Category Archives: Work

My Story – A Summary

Hi! I’m Deb, and I blog at http://SuddenlyBipolar.Wordpress.com

I am an ordained Presbyterian minister. I like to think of myself as a Mental Health Advocate as my current calling, since I can’t pastor a church anymore because of how my Bipolar Type 1 with psychotic features manifests. I also have Generalized Anxiety Disorder, which just exacerbates the Bipolar.

I’m a lover of movies, books, politics and sociology. I’d like to do a PhD in Sociology of Religion if my brain will let me. It’s hard to read, so we’ll see what’s in store for me in the next few years.

I recently moved back in with family to get extra support. Even with a strong support system, it wasn’t enough to keep me from being lonely where my thoughts and feelings would take over to make me suicidal and bouncing in and out of the hospital over 30 times in the last 7 years.

I was diagnosed in September 2010 after falling from a manic high (August being a common time for mania for me) into a suicidal depression, my first and definitely not my last. Among my therapist, psychiatrist and me, we figured out I had my first depressive episode at 13 when I had major back surgery for scoliosis. Manic delusions may have started as early as 9, however. I had hallucinations in 2 psychotic episodes my first year in college at age 17, a common time for bipolar to raise its ugly head.

I spent my young and middle adult years in primarily hypomania, some mania and fewer depressions. I had a vibrant spirituality that people thought was a gift, but was really mania. Oh, well.

As I said, I was diagnosed in 2010, a year into my first solo pastorate after years as an associate pastor or youth director. I loved and was good at my job. It’s been a huge loss and sore spot that I can’t pastor anymore. Over the next 7 years I had amazing care from my psychiatrists and therapists, and a strong support system. But I still bounced in and out of a psychiatric hospital over 30 times, for as few as 3 days, and as much as 2 months. I saw the darkest days, despite love and support. It took Years to get the right meds and every time I went into the hospital we tried something or tweaked something. And my psychiatrist outside did too, though she was more conservative.

Finally, I spent 3 months at my family’s home relearning how to care for myself (cooking, cleaning, exercise) and getting concentrated support and love. Eventually, together, we concluded that I should move to Texas from Chicago-land to continue support, be around people, and at least temporarily live in community. I hope to live a mile away soon and still get the benefit of daily support but independent living again.

I’ve been with my family for two months now and we are slowly making our way into community. I don’t feel settled. I miss my old support system. I sobbed leaving my main psychiatrist. I’ve been in a day program and inpatient for a few days. But I’m looking forward now to beginning a new life with meaningful activities.

Early in my diagnosed life, I accepted the bipolar as something I would have to manage for the rest of my life. The bipolar and anxiety are just a part of me, though sometimes taking care of them seems to overwhelm me. I remind myself they are just a part of me. I have routines and schedules. I advocate for myself with providers, and I talk with my support system regularly, sometimes (ok, most of the time) daily. I use coping skills like Radical Acceptance, Mindfulness, Thought Defusion, and Committed Action toward My Values (from Acceptance and Commitment Therapy). I also use Dialectical Behavioral Therapy skills such as Mindfulness, Emotion Regulation, and Distress Tolerance. I also volunteer at various places, though it’s hard and I have a hard time holding even one for longer than a couple months. Maybe I haven’t found the right place for my passion yet.

I am open about my struggles and triumphs on social media. I educate about and offer resources on bipolar on social media (such as my page on Facebook, Suddenly Bipolar). Advocating for others seems as important as advocating for myself. My blog is one way I do that by sharing my thoughts, feelings and journey. People tell me that reading about these things is helpful, and I’m glad. But really it’s my journal. 🙂

I hope to meet you in the blogosphere or on Facebook or Twitter. Together we can end the stigma and support one another. Find your voice!

Cross posted on MyLoudBipolarWhispers.com as part of the “There’s Glory in Sharing Your Story” campaign.

My Brain Doesn’t Work

So, I’m enrolled in a MOOC through Coursera.  Animal Behavior: “In this course we want to introduce you to the science behind animal behaviour, and to highlight topics of current active research. Since we can’t provide a comprehensive account of every aspect of behaviour, we will focus on the ecology and evolution of the behaviour of wild animals.” Two professors from the University of Melbourne are teaching it. The information is fascinating and as enjoyable as I thought it would be.

But I’m having a huge problem with concentration and retention. I understand the concepts in the video lectures (and articles) as they are presented, and as they build on each other in each 15 minute lecture. But by the next lecture – even if viewed only a few minutes later – I’ve lost my understanding. And I fall asleep during some of the videos or articles as I try to concentrate so hard to understand and integrate. And then – adding insult to injury – I can’t remember any of the main concepts by the time of the quiz.

This situation feels like proof of what I’ve been trying to tell people about all the problems I have with concentration, focus and memory in daily activities, reading and at work. My brain’s not working (a) the way I used to absorb information from many sources and (b) maybe at all. (A) makes me so very, very disappointed. I used to be a sponge and squeeze out whatever I needed whenever I needed it. (B) is what I’ve been expressing for years to my care team. I’m tired of hearing that it will eventually get better. It’s not getting better. I feel like it’s getting worse, in fact.

