Let me apologize up front for my blogging attempts. I am sure there is some great blog law that I am breaking or some well known blogging rules that I am disgracing. Maybe "blog" isn't the best word for what I am doing. It's mostly just my thoughts- like the old Saturday Night Live Skit, "Deep Thoughts by Jack Handy." Whatever it is, it's my sincere attempt at bringing a small piece of my ideology to you, my adoring public. <Insert raucous laughter here>:
I was born into a family of givers; active in our church, the community and school. My parents both taught my siblings and me the old adage, "'Tis Better to Give Than Receive." I can remember days with my dear friend, Jennifer Woodhouse Horowitz, cruising the halls at the old Memorial (creepy) hospital, delivering flowers, magazines and good will as candy stripers. Christmas Caroling at the politically correct "memory care centers." My parents would serve as chaperones for choir events, which I actually thought was cool. As I got older, I did things with my church and as an adult, I chose the servant leader mentality by managing an all-volunteer crisis response team (www.tipnw.org) that served the entire community.
Due to this service mentality, I think I find it hard to ask for help. Not the little stuff like asking Marc to please get me water, let the dog out, fold the laundry, vacuum, do the dishes, wash the car, clean the garage, let the dog out again, feed the dog, change the channel, clean the bathroom, make dinner......wait a minute, what the heck do I do around here anyway??
Honestly, some of you (hopefully, all of you) got a little chuckle out of that paragraph. The sad news is that it's all true. You all know I'm "sick" (I HATE that word) and on a good day, I can venture downstairs to make an indentation on the couch, let Daisy out if I have to and make my own lunch, which is always a peanut butter sandwich. On a bad day, Marc will leave some water and crackers at the bedside for me, as he doesn't (nor does anyone) want me going anywhere close to the stairs. Every time I battle the stairs, they win. The nausea I fight with every day seems to surrender to an occasional Wendy's Frosty, so every now and then, I am blessed by the Frosty Fairy. (Thank you Ann, Jerry, Mom and Dad).
I guess I better get to the point. Recently, I went outside my comfort zone and asked for help. I created a "Gofundme" account, which is a place where people in need can make a plea for assistance from loved ones or strangers. It was really hard, and counter-intuitive, for me to ask for help, especially money. I've been overwhelmed by the response. Anyone who has ever faced down a serious disease can tell you how quickly the bills add up. Just in the last two weeks, I've accumulated approximately $30,000.00 on medications, $80.00 on office visit co-pays, $600.00 +20% of one ambulance ride, $300.00 + 20% of two ER visits, and 20% of a four day hospital admission. Merry Christmas, too. I plan on giving out all those nice skid proof socks the hospital gives you as my gifts this year.
I just read this back and it sounds dreary and a tad pathetic, but I guess if you had to describe me right now, those words would fit. I hope it hasn't been too off-putting for you, because if you are reading this, you are probably an important part of my life. All in all, I want to send out a huge thank you to those that help. Not just by giving financially, but to all the wonderful people in my life who do all sorts of kind things. It has not gone unnoticed, and hopefully not unappreciated. For those of you reading this, thinking you may want to help, please know that I will have a hard time answering "what can I do"? It might be better to just take matters into your own hands and bring dinner over (Nida, I miss your amazing cooking, come home soon!) or come take Daisy for a walk. Or get Marc an Amazon gift card so he can do something for just himself. He works so incredibly hard for his family. He is a man of great character. As the Dalai Lama said, "The roots of all goodness lie in the soil of appreciation for goodness."
Monday, October 27, 2014
|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:
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!