Tuesday, August 28, 2012

The day Copaxone died....

To the tune of Don McLean's American Pie

A long long time ago
I can still remember how
That Copaxone used to stick in me.
And the Doc said it's your last chance
To get out of the MS trance
And maybe you'd be "normal" for a while.

So every night I'd dread and shiver
With each long needle I delivered
Find some fat to jab in
Don't bleed much on your skin

You won't believe how hard I pried
When the needle seemed quite stuck inside
And something said "Well, at least you tried.."
And then Copaxone died.

Bye bye to the Copaxone life
Brand new Neuro said "take zero" and just end that fool strife
I took his news and dashed home to my wife
Saying Cut the Teva cord  with this knife
Cut the Teva cord with this knife

Did you complete all the forms and tests
Are you diagnosed RRMS?
If your Neuro tells you so.
Do you believe they'll be a cure?
And the drug suppliers are so pure?
And have you got any spare Vitamin D?

Well I know that all those diets are fine
Though for most of us, just a waste of time
You said you lost ten pounds
But the MS is still around

I was PPMS, no mistake
But my first Neuro could not relate
So I just waited for the date,
the day Copaxone died.

I started singing:

[Last set of lyrics]

I met my Doc in his doctor blues, and I asked him if there was any news,
but he smiled and turned away.
We went and saw the MRI, and Doc explained the reason why,
And he just said the lesions were here to stay.
And in my brain the myelin died, the neurons stretched, and my memory fried,
But no cure or hope believing, so I guess I'll just be leaving.
And the ones that I admire most, who live in chairs and long sclerosed,
I raise my last needle in a toast
The day Copaxone died....

Thanks for reading, more to come...

Tuesday, August 21, 2012

It's My Car, See, and I'll Cry If Want to....

You would cry too if you'd gotten the bill.  First, say hello to my car:

This is a 2006 Saturn VUE that has over 100,000 miles on it, and that I just finished paying for in July of this year.  Naturally, the moment the check cleared - kathunk, kathunk, rattle and shimmy like a Shindig go go dancer (anyone of the 3-12 people that read these entries get that yet?), and having a difficult realizing when to stop.  Then last week the sensor on the seatbelt went kerfluey (technical term) so I could not get out of the driver's seat as the belt clamp would not release.  Should I shout for help while I curse myself for not keeping a sharp knife in the car just in case this happens?  Well, its only 95 degrees in the car, so maybe if I pour out enough sweat maybe I can slither down the seat, leave me t-shirt there as a sacrifice, and then crawl over to the passenger side and make my escape.  The fact that I'm in the Home Depot parking lot, and of course in a handicap parking spot, makes looking for help somewhat useless.

By the way,  I've got one of these:

on my car.  And while not all of the time, I do try and park in the handicapped slot.  First, can we please get rid of that "handicapped" name?  The Merriam Webster dictionary defines "handicap" as "a disadvantage that makes achievement unusually difficult."  Look, I got to Home Depot in upstate New York in August during the Saratoga track season.  I caused no accidents or incidents.  I cut no one off, nor acted like I've never seen traffic before, nor did I drive like a banshee (if banshees could drive) because I am testosterone and/or alcohol filled twenty something nincompoop.  Achievement unusually difficult?  Local police, I am the least of your worries.  I also woke up today, got dressed on my own, made my own meals, and worked in my yard.  I can also type, sort of.  And I took all my pills.  I should get a red carpet rolled out.  Handicapped spot? How about a "You're Special" spot?

But all you get are those funny looks.  What's wrong with that person?  OK, old people I can understand, but that guy looks fine.  I find that I will sometimes pull a Homer Simpson, and limp a little more than the pain/discomfort/nerve problems call for as I get out of the car.  Especially if I'm with my wife in her car and she pulls into one of the "You're special" slots.  I slough along a bit to demonstrate that, yes, we're in that spot because the guy who's limping and walking slow is "special".

I have days when I park  a distance away, and make the stroll, if its not a bad pain day.  And then I eye those people in the "special" slots.  How come they have those ones that hang off the rear view mirror? When they'd get that, 1997?  Special people slots are for special people. Now.