I’ll give the class another week or so and see if I can keep up or get something out of it even without full comprehension or retention. Disappointing.

The Financial Costs of Bipolar

<rant>

bill1. I just received my first bill for the 58 days I was inpatient hospital this winter (plus another 21 outpatient). It only covered the first 11 days and was OVER $30,000!! I have pretty good insurance, which knocked my deductible/copay portion down to $1200 – which again, is only for the First Eleven Days!

Eventually I will run into my co-payment maximum for the year as these bills come in, thank goodness! (I think it’s near $3000, again, I’m lucky). But I will be on an 18-month repayment plan. Do you get that? I will be paying on Winter 2014’s hospitalization until FALL 2015!

What if I need another hospitalization in 2015? Then 2015’s deductible and copay are in effect, and I’m paying on that until 2016, and so forth and so on.

This has been going on for nearly 4 years already. Just 2 months ago, I finally finished paying off Winter 2013’s hospitalization.

 

2. While in the hospital for 58 days, I had to resign my job because I couldn’t work then or with the projected state of recovery I’d be in. Another financial cost. My part-time job could have paid for the medical bills. It could have offered some cushion in my savings, which is fast dwindling. It could have gone toward philanthropic giving which is important to me.

 

insurance3. I’ve spent A YEAR arguing with an insurance company about paying a provider that I see several times a month. I pay a copay amount each time, and so the provider gets some money. But they have not been paid in Over A Year!

I’ve told the insurance company that Medicare won’t pay. I’ve shown them the Explanation of Benefits that shows that Medicare won’t pay. The provider has sent letters saying they don’t work with Medicare – all of which have been lost by the way.

And the insurance company keeps sending out forms to fill out “We think you have another insurance. Please fill out the information here for coordination of benefits.” I think I’ve talked with every coordination of benefits officer they have at the company.

And it seems straightened out. Until a bill is submitted. And a denial comes out. And I ask what do you need to pay this? And I do this and the provider does that, and the bill still doesn’t get paid.

Finally I talk with a super-supervisor (since the company won’t give me a dedicated account representative. “Any of our staff are qualified to handle any issues you may have” my ass.) She understands exactly what is going on, sees what I’ve submitted most recently, thinks all shall be paid.

And then I get a call from her. Nope. My provider needs to send in Another Letter, Identical to the Ones They’ve Sent In Numerous Times. This time it will directly to her and all the appropriate notes will be made so that there should be no more trouble.

A Year.

A Year this has taken.

And I have no faith that this won’t happen again with this insurance company or any others. I spend hours each month coordinating benefits between Medicare and my secondary carriers. What do people do who are not able to do that? At least I have the faculties most of the time to do it and follow what they are saying (even when it’s out of both sides of their mouths).

::SIGH::

</rant>

58 Days

Starting over.

I’m entering a new phase of recovery. While in the hospital this winter/spring, I told my doctors that I can’t keep going on this merry-go-round of getting a med tweak, forcing myself through each day, and then spiraling down into suicidal depression and landing in the hospital every 3 months.

They listened, and we tried many different kinds of meds until I was stable on a combination for 3 days straight with no changes. One of my med patterns is that a med gets tweaked or added/removed each day in the hospital or at each psychiatrist appointment. And somehow I still get discharged without that med combination settling into my body so that we can see that it is really showing the positive results we expect it to show.

So this time – these 58 Days in the hospital from January through April (1/6 of the year!) – I laid down the law, was an even stronger advocate for myself than I usually am, and insisted on this medical stability before discharge, even into an outpatient program. I need a chance to start a new pattern, one that moves forward, rather than cycling back. I flat out said I didn’t think I had it in me to face yet another spiral into suicidality and be able to keep myself from the edge. Something drastic needed to be done. I already feel ashamed each time I end up in the hospital. It took a lot to overcome the shame to admit this time that I wouldn’t be able to stay safe with the same pattern. And to overcome the shame of spending months in the hospital.

See, I have good coping skills. I have a regular, standardized routine of when I get up and go to sleep, and I eat at regular intervals. I strive for structure to each day. I am determined and driven to find recovery. I am the model patient, I’m told. But I ran out of any possible energy to keep going with life without the proper med support.

I have truly wonderful, world-renowned doctors (truth!). And they listened and acted. We have taken a completely different approach to dealing with my mood. The anxiety is properly medicated and I have strong skills to work with it. The OCD shows up in obsessive thinking and visions of myself doing things, including violent images. If I’m not suicidal, these thoughts and visions are much easier to deal with!

But my mood’s baseline has been “Depressed” (say, 2-4 on a scale of 1-10) for the 3.5 years since diagnosis. I’m not here to give out med advice, and so I rarely say what meds I’m on. But what we are doing is really different and I actually feel that my mood and energy are both higher. I have a chance at a new start!

