Tag Archives: myotonic dystrophy type 2

Awkward

Out of my head.
Got it.
Down, in some physical form.
Memory, accessed externally.
Rather than.

Solely residing in my head.
For, only a moment.
Before gone. Write thoughts, to make them.
Real.

Unless written, they remain etherial.
Essential, and missing. Unable, too.

Make points. Make jokes. Make sense.

Speaking, more primitive.
Than writing.

Stumbling, over faulty recall.
That next word. Spoken tokens, embedded in grammar.
Queued up, within the mind. Around each thought. Then.

One wanders off.
Lost again.
In the dark unconscious.
Too shy to be said.

These last few days, more than a week.

DSC_0303

I am in a writing world, largely motionless. No inspiration here. Instead, I have been occupying myself with little things.

Dishes, and floors and weeds.

My sister and nephew are coming on Friday. With a little daily work, the home can present well.

And, while I knock out each task, I re-arrange my thoughts.

Some more.

How to complete the book? What is stopping me, now?

These last few days, more than a week, I am outward looking. I have turned to re-arranging my physical world, and it’s a lesson on my latest state.

Every so often, two or three times per year, these last couple. My strength rebounds. And I tackle things I could only dream of, the week before.

In the yard, I am installing a garden, designed to feed me vegetables through summer. In Tempe, the challenge is the extreme heat, typically in the 117-119 Farenheits range, at peak. I am only planting warm-weather crops, with which I have enjoyed success in previous years.

Swiss chard is surprisingly stout under the summer sun. I have them, twice paired, with collard greens and hollyhocks, in one grouping.

In two others, I am planting okra, together with cantaloups, cucumbers and three squashes. Zucchini, acorn, and kabocha.

Since the vines typically wither by July on their own, they will hang out, this year, under a lady-finger shade.

I still intend to pick up a yam and a sweet potato from the grocery store. Cut some pieces, to sprout new vines, while eating the rest.

But, I’m unsure about something.

Is this latest bit of ambition temporary? Or, can I make it permanent? I decided last week to tackle the disorganization and dirt surrounding me. Get the dirt out of the house, and organize the it in the yard.

I broke it down to simple tasks, like watering, and digging. Watering is an easy, daily activity. Digging depends on energy, So I bounce between the couch and the garden, throughout the day.

Dig, then lay down. Then dig some more, followed by another rest.

Thank goodness, these past ten years, for all the done-digging. Keeping it loose and easy.

Well, the shovel-work and planting is now largely finished, until fall. Next, I can vacuum and sweep and mop. Tomorrow through Friday.

The strategy is working, but, will it remain stable when I go back to writing? Can I do all three, in some measure, each day? Can I write, and still find the mental energy to also take care of my surroundings?

Although I am dealing with muscles at low strength, this challenge seems more mental, than anything.

It should be doable.

What is life?

I want to share something.  But, I’m going through one of these myotonic-dystrophy episodes, where exertion brings on pain and.

Moving is exertion.  The days go by, and everything I write seems to suck.

My difficulty writing is part of my MD experience.  The highs, and lows, roughly follow my symptoms through the months.

So, this evening, I vaporized Sour Diesel.

Cannabis overcomes the inertia built into my symptom-cycle.

And Sour Diesel begs for music.

I fell asleep to Kaya.   Bob Marley’s ode to marijuana and rain.

 

My windows and doors are open.  A storm approaches from California.  Sometime tomorrow, we should have our first rain since November.

We are overcast with winter warmth.  My two cats, and the neighbor’s, are playing tag in the wind.

Throughout the yard and house.

 

I woke to the question.

What Is Life?

Black Uhuru asks.

 

 

Something about this song speaks to me.

The experience of life is framed by contrasting interpretations.

The positive and the negative are both constants.

The choice is where to focus.

A few, brief, thoughts.

I have been quiet the better part of a week.  Possibly, the best week of my life, in many ways.

Since my previous post, I have been in wheel-chair prescription-limbo.

It’s bizarre.  How strange our worlds?

