Tag Archives: myotonic dystrophy

2014-01-28

=== 4:36 PM ===

XB

Yeah!  I got the writing table at my favorite coffee shop.  So called, because many write.  Here, over all the other tables.

I should be writing my timeline.  I had discussed it with the guy who evaluated my functional capacity.  Today he reminded me.  My timeline will help fill out his evaluation.

My timeline from my journals.  I have five years.   In them I discuss all my experiences.  Once I realized.

Their value.

Journaling keeps me sane.  I have found.  It works best if I pour my soul.  Lavishly, on the page.

And, that’s what I did.  Starting before it ever occurred to me.  Maybe I should discuss what I notice with my doctor?  The notion was vague, that the state of ship was amiss.

They cover everything from my thoughts on life and death, to the detail of each day playing out.  The ones worth remembering.

When I started using my cane.  How I thought.  Still.  That it wouldn’t get too bad.

Too soon.  It got worse.  And I discussed everything, from why I plopped onto the couch and fell asleep, right after work, to the pain that woke me in the middle of the night.  What else to do when I can’t sleep, but write?

And these journals also describe the sick days I took.  They agree with my former employer’s records.  How I never took many sick days until the last two years.  And how they grew in frequency.  And why.

I also have to write a cover letter for the evaluation report.  To the bureaucrats of the insurancy.  I want to make myself perfectly clear.

Don’t contest this any further.  You will lose.  You have no valid arguments regarding my case.

That’s essentially what it is.  Right?  Will my case stand up in a court of law?  That’s gotta be how they evaluate each one.  If we drop him, with the evidence we have seen so far, will the lawyers win?

In a suit?

So, my cover-letter needs to detail all of the evidence I have.  Just to be perfectly clear.  They will not!

It was the insight that allowed me to stop worrying about the situation.  My weakness is the strength of my case.

I need to spell it out, in my own unique way.  Because I am not merely providing the insurancy my evidence.  I am telling them how to see it.  Without ever stating my intentions directly.

I want the power of language.  Spoken.  Honestly to paint.  A picture in their minds.

I want them to see it.  From my position, they lose.

In a court of law, they have no case.  They will see it.

When I crush their collective will.

This, I can tell you. It’s true.

 

It is difficult to determine.

Anymore.  Whether.

The things I think are true.

It probably has something.

To do with age, I see my grandmother.

In me.  Right now.   She walks, unsteadily.

With a cane, the folds of skin.

That once contained a plump woman.

Shaking.  With each step.

Around the arm.  Holding her stick.

It also might have something to do with my muscular dystrophy.

I have read that this form messes with the executive.

 Function.  Of the mind.

That seems to be my experience.

Oh, Word Location, you bedevil me.

But, it definitely seems.

Due to the many times.

In life, I have had to shift my thinking.

To which, of the many minds I have been?

Does this line belong?

I know I once believed this.

But, was that an illusion?

2014-01-23

A couple weeks ago I mentioned my problems with an insurance company.  This is the latest on the story.

I previously posted twice about the matter.  Here is the first.  And the second.

I rely on my disability policy from my last place of work.  I won’t name the insurance company, yet.  But, I will if it gets ugly.

They sent me a letter, two days before Christmas, telling me to go back to work.

You lazy bum!  I kept thinking the letter contained those exact words, as I read it again and again.

Yes.  I took it personal.  At first.  But, then, as I researched, I began to see.

Disability fraud is rampant.

For example.  In a couple counties bordering Kentucky and West Virginia, as much as 15% of the population receives some form of disability.  One lawyer handles most of the cases.  At 25%, this guy must be very rich, even after paying off a judge and some doctors.

My insurance company needed to know that I am not one of ‘them’.  So, as they paid my short-term disability claim, they also demanded a physical evaluation by my doctor.

But, my neurologist wouldn’t help me.  As a policy, he doesn’t provide help with disability claims.  His secretary was adamant.

I have heard hospitals and clinics commonly refuse to help with claims.  They must think it is outside the realm of medicine.  So I had to take my records back to my primary-care physician.