I realized while in the hospital this last month that what I really need is a chance – a real chance – at a new start. I have a new apartment that I’ve barely lived in because of treatment, and I am financially stable. I still have a marriage to grieve and new ways of living to get used to. I have coping skills and a strong support system who has shown up in spades during this long hospitalization period. But some pieces were out of place.

As it turns out, normal stress from my part-time job correlated with a few hospitalizations. And in the last 6 months, I think I worked a total of 2 months because of being in treatment. And so, with a heavy heart, I resigned my job. I can’t work if I’m not feeling well. And to get a new start, I need to focus first on my health.

So here I am, the evening before starting a daily outpatient program again, and I have lost a job, a marriage, a neighborhood and home, and health. That’s a lot to grieve. That’s a lot to start over with. First things first, starting with my health. I got a good med combination that we are putting to the test. Then working on grief. Time to put my life back together from the beginning.

Rough Day

I’m not doing well today. This morning I was not looking forward to work, but put myself through the motions. Best to get back into the routine, yes?

No. I Had a hard time thinking and concentrating today. Focus and memory were in and out. And I was disappointed that no one asked how I was. They know I was gone for 12 days, but nary a well-wish. I felt very lonely.

After work I ran errands to kill some time and stay active. And promptly began feeling more and more anxious and tearful. I reached out to understanding friends. I called my therapist. Still I feel alone and miserable. Thank goodness I’m not suicidal (yet?), but my antenna are up!

I just feel crappy inside and lonely and not adjusted to life outside. I want to feel better instead of accept that I feel bad and go on with life anyway (the Acceptance and Commitment Therapy way).

I hate feeling so terrible, miserable. I don’t have to like it to accept it.

No More Secrets

In an effort to keep my part-time job, and to keep things harmonious at work, I let my doctor and a friend explain the situation and my mental illnesses. Until they did, all I had told work – from the beginning – was that I had a brain disorder. I was open about this and shared the ways it affected my life: memory and finding words, concentration and focus, functioning well in relationships. All the things that bipolar, anxiety and OCD affect when I’m in a high-functioning phase of the illnesses. In a high-functioning phase, my mood is stable, my anxiety and OCD managed (not gone, but managed), and I can work and have healthier relationships.

Now, after nearly 2 months off work, I’m back at work. And as dreaded, we had the what-are-we-going-to-do-about-this-situation meeting. I knew that they knew my diagnoses now, including that my doctor said relapse is possible. In that meeting, I felt exposed. All my secrets of the last year and a half were laid bare. Yes, I had a brain disorder, and it is mental illness. They are one and the same. I felt more stigma that I was putting on myself than came from them, which is a huge testament to their conversations with my friend and my doctor and with each other before they talked with me.

I do feel they see me differently now. I still feel curiosity and questions unasked and unanswered in the air. I am unsure how much is – again – stigma I’m putting on myself, and how much is them treating me differently.

I feel shame. I tell myself I have nothing to be ashamed of, but I feel the shame nonetheless. It’s not that I didn’t feel shame before they knew. But the shame is on the surface now that my diagnoses are known by my work supervisors.

I had thought of work as a place where I was dabbling back in “the real world” or “the normal world” where I used to live. I desired to live in that world full-time again. Each time I’m hospitalized or go though crises that don’t end in hospitalizations I feel set back. The dream of full-time work and full-time me is put off. It’s the realization again that I’m on disability and it could still be awhile.

I can’t keep secrets from myself either, it seems.

ROUGH Night. Again

So, tonight I’m not highly, irrationally irritated as I was last night.

Tonight I’m triggered. I’ve got high anxiety and doing ok with not panicking. I could use someone who knows the whole story to talk to. But that’s not possible right now.

I am not happy in my outpatient program where everyone else is there for dual diagnosis – which means a mental illness of some kind plus chemical dependency of some sort. In the groups that means that conversations quickly turn toward how a person is dealing with life with, or trying without, alcohol or drugs. These are really good conversations to have. It’s just NOT the ones I need to be having. And, the therapeutic approach is one I’ve been in A LOT and which doesn’t work for me: change your thoughts, get happier feelings, make better decisions. That is a very reductionistic approach, but at the same time that’s what is happening so far.

THEN, as “part of the program,” everyone got a breathalyzer and a complicated pee test where they even turn the water off and put crystals in the water and a bunch of other things. Really??!! What part of never-tried-illicit-drugs-and-don’t-drink-alcohol do they not understand. I totally feel embarrassed and guilty of these things now that I have to go through random drug screenings too. I might feel better about it had I KNOWN that there could be random screenings, which helps others in the program.

** I did call my inpatient therapist and my outpatient therapist to see what I should do about being in this program.

The other thing setting me off tonight is seeing papers from a place I used to work three years ago. I was looking for social security papers, and I was pretty sure I had sorted through things so I wouldn’t run into the early papers. Apparently this was not the case. So, I got a nice jolt of regret and pain as I handled papers.

All of these things are contributing to an emotionally unstable evening.

This is getting old.