Come, Lord Jesus!

It is one thing to make the affirmation that Jesus is the savior that came into our world, and who has promised to come again.

It is quite another thing to acknowledge that we need a savior.

Yesterday I wrote about how the demands of life can push to the periphery the issues surrounding mental illness.  Sometimes there is simply not enough time to dwell on how I feel.  Just do the next right thing.  Push onward.

Last night, I tried to go back to my old medication for sleep, as it is much more affordable.  Beginning at 12:30 am, I awoke.  From that point onward sleep came in fifteen to thirty minute intervals until I arose at 3 am.

Perhaps the ability to focus on our mental health issues, and the wherewithal to devote much time and resources to addressing them is a "dubious luxury of the well to do".  But then reality sets in and interrupts our efforts to simply ignore those issues, working through them, and hoping they will simply go away.  No, this is real.  And while I currently have less time to pause and reflect, that doesn't change the impact of the mental health issues on my life.  Argh.  "Wretched man that I am!  Who will rescue me from this body of death?"  (Romans 7:24)

I have been struggling with the changing circumstances of our finances and  the impact of that on my ability to continue my therapy and medications.  One hope is simply that the resources will be there that would enable me to continue my therapy without concern for finances.  Is the solution to seek out prescription drug assistance through the various channels out there?  Are our finances dire enough to qualify?  Or do I fall into the crack?  Too wealthy to qualify for assistance, but not well enough off to be able to afford the meds.  These are  tough questions with no easy answers.  I find myself driven to create a solution to this problem.  I can do it.  It's just about being resourceful enough.

And then, I remember something I've learned in AA.  Sometimes the only way to be set free from those things that would bind us is via the path of total and absolute surrender.  This is counter intuitive.  Every bone in my body wants to believe that if I simply try harder, don't give up or give in,  and seek to gain the upper hand, I'll get through this.

But no one has ever delivered themselves.  Unless one surrenders, unless one recognizes one's utter powerlessness in the face of insurmountable  challenges we simply will not be open to the savior that God is sending our way.  Throughout my career as a pastor I preached about the Savior.  The most difficult thing that I've ever had to do is to believe and to acknowledge that I need a Savior.  Lord, have mercy.

And "Come, Lord Jesus!"  "Come, Lord Jesus!" because I really need you.  Advent is about one thing more than anything else, if it is anything at all.  And that is that we need a Savior.  That we cannot do it ourselves.  That everything, finally, depends on God's gracious intervention.  "Come, Lord Jesus!"

Life intervenes

Since October 15, 2012 I have had the luxury of a generous disability plan that our Church offers.  It has provided me the opportunity to heal, in many ways, and to adapt in others.  My main job was to focus on my own mental health issues, taking advantage of the time to engage in extensive therapy.  I had the luxury of a steady income that paid the bills while I sought to develop a business that I believed would be my best option for getting off of disability.  I also had the luxury of a medical plan that paid for the various therapies, at a very reasonable cost to me.

Then came the notice that the disability benefits would terminate.  The business, Olsons WoodWorks, has yet to become profitable, at least to the extent that one could reasonably expect to rely on it to pay the bills.  And so, the question was forced upon me, "What now?"

One option that we immediately explored was to appeal the determination that I was no longer eligible for disability benefits, and we may yet go forward with that appeal.  Time will tell.  As part of that appeal process I needed to research jobs for which I might be qualified, and at which I could earn a reasonable income.  Since 2012 I have had my eyes on the market and in that time I found no openings for a woodworker.  Then, as I did the research, I discovered one.  And so I interviewed, was offered the job, and have gone to work.  The question of whether I appeal the decision on the disability claim will largely be determined by my ability to perform well in this new endeavor.

The schedule is, quite frankly, grueling.  Up at 4 am, on the road by 5, work a ten hour day, then return home by 5:30 pm.  I eat supper, watch a couple episodes of MASH reruns, and then crash in bed  only to repeat the same schedule the next day.  Thankfully, its only four days a week, and I still have the opportunity to be in my own shop over the weekend.

The routine makes it difficult to schedule appointments with either my psychologist or psychiatrist.  And the demands of a high production cabinet shop mean that during the day its all about simply cranking out the next piece of work.  No time for reflection.  And shear exhaustion has resulted in my sleeping better than I have in decades, to the point that I'm considering going off my sleep medication and seeing how that goes.

It raises a question for me.  Are mental health issues, or at least the ability to focus on them, a dubious luxury of the 'well to do'?  Conversely, are the rigors of a working class life simply so demanding as to push to the periphery any consideration of the mental health issues that one may have?