She had not seen me in almost two years.  I remember her smile as she asked, “What’s new?”

“Well, I have muscular dystrophy.  Here are my records from Mayo Clinic.  Will you help me?”

I saw her at least three times over the summer, as my insurance company kept hounding us.  They wanted more evidence.  Phone calls and letters.  Follow-up exams and forms.  I can see why some medical institutions won’t waste their time.

Evidently, they were never satisfied.  They were just biding their time until they could drop me.

We don’t believe you.  Go back to work.

I consulted with an attorney.  He was friendly and sympathetic.  Then we discussed fees.  He wanted 25% of the lifetime settlement!

I kept thinking, This is all I have left to survive on.  Why do you get 25%?  It’s a straightforward case.

I asked him how he thought his fee was moral.  He never answered directly.  Instead, he told me what other lawyers charge.

But, after some conversations with the insurance company, I learned what they wanted.

So, this past Monday I paid to have a functional capacity evaluation.

A functional capacity evaluation is typically performed by a physical trainer with special certifications.  A subject is put through a battery of physical examinations, as well as tests designed to simulate the type of work performed.  The evaluator summarizes his findings in an objective, legal-medical dialect of English.

In my case, there was an interview, and a review of medical records.  Followed by strength and agility exercises.  He pushed me to the point of failure, so he could to accurately describe what he was seeing.  He also took lots of photos.  As he escorted me out, afterwards, he told me what he saw, in the dialect spoken by insurance bureaucrats.

I try to see insurance professionals as people.  But, I had no sympathy for them on Monday.  By the end of the exam, I was weak and shaking.

About six hours after it began, I left for home.  Muscle spasms left me too tired to do anything.  I just tried to keep myself awake until bedtime.

Tuesday, I was still in too much pain.  But, yesterday, I started writing.  Today, I have enough energy for editing, but not much else.

I don’t, yet, know the final cost.  I will get the bill before I receive the report.  It will be somewhere between $1200 and $1600 for everything.

And, when I heard that, I thought, sure.  If that’s the cost for a report that will hold up in a court of law,  I will pay.

It’s also more palatable than what a lawyer would leave me to let me live on, in exchange for his services.

So I gladly antied-up for Monday’s torture.  I can afford the cost, both financial and physical.  And, after a week I can forget about it.

I made the decision a couple days after my second post on this matter.  And I spent the remaining time, until Monday, blissfully writing.  It was definitely worth it.

I enjoyed each productive day.  Essentially, I feel like I bought myself a two-week writing vacation.

A worry-free mind is priceless.  Especially when it is affordable.

I’m hoping this will be enough.  Common sense tells me it will be.

2014-01-14

A beautiful day in Tempe.

Desert sky.

Winter’s bright blue glare.

An easily love affair.

I will now observe a moment of silence. 

Shorts and a sweatshirt.  

A mid-January,  Arizona,  fortune.

...

I’m feeling better, too.

Rebound!

I haven’t published anything in over a week, although, I have been writing every day.

The effects of my MD are inversely related to my ability to think and operate lucidly.

On my bad days, I write.  But, personal therapy is not for sharing.

I write because I know.  I will feel better, again, soon.

And because yesterday’s experience will help me navigate today.

The benefit of daily of journaling is the mindful comparison of this effort to my previous.

And of this effort to my best.

What went well for me today?  What did not?

What did I do to contributed to the result?  And, what did I do to undermine myself?

Were my behaviors conducive to my goals?  Or was I a destructive influence on my own audition?

And, what lessons can I categorize into a general understanding?

An approach to life.

Going forward — should I shift my stance?

My biggest growth as a writer comes from my journal.  It is the playing field where I hone my craft.

As a child I spent many afternoons hitting pitches and throwing and catching balls.

I never thought of it as practice.  I was playing and improving.  They are one and the same in the presence of mind.

It’s a biologically programmed behavior.  Boys play without even realizing, someday soon, success might win the attention of a girl.

But, we don’t play because we want to be noticed.

And, when it’s not fun I am noticed for the wrong reasons.