So no matter where I park the car, its still how I get around and I finally bit the bullet yesterday, and took it to a dealer and got the litany of what's wrong with it and then sat four hours while most of it was fixed.  It's running better now and while its not the fastest car, or the most comfortable, (it was actually purchased to help take my wheel chair [special] bound mother in law to various doctor appointments - no longer necessary) it did get me back and forth on my 50 mile a day round trip to work and home, with minimal problem.  Saturns were always good like that.  Too bad the idea flopped.

So its running well and when I got the bill, I was starting to get that drained feeling that MS people get every day if fatigue is a factor in their lives.  The gentleman behind the desk was kind, and could see that all he was talking about was like he was speaking in Russian about differential calculus, so I merely asked him "Look, I need that car to get to doctor's appointments, and I've got a lot of them.  Will it do it?"

He just nodded.  "Yeah, its got at least another 50 thousand in it."

Miles, I hope. Not dollars. 

By the way, the seatbelt still needs some work, but I can get in and out.  And I was able to pick up my new drug, actually an old one. Nuvigil in its generic form.  New psychiatrist as well, and it will be interesting to see how his vision version works out.  He wants me to be the best bipolar I can be.  As long as there are no guns around.  All I have are non-working Star Trek phasers, though I know if I push those buttons in the right order....

More later.  850 checkins. Deeply appreciated. 

Monday, August 13, 2012

DWMS (Dancing with MS)

We Martins are a partying lot, and dance like the Jacksons.  Mostly Andrew and Mahalia Jackson, but Jacksons nonetheless.  All seriousness aside, my parents could cut a rug back in the day, and my sister was pictured in her high school yearbook as a Shindig go-go dancer.  If you have no idea what a go-go dancer is, and certainly, no idea at all what Shindig is or was, find your local baby boomer.  We're the ones sitting in the mall drinking coffee (none of that Barstucks crap for me, buddy) in the food court and complaining.

One of my favorite memories of my siblings was them dancing at a wedding, I don't remember whose, and twisting the night away.  Soon my sister would be gone and the dancing would stop.

I'd have to carry on on my own.  Easy, of course, because, contrary to popular thought, Michael Jackson is not dead.

He lives on...

in me....

Okay, there's no video here of my fancy moves because, well, I'm not quite ready to show that yet.  Here's the story.  It was the union holiday party in 2009, and Jackie and I attended along with my staff. Normally I wouldn't attend these kind of things, because, well, maybe I just wanted to keep a distance between myself and other county workers, not that I felt better than them, but my world was just different.  Sit around and watch them drink? Listen to them complain about significant others? Kids? Significant others' kids?  Nah.  Okay, so maybe there was some superiority in there.

Until I started my unit and I became involved in the lives of these four women, my staff.  We were in our own world, separate from the actual agency, different address, and dealing with a specific group of clients.  As the months went by we got to know each other better, and since I was right on the floor with them, and not sitting in an office, I could hear the banter, the questions and concerns, and even when they needed each other to deal with a difficult situation.  I became more and more delighted with what I saw, and grew in respect for my staff and what they accomplished.  My kids.

So when the holiday party came up, they asked if Jackie and I would attend and we did.  The evening was fine and we toasted our success, ate and danced.  Naturally I hit the dance floor (I am a Martin, too) and dazzled the folks with my Michael Jackson moves to "Billie Jean".  Yep this plus fifty slightly chubby bald guy can moonwalk, crotch grab, flip his hat, and everything you see Michael do above.  Not near as well, of course.  But I hold my own.  So the crowd applauded, and were stunned that this guy who was all over the office, never said a word, but fixed your computer in two seconds, actually did other stuff.

I enjoyed the dance, and plopped down in my chair, and my legs went numb.  That was the real beginning of MS, the real thought that something was wrong, that I'd better get a doctor, and here I am two and half years later looking at this:

That's about as far as I got today, looking out my den window at the lawn and my tool shed because on Saturday, one of my staff got married, and we were invited to the wedding.  We did what you do at weddings, ate, drank, pictures and pictures, hugged old friends, told stories and laughed.  And danced.  The true celebrations of life.

