7 -- The Hospital ER is Not a Good Vacation Spot / "SOUNDTRACK"

Last week of June, 2018

So now we had a hint of what was happening to my body.  We were armed with cautions from my doctor concerning my breathing.  We were saturating ourselves with information about Myasthenia Gravis, learning as much as we could.  I joined several online support groups, gathering lots of information from the experiences of others.  One thing I noticed as a common theme in all of the groups was the difficulty in finding doctors – even neurologists -- who listened and took them seriously.  I felt blessed and grateful to know that Dr. Marom was my PCP.  I was soon to discover for myself that not all doctors were as capable and caring as he.

We attempted to do “normal” things, to live life as usual, to not feel like things were going off the rails, to not feel like that roller coaster was still on a dive towards crash-and-burn. 

However, I began to realize that my mind was slipping into some dark places.  The last thing I needed was depression on top of all of the rest of this.  To combat dark moods, I allowed my mind to go on “Untethered Time Travels” – I glide through my memory, taking myself somewhere else in time and dwelling there for a while.  I use the term "untethered" to mean that in these travels, I am not tied to the disease that seems to be taking over my life.  I will be sharing some of these “travels” at the end of this and future blog posts.

Every year, our family comes to our house for the 4^th of July.  This year, we had planned it for the weekend prior.  This coincided with our wedding anniversary on June 30.  I had been looking forward to the weekend for MONTHS, planning some fun and games with prizes, anticipating swimming and riding the pontoon with my grandsons, children, parents, and my sister and her family.   

But I was beginning to feel really bad.  I was getting short of breath – I had to stop and sit down for a rest just walking from the bedroom to the living room.  It became more and more difficult to breathe deeply.   I couldn’t cough, I couldn’t yawn, I couldn’t even cry – I did not have enough air to do any of that.  By Thursday, June 28, we knew I was in trouble.  Around midday, David called 911.

I’m 61 years old, and this was my first trip in the “business end” of an ambulance.  I spent the night in the ER where I was evaluated by a 3-member neurology team.  A chest x-ray showed that the bottom portion of my lungs had collapsed.  My diaphragm muscle was so weakened that I was only using the top third of my lungs, and I was unable to expel the high levels of CO2 that built up in the bottom.  I was prescribed Mestinon – commonly the first drug given to people with MG.  It helped significantly with my double-vision and head-drooping, which boosted my spirits.  But nothing much was done about my shortness of breath.

The following morning, I was moved to a room on the Neurology floor.  My daughters Amanda and Melody arrived to join David with me at the hospital.  I was happy to see them.

The young female resident on the neuro team that had seen me the previous evening was assigned to my case.  She bounced into my room on Friday morning and announced that all of my blood tests thus far were negative for MG.  Since we had done our research, we were aware that there is such a thing as Seronegative Myasthenia Gravis – and that many people test negative to the first round of tests.   I am not convinced that this doctor had ever heard of Seronegative MG, based upon her reaction to our questions.  We knew other tests could be performed to identify the type of MG that I likely had, but she avoided our questions.  Hey, if she did not know yet, and needed to do some research, I would have accepted that answer.   I know this is an unusual disease.   But what we got was this announcement:  “Well, your tests all show up negative.  You’ll be released this afternoon.  I need to go see some patients now who REALLY need some help.”   With that, she turned and left the room.  My husband, daughters, and I sat in shocked disbelief at her lack of professionalism.  True to her word, I was discharged from the hospital that afternoon.

We had cancelled the Family 4^th weekend, but my daughters both suggested that perhaps a “day trip” on Saturday would work for most of us.  I happily agreed – I needed the boost of family.  The house was full –  my children and their spouses, my grandsons, my parents, my sister, and niece! 

    

We enjoyed a lot of laughs, great food, and the kids all spent some time playing in the lake and back yard.

  

 I camped out on the back patio, watching in the shade.  I was just happy being surrounded by the love of my family.  There’s no sweeter sound than that of family love.  I felt sad when they all left.  The house felt big and empty.  But I looked forward to the next time when we would all gather again.

That day was also our 11^th wedding anniversary.  I found what I thought was a pretty nifty gift for David.  The 11^th anniversary symbol is steel; he loves to cook – so I found this cool stainless steel spatula.  He loved it.

It was a good day. 

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Untethered Time Travel:  SOUNDTRACK

It is 1960 and I am 4 years old.  I’m sitting on the hardwood floor in front of the fireplace.  Tiny blue metal plates, cups, and a teapot litter the floor between me and my doll because we are having a tea party.  My mother walks into the room, pulls out the piano bench and takes a seat.  The bench is on a gold rug so that the feet won’t scratch the floor.  (I know the piano bench has deep scars and scratches on top of it but I was not the one who put them there. My Uncle Buck made those scratches when he was a little boy and Grandma Belle made him practice. He would much rather have been outside playing cowboy – his toy gun and holster left permanent protest signs on the finish of the bench.)  My mother selects a piece of music and props it in front of her.  She tells me the name of the song is “Clair de Lune” and the words  mean moonlight.   She sits just a moment, hands on keys, then she takes a breath and begins to play.  Her hands move gracefully across the keys, I watch them as they seem to be floating through the air.  She wears her wedding rings on her left hand, a gold marquis-shaped dinner ring on her right hand.  Sometimes the diamonds in the rings catch the light and sparkle as she plays.  The melody begins simply, moves into majestic expressive chords followed by notes that roll and tumble up and down the scale, then softly tapers to a gentle finish.  I watch and listen, mesmerized.  I think I see the moonlight in the sound even though it is broad daylight.  My mother is the most beautiful thing I have ever seen or heard, and I want to be just like her.  

Throughout the years, my mother plays piano for church, weddings, funerals.   But I like the recitals she plays for us at home the best.  

The soundtrack of my childhood is glorious piano music,

 rippling through the air on my mother’s fingertips.

When I am 9 years old, my own piano instruction begins.  My teachers are Mrs. Brewer, Mrs. Moore, then Mrs. Whistnant.  I become a passable accompanist pianist.  I play for church, weddings, funerals.

When I am in my 40’s, my mother gives me the gold marquis-shaped dinner ring and I wear it on my right hand.

I’ve tried to play “Clair de Lune.”  It remains far beyond my talents. I have never managed to capture the magical moonlight of my mother’s hands on the keyboard.