Just a Coincidence

21 07 2010

A bit of serendipity yesterday…..

Last year the Multiple Sclerosis Foundation (MSF) began a program of selecting “ambassadors” to act as eyes and ears and helping hands across the country.

(The MSF focuses on providing services to make life easier for multiple sclerosis patients and their families.  It’s  a fairly lean and mean organization. (You can interpret that as LOW OVERHEAD.)  Its national headquarters (in fact, its entire paid staff) is in Fort Lauderdale, Florida.  But they can find a home health aid to help a patient in Weaverville, NC or a construction team to build an entry ramp in Nucla, CO.)

Anyway, I was one of the original group of 10 ambassadors from across the country to help with such opportunities as providing information to neurology offices, starting support groups, focusing public attention on issues, etc.  And now it’s year two and a new group is coming on board.

As a means of introducing the old guard with the new team members, our humble leaders in the Sunshine State arranged a conference call for a high-tech “meet and greet.”  They use a service called Spiderphone.  (Each line is a “leg” and spiders have lots of legs.  Also, there’s that whole “web” analogy.)

Spiderphone always works well, and I’m constantly amazed how the service can not only provide a list on the screen of all the participants but can even figure out who’s talking at any point in time.  It makes me nervous that if I cough or my chair squeaks my name will be prominently displayed on everybody’s screen and I’ll henceforth be thought of as “the noisy one.”

So yesterday I was trying to sit very still and stifle a sneeze as I followed the back and forth of people introducing themselves.  And there on the screen, right under the Spiderphone logo, I saw a big ole’ spider having a leisurely afternoon stroll.

Okay, so not all serendipitous moments are particularly momentous.





The Doctor Is In

30 06 2010

Yesterday was my semi-annual (?) bi-annual (?) let’s go with “twice yearly” neurology appointment for multiple sclerosis.  The visit in a nutshell?

  1. The doctor asked how I was doing.  I said fine.
  2. The doctor read the sheet I filled out when I arrived for the appointment, on which I stated that I was having no problems.
  3. The doctor asked if I was having any MS issues.  I said no.
  4. The doctor said I was in good shape.

And how many years did he have to go to med school?

OK.  So maybe I’ve oversimplified.  Left out a few things.  Such as:

Sobriety testing. I walk in a straight line, touching my heel against my toe for each step.  Also, I close my eyes and touch my nose.

Pain tolerance study. Also known as “We have ways of making your talk.”  He drags a sharp object against the bottom of my bare feet to see if I cry out in agony.

Clown school curriculum. He hits various parts of my body with a rubber hammer.  One of these days I’m thinking that because of my uber-strong reflexes, I  might kick the guy (shades of the Three Stooges), but he’s pretty careful about standing back before he whacks.

Strength training. Like arm wrestling but for assorted muscles.  He pushes and I push back.  I’m thinking about enrolling in some intense boot camp training so I can amaze him by pushing back with super power force.

I guess I passed all the tests, because, as he said/I said, I’m in good shape.

