Monday, October 27, 2014

Everthing you wanted to know but were afraid to ask

This is me......Dawn Pongon

So, I'm not so self-absorbed that I actually think a blog should be about ME. All future blogs will contain witty, insightful, thoughtful, interesting and relevant information. 
This first posting is simply an introduction to me, so you can decide if I am worth the 5 or so minutes it will take you once a week to read what I have blogged.
I won't start at the VERY beginning, but let's pick up in 1991, with some of the important life milestones:
  • May 25, 1991  I married Marc Pongon (best decision ever)  That's PAWN-GIN which truly is Italian
  • June 9, 1995 I gave birth to gorgeous twin daughters, Hannah Kathleen and Sarah Elizabeth
  • 1993-1997 Lived in Colorado Springs, CO, where Marc was a Captain in the USAF and Hannah and Sarah were born at the USAF Air Force Academy
Now, the things that require more than a bullet point.  In 1998, I became involved with an organization called "Trauma Intervention Programs of Portland/Vancouver, Inc,."  Little did I know that answering an add in the paper would have such a huge and defining impact on my life.  As the Crisis Team Manager, I was not just "working", but I felt as if I was doing work that God had called me to and created just for me.  I was blessed to use my gifts to help others and live my dream career all at the same time.  My job was essentially "Citizens helping Citizens in Crisis".  I recruited and trained citizen volunteers to respond to their fellow citizens in a time of crisis, which usually meant a death had occurred.  Obviously this job required that I spend time among the emergency responders and agencies in our area.  My boss/BFF, June had her office in a fire station training center.  I had an office in my dining room.  Having a home office allowed me the privilege of taking my girls to and from school, kung-fu, piano lessons, first communion classes, and Catechism classes.  I was able to go on field trips and bring treats to the classroom.  As they got older, it meant that I was able to see basketball games, MANY soccer games, a few football games (yes, Sarah played on her 7th and 8th grade team as the only girl!) and track meets (Ugh! My least favorite).  Of course I also traveled to see June at the office and of course, what would a "real" job be if there weren't meetings???
It was during one of these meetings that life as I knew if came to a screeching halt.  I noticed that my throat and tongue were starting to itch.  My chest felt tight and I was turning red from head to toe.  I excused myself to the restroom, looked in the mirror and knew trouble was brewing.   My memory gets fuzzy here, but I recall June jabbing me in the leg with the epi pen I always carried due to an egg allergy, I remember flipping the bird to the first responders who were seeing a less than professional side of me, and I remember waking up in the ICU.  Fast forward 3 weeks and things have gone from bad to worse.  I was a medical mystery and instead of being treated as a thing of awe or an opportunity to learn, I was treated like crap.  I was called a liar, a faker and a drug seeker.   Finally, an allergist was called in.  He was very nice.  He had no idea what was wrong, but decided to test me for a really, really rare disease that he had never actually seen as a doctor, but he heard about it at a conference.  I'm pretty sure it was not covered in medical school.  Well his tiny hunch turned out to be right, and I entered a new phase of life: Systemic Mastocytosis.  Google it.  It isn't good.  Not too much to be optimistic about.
I have been through all the "normal" treatment modalities and a few "Hail Mary" treatments that failed dramatically.  Gone are the days of shuttling kids to and fro.  I rarely leave the house, unless it's to go see a doctor.  I generally have 3 or more appointments each month.  I take gobs of medicine and have had more ambulance rides, ER visits, ICU stays and hospitalizations than most people would see in 10 life times.
Masto has entered all our lives- I mean the WHOLE family.  My parents, and Marcs parents shuttle ME to appointments now since I can't drive.  (Apparently one must be conscious to drive)  My kids know how to handle emergency situations much better than their father, aka "The Fainter".  And as trite as it may sound, we treasure the little joys and victories in life- like tonight I made dinner for the first time in probably 5 years.  Actual cooking, no microwave involved!
Of course, for me, the best part is meeting fellow masto peeps from all over the world.  It's an honor to meet and be humbled by what others put up with in their disease process.  There are many who have it WAY worse than I do.
So, now you are up-to-date with my life.  I am quite happy.  I have the love of a great, great man.  Two daughters who light up the room when they walk in and who are embarking on their own adult journeys.  I have the best dog in the world, by the way, she knows when I'm going to need emergency help before I do, and my family is unbelievable in their support.  As rough as it is, I have managed to feel like I still have something to offer this world and I have no intention of giving in to masto any time soon.
And that's me!