I was out on the dance floor bouncing around to "Sweet Caroline" (Red Sox fans-if we have nothing else, we have that) and then heard "Billie Jean" begin.  My bipolar brain said "Do it again.  Go ahead.  I double dog dare you. Everyone will be looking at you and you can be the center of attention.  Manic time. Here we go."  The wiser but sadder MS part of the brain merely said "You can if you want, but you'll pay for it.  You know that."  The evil myelin eating monster merely growled like the Hulk and looked for more neurons to munch in my brain.

I said to my wife "This is where I came in." and headed for the door, and home.

But until I got off the dance floor, I moonwalked off, baby.  People gawked, but their faces were unfamiliar.  Most faces are now, but even the few who I still could recognize, clapped as we departed.

And I did pay for it.  Man, Sunday I was slower than a turtle on Prozac.  Sat and watched ball games, and the Olympics. Rallied for coffee, and then plop.  And Monday morning, see above picture.  I admit that its a nice scene, always cool and inviting even in the warmest weather.  And I did actually mow that lawn. No moonwalking.

The moral of the story is that you still need to dance, even if its only in your head.  I saw that old song-

and I hope you dance.

And that video of me is around someplace.  Right now its my turn to go to the mall and grumble with other middle aged dudes.

More to come soon.  Thank you, Johnny Pesky.  I hope you and Ted Williams are fishing someplace.

Saturday, August 11, 2012

How to take a nap.

The Big E.  Here in the Northeast, it's the state fair of Massachusetts and other New England states all combined in one large hoop-de-doo with big time country acts, food, food, food, and of course, food.  But that's not the Big E I'm talking about.  And both my MS brethren and sisters, and my BP'ers as well, know this one.  It's (all together now) Exhaustion.

Now this has been a fairly good week for yours truly with errands and projects keeping me rolling right along, until of course, about seven o'clock or so at night when everything starts to slow down on its own.  But by Thursday afternoon, after watching the ballgame on TV, I became aware of that odd feeling that maybe only those of us who have this/these two things(s) understand.  Everything in your body just wants to stop.   And you try to keep going, but eventually, even if you drink eight lattes in a row, once you get out of the bathroom and straighten up the living room 7, 8, or 9 times, you crash.

And, my fellow citizens, you end up like this:

And that's how I found myself on Thursday, but not in a suit.  When I was working, you might have seen this, but now picture this guy in a t-shirt and shorts.  Also I'm more of a legs together and arms at the sides kind of collapsing napper.  Your mileage may vary.  I just fell on the bed, assumed the  described position, boom, out for two hours. No turning.  No dreams. Flat out unconsciousness.  And you wake up feeling refreshed for about five or ten minutes and then that drab feeling, the Fog, comes over you and you wait until its time to go to bed.

I remember my first day of real retirement.  My wife left to go to her job on a cold January morning and I was seated on the couch, book in hand, tea cup warm, and classic music on.  All those years of hard work and now I was ready to -

be out of it for the next three hours.  I just closed my eyes for a second, I swear, and boom.  I had just gotten up, for God sakes, had breakfast and sat down.  What was that? I thought.  That won't happen again, I hope.  And it didn't until the next day. Two and a half hours. The doctors felt that I was still winding down from my job, and dealing with my MS diagnosis.  Earlier I had had the sleep apnea tests and the doctor there told me I did not have sleep apnea, but I was one of the exhausted people she'd ever met.  Which is better than being one of the most exhausting people, I guess.   

Being asleep means you don't bother anyone.  Unless you're in their spot.

Being asleep also means you are not dealing with anything at all.  Unless one you are not dealing with wakes you up and lets you know you are in their spot.  Like your dog.