(I’m actually very fond of my doctor.  Because he’s so nice whether things are going well or not.  And because he’s so knowledgeable when he needs to be.)

~~~~~~~~~~~~~~~~~~~

That is really just part one of my HEALTH ASSESSMENT which involves evaluating what a person can judge just by looking.  But that’s like seeing a nice, red, blemish-free apple.  Can you really say how the apple looks on the inside?

Hence, part two, the MRI of the brain and spine, which can reveal nasty white lesions, the hallmark of multiple sclerosis.  I haven’t had one in two years, since I changed my medicine.  Does that make it bi-annual?  Semi-annual?  Let’s just go with “once every two years.”  He suggested doing it in the fall.

Ideally, part one, the general assessment and part two, the MRI, both show that a person is doing well.  On the other hand, if they both say there’s trouble, well, that’s bad news but at least the two methods agree.

The ultimate frustration comes when a person knows he’s having symptoms but the MRI comes back clear.  People start looking at him like he don’t know what he’s talking about.  Like he’s full of hot air.  Like it’s all in his head.

It’s not a good thing.





OCD:Obviously Completely Dysfunctional?

25 06 2010

I don’t think it’s a big deal that I always put on my right shoe on first.  Or that I always floss starting at the upper right back.  Or that I always insert my left contact before my right.  I’d call those  habits, not examples of obsessive compulsive disorder.

But I exhibit a few behaviors that might raise eyebrows in the psychiatrist’s office….

When I buy eggs, I don’t just pick up a dozen and plop them in the cart.  I pick up a carton from the back, where it’s nice and cold, and also check to make sure I’m getting the most distant expiration date available.  And then I open the carton and eyeball each egg.  But even then, I’m not satisfied.  I have to touch EACH EGG to make sure it wiggles in the carton.  Why?  Because some time in the distant past I got home and discovered an egg that looked fine but was actually cracked on the bottom and, due to the dried leaking yolk, glued into its little compartment.  How much time have I spent over the years making sure THAT never happened again?!?

My three-month supply of Copaxone medication arrives in three boxes, each secure in its own plastic bag.  I open each bag, remove the box, and open the box.  One might think that seeing all the syringes lined up would be sufficient.  But no, it would be possible–would it not?–that underneath that top row of syringes I might find–I don’t know–string cheese.  So I dig down to the bottom of the box to verify all the shots are present and accounted for.

On more than one occasion I’ve been known to retrace my steps halfway across a parking lot.  While I pretend I need to get something out of the car that I’ve forgotten, in actuality I am checking to see if I’ve remembered to lock the car doors.  (My auto-clicker has long since died.  Actually that would be my automatic-automobile-clicker.  An auto-auto-clicker.)  And I don’t just check the driver’s door and leave it at that, I also check the back seat driver’s side and maybe even the trunk.  But no, I don’t walk around and yank on the passenger side doors also, though I’m tempted.  I trust my eyes.  If the door looks locked, it must be locked.

I am an aficionado of all things paper, and so with my various card stock, newsprint, posterboard, and stationery projects, I spend a fair amount of time with an X-acto knife.  I never studied the experts’ advice on how to sharpen one using a sharpening stone, so I developed my own technique.  First eight times on each side of the blade, the four times, then two, then one.  To vary from this proven technique would surely be courting disaster.

You be the judge.  Normal, if slightly eccentric, behavior?  Or is it time to call in the professionals?





Homer to the Rescue

2 06 2010

I attended a conference in DC last week at which I learned to be an advocate for multiple sclerosis on Capitol Hill.  We heard about how to package our message and then sat down with members of the House and Senate or their staffs and discussed bills before them that we feel strongly about.  I am writing an article about all this for an upcoming issue of MSFocus, the quarterly publication of the Multiple Sclerosis Foundation.  (Read old issues or subscribe to new ones here.)  In the course of penning this literary masterpiece, I decided a reference to the classic 1939 Jimmy Stewart movie, Mr. Smith Goes to Washington, was in order.

But I wasn’t sure if it was safe to assume the film was in fact part of our society’s shared culture.  I wondered if the average 20 to 40-year-old would know about it.  So I asked my 20-something son if he was familiar with the movie.  Oh yes, he immediately said.  But then he went on to elaborate.  His knowledge came from a spoof done on the Simpsons.  Further research indicates that Groening and crew parodied the film not once, but twice.

In ancient society the common lore was passed on through story telling around campfires.  Today we rely on the Simpsons.  Cartoons imitate movies imitate life.





Dressing to the Nines

31 05 2010

I suppose the decline of my wardrobe began when I left the corporate working world.  I didn’t just suddenly get rid of all my suits, skirts and dresses.  But I didn’t replace them when either.  Gradually my closet started looking like casual Friday.

However, as long as we were dressing up for church I maintained a few half-decent things to wear.  But eventually the dress code even there softened, and now if you attend the contemporary service no one will give you a second glance even if you wear blue jeans.  So my closet looks more like kick around the house Saturday.

When I was diagnosed with MS, in a fit of rage? self-pity?  hopelessness? I got rid of all my high heels and sleeveless shirts.  The shoes because while you might embarrassed falling down while wearing flats, you would feel even more stupid if you were prancing around in heels.  And the sleeveless garments because the red spots from the injections were making me crazy.

Over time I came to decide that the arm injections happen on Sundays and Thursdays, so with some planning there are plenty of days when I can go sleeveless and be spot free.  So tank tops and the like have worked their way back into my wardrobe.

No Thanks!

But I still avoid high heels.  Common sense and a desire for comfort have won out over fashion sense.

When I discovered LeSportsac pocketbooks, my choice in handbags took a swing away from fashion as well.  Those babies are so light weight you can suddenly think you’re not carrying anything, and look down in a panic, only to see it securely hanging from your shoulder.  I now own blue, beige, and gray ones; they’re all I carry.  They may not be trendy (and unfortunately they’re not cheap), but they’re great!

~~~~~~~~~~~~~~~

Last week I was rare position when business attire was called for.  And I was reminded how much effort goes into even a single outfit.  So many things to coordinate!  Slacks, dress or skirt?  Stockings have virtually disappeared so unless you’re prepared to go barelegged better stick to pants.  Color–bold or retiring?  Or a print?  Matching shoes, handbag and belt?  Jewelry selection?  Are you prepared for the heat of the outdoors and the chill in the air conditioning?  Will you be able to walk the distance?  Pass through security checkpoints without stripping?  How will you carry necessary documents?  I’m spent before I even get out the door.





Musings on Mail, Marketing, and Medicine

31 03 2010

So they’ve updated the way our dollars, our quarters, and our nickels look.  (Our change has changed!)  And now they’re doing away with Saturday mail delivery?  Is nothing sacred?

Speaking of the postal service….

I’m collecting the mail for my neighbors while they’re out-of-town.  I noticed that they get a lot more mail than I do.  And that the difference lies in the catalogs.  Yesterday the lady of the house got Ballard Designs, Pottery Barn, Linen Source and Casual Living.  Throw in an L.L. Bean and a Restoration Hardware and I could be entertained for quite a while.

