Lupine Life

Great Rift Valley
Kenya, July 2015

Welcome! At 14, I began having symptoms that seemed like mono but turned out to be lupus. My family and friends are scattered across the globe and I wanted a way to keep everyone up to date on what's happening.

It's been a wild ride learning to live with this disease and I'm still learning everyday. In addition to my medical journeys, I'm currently a long distance triathlete, an American expat in Qatar, and a child life specialist who works with children and families who, like me, deal with hospitals, doctors, and the world of medicine at an early age.

This journal is my way of sharing this journey with you and I am glad to find that you've come to walk part of this path with me.

Thanks for visiting!

Journal

Saturday, February 13, 2016 - Week 15 - Saying Goodbye

After a little over two weeks in country, my parents headed for the airport in the early hours of Wednesday, February 10. It was sad to see them go. I like my family, even if they wear me out. That said, I'm still rather under the weather so I'll admit to a fair bit of relief in getting through the end of the week and heading towards the weekend and some continued R&R. That, of course, made me feel guilty. Balances.

The end of their trip was a bit better than the start. To begin with, we knew my job was safe even though I had friends who weren't so lucky. My core group was in tact as well, a completely unexpected blessing. This meant we could spend the time enjoying each other's company and taking in the Doha sights. The Tour of Qatar cycle race was this week and the route took them right through the Pearl. We stood outside and cheered and, in what is becoming a tradition, I snagged a selfie as the leader in the yellow jersey rode by. We also took the time to go out to Purple Island. It's north of the city and is where a particular type of sea slug makes a product long used in purple-red dye. We explored in the water, marveled at the purple shells and headed back to the city for game night with my friends. I'm so blessed that my family likes to travel and wants to experience new places. It was really cool to be able to show my parents, in living color, where I live. (They even got to try out aerial yoga...including my dad...it was a spectacular moment).

In lupine life, a BIG milestone happened Friday. You know what I didn't do for the first time in a year? Take any prednisone! It's been a long time in coming and a hard fought battle, but it happened. The next trick will be staying off. For now at least, I celebrate. That picture of that moment at Purple Island? Says it all. :)



Reveling,
D

"A family is a unit composed not only of children but of men, women, an occasional animal, and the common cold."
-Ogden Nash

Saturday, February 6, 2016 - Week 14 - Back to the Beginning

Growing up, I'd heard the stories. I knew my name was picked because it meant "the wanderer" and my middle name came from the city where my parents lived. 35 years ago, my parents made the Emirates their home. They traveled back to the states pregnant with me. Growing up, I never once heard the phrase "hurry" but was always told "yella yella" and my name is a daily reminder of both how far they traveled and where they once lived. This week, I traveled back to Al Ain with my parents to discover all the things that had changed and all that which had not. It's always been strange to straddle the two worlds. I am connected to the Gulf through my name, my parents, and my upbringing.

Growing up in the shadow of the Gulf is challenging to explain. Seeing the old compound, the hospital where my parents found out they were pregnant with me, the city that has grown in leaps and bounds made me connect with those roots in a visceral way. My parents have always encouraged me to take the opportunities. To make the most out of the moments and to hold onto the memories. Their time in the Emirates helped lead to my decision to make the leap to come to Qatar. So we spent the day exploring. Seeing the old places. Relishing in the stories. Discovering how red the sand is. Connecting. And in the end? I can only hope that many years in the future, may I be so lucky to see how the place I now call home has changed.



In my lupine life, I find that some weeks, chemo is harder than others. This week is hard. I'm curled up in a ball under the covers waiting for the nausea and GI fun to subside enough to go back to sleep. Methotrexate doesn't care if I'm on holiday. Neither does lupus. Thus, altering my med schedule significantly is a risk I can't really take and my options for altering my schedule are less than ideal. So I curl. And wait. And thank my father for booking a room with two bathrooms so I don't have to wake them running back and forth. It is what it is.



I move forward. And I relish in being able to see my parents rediscovering their past and mine. I hide what I can, rest when I have to, and wonder about the line between protecting them from the ugly truth and showing it in all its glory. It's hard. It's so hard some days. But in those moments of sunsets and red sands? Worth it. Sometimes, it is in the joy of seeing another sunset and knowing that you have successfully made it through another day that allow you to make it through the harder parts.

Wandering and wondering,
D

"We went face to face with all our fears
Learned our lessons through the tears
Made memories we knew would never fade
One day my father—he told me,
'Son, don't let it slip away'
He took me in his arms, I heard him say,
'When you get older
Your wild life will live for younger days
Think of me if ever you're afraid.'
He said, 'One day you'll leave this world behind
So live a life you will remember.'
My father told me when I was just a child
These are the nights that never die"

Read Journal History

Hospital Information:

Patient Room: ~*~Home in my own Bed~*~

Al Ahli Hospital
Doha, Qatar

Links:

E-mail Author: dag2117@columbia.edu

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