Sometimes you have to make sacrifices.  So for me and many others, whether it is MS, BP, the results of drug interactions or side effects, Chronic Fatigue Syndrome, or whatever ailment, the naps come whether we want them or not and many times when we don't want them.  Like here:

This has literally happened to me when I've been writing this blog and other projects.  I'll look at the screen and feel my head go right down.  It's sort of like you're your own bobble head.  Bounce once, look up and around to see if anyone saw you (this is more a work thing - if you're fortunate enough to have a cubicle [in this case, at least], you can probably squirrel away for a few minutes), and now try to get back work, concentrate on the letters on screen, try to form an idea and then see the idea fade into a thought about last night's TV program (climb in the back with your head in the clouds and you're gone), and bounce, there goes your head again.  Latte time.  Walk around, talk to a co -worker, try to see if they're awake or wander around the cubicle farm until you find another poor soul doing the bobble dance, and when she wakes, give her that knowing nod.  Oh, yeah.  I see ya, sister.  You're secret is safe right here.

Now since I've been home, the little bobble head naps may extend for three or four minutes, and I can open my eyes and go right back to what I was doing.  I used to watch my father do the same thing when he'd watch television.  He'd laugh at Archie Bunker, bobble head, come back and keep laughing.  But he had something great to laugh at.

Now this version I don't like:

I love to read and have plowed through many books in my year and a half at home, much to my wife's consternation.  Not that she minds me reading, but I'm like the fellow here, reading a number of books at the same time, and the pile is pretty high.  Jackie just does not know where to put all the books.  I figure I've to keep the mind challenged as much as possible so whether its a book on MS, history, baseball, or following Captains Kirk and Picard on the USS Enterprise, there's always five or more books going at any one time.

The crappy part is when I'm enjoying a story or an interesting historical discussion, the brain decides, OK, that's all for now, thanks for reading, eyes shut, we gone!  Then I open my eyes and continue reading, trying to get the feeling of what's going on on the page, and then I'll a quick glance at the clock.  Wow, that half hour went fast and oh, crap....  OK, never mind.  Keep going or put the book down and do something around the house.

So in naming this little tome how to take a nap, in reality there is no "how to" to it.  It's just going to happen.  My only recommendation is that if you want to take napping to its proper heights, there's only one way to do it:

Oh, yeah.   I seeeeyaaaaaaaaaaaaaaaaaaaaaaaaaaaaakj ;jklg hu

Sorry I think I.....well you know.

Serious post thought: a tip of the cap to writer Lauren Hillebrand who suffers from chronic fatigue syndrome, but still was able to give the world two fabulous books: Seabiscuit and Unbroken.  

See, its not so much how much you nap, it's what you can do when you're not napping that's the challenge to this.

More soon. MS and driving. Thanks for reading!

Sunday, August 5, 2012

A tale of two stickies

Take a look at this picture:

On the left you see a very dilapidated golf club, a one iron of some ancient make probably used by the Morris clan (golf joke) and left in a garage sale.  The paint wasn't on there originally.  Just an added touch to being stuck in a garage by a guy who found that he could not play golf, but could hit a ball with a stick and follow it around.  I just didn't feel the need to pay some stranger for the use of their land to hit the little ball and follow it around privileges.

The club has a MS use though.  A few times a week I grab the club, stand in the grass, assume the position, and take a good swing.  If I remain standing, its a good day.  If I come down goofy or start to tumble, this is not a good day and I should be careful.  So while my one iron and its friends in the bag sitting in my garage may never see a golf course again, they do remind me of another day when I could freely play a sport I sucked at.

Now as for the stick in the middle of the photo, that's my new walking stick.  On Friday, Jackie and I went to the Southern Vermont Craft Fair in Manchester, Vermont.  This has been a tradition for many years and we'd stay at local B & Bs and go to the Craft Fair at the rolling lawns of Hildene, the former home of Robert Todd Lincoln and his family.  Highly recommended. Well, the bed and breakfasts closed.  And this year the Craft Fair moved to the other side of Manchester.  Ch-ch-ch-ch-changes, said Mr. Bowie.

Time to turn and face the strain.  The Craft Fair is in the midst of a field, a Vermont field, meaning rocks and little gullies and tiny holes, and if you have any problem with coordination, and I believe lots of MSers do, here was a challenge.  If I held my wife's hand I could move pretty well, going from booth to booth, but the moment she stopped to look at jewelry or whatever and I continued on my own, any quick turn or "excuse me" step out of the way might send me reeling into any booth anywhere, and I'd find myself staring at a piece of crockery that would only set me back three hundred bucks.  I'd mumble some excuse like "Astounding work. I must remind the Queen." and move along, find Jackie and head out.

