” for what they actually are: gaping holes. And I’m terrified of the fall.

And, to end, I’d like to acknowledge a few things about privilege. In some ways, yes, I am in a position of disadvantage in our society: I am a woman, I am currently a single mother with no income, I’m an abuse survivor, and I have substantial mental health diagnoses.

But, in many other ways, I am very privileged. I am white. I am a Natural Born U.S. Citizen. English is my primary (and only) language. I am perceived as a cis-gendered, straight person. I am educated. I have access the internet. I am literate. I have some knowledge of and familiarity with the system which I am attempting to navigate. I have a steady work history. I have a car and a license. Despite being unemployed, I am not at risk of homelessness. I have family and friends supporting me in many different ways.

All of these factors place me at a great advantage over others who are attempting to gain support and services through this same system, and if I’m having so much difficulty with it, please take a moment to consider how hard it must be for those who do not possess the same privileges.

Our system is broken. And with the current administration’s plans for the future state of health care in this country, it is at risk of becoming irreparable. We need to fix it. We need to fix it before it’s too late.

On Meaningful Connections

This is not what I intended to write this evening. It’s actually the emotional opposite of what I intended to write. See, I’ve had an exhausting day of phone calls, waiting rooms, and non-productive meetings in an attempt to get everything situated. Red Tape is real and my god does it get in the way of things. I planned to write a rather scathing commentary on the impact of burnt-out workers, seemingly insurmountable hurtles, and the general way the system treats you as a number and a clipboard-check-list rather than as a human being on motivation to even try to get help and support. But that’s not what I’m going to focus on tonight, because I need a little positive energy and I’m just going to cultivate it for myself.

Rather than focus on people who seem to see me as “another case file,” I’d like to talk a little about meaningful connections and their importance in recovery and maintenance of mental wellness.

First, I have family members who have really stepped up in different ways to show their love and support. My mom has been immensely helpful in many tangible ways, from financial assistance to childcare, and emotionally, too, by just generally being around if I want to talk. My Uncle calls me frequently to check in. My foster sister, who I hadn’t seen in years, came up to visit me for a weekend and it was like we never missed a beat. She helped me in a lot of tangible ways, too, and I’m seriously looking forward to the next time I get to see her.

I’ve said it before, and I’ll say it again: I have some fantastic friends. Friends who showed up for me even when I was actively trying to push them away. Friends who gave me “space” when I did push them away but were there for me the minute that I, much like the Prodigal Son, came crawling back beaten and filthy and out of options. I do not feel I deserve such unconditional love and support, but I’ve been blessed to receive it nevertheless.

I named this blog “Parallel Dichotomy” because the two words are, by definition, mutually exclusive. Carl Jung had a concept he called the “Tension of Opposites,” holding two seemingly incompatible things in balance. This has been a theme throughout my entire life. In this post, I’d like to focus on one particular example: if I’m being honest with myself, I’ve always had this internal pull toward self-destruction, but I’ve denied it’s existence and kept it mostly in check by my need to be perceived as responsible and reliable. As with any aspect of Self, though, the more you deny something, the more it tends to pop up at very inconvenient times and in very unexpected ways. “What you resist, persists,” as the saying goes.

This has been the case for most of my life, I think. Too afraid to be honest with myself about my feelings and thoughts, I avoided them at all costs. I denied my anger at others, and thus, took it out on myself through self-harm rather than expressing it in a productive way. As I got older, I tended towards drowning my sorrows in alcohol, especially when alone, rather than facing my feelings head on. I tended toward indulging my self-defeat in private while publicly projecting a persona of strength and confidence. I tended toward being resistant to medical professionals (or support of any form, really) while holding a career in mental health support. I tended toward a lot of maladaptive stuff, and masked it all with a smile. I basked in the light of others telling me how strong I was while really, I felt weak and broken. I enjoyed the pats on the back I would receive for each accomplishment, all while feeling, at my core, that I didn’t deserve any of it. And whenever anyone would get too close to seeing the “real me,” I’d pull away. Only now am I beginning to recognize these patterns and work to consciously address them.

My friends, though, saw these patterns for what they were far sooner than I did. When I was in college the first time, I very nearly had a breakdown which likely would have required hospitalization were it not for such wonderful friends. Actually, I nearly had two: one slightly less acute episode my Junior year of college, and then the spectacular, blazing fire of self-destruction that was my Senior year blow-out.

