Our Journey

By Carl

When Marge and I met, she was a Travel Nurse, under contract to the Labor and Delivery unit of Brandon, Florida – the baby factory of the world!  This was only her second assignment as a Traveler, the first having been in Montgomery, Alabama.  Having no doubts that I wanted Marge permanently in my life, I persuaded her to go on staff there.  I’m glad she did.

We had many adventures.  We fixed up her home in Zephyrhills, Florida – a suburb of Tampa, got acquainted with the new relatives each of us brought into the relationship, went to concerts, watched the Buffalo Bills (her family’s team of choice) and the Tampa Bay Buccaneers (mine), did karaoke, and had a blast!  I got her added to my seat allotment at the Bucs games, and we became Charter Seat Holders in the new Raymond James Stadium.  We bought a time-share on the ground floor of Sunset Harbor – a Hyatt resort next to the Hilton and Mallory Dock in Key West.  She introduced me to music I had missed in my Navy and Church days – the Mavericks, Eric Clapton, Garth Brooks.  And I taught her sons to play Liars Dice.

Late 2001 and early 2002, Marge began to get a yen to go back on the road, so we could see the country – maybe even go overseas (we both wanted to go to Ireland, to Hawaii, and other places), and see our grandkids (some in Maine, others in California, and the rest in Florida).  Her first “Traveler” contract was in Plant City, Florida – actually a closer commute than Brandon had been.  The second was in Fort Myers, Florida.  Next, she went to the Pompano Beach area, where her contract was in Plantation, FL.
   

Marge’s next contract was in Rochester, New Hampshire, so  I semi-retired and put our things in storage – except for the travel things we took with us.  We lived in Dover (pronounced Dov-ah).  We had a great time – seeing our grandchildren in Portland, Maine, eating fresh “lob-stah” (which produced a lot of glee when I got juice scattered all over me), seeing the Fall colors, driving to the White Mountains, sight-seeing the lighthouses and covered bridges, and (finally) finding a sports bar where we could watch our Bucs play.  We were the only ones there with Bucs colors.  When it began to snow, it was time to leave!  Since Marge’s early days in upstate New York (Corning and Watkins Glen), she came to HATE snow!

We arrived in the San Diego area in early December, 2002.  We had an apartment in La Jolla Colony, and Marge worked in Encinitas.  We walked the beach at Del Mar, ate at Jake’s, traveled around the state to see family in Bakersfield, Oakland, and San Francisco, visited Tijuana and Rosarito (for their version of lobster), and got interviewed by the San Diego NBC affiliate during Super Bowl week!  We had a great trip planned for Marge’s birthday weekend (February 22) – an overnight stay in the San Francisco room of the East Brother Lighthouse Station, with a GREAT buffet scheduled, followed by a ride on the Napa Wine Train the next day – with another great meal, and lots of sights!  Marge was so excited!

Then ITP struck!  Marge began to experience numbness in her legs, which progressed upward.  We took her to the Scripps Hospital in La Jolla, where they began to run a number of tests.  We were never completely sure what had caused the numbness; although it became thought that an inner contusion or infection near the spine might have done the dirty work.  What did become clear was that her platelet count was extremely low!  She was diagnosed with ITP, and another type of journey had begun.

What is ITP, you ask?

The Platelet Disorder Support Association describes it this way:

“ITP, idiopathic thrombocytopenic purpura, also known as immune thrombocytopenic purpura, is classified as an autoimmune disease. In an autoimmune disease the body mounts an attack toward one or more seemingly normal organ systems.  In ITP, platelets are the target.  They are marked as foreign by the immune system and eliminated in the spleen and sometimes, the liver.” 

http://www.itppeople.com/

On their site they give information about the disorder and offer support through true accounts and a discussion forum for those with ITP,

Ladies like Dorothy, Mel, and DeeCee bestowed on  everyone such compassion and graciousness, I am in awe!

Having grown up in the South (amidst moving and traveling around the country, and stints in the Navy, which took me to California and the Far East) I know about courtesy.  In the country, we referred to it as “Y’all come!”  In our house, you were always welcome to potluck – whatever we were eating you were welcome to join in.  And if there wasn’t a spare bed or couch, we could make up a pallet for you.

Nevertheless, there is a term – graciousness – which I have come to associate with ladies like my Mother, my Aunt Nell, Aunt Sue, and Aunt Ann.  Either they learned it from their Mother (my “MA”), or it is inherited like an instinct.  In any event, graciousness is not learned from etiquette books.  It goes beyond courtesy - to genuinely caring for people.

Dorothy, Mel, and DeeCee have this graciousness.  They are superior human beings.  While I would not have chosen for Marge to have ITP (which I think could more descriptively be called “Improperly Threatened Platelets”), I am thankful the influence of these ladies has been felt by me and many others.

ITP is not an easy disorder.  For a few, ITPis an acute form, treatable with prednisone to raise and stabilize the platelets count, and then they are fine!  For most adults, the condition is chronic – with them for the rest of their lives.  At best, you hope for periods of remission – that is, stable “safe” counts without need of treatment.

“Normal” platelet level is defined as about 150 to 400 thousand per cubic milliliter, although different people can have “normal” counts above or below this range.  Safe counts are anything that does not cause symptoms – such as purpura (bruising), petechiae (spotting, like little small measles), and bleeding.  While rare, it is possible for people to die – from bleeding in the brain, or medical complications brought on by auto-immune problems.  But treatments can usually prevent this.  And there have been heart-rending tragedies among the elderly and babies.  Yet, of those diagnosed with chronic ITP, most live fairly “normal” lives.  Some people say they only treat when their counts fall below 10,000.  Some don’t treat at all.  But each person is different, based on his or her own symptoms.

There are effects of the disorder which only the ITPers themselves know firsthand.  These include severe fatiguing (which the ITPers insist is part of the disorder, while most hematologists disagree), mood swings (mostly from treatments such as the harsh steroid drug prednisone), and worries over finances and inadequate medical coverage.

Most of our families do not –and possibly cannot – understand the frustration and permanence of this disorder.  ITPers look healthy!  My Mother commented, “I hope Marge doesn’t get sick, again!”  And people usually cannot help with the financial burden, since they have their own lives to live.

http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php

Our journeys took us to Walnut Creek, next, so we could see more grandkids.  Then, we decided to head closer to home.  We went next to Savannah, Georgia., then to Gainesville, Florida, and finally to a small Florida community in the country.  We are enjoying the furnishing and landscaping that goes with a new home.

After more than a year with platelet counts that would not stabilize – what Marge calls the roller coaster ride of ITP, Marge now has success!  She has platelet counts above 100,000 – without treatments for two years.

All who know my lovely, wonderful, and courageous wife say, “Yayyyyyyy!”