I used to get catalogs.  I never “earned” them myself, but inherited them from the previous homeowners.  After a couple of years the companies started catching on that no one at this address was going to buy anything. No more catalogs.

Maybe I’ll take a peek at my neighbor’s and it will seem like old times.

Yesterday, in addition to the mailman’s delivery, I received my once-every-three-month delivery of  Copaxone, my MS drug, from the UPS guy.  These 90 pre-filled syringes come in three boxes which occupy a combined volume of 2.98 cubic feet.  But throw in the packing material and the delivery consisted of 24.65 cubic feet of volume.  The packers divided the injections between two shipping cartons, each had a styrofoam cooler inside and within these were 14 freezer packs.  If I could think of some practical use for all the coolers, freezer packs, and shipping cartons I would be in business.

When the UPS guy comes to my door with the medicine, I always consider that most what he delivers is either stuff people have ordered from catalogs (or now, the internet), or medicine.  And I wonder if he draws any conclusions, just by looking at me, about whether I’m a catalog person or an in-need-of-medicine person.





Choice Is Good

19 03 2010

If you can believe everything you read on the internet, March is Women’s History Month, National Frozen Food Month, and National Umbrella Month.

For those groups that wanted some commemoration but couldn’t work up enough enthusiasm for a full month, there is National Procrastination Week, March 1-7 (whoops, I guess we missed it, though I’m sure they wouldn’t mind if you celebrate it a few weeks late), American Chocolate Week, the third week of March, and Root Canal Awareness Week, March 28-April 3.

And for groups that decided to put all their energy into a single day, there is National Open an Umbrella Indoors Day, March 13 (perfect, since it’s also National Umbrella Month),  International Goof Off Day, March 22 (I hear they don’t have a lot of activities planned), and Weed Appreciation Day, March 28 (this year’s theme, “Salute the Lowly Dandelion”).

Ah, but my internet search has diverted me from my original point.  March is also National Multiple Sclerosis Awareness and Education Month.  (I think they figured if they had the longest title they’d get more attention.)  As a function of my affiliation with the Multiple Sclerosis Foundation, I have been tasked with providing informational brochures to doctors’ offices in the area who treat MS patients.

It’s been an interesting, eye-opening experience.

  1. The first office I visited was a large practice in a high rent medical building, lots of marble and wood in the halls. With any big practice I’m aware that it’s potentially the kind of place where I feel I’m being processed rather than treated.
  2. The second office I saw was in a much smaller, older building and had a single doctor on staff.  The sort of place where you can get to know the people, but you have to be careful that your doctor, who might be treating a zillion different neurological illnesses, is up to date on the latest in MS care.
  3. The third office wins the award for most amazing magazine collection in the waiting room. They must have had over a hundred magazines neatly arranged in a big ring around the edge of a circular coffee table.  Just like the men’s necktie display at Macy’s.  They were so closely overlapping that you couldn’t discern any of the titles, but I wouldn’t have dared pick a magazine up anyway, lest the OCD receptionist who set up the display have a cow.
  4. The fourth office was not a generic neurology practice, but focused solely on MS, and was clearly headed by a woman.  The waiting room was big, open, sunny.  Coffee, tea and cold drinks were available.  The receptionist was so friendly–I wouldn’t have been surprised to see her wearing a Miss Congeniality sash.  They had Gameboys for playing and movies for watching if you were there for the infusion center.   It was kind of like a place to hang out, to commune, to lounge, to share.  The whole thing said, “WELCOME.”  Take a load off.  Make yourself comfortable.  Have a chat with a compatriot.  I liked it.
  5. The fifth office was part of an HMO.  Like going to a mall for your health care, one stop shopping.  Visit your neurologist first thing in the morning, then down the hall for your mammogram,  up one flight to get that wart removed, and finish up with a root canal before you head home.  (Check with the dentist to see if you can get a discount on the root canal during Root Canal Awareness Week, March 28-April 3.)
  6. The sixth office…well I actually never found it.  I used the GPS and I used my own brain, the part that still works.  As best either of us could tell, the practice must have been located on the campus of large juvenile reform school.  And judging by the security patrolling the place, I wasn’t too keen on venturing forth.  So I gave that one a pass.

All this got me thinking about my own neurologist.  I’m crazy about him.  Even though he spends a lot of time on the road presenting at various symposiums, during my appointment, I feel like he is 100 percent focused on me and looking out for my best interest.  And I love the fact that there’s a nurse on staff dedicated to MS patients.  It’s a large practice, with some 13 doctors.  The downside is that the front office is about as friendly as a piece of toast.  And the parking at the facility ranges from bad to atrocious.  But as long as I’m happy with the medical care, I’ll tolerate a lot of the accompanying annoyances.

I read about people who hate their neurologist but are stuck because no others are available.  And about people who travel OUTRAGEOUS distances to their MS appointments.  Choice is good.  I consider myself lucky.