In each case, I had friends step in and intervene. Junior year, my high school friend Kim was literally available for texts and phone calls every day, any time of day. That, in conjunction with therapy, was sufficient to get me through what I thought was intense depression and insomnia. (Interesting aside, around age 20 tends to be when the Bipolar switch gets flipped, and looking back on that month and a half or so and discussing it with a psychiatrist, it’s now clear to me that that was my first real mixed-state manic episode.)

Senior year, I was in a state of complete willfulness. I was just going to do my thing, get through the year no matter what life threw at me, because I was stronger than my depression and anxiety and trauma and dammit, nothing was going to stop me from graduating! I’d just act like everything was good, “fake it ’til I made it,” and self-harm and drink as stress relief. As I am now 28 years old and still do not have my bachelor’s degree, you, astute reader, have probably deduced that this approach was unsuccessful. See, there was no way in hell I could juggle everything life was throwing at me. Thankfully, I had these wonderful people called “friends,” you see, and one of them in particular realized I was on a very slippery slope, took away anything I could possibly use to hurt myself, and essentially dragged my ass to therapy (*cough* Paige *cough*). She also refused to leave me alone until everyone was sure I’d be OK. (There was a whole fiasco with anti-depressants making me hallucinate and a Halloween ER visit in which literally all of my closest college friends showed up, piled into the car, and hung out in the ER waiting room while Paige sat with me in the actual exam room. Again, friendship at a level I did not deserve. And another aside, such a reaction to an SSRI should have been a red-flag for Bipolar, but the doctors missed it.)

Many of these people are still around today, despite me really falling off the face of the earth after I found out I was pregnant, burying myself in work and my marriage and parenting, and generally being a shitty and unreliable friend.

As I gingerly claw my way out of the pit of self-hatred and self-destruction once again, this time actually learning ways to avoid the pit all together next time (a foreign concept to me), many of these friends have come back into my life in full force and demonstrated that even though I suck at picking up the phone, they are always there for me.

My friend Paige (the same Paige from Senior Year), who literally lives across the country now, supported me by listening to me vent, cry, get mad, and sometimes, just bitch and whine from October (when things were just starting to slip) on. She came to my house for almost a whole week right before Christmas and dealt with me and my flashbacks and panic attacks and dissociation which, at that point, were so bad they disrupted just about everything we tried to accomplish. I talked to her on the phone leading up to me going to the hospital and she gently encouraged it. And she talked to me every day I was in the hospital and in the ensuing weeks and months. She’s one of those good friends I’m not sure I deserve. (Ok, she’s one of the best friends possible.)

And then, there’s Cassie. Now, Cassie has known me for over 15 years. She’s younger than me, but she’s always kind of played “big sister” in a way. In 90’s kid terms, she’s always been the Cory to my Shawn. That self-destructive tendency I mentioned earlier? If Cassie wasn’t in my life in middle and high school, I’m honestly not sure where I’d be today. I’m quite sure, though, that I wouldn’t be taking positive steps to improve my well-being and over all quality of life. Because Cassie has always possessed the ability to steer me away from the stupid choices and toward the right ones. Gently, with compassion, without being forceful. She’s the person who is always on the other end of the phone if I call. I spent the weekend prior to my hospitalization at Cassie’s house, and she spent the weekend making phone calls, doing research, letting me sob on her lap, holding me while I rode out panic attacks and flash backs, comforting me after nightmares, and, ultimately, convincing me (with the help of Paige and Kelly – another fantastic friend I have) that the hospital was the way to go because things needed to change and I needed help and, despite my Irish stubbornness, I couldn’t do it on my own, or even with friend support and once-a-week therapy.

Once at the hospital, I had five different people who called me almost every day to check-in, and I learned about another very meaningful connection – peer support and the importance of spending time with people on a similar journey. It might sound weird at first, but I made some fantastic friends while on the psych unit and at the partial hospitalization program. And I plan to maintain those relationships, because spending time with people who “get it” is essential to success, I think.

And, as of today, I’m beginning to connect with other mental health advocates as well. Bloggers, YouTubers, and Twitter Kings and Queens. I’m feeling a little more confident about putting myself “out there” as a vehicle for impacting change and shifting perceptions about mental health struggles and successes. I’ve mentioned before that I have a drive to be a force for good in this world and a desire to have a positive impact. This has not diminished, I’m simply shifting it toward a more healthy (for me) platform.

