Tag Archives: myasthenia gravis

I’m Late! I’m Late! For Every Important Date!

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How did it happen?   How did I go from being early, to being merely on-time, to being now firmly ensconced in the group known as the always-and-hopelessly late?  Although not quite always, as I was on time for my wedding day.  This successful grand effort took preparation.  I went in advance to the courthouse to check out where we should park, and timed how long the drive from our house would take, so as to arrive in a timely manner.  All my efforts paid off; the wedding ceremony went off without hitch, and left us hitched as a result.

As I was growing up, my mother was a stickler for punctuality.  It probably came from her time spent serving our country in Army Intelligence during WWII.  She talked about her punctuality to the point of excess.  As she waited for others, I could hear her sigh heavily and repeat, “I am always on time.  I hate it when other people make me late.”  You did not want to keep my mother waiting, because doing so unleashed her wrath and a lecture on the importance of punctuality in all things.

My brother on the other hand was always notoriously late for everything.  During his high school years, the bus stop was across the street at the elementary school.  My mother could see the bus arriving, after which it turned right, loaded the on-time-and-waiting students, and did a turnaround at the top of the hill.  This gave my brother five minutes to dress, grab his books, comb his hair and run out the door, to be picked up at the corner.  I don’t think he ever missed the bus or school for that matter. He showered at night and didn’t need his morning caffeine as he does now.  This drove our mother into a complete frenzy.

“He is going to miss the bus.  I am going to talk to his father about this again.  Why does he put me through this every morning?  Where is he?  Is he ready?”

I would stand in the hallway upstairs and yell out updates.  “He is on his way.  He has his books.  Okay, open the door!”

After he went on to college and I started school, I promised myself and mother that I would always be on time.  I succeeded.  I was ready early and waiting for the bus across the street.  When it was time for me to drive to school, I left early.  During my career days, I was on time for everything.  I never missed a business or personal airline flight.  For every appointment I arrived early and read my book patiently.  Once when my notoriously tardy brother and I were traveling in France, I saved us from missing our flight home by dragging him to the airport early.  He was yelling at me about how I always have to be everywhere early just like our mother.  However, when we arrived at Charles de Gualle airport, we discovered it was Daylight Savings.  Thanks to me, we were still on time.

Now that I have Myasthenia, I take several medications in the morning to get my neuromuscular junctions fired up.  I also require caffeine, not for medical reasons, but for pep.  As I had to adjust to life without a career, my motivation for being on time waned.  Then you factor in that I now have a dog, a husband and frequently his daughter and it is a recipe for tardiness.  It also doesn’t help that my husband is late for everything except work.  Even for work, it is a mad dash out the door.  Nothing like my brother, but he just makes it.  I was late for our first date, but he was later.  After we discovered that both of us were always late, the pressure was off and we were both typically late.  He will never be waiting for me and vice versa.  Life is good except…

I keep my friends, some of whom are like my mother, waiting at least 15 minutes.  I am at least 10, 15 or 30 minutes late for all physician appointments.  They do not seem to mind and figure out a way to squeeze me in.  Except for my tardiness I am a compliant, funny and responsible patient.  We all have our faults right?  I try not to be late for massage therapy.  Balance Therapy is right down the street from my house, so if I am 10 minutes late, it is 10 fewer minutes of wonderful therapy for me.  I accept the consequences.  I am not an angry late person who blames others.  Though sometimes I did blame my late dog Pumpkin who took forever to find just the right spot to do her business.   Sometimes I was convinced she was stalling just to keep me around longer.

So the other day I was quite surprised when the Nurse Manager at the Pheresis Clinic pulled me aside to lecture me about my tardiness.  A nurse had gotten his or her scrubs in a wad and complained to him.  He tried to motivate me by using the respect issue.  “You’re not late for your neurology appointments, are you?”  Of course I told him I was and that I was basically late for everything, which typically had a snowball effect throughout my day.

“Am I keeping patients waiting?”  I asked, knowing the answer.  It is a clinic with open beds and in the afternoon there are six nurses and usually three patients.  No one ever has to wait,  it is by bed and appointment.

“No.”

“Am I causing staff to stay late or causing you to pay them overtime?”

“No, however, just make an effort to be on time for your appointment.”

“Okay.”

Why they are suddenly focusing on this particular topic with me now, I do not know.  I have been coming late for years.  Is it an attempt to improve my punctuality?  Do they fear it will just get worse?  Did one of the nurses have an outburst and want to control my behavior?  I do not know, but I was 30 minutes late for my pheresis run today and not one comment of displeasure was directed my way.  When I left there was still another patient being treated, so I was not keeping them.  I will try to be on time as they requested only because they have provided great care over the years.  I have very little control over many things and there are days when I wish for more control over my body.  It does things that take me by surprise still.  Being 30 minutes late after his talk with me was my way to take back control over a situation.  I could have been on time today, but I took a few extra minutes to enjoy the cold air and sunshine with my dog as opposed to being hooked up to a machine, immobile and uncomfortable for 80 minutes.  When you have to do that every three weeks then talk with me about my tardiness, until then I will see you, but I will be a few or five or ten or fifteen minutes late.  I hope you understand.