To an extent, this is not something new.  One of my primary defenses against being overwhelmed by depression has been to keep myself so busy as to simply work through it.  No time to think,  No time to 'feel' depressed.  And if the duties to which I devoted myself were routine and normal, then even as I cycled into more manic phases there was not the opportunity to engage in those activities that crossed the line.

In AA one of the principles is to do the 'next right thing', to live in the 'now', and to avoid at all cost either dwelling on the past, or worrying about the future.  Again I find myself wondering if our tendency to spend too much time ruminating about the past, or contemplating the future, is simply a luxury that many in our world cannot afford.  And perhaps the demands of a blue collar working schedule of getting up and putting one foot in front of the other, taking one task at a time, day after day, may be good medicine.

I wouldn't insure me, either. . .

The thing about health insurance is that is it not profitable to insure the sick.  A much more reasonable business plan for an insurance company is to convince all the healthy people in the world that insurance is necessary, and to deny coverage to the sick, and as a result, all of the clientele that you insure would have little need of the insurance and all those premiums would be profit.

But having said that, insuring someone like me just doesn't make sense for the insurance company.  After all, bipolar is an ongoing condition, its not just going away, and the costs can be high.  One of our concerns now that we are shopping for coverage is the cost of prescriptions.  Many of my meds are available at a very reasonable cost. But some are not.  One pill used to cost $30 a day, now reduced to $20 a day, because it has been released as a generic (still only one allowed manufacturer but they've offered a 'generic' alternative).  A second pill, used for sleeping, has been wonderful in that I'm now getting a full eight hours of sleep.  That one costs $10 a night.  Combined with the other meds that's over a thousand dollars a month just for prescriptions.

And then there is the therapy that I've been receiving.  I don't remember the exact amount, but the full bill for a visit with my psychologist is around $180 per session, double that to see the psychiatrist.  Of course the insurance carriers have negotiated step discounts.  But even then, a few visits to the psychologist and a once a month with the psychiatrist and we can add another $500 that has been covered by insurance.  Bottom line is that for an insurance company to make a profit on me, the premiums would have to be more than $1,500 a month.  We can't afford that.

So then, forced by economic uncertainty, I must explore other options.  This is what the insurance industry is trying to accomplish, and I guess, to a certain extent I can't blame them.  How much is a good night's sleep worth?  If you can get a so, so, night's sleep with a cheaper medication why spend over three hundred dollars a month to realize an improvement?  Likewise with the other medication.  Abilify is designed to increase the effectiveness of the anti-depressants I am on.  But does its effectiveness justify $600 a month?

When insurance is covering all of these meds, it is easy to simply assert that I need whatever medications that will be best for my health and the maintenance of a reasonably stable and normal state of being.  When its coming out of our own pockets, then we are forced to do a cost/benefit analysis.  And in the back of my mind is the recognition that in spite of the temptation, the cardinal sin of being bipolar is going off of medications that are stabilizing one's mood.

And then there are other inappropriate thoughts.  My alcoholic mind says "I was doing just fine relying on Scotch, and for a lot less than $1,000 a month."  Actually, a thousand dollars a month would buy some very good Scotch.

The other thought that comes to mind, more reasonable than Scotch, is running to Canada.  This is the second time this  has come up.  Moving there is not really an option.  But I know that others in the past have gotten a physician in Canada to prescribe the meds, and then purchased them at a Canadian pharmacy for a fraction of the cost in the States.  I don't know if this is legal anymore.  But with Canada only 50 miles away, it is a thought that comes to mind.  I could drive to Creston, BC for less than $1,000 a month.

Oh well, things will work out.

In the mean time, it is Thanksgiving, family is coming, and I'm looking forward to the day with meds that will last a week before yet another decision will have to be made.

Capitalism, Health Care, and the Mentally Ill

Sometimes we hear about the struggles of health care in the USA.  At other times we experience it.  Our health care system is driven by profitability, even when the providers are not for profit.

In my situation, the reality has hit home hard.

I was informed that my disability benefits were being terminated.  We are considering an appeal.  Time will tell.  However, in the mean time, our family's health benefits which had been provided through the disability benefits were also terminated.  We received this notification approximately ten days AFTER they had ceased.  Which of course was more than a bit disconcerting.

We are eligible for COBRA.  The quoted price for COBRA was $2,666/month for the family or $860 each for my wife and I.  Having just lost the income from disability, needless to say, coming up with that kind of cash for health insurance simply wasn't possible.

