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.

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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.)

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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!

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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.





Being Patient for the Patient

24 05 2010

As I peered at my neighbors’ porch I noticed instead of a front door they had a large piece of scrap wood pushed up against the house.  I know my neighbors well enough so that I was quite confident that they would not board up their house and abandon it to whatever drug dealer might want to set up shop in our neighborhood.

So when I spotted the lady of the house outside, I flagged her down.  It turns out she had grown tired of looking at the weathered aspects of her front door, and took it down to re-sand and re-paint it.  But the re-painting took multiple coats.  And she stressed how important it was to let the paint dry COMPLETELY, lest you end up with red paint all over your weather-stripping, but not on the door.  About that time she decided that the dog scratches on the interior side of the door were intolerable, so they might as well flip it over and work on that.  Her husband applied the final coat on that side and she was unhappy with his handiwork…but she was getting tired of not having a front door…

It all sounded like a lesson in patience.  We have fast food.  We went from snail mail to e-mail to instant messaging.  You can get your hair cut or your oil changed without an appointment.  You can get your cable TV hooked up this afternoon and your dry cleaning will be ready tomorrow.

But if you’re lying in a hospital bed trying to recover from septic shock from a tick bite, everybody is just going to have to wait.  We wait in hospital rooms and waiting rooms.  We wait in traffic on the way to the hospital.  We wait for test results to come back identifying the infection as ehrlichiosis.  We wait to talk to the doctor or the nurse.  We wait for the sedative to take effect, and then we wait for it to wear off.

Patience isn’t just a virtue; it’s mandatory.





Old as the Hills or Spring Chicken?

16 04 2010

A friend has a college son who has struggled with a gastrointestinal issue for over a year.  Lots of pain, vomiting, exacerbated by stress.  He’s been in the hospital several times and has seen specialists at home and at school.

Finally the word came down.  He has ulcers.

(How it can be so hard to diagnose ulcers is beyond me.  But not my point.)

Here is this kid engaging in the classic study hard/party hard college mantra.  He’s cramming hard for a chemistry exam one minute, blowing off steam the next.

But he’s plagued by the disease we more often associate with balding, 50-year-old men.  Go figure.  (Maybe the age thing contributed to the diagnosis difficulty.)

My situation is the polar opposite.  When I first saw the doctor about the fluid in my ear and he prescribed Amoxicillin my reaction was, “the pink stuff I used to give me kids!”  Followed by, “you mean after 20 years this is still the best thing you’ve got going?”

Well, it didn’t work.  And neither did the Bactrin or the steroids.

So they cut a little slit in my ear drum to drain the fluid.   Which worked pretty well for about a week.

But when I went back for a check up this morning: more fluid.

So they cut the slit again but this time put a tube in.  Just like they do with toddlers who have ear infections.

I tried to pin the doctor down regarding what percentage of these things go to adults.  All he would say is that the “vast majority” are done with children.

If I have a young person’s ailment why do I feel so old?  In any case, with my newly inserted tube I’m happy to be hearing from both ears again.