The scathing post about some of the reactions I got today from “support” people will come at some point, but it felt important, tonight, to focus on the good people in my life, and I dedicate this post to all of you.

On Loopholes, Jumping Through Hoops, and Silly Holidays.

In which Sheila returns to the use of footnotes in hopes of being perceived as somewhat funny. 

Ok, here’s the situation*: Vermont is a silly place. I say that with the utmost respect for the Green Mountain State. I’ve lived here most of my life, and, if you’re not from Vermont, it really is as amazing as Bernie Sanders said.**  One of the really amazing things Vermont does is declare “Town Meeting Day” a holiday so that everyone*** can go to their respective Town Meetings and vote on things like school budgets. Literally, every state office is closed on Town Meeting Day, and, to my knowledge, Vermont is the only place to engage in this strange custom. Now, don’t get me wrong, it’s a wonderful thing to encourage people to participate in local politics and in forming the budgets of the local schools and such, however (and it’s a big however) it is incredibly inconvenient should you find yourself in the situation in which I found myself this morning.

Quick little personal note – I am currently unemployed and, according to all the doctors I’ve spoken to, am to remain unemployed with the exception of “possibly being able to work a part time, low stress job which is conducive to a consistent schedule to successfully prevent any intensified PTSD or BPAD symptoms.” Saying that this is a massive pain in the ass is an understatement. There’s something else you may not know about me: I’m kind of a work-a-holic. If I had my way, I would consistently work a minimum of 50 hours a week. It keeps me busy . All this “down” time is driving me nuts.**** So, I’d like to be working, but the powers that be, it would seem, have a different idea. With not working comes the loss of the benefits I had while working, the most pressing one being health insurance. To be absolutely clear, no one knew that my health insurance had lapsed until Friday afternoon. I filled out the application online for state insurance on Saturday. So I have been as on top of this as possible. But it doesn’t happen overnight, and you really need health insurance if you are hoping to manage a chronic medical condition, especially one requiring expensive mood stabilizers.*****

Back to this morning: I realized yesterday that I had less than a day’s worth of one of my medications and no means with which to get more until the insurance stuff cleared. This stressful epiphany came as I was having a late afternoon meeting with a counselor at a local mental health organization. Like I said, the application is in, and I’ve been told, based on my application, I’m approved. But it’s not “official” until the paperwork goes through all the way. State offices close at 4 PM on weekdays, and I did not finish my appointment until 4:10 yesterday. Then, I couldn’t make the phone call to get that magic number that will allow me to fill my prescriptions today due to Town Meeting Day.

So, there I was, with less than enough of this medication I’ve been told I cannot go without to get through the day and apparently no recourse. I called my Primary Care office and explained the situation. They said they were not sure they could help, but “someone will get back to you.” I then called the local mental health organization. I got voicemail. The waiting game began as my anxiety steadily increased.

My PCP office called me back at around 2 PM. I calmly explained that I do not have insurance currently (but I will, and it will be retroactive to the end date of my prior insurance), that I was dangerously low on this medication that every keeps telling me I absolutely cannot stop taking, and I have no money to pay out-of-pocket for a partial RX refill. The lady on the other end of the phone seemed genuinely concerned and interested in helping me, and I could hear the attempt at a reassuring smile in her voice****** as she said that she could call my pharmacy, have them fill the prescription and bill the hospital for now, so my retroactive insurance could handle it when it kicks in.

Fantastic! Problem solved! That was surprisingly simple, I thought. ******* She said she’d call me back once it was cleared it with the pharmacy.

About 15 minutes later, my phone rings and it’s the same very helpful nurse. Her opening line, though, is far less helpful and reassuring than I anticipated. It certainly wasn’t “You’re all set! Just head to the pharmacy.”

“So, Sheila,” she opened with a tone of hesitation. Uh-oh. “Your dosage on this medication has substantially increased since the last time you saw your primary care physician.”

“Um… yeah. Last time I saw him I was fresh out of Dartmouth and not diagnosed Bipolar, so it was being used in a very low dose to manage anxiety. Now it’s being used for mood stabilization.”

“Ok, well, your primary doctor isn’t really comfortable writing prescriptions of psychiatric meds in such high doses. Do you have an appointment with a psychiatrist lined up?”