We are fortunate.  My wife can get insurance through her employment.  Her's is largely paid for by the employer, mine costs a significant amount, though only a fraction of what COBRA would have cost.  I thought, "One hurdle crossed."

Well, not quite.

When I went to pick up my prescriptions this week Regence rejected the claim for  two of my meds resulting in my having to purchase a ten day supply at a cost of over $350.  My physician will have to make the case for those meds being covered, but even then, because they are not yet available in generic forms, there will be a $500 deductible for both this year and then of course, beginning next year.  OK, we'll see how this works out.

Then I went to my psychologist.  Gave them my new insurance number.  Rude awakening.  No mental health benefits.  No coverage for the psychologist.  No coverage for seeing the psychiatrist.  Still waiting to see if this means no coverage for the medications that I am receiving for bipolar disorder.

The bottom line is that we will have to be shopping the insurance exchange.  Don't know if we will be successful or whether the coverage that we need will be simply too expensive.

Other options are to have my family practice doctor take over the prescriptions.  My psychologist offered to try and work out an affordable fee structure.

The question with which we must struggle is whether I can continue the treatment I need at a cost I can afford, and what happens if the answer to either of those is "No."

The bottom line, is that when we structure our health care system on the basis of capitalism, it will always be in the best interest of the insurance industry to find ways to deny coverage to those most need it, because it is much more profitable to insure healthy people than sick people.  At the same time physicians must charge enough for their business to be profitable, which makes paying cash for their services unattainable for those who most need it.

I wonder if there is a need for a good woodworker in Canada?

'twixt Hope and Despair

Dare to believe.  Sounds like a good motto.  And yet there is a need to reconcile what is in our head with the reality of life that we encounter.  Hope springs eternal, despair comes with the night.  As a person of faith I am drawn toward a life of hope.  For good reason.  The moments of grace that have come into my life as pure surprise are many.  From my mother's womb you have cared for me, O God!  We know so little about the future that to surrender to our fears is simply not called for.  How many times have seemingly insurmountable odds been overcome by God's grace?  Too many to count.

And yet at times the painful reality of life also sets in.  To assert, as a matter of faith, that suffering will not overcome us can seem naive.  Truth speaks of suffering far too often.  Sometimes the news is not good.  Poverty is real.  Fears sometimes are realized.

As a pastor, thinking back over all the words of comfort I tried to offer, the words I most regret were "We fear the worst, and it almost never happens."  These words I spoke to a young man who was getting tested for a weakness that had developed in one leg.  A couple of months later he was dead, the result of a super aggressive brain tumor.  Evil happens.  It doesn't ALWAYS work out.

Fear exists only in our minds.  But I suppose we could say the same for hope.  The struggle I'm faced with today is how to negotiate the  uncertainties of the future when that natural presence of fear and hope is coupled with being bipolar.

I once bluntly declared, "God flunked chemistry!"  It was my reaction to the delicate chemical balance that has to be present in our brain, but all too often isn't.  Of course, we're not too good at chemistry either, otherwise we could easily restore the brain chemistry to a healthy balance and mental illness would evaporate.

For one who is bipolar, sometimes mania masquerades as hope.  We can solve the problem of world hunger through hydroponic gardening.  Everyone self sufficient for their own food.  That was the deep conviction of one who was bipolar.  During one manic episode I became convinced that the entire Church could be transformed by adopting the twelve step model of AA.  The Kingdom of God is at hand.  And all we needed to do was to reclaim in a powerful way the rite of confession and forgiveness practiced in church basements across the country by alcoholics in recovery.  Hope springs eternal.  Either that, or mania has set in.

And then there are our fears, and the despair that often accompanies them.  Sometimes we are afraid because there are some very real threats out there.  And then there are also those times when the darkness that comes over the world is not real.  Its not that 'hordes of devils fill the land', its simply that the chemistry of our brains is off balance, and we are in a depressed episode.  Hang on for a while.  It will be alright.

When is hope a gift of God's grace?  And when is it simply a matter of the unbridled optimism of a manic state?  When is fear a healthy survival tool amid life's real threats?  And when is it simply the result of brain chemistry run amok?

No answers today.  Just a commitment to trudge onward in the midst of it all.

Catch 22

"You mean there's a catch?"
"Sure there's a catch", Doc Daneeka replied.  "Catch-22.  Anyone who wants to get out of combat duty isn't really crazy."
There was only one catch and that was Catch-22, which specified that a concern for one's own safety in the face of dangers that were real and immediate was the process of a rational mind.  Orr was crazy and could be grounded.  All he had to do was ask; and as soon as he did, he would no longer be crazy and would have to fly more missions.  ("Catch-22 (logic), Wikipedia)

I love that.  Twisted logic.  It's fun until you are faced with it.