Now I write, because swinging a bat while remaining on my feet is too difficult.

But.  Also.

Writing is fun.

However.

Fun, for me, is learning about myself, and preparing for success on a given day.

Because.

Success is not hit-or-miss.  Success comes from aiming, followed by a hit or a miss.

Then stepping back.

And assessing.

When I learned team sports, the coaches would always have us stretch and warm-up before practice.

But, on my own I learned that stretching was typically easier after the workout, with muscles already limber.  And the benefit of the stretch would last longer.  Typically deep into the following day.

I didn’t notice then that I would also use the stretching to meditate.

On what I did, and how I felt.  I was judging, during my cool-down, how I performed.

What went well, and what surprised me, if anything?

Now I am an older man.  And I realize the mental benefits of assessing each performance, from day-to-day, are better than the physical.

I would rather write badly today than not write at all.  I know that tomorrow will probably be better.

And if I do write badly, but identify a cause, I increase the probability.

Tomorrow will be better.

Because I am changing my game-plan as I speak, to handle better handle the contingencies and nuances of life.

I’m no good at that is the mindset of child.

I can get better at this is the mindset of an adult.

And my journal is where I observe myself growing.

2014-01-05

Last night I went to dinner three friends.  They were arguing that my belief, insurance companies are populated with human beings, is wrong.  And, I failed to ask them.  But I should.

Have they enjoyed their segment of conspiratorial thought?

How else could I justify my opinion?  I haven’t had any actual experiences to back up my belief.

Their voices swirled in my head as I lay myself to sleep.  I had become fearful.

Probably wasn’t thinking as much as feeling.   Subterranean embers still glowed deep beneath the cool of the evening crust.

Bad experiences remembered.  Insurance stories related.  Wrapped in a pleasant visit.

So, who’s crazy?  Me?  Or the three of them?  I guess we will see which of these two notions crystalizes in the coming weeks.

This is my first fearful experience with an insurance company.  Fearful, because my survival depends on it.  Or, at least, the quality it all.

And yet.  People do survive for a time in the gutter.  Who says I couldn’t?

Besides my common sense?

And which opinion is true?  The one based in fear?  Or the one built firmly on the calmness of knowing?

I am right.  This is an epistemology course for disabled people fighting insurance industry brutality.

Brutality? First person?

Present!  Because fighting this burns.  My daily allotment of fuel for focused mental energy has shrunk quite small.

Don’t know if my tiny budget for laser thinking is a brake on my mind, or my body, or both.  It could be any combination of the three.

Keep positive.  Gonna need it.

If my friends are right.  And because life is more enjoyable not dragging baggage everywhere.

Four and-a-half years ago I pulled a trailer of cargo on my bike to a writing retreat.

In Tucson.  End of May, the temps hover somewhere above that third digit.

One hundred miles.  One day.  That was easier then.

Because.  Retaining bad emotions exhaust me now.  Is this physical?  Or an enlightened state just before sleep?

Last night before sleep I was one.  Against three.  Both times in our thoughts.

The insurance industry and God.  Three believers and one form of dissent.  A good conversation.  And, an effective segue for next time.

God.

Well.  That’s it.  My budget spent.  I won’t work on my letter to the un-named insurance company.   Appealing their decision to stop paying my disability allowance.  Instead, I need.

Rest.

2013-12-27

=== 3:39 PM ===

XB

Big table near the piano.  Facing North.

The names have been changed to protect the innocent.

I went to the clinic in Scottsdale to renew my medical marijuana card.  Have to be approved by a physician.  In the past I have been seen by the blond woman.  She seemed to be doctorly.  Today I had a different guy.

He just didn’t look like a doctor.  Medical clothing aside, nothing about him said doctor.  His hair was slicked back.  His face said, ”Party hard.”  A tough outer crust acquired through experience and genetics.

He didn’t speak like a doctor, either.

When I was conferring with the receptionist before hand, she was saying that the approval would be based on when they get the latest records from Mayo Clinic.  But, while I was waiting to see the ‘doctor’, the receptionist calls out to me that the he  had approved my application based on what was on file.