“Yes, but we’re not sure exactly how far out that appointment will be. I am working with [mental health agency], though, and will have access to psychiatric services through them. The idea with discharge from the IOP, though, was that my PCP could write the prescriptions in the interim. They were supposed to communicate with you guys about that.”

“Well, they haven’t, and your doctor is not comfortable writing scripts at these dosages. So you’ll need to talk with the people at [mental health organization] to set something else up. Also, with your recent hospitalization, I need to clarify that you haven’t had any thoughts of suicide. That’s another reason your doctor is hesitant to write such large dose ‘scripts. We don’t want you trying to overdose on them.”

And there’s the real problem. “I haven’t, and I won’t. These meds are the things that are preventing both manic and depressive episodes. If I stop taking them, then I might be in trouble. But I don’t see how getting the prescriptions I’ve been taking for the last month and half to get stabilized is considered more dangerous than stopping them and risking being unstable just because a doctor is nervous I’ll suddenly try to kill myself with the meds that are literally preventing me from hitting that point.”

“Well, it’s an issue of liability.” Ah, yes. Liability. In our litigation filled society, it’s a legitimate concern for medical professionals. But I briefly wonder what the lawsuit would look like if I was forced to stop taking this medication and then ended up hospitalized again or worse. 

“Ok, so what am I supposed to do?” My anxiety and irritation are pushing code red levels at this point. 

“Well, he’s willing to write a prescription for one day’s worth. That will get you through until tomorrow when you can call about your insurance and also connect with your interim counselor to establish interim psychiatric care until you’re established with consistent care.”******** She tells me to come pick up the one day’s worth of this currently essential medication, which she gives me at no cost due to this loophole she’s found.

This fiasco took me just about all day. It was stressful. It prevented me from doing several other things I was hoping to accomplish today, and I spent a good chunk of the day honestly concerned I would not be getting this medication and missing it for a day would send me into a tailspin and land me back in the hospital, because it’s been drilled into my head over and over again how essential it is that I maintain consistency with my medications.

Maybe it’s my inner cynic, but I can’t help but wonder if the reaction to this situation would have been different were this medicine for a “physical” health problem verses a “mental” health problem. I suspect the answer to that question is a resounding “Yes”. Fear and stigma, it would seem, extend even into the medical world. Which is pretty silly when you think about it. BPAD and PTSD are medical conditions. The chemicals in and physical structure of my brain are messed up. Medication and therapy are essential to correct those issues and maintain “normal” functionality, much like a person with diabetes needs insulin to stay healthy. But “mental” health is still viewed as being very separate from physical health, and mental health patients without an established psychiatrist tend to fall through the cracks of misunderstanding and legal concerns.

So, I’m moving into tomorrow completely unsure of how much of this can be resolved in the next 24 hours. I’m worried that my Primary will flat out refuse to fill the prescriptions I’m now acclimated to and dependent upon; I’m worried I won’t be able to get in with the psychiatrist for over a month (psychiatric appointments in Vermont are very hard to come by, it seems). I’m stuck in this system that simultaneously fears destabilized mental health patients and hesitates to write prescriptions for mental health medications to keep people stabilized.

I was discharged from IOP with no insurance, no way to refill prescriptions, and no established, on going psychiatry appointments. Yes, I’ve learned the skills I needed from that program, and mentally, I was stabilized and prepared to move on. But, when you think about going from two months of wrap around services to seeing a temporary mobile crisis counselor because they don’t require insurance or payments upfront (another loophole I’m currently utilizing) and having a primary care doctor completely unaware of your medication changes and, it seems, unwilling to maintain those changes short term, you can start to see how fucked up this system of ours really is.

I’d be lying if I said I’m not more than a little frustrated. “One day at a time” is fantastic advice, but I’m not sure it’s comfortably applied to prescriptions. I certainly don’t want to be moving through the next however-long-it-takes-to-get-insurance-and-a-psychiatrist one dose or one day at a time.

One thing is for sure, I will feel so much better once my on-going maintenance care is established and I have insurance. I’ll feel better once I can work again, and I don’t just mean working at a “low stress, consistent part time job,” I mean working. Full time, with benefits, in some capacity that feels meaningful. Because I’m not built for a “job”, I’m built for making an impact. I don’t mean that in a “savior complex” kind of way, I just mean that I am someone who needs to feel like somehow, someway, I am making a positive impact in the world.