As I look at appealing the insurance carrier's denial of my disability benefits I was reminded of the "Catch-22" that is often at play.

If someone has a mental illness that results in a disability then they are entitled to disability benefits.  If denied, they have the right to appeal the decision.  However, if they are capable of appealing the decision they demonstrate that they are not disabled.  Catch-22.

Or to put it differently, appealing the decision of the insurance company to deny disability is an overwhelming task.  The more disabled, the more overwhelming the thought of formulating an appeal.  Hence, the least likely to be able to appeal the decision are the one's who most need it to be overturned.  Makes sense, doesn't it?

I wish it were that simple.

If at any point in time a bipolar person experienced either a full blown manic episode or a deep depression, it would be easier to diagnose.  In my experience it has simply not been that distinctly polar, or black and white.  Some of the most helpful insights into bipolar that I have found are from a Doctor Jim Phelps, online at PsychEducation.org .   I cannot vouch for his standing in the psychiatric community, and there appears to be many differing opinions about bipolar within the psychiatric community.  But as I review my own experience, there is much that resonates with what he has to offer.

One of the most helpful things that he has identified surrounds the different waves that people with bipolar experience.  The basics are as follows:

One's symptoms are controlled by three separate 'waves', and each can cycle independently of the others.  Those distinct waves are mood, energy, and intellect.  In a classic manic phase all three waves top out with elevated mood, increased energy, and heightened ability to think, create, and pull everything together.  When all three bottom out with a dark mood, decreased energy, and clouded thought patterns you have a major depression.

But those waves do not cycle simultaneously.  For example, if the energy curve is up, but the others are down, the person experiences an "agitated depression".

It is also the case that many bipolar people experience a "mixed state" where they may experience a variety of symptoms that cross over the spectrum from manic to depressed.

Now to the crux of the issue as to my current situation of being evaluated, tested, and having the insurance company determine whether I am 'disabled'.  What is most irritating is that often in this process they want to make an evaluation on the basis of a snap shot. "How are you feeling today!"  Ok, well, today I might feel mildly depressed, or generally normal, or ready to take on the world, or in the fits of despair.  Depends on the day.  Someone who is bipolar cycles back and forth between manic and depressed states, and much of the time in between those extremes one may feel relatively normal, healthy, and functional.

"How do you feel today?"  "Fine."  "Then you should not be on disability and need to get back to work."  OK, but last week I might have been having suicidal ideations and next week I may be ready to save the world.  You cannot make a comprehensive diagnosis based on anyone of those states without considering the others.  Bipolar is a spectrum of experiences, not a unified state of being.  That's one of my major problems with the insurance companies that want to evaluate my situation based on the observations of a psychiatrist who has only seen me for one appointment.

My mother used to quote an old adage, "if you don't like the weather in Montana, wait five minutes and it will change."  That applies to being bipolar.

http://psycheducation.org/diagnosis/mixed-states/rapid-cycling-and-mixed-states-as-waves/

Testing, 1,2,3, Testing

The insurance company that handles our disability benefits did not like it when my psychiatrist told them that my Type I Bipolar diagnosis was a permanent disability that significantly impaired my ability to work.  They terminated the benefits effective the last day of October, and with that my medical insurance.  What lies ahead is the appeal process that can extend over 90 days.  Meanwhile we are without the income that we have been relying on.

"This is a test of the emergency broadcasting system.  Were this a real crisis you would be told what to do."  I think that is what the original announcement used to say after the obnoxious beeps.  At least with the emergency broadcast system there is a promise that you would be told what to do.

This is an interesting test in that the crisis brings everything I deal with to the fore.  PTSD is active and alive -- fully expecting to be screwed big time by the Church I have served.  Note to insurance company, "if you are going to cancel our health insurance it would be appreciated that we have some advanced notice. . ."

I find myself torn between the couch, and sitting and smoking away the day on the porch.  Amazingly, I've started sleeping in excess of 8 hours a night.  Insomnia has always been a problem.  Excessive sleep is a symptom of depression.  I find myself mired down in the fear of loosing everything we have, everything we've worked for, and every hope for the future.  Depression is a cruel companion.

And then the manic thoughts start raging.  Explore every option.  I built Luther Park and created the jobs for 70 plus people in this community,  I can do the same now for me.  Invest in a more viable business.  Convince an employer that I could do anything they ask of me, just a little orientation required.  Buy and flip homes.  Re-enter the ministry.  Damn right I can do something, in fact, given a chance I can do anything.