Become, when insurance enters our lives.

It’s not my control.  It’s shared control.

In order to gain control, I have to learn how insurance companies think.  It’s what I imagine before.

The alien, suddenly, in my dreams.

And this has been possibly the best week of my life, because, for the rest of it, I have only been writing, and meditating on my manuscript. I am now in full book-writing mode.

Beam me up, Spock.

To a heavenly place.

Each day, when I begin to type.

Thoughts.  Not my own.

2014-01-06

=== 6:48 PM ===

XB

One of those days.  I wanted to call Windy Loo, my case manager, today.  Too tired.  I woke up and had a short morning before falling asleep for several hours on the couch.  I woke again this afternoon with pain coming on.

Funny, too, because yesterday I was beginning to notice how good my energy had been the past few days.  Enough energy to be planning my fight with The Demons of Insurance Underworld.

Pinch me, said my cliche.

I finally left the house sometime after 5 PM.  I first went to Harvest of Tempe for some new herb.  I bought two eighths.  One of Black Label Kush, and the other the ‘Platinum’ TrainWreck.

Then I went to Cheba Hut for a meal.  The lunch I never prepared, much less ate.  The dinner I won’t need to revisit later.  One of those days.

And now I’m in the mood to write.   Not sure if I’m journalling, or working up legal correspondence, or something for the blog or the book.

And, I’m thinking.  If I tell the insurance company about the five years of journals backing my case and my claims, are they going to want to see these things?

I’ll have to practice telling them to fuck off.  Calmly.  Confidently.

“Fuck off.  Are you going to honor the contract I have with you?  Or, do you want to be sued?  Those are your options.  You don’t get a look at my journals unless I have to sue you.”

There was a song playing while I ate my Humbolt and chips at Cheba Hut.  I asked the kids behind the counter.  Who is this?  Sounds like Bob Marley.  But, it can’t be.  This tune is contemporary.

Turns out it was Hey Baby, by Stephen Marley.  I think I may make that a CD purchase.  Do I purchase the CD now, confident I can win this case before my savings run out?  Or, do I hedge?

It’s true that everything contributes to the total sum of my expenses, but I don’t think I spend much on anything any more.  Food.  Periodic restocking of the herb stash.  Like today.  First time in a couple months.  The last purchase was November new, or the very tip of October’s tail.

I will look into the CD a bit more.  Listen first, to the song, again.  I’ll order it if I am confident it will keep.  Musical exploration helps me center myself.

Then, I’ll circle back to my case.  When I remind myself that my journals describe all the visits to doctors and hospitals to get an accurate diagnosis, and all of my sick days as I found myself able to do less and less, and the quality of my life the last few months of work, I have to think the evidence is golden.

Fear can be a bitch, though.  Why am I susceptible to fear today?  It seems related to my physical state.  Today I’m weak and in pain.  And fear of a legal wrestling match must be associated somehow with that.  Maybe one triggers the other?  Or, maybe they are similar in biological origin?

Or, perhaps they are mental.  Maybe being physically weak allows fear to take over.  If I were a small kid, I would certainly feel vulnerable facing a bully.  And, even though my weakness now is the strength of my case with the insurance company, it significantly subtracts from my motivation to pursue this.

But, I don’t have a choice.  I know I need to get on it.  First thing in the morning.  No excuses.

Today, though, I didn’t need an excuse until I woke this afternoon.  Exhausted.

And, one last thing.  It used to be when I journaled I felt comfortable during my introspection.  My thoughts are my own, I used to think.

Now, I just re-read today’s writing.  And my mental legal counsel saw the line, Not sure if I’m journalling, or working up legal correspondence, or something for the blog or the book.

Here is my legal disclaimer.  Those are my ambitions.  Those are not all the things I do each day.  Those are my choices.  How will I spend my writing today?  I only have enough energy for an hour or two.  It has to be worth my while.

And now, a message for the lawyers from the strength of my case.  If all I am able to write each day is an hour or two, how exactly am I supposed to go back to full-time work? 

Idiots.

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.