But for now, I’m literally being forced to live moment to moment. And maybe this is where that DBT idea of Radical Acceptance comes into play. But make no mistake, tomorrow morning this girl’s coming out the gate (politely) swinging, with self advocacy and assertive communication skills cranked all the way up to 11.

*my parents are NOT away on a week’s vacation – an obscure reference, perhaps. OLD Will Smith – like before the acting gigs old.

** Unless you live in the NEK (I grew up in St. J and Danville, I’m allowed to say that.)

*** State and Bank employees

**** Too soon?

*****Seriously, these things are, like, $5 a pill and I am supposed to take 18 of them a day.

******Medical professionals have a “special” voice for mental health patients, I’ve discovered. Quiet and gentle, intentional, like verbally attempting to defuse a bomb, all the while sweating bullets and terrified of an accidental detonation.

*******Famous last words. Right up there with “Hold my beer.”

******** I think I’ve mentioned more than once on this blog how very much I dislike “interim” and “short term” care.

On Moving On and Bumper Sticker Wisdom (That Actually Helped Me)

(Photo – I wanted a selfie while admitting myself to the psych unit… because that made sense. My wonderful friend humored me. This picture is denial incarnate, I think.)

Today was my final day of Intensive Out Patient treatment. This is a massive transition for me, as my life for the past 2 months has consisted of some form of group therapy almost every weekday. In January, when I admitted myself to the psych unit at Dartmouth, I was not anticipating the length of the journey upon which I was embarking.

In Dialectal Behavioral Therapy (DBT), there is a concept called Radical Acceptance. The basic idea is that you have to accept reality for what it is. If you accept reality, while there may be pain, you will not suffer. If you refuse to accept reality for what it is, then you will suffer. Another way of putting it is “willingness verses willfulness”. Willingness is the ability to accept where you’re at and do what it takes to get better. Willfulness is rebelling against or refusing treatment.

I struggled with willfulness at the beginning of my treatment. Though I voluntarily admitted myself to Dartmouth, I spent the first two or three days I was there insisting that I could not learn anything from the group therapy because I had a strong  professional understanding of the topics being taught.

** A slight aside on my professional identity: I have spent the past four and a half years of my life as a residential instructor in a group home. My job was teaching emotional regulation and life skills to dual diagnosed individuals (think Autistic/Schizophrenic; Bipolar/Fetal Alcohol Syndrome, etc.) . In that capacity, I was very familiar with the concept of DBT as it is a resource offered to many of the clients with whom I have worked.

Back to the Dartmouth Psych Unit, sitting in a DBT group as a patient felt pretty unnecessary to me. On my third day on the unit, I had a good conversation with my nurse for the day. She told me that I needed to shut off the professional part of my brain, the part that “knew” DBT skills intellectually, and I needed to have “beginner’s mind” when approaching the material and consider how those skills could be applied to my current situation. This perspective helped me overcome my willfulness on the unit; but I was still willfully in denial of the scope and impact of the struggles I was facing. I was convinced I would return to work and school in a matter of days and that this little detour to the hospital would have no long-lasting impact on my life.

This, as it turns out, was a completely irrational belief. You can’t qualify for admittance to a psych unit one week and be back to business as usual the next. There’s all this follow-up care shit you have to do. (It’s not really shit. But that’s my angry, willful Bostonian coming out.) For me, aftercare was a month of Partial Hospitalization and two and a half weeks of Intensive Out Patient (IOP). Finishing up IOP, though, is also not the end of my journey to wellness. Now, I’ll be working closely with my PCP, therapist, a psychiatrist, and Voc Rehab to try to really get things evened out and get my life back on track. And I’m very excited to continue to learn and grow. Right now, though, I’d like to take a few minutes to reflect a little, if you’ll indulge me.

In the past two months, I’ve learned a lot about myself. I’ve learned that I have Bipolar Affective Disorder. I’ve learned that my PTSD symptoms don’t have some magic cure, and that I’ll have them, to some extent, for the rest of my life. I’ve learned that I have an unhealthy tendency toward numbing my feelings with alcohol. I’ve learned that the way to manage many of my symptoms is to set and follow a schedule (something I despise). I’ve learned that medications are essential for the foreseeable future at the least, and possibly for the rest of my life. Prior to each moment of learning were several moments of willful denial.

