Category Archives: Work

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.

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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.

Able to Work or Not?

So, with last month’s sudden hospitalizations…

I’m questioning whether I could even hold a job that wasn’t as flexible as the one I have now. While they were Not Happy to have me gone for 3 weeks so suddenly, no one died, the little bit of important work was picked up by very capable board members, and the non-important work was blown out of proportion for having been missed.

That said…

This was the first time I had to take time off for my mental illness. I was off for 3 weeks because of cancer surgery. The office knew weeks in advance that I was heading out, and had 2-3 weeks notice of the surgery date. However, my dr very much under-estimated the amount of time I’d need to be out. I’ve taken off 2 other days because of headaches from hell. One day because of an all-day dr appt downtown. All the little flexibilities or single days here and there, I have made up the hours. It’s not like I’ve left anyone high and dry. I schedule appointments outside my work hours. Most of the time I have to change my work schedule because the office wants me at a meeting or fundraiser that is in the evening.

This was the first time off that was sudden. First time for me to have to wonder very deeply whether I can work a job with a lot of structure, whether part time or full time. Is that an accommodation I can ask for? Do I ask for it up front?

I checked ADA (Americans with Disabilities Act) for info. First off, it applies for workplaces with 15 or more employees. So I’m SOL at my current place should that be needed. But in the future, do I ask for reasonable accommodation regarding the need for unpaid or paid medical leave, even with short/no notice? I suppose so. I don’t know that I can ask for that legally at my current place because of the employee number restriction, but also that the “reasonable accommodation” could be considered a hardship to the business. Debatable of course (considering the evidence of the 2 times I was gone for 3 weeks).

I hope one day to work full-time again, likely in non-profits or medical or some kind of justice, compassion, social-awareness field. I’m questioning that again. Maybe this goal will take longer until going into the hospital is an anomaly instead of something that could happen at any time, as the situation currently stands.

Interesting side-note, but relevant none-the-less, I’ve been flirting with the idea of being a CT technician. I learned a bit about the training process quite a while ago. Then this week I checked into the College of DuPage program here. Yeah, um, there is NO Way I can pass the physical exam required of all students. I will not be able to position patients and move heavy machinery into place. To be a CT Tech, you get trained as a radiologist (x-rays) first, then additional work afterwards for CT. Even though CT would be physically easier for me, I can’t get there if I can’t be a radiologist first. Disappointing!! I was looking forward to that kind of schooling and job!

So back to questions and wondering and depressing outlook on my possible work ability. What in the world am I supposed to do with my time if I can’t work??? (Ok, volunteer – less stressful and more flexible for medical crap I deal with) How am I supposed to pay the rent?? Who am I supposed to be if working isn’t even a small part of who I am and what I do?

SIGH.