As I figured they should.  My renewal shouldn’t be based on the last time I saw Dr. Strudel.  My last visit with him was just a basic neurological exam to see the changes over the course of six months.

As I sat down in his office, Dr. Gary-as-Guido Busey introduced himself and said he had reviewed my records.   He began asking me about the pain I experience.  So I told him about it.  Just enough.  And then he says something about fibromyalgia.  I was confused.  He thinks I have fibromyalgia.

No.  Fibromyalgia was an initial guess by neurologist #2.  Dr. Slicker had not read my records.  He had only glanced at the first page of notes from neurologist #2.  When I told him I had myotonic dystrophy, he wrote it on the form.  It seems that the fibromyalgia comment was just a hook on a bobber.  Testing the waters for an ancient fish known as correct information.  Who knows?  Maybe the guy can’t read.

Sitting down, almost the first thing from his mouth was that we shouldn’t be abusing our bodies with pharmaceuticals.  “Marijuana is much better for the the liver and the kidneys.”  I don’t disagree.  But, before we had gotten into the specifics of the condition that would warrant this medication, he was already hyping the drug that needs none.  My impression.  A pusher camouflaged in medical garb.

The consultation ended with some questions about my pain on a scale of 1 to 10.  I told him enough to help him understand a bit about the condition.  The extremes.  And a look at the average.

The visit ended when the doctor got up and came to my side.  Just when my hand was on his desk and the other gripped my cane, he stuck for a shake.

This has happened to me on several occasions now.  Time to shake hands, and I’m not allowed to first rise.  I don’t like that.  I feel I should stand to shake, especially if the other person is already on his feet.  Standing and thrusting a hand downwards, obstructing my attempt to get up, is disabling.  Next time it happens I need to remember to smile and excuse myself.  “Please allow me to first stand.”  A polite way to handle the situation.  And directly speaking to the awkwardness of the moment without making it personal.

=== 4:54 PM ===

Break.  Sudoku.  Unfinished.

The kids who work this coffee shop seem to take turns selecting music.  Sometimes it’s a satellite feed.  Others, it’s an mp3 collection.  Or a CD.  Right now it’s a song from the nineties.  But, a paragraph ago they were playing something new.  It was offbeat enough to catch my ear and make me listen.  Not the type of song I would keep.  But, fun in that previous moment.

It’s good to hear what other people like.  To share an experience.  Probably 20 to 30 people here.  Maybe closer to 40 with the smokers appropriating the patio.

We’re each engaged in separate behaviors.  Some are talking.  Others are reading.  Still others are writing.  And, in the background we are all hearing the same music.  We’re all feeling the same rhythm.  The brain taps signals to muscles for groovy songs.  Dance!  How many others feel the same compulsion?  How many others turn their ears and listen?

We can rule out the talkers.  Can’t talk and listen.  Mom told us that.  But.

Everyone else is suspect.

I said I wouldn’t keep the song.  And, I wouldn’t.  Because, experience tells me this one won’t keep.  It’s a good listen in the moment, but not to hear again and again.  A lot of songs in my collection are like that.  I bought them because once they sounded fresh and interesting.  And, I didn’t stop to ask, how will the tenth time play?  Will I be bored?

Consciousness is recalling choices in front of the evening fire.  After-effects.  Just recalling images from the day.

I guess I have an image of a song that won’t keep.  General enough to use against songs I have never heard before.  A sieve catches the impurities.  Leave me just the good ones.  Music to study again and again.  How tends my mood when I select this song?  And, am I drawn to the artist?

Stereotypes of faces and songs.  We all have them.  Are we paying attention as the stereotypes are employed?  We all use them.  But, behind every stereotype is an unique individual.

If Dr. Playground Pusher happens to read this, please consider my use of stereotypes a constructive form of criticism.

P.S.  I call him Dr. Strudel.  It’s a stereotype.  But, he’s quite the clinician.  The clues to the puzzle guide his thinking.  It is not intended as a disparaging term.