“Fuck off, I’m not Bipolar!”

“The PTSD isn’t a big deal. It will pass.”

“I’m not taking any meds heavier than Tylenol.”

“Schedules are boring.”

“I’m a night person. I’m not going to start being in bed and working on sleep by midnight.”

“I don’t even need this program.”

“Drinking with friends isn’t a fucking issue. I can drink whenever I want. Who are you to take away my social life?”

The above are all actual things I’ve said out loud to my friends and/or treatment team over the past two months. Honestly, there have been moments that I’ve been truly insufferable, I’m sure. But, one by one, I’ve moved away from my denial and toward acceptance. And you know? Accepting things as they are instead of getting angry about how they “should be” has truly helped me stabilize and engage fully in treatment, and I have come a long way.

Treatment isn’t over yet, though. And there are some immediate hurtles for me to try to jump over. I’m hoping I’ve got enough momentum to clear them. My insurance lapsed mid-February, which is making follow-up care tricky to coordinate and getting prescriptions refilled impossible at the moment. (I’m working on that, though, with both my PCP and a local mental health organization, and should hopefully have that resolved in the next few days.) But, it’s definitely a stressful note on which to leave the intensive, wrap around support of the IOP program. (There will, in the future, be a separate blog post all about the ridiculous struggles of finding and maintaining affordable, quality mental health care.)

For right now, though, I just wanted to take a few minutes to share with you some bits of what I like to call “bumper sticker wisdom” that I’ve learned in the last two months that I’ll carry with me for the rest of my life:

“Sometimes good is good enough” (for your inner perfectionist)

“Yeah but your yeah buts” (For the moments your self talk is not helping you.)

“Check your lens” (Also for the moments your self talk sucks and your inner critic is dictating your perception of yourself and others.)

“Your shit; my shit.” (For the moments you may struggle with being able to differentiate between your responsibilities and other people’s problems)

“There is no bad mindfulness practice, there is only practice or no practice.” (Even if you’re REALLY distracted, and being mindful is hard, as long as you practice bringing it back to the present, you are succeeding in practicing mindfulness.)

“Act Opposite” (This one is from Cognitive Behavioral Therapy – you feel like staying in bed all day because you’re depressed? Do the opposite, even if you only make it to the kitchen and do 10 minutes worth of something before going back to bed.)

“Use the 10 Minute Rule” (This is maybe exactly what it sounds like, you do something you are avoiding for 10 minutes at a time. Got an inbox full of emails you’re avoiding replying to? Set a timer for 10 minutes and start reading and responding. Wherever you’re at at the end of that 10 minutes, you can choose to stop or continue based on how you’re feeling, but at least you made a small dent.)

“Action Precedes Motivation / If You Wait Until You Feel Like It, You’ll be Waiting a Long Time.” (Mood dependent behaviors are going to keep you stuck in your cycle of suck. You’ve got to do something to break the cycle. 10 Minute Rule is great here.)

“It’s Simple, but not easy.” (All of these things seem simple enough, maybe even like oversimplifications of the struggles you’re facing. But no one is saying it’s “easy.” Doing this work is fucking work. But it will help improve your situation over time.)

“Distress Tolerance: Getting Through a Bad Situation Without Making it Worse.” (I literally have a card of go-to healthy coping methods I can use when things really suck. I also have a list of favorite activities – I call it my “kit-bag”)

“G.L.A.D. / What’s Not Wrong? Journal” – One thing you are Grateful for today, one thing you Learned today, one thing you Accomplished today, one thing you took Delight in today, and two or three things that are NOT wrong in this moment. Write it out every day. Keep track. Over all, it will help challenge those deeply entrenched thoughts of “My life sucks”, “Nothing good ever happens to me”, “Why bother?”, “Fuck it”, etc.

And finally, remember that we are all working as hard as we can, and we have been working as hard as we can, but recovery is based on finding a way to work better, not harder.

So, I’m onto the next step. Wish my luck in this insurance fiasco. I’m told going off my meds due to not being able to refill them at this specific point may undo all the work I’ve done in the last two months, and I’m really not trying to have that happen.   I have several meetings tomorrow, so I anticipate a more technical/ resource filled post at some point.

Movin’ onward and upward, as they say.