And then the shaking resumes from the partial complex seizures.

The basic reasoning of the insurance company is that I'm not reported to have any significant cognitive or physical disability.  (My psychologist recommended I become a Republican and run for president.  His assessment, I think, was that I'm more qualified and capable than the current candidates. . .)  I will have to prove through the appeal process that though Bipolar disorder and PTSD do not constitute a "physical", or "cognitive" disability, but due to the nature of mental illness they are disabling none the less.

And then, simultaneously, I need to explore possibilities of what I can do to care for our family as I am able.  In some ways this fits right into the nature of the bipolar disease.  The depressed side is ready to make the case that there is simply nothing that I can do.  The manic side is convinced that there is nothing that I cannot do.  Competing voices raging within.

I'm exploring with my bishop what ministry options there might be for me.  I felt the need to do "full disclosure".  "That said, the most damaging potential of my being in ministry would be if during a manic phase I did engage in inappropriate sexual behavior.  Obviously, I have no intent of doing that, but in that a manic and hypomanic episodes involve "distinct change in mood and functioning that is not characteristic of you," we have to acknowledge the risks".  Such are the risks associated with this disease.  There are significant risks of legal liability if the Church, knowing that I am bipolar, and knowing that "sexual indiscretions" are one of the defining symptoms of the disease, were to put me back in the parish.  Maybe not insurmountable.  But significant.  Of course, knowing the symptoms of the disease I wonder what employment is possible given the risks.  That I suppose is the question.

I'm told that this is standard procedure for insurance companies.  They will deny the claim simply to make you prove your case.  They hope, of course, that many simply won't have the will or the means to appeal the decision.  I am fortunate to have a family helping me.  Meanwhile the test goes on.

It is what it is

It was only two words, and yet hearing them had a profound emotional effect on me.  This, in spite of the fact that it really wasn't anything earth shattering or new.

"Permanently Disabled."

Those were the words of my psychiatrist in communication with the insurance company managing my disability claim.  We will see how the insurance company responds.  Hearing those words brought mixed emotions to me.

In my communications with the insurance company they have always taken the role of the eternal optimist.  "Are you improving?"  "Are you better now?"  "We want to get you back to work."  Well, of course they do.  The sooner I am able to return to work, the sooner they can quit paying the disability benefits.  And for the record, I would enjoy being actively engaged once again in full time work and making an adequate wage and benefits to support our family.  There is honor in that.  Not to say that it is dishonorable to be on disability.  But being on disability does not produce in me a feeling of well being and high self esteem.

Part of my mixed reaction to those words "permanently disabled" is related to the nature of being bipolar.  When I'm feeling depressed it is difficult to accomplish anything.  When I'm experiencing life from the hypo-manic side of the cycle I can envision no limitations.  At those times, not only do I feel that I can work again, but my sense is that I could do most any job if I just was given the chance.  I want to say to the insurance company "Yes, I can return to work.  Give me a job.  Insurance claims adjuster.  Sure, I can do that."  Or I envision returning to ministry.  No problem.  I could be bishop.  Or Presiding Bishop, for that matter.  And returning to parish ministry would be as easy as riding a bike again.  Been there, done that, lets go.

That's when I hear a resounding "Whoa, cowboy!" from my medical team.  Ir is disconcerting to have my doctors rein me in when I'm ready to run, and then also, to have them prod me on, when I'd like to just lay down.  Sometimes there just doesn't seem to be a happy medium.

Which is the nature of being bipolar.  And that is not going to change.

In general, people who feel depressed will come to a point where the depression has run its course, and they return to feeling normal.  Being bipolar means that one will continually cycle, feeling depressed at some points, and supercharged at other times.  You don't just 'get well'.

Which brings me back to the label "permanently disabled".  On the one hand, it would bring a lot of peace and easing of anxiety if people, like the insurance company, could just settle in to the reality that being bipolar is a permanent, not temporary, condition.  On the other hand, accepting those words "permanently disabled" is to surrender hope.  Its accepting that the question is not whether one will be "well", but how well one is "managing" with the disease.

One final thought.  Part of my struggle with all this is that I simply do not know.  I do not know what remains possible and advisable for me, and I do not know what the limitations really are.  There are significant risks for me if I were to try and re-enter parish ministry.  There are significant risks for a congregation or other employer who would give me the opportunity.  There is a need to protect me from the congregation, and protect the congregation from me.  Yes, I could try to return to parish ministry, but who pays the cost if I crash and burn.  That finally, is the question that will not go away.