Are you on time, early or chronically late?  How does it impact your life?

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I married a gray haired teenager.

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In my twenties it was well known that I had a penchant for younger men.  They were all I was meeting at the time through my work managing fine dining restaurants.  Of course I could not be labeled a cougar as I was only four or five years older than the guys and thankfully that label did not exist then.  Why is it that society cannot wait to label women?  Is it yet another attempt to demean us and keep us in line through an embarrassing name and context?  A cougar implies a woman on the hunt for her prey, an innocent young man for her to conquer and kill.  How about a label for the men who have for years sought the company of younger women?  Their’s is the word letch, but you don’t hear it used very often and you don’t hear men calling other men letches.  Also the definition of letch is a sexual desire or craving; in my opinion, a much more flattering reference than cougar.   Even in the older man younger woman scenario, many times society again allows the man to be the victim.  Well, she (younger woman) went after him and tried or did break up the marriage.  Remember Monica Lewinsky? Why are women many times the first to place such labels and participate in this sort of gossip about each other?

Fast forward, on my road to becoming a real housewife, I dated men who were either my age or a few years older.  My current husband is three years older than I.  But herein as they say lies the rub.  He looks ten years younger.  How do I know this for certain, you ask?  Well, I have a photo of us above my desk at work and have several times been asked the following question:  “Kay, is that your son in the photo?”  Each time the innocent question sends chills through me.  I gather my composure and politely respond, “No, that is my husband and he is fifty.”  This produces surprised responses and a couple of times has elicited a shocked expression or two.

Thankfully, we happen to have very soft lighting in our master bath.  This is great to have as you age.  I believe it is a necessity.  You don’t see the wrinkles and lines that tend to develop and since I color my hair I never see the gray.  When we traveled this summer my young looking, baby faced husband noticed a few more gray hairs developing.  This was hard on him.  He, like myself is vain and we both like to look and feel healthy, trim, and I’ll be honest, young.  (Come back next week for my blog, I married my mother.)  When he was at work a few weeks later he mentioned seeing the gray to one of his partners who deadpanned, “Great, now you will look like a gray haired teenager.”

Is it any wonder that I am preoccupied with my aging appearance?  Of course the women on the Bravo Real Housewives show are always discussing their own or other women’s looks and plastic surgery.  They look young because they pay to look young.  These women have stylists, personal trainers and personal plastic surgeons, just like many of the hollywood stars who inevitably must depend on their looks to survive in the industry.  We are a youth focused culture and I am no exception.  I am easily influenced by fashion trends and the media.  My long term plan always has been to have some sort of work done at 50.  However, the lines developed sooner than expected and I married… well you know.

Now my plan had always been Botox, but Myasthenics cannot have Botox.  There is a risk of permanent muscle weakness and ptosis.  Well, I already have both and the fact of the matter is that no reputable plastic surgeon is going to inject me with Botox.  The damned MG was once again getting in the way of my plans.  First my career and now this, how much am I supposed to tolerate?  I realize it sounds incredibly petty to read this, and believe you me, I feel tremendous guilt in writing it.  The Jewish and Catholic influences in my life have produced enough guilt to go around.  Another reason that I continue to keep my non-real housewife job is so that I am able to give back to patients and families with much larger concerns than mine.

So that left Juvederm or surgery or both.  Well, I was relieved to find out that my plastic surgeon thought I should wait a bit for a surgical step, a bit meaning at least mid-fifties.   I have enough lines to make me look older than I am, but not enough to qualify for anything drastic.  I decided on Juvederm which works as a filler, mainly around the mouth and the creases that develop between the eyebrows.  The physician or in my case the physician assistant, injected liquid filler into my creases to fill them in.  I found the idea fascinating, and the reality painful.  Although I used ice during the procedure to numb my face, when my face was no longer numb it throbbed.  It also hurt to laugh or look surprised for several days.  My mouth felt as if I had been to the dentist for major drilling and injections of anesthetic into my gums. As time passed and the filler smoothed out and the swelling went down, I must confess that I was incredibly pleased with the result.  One friend noted that I looked ten years younger, and she is a friend who would not hesitate to tell me never to waste my money again.  My gray haired teenage-looking husband did notice the difference and while both his and my friend’s comments made me happy, I think what really mattered is that I felt younger.  I am no longer cringing when looking at my face in harsh light.  So I guess that in a year (as that is how long the filler is supposed to last), I will go back in and brace myself for another injection from the fountain of youth.

Have you ever thought of having a cosmetic procedure to change your looks?  Write me and let me know.