We got a drink and hit the food tent where free samples were distributed.  My favorite was the rye whiskey (butterscotch in a paper shot cup).  When we left the food tent, we headed out to the tents off to themselves on the other side of the field.  There was the temporary abode of Debi Hitter, purveyor of custom made walking sticks (Eagle Scout sticks a specialty).  I ended up with one of the those sticks, and used it successfully to move around the craft with slightly more balance.  The stick also opens up new possibilities for career options:

1. Religious leader  (i.e. Moses) - see the staff in his right hand - by the way, the statue is in Washington Park in Albany NY, and this shot was taken during the Tulip Festival held each May.  Let's see, I might  ask my former employer to "let my people go", but they would, and then try and run the Department of Social Services with trained monkeys  (a lot easier to pass out bananas than support).  And where would I lead my people anyway? Across the street for lunch? The parking lot?
2. Robin Hood - there's that scene in every Robin Hood movie and parody from Mel Brooks to Daffy Duck where Robin and Little John parry with quarterstaffs, like this.  See maybe I could become the local Jedi Knight for the Luther Forest area.  There must be an opening somewhere.  I know my first enemy, the chipmunks in the back yard.  Not those:

but these:

I figure a swing or two with my new Jedi stick (I can make the noises) and those little buggers will head off into the Endor forests.

3. Join one of those German groups with the leiderhosen, and the sticks with the jingle bells on them, but I'd probably be asleep in my chair by the second song, so never mind.

I'll try to come up with other stick uses (open for suggestions).  Right now I'll use it on tough walking days.  It's better than a wheelchair.  It's a reminder that tough days may be ahead, but I can handle them in style.  The lady who made the stick is also interested in providing others to the MS group.

From the update pile: I've got appointments with both my new psychiatrist and neuro this month, and just need to step away from my old psych (who I noticed in the newspaper today didn't pay his taxes and got slapped by the Feds), and do my paperwork to transfer stuff. Best of luck to my old neuro as she moves to New Jersey.  I found that out through a meeting of the minds of the two people who showed up at the support group Thursday.  I could not have met a more gracious lady, and I hope the group works out.

As always, more to come....Thanks for reading... 750 hits.   I am honored.

Thursday, August 2, 2012

How to be manipulated by your doctor....

First, you need a big person.  Preferably one who has a medical degree.  I am fortunate that my primary  caredoctor (Dr. R.) is such a person.  Lady doctor. And a sweetie, but she was concerned about pain in my lower back area.  Now many folks have lower back pain, it comes from the stresses and strains (literally in some cases) of daily life.  What was of deeper concern was that the lesions had begun sending out their troops into my back area.  The spinal tap of a few years back showed the area to be lesion free, but things change with MS all the time.

So I arrived, checked in, did the usual paperwork and we got started...

It did take a while to figure out what was working once I was more or less down on the exam table.  She started manipulating various muscles, trying to ease my discomfort.  My response was mostly:this.

The work went on for a half hour and after that I felt like...

this guy...  Tight squeeze there.

I was pushed, pulled, crushed, reassembled, and then sent on my merry way with more exercises and a reminder to make my co-payment.

I was glad to oblige, seeing as we weren't looking at any more lesions, just the usual stuff of life.  Steps were taken on getting a new psychiatrist, and neurologist.

On to lunch, and then a walk around Troy.  In my dreams at night, sometimes I dream of downtown Troy, and its always 1966, and Peerless, Denby's, the Towne Shop, Paul's, and all the rest are still going concerns.  We meet at the movies, and then wait for the bus. So nice.  When Petula Clark sang about "Downtown", she meant Troy, I thought.  But then I'd never been anywhere else.  Who needed to?

A good day all around.  A little less pain (and toxins moving out), a nice meal, the Mets won, so it ain't worth complaining about.  And if you've read some of the back posts, you'll see that August 1 is not my favorite day, or wasn't.

Now its another day to be grateful for.  And I'll do some updates on a new support group for MS that is having its first meeting tonight.  Always, more to come......