Deirdre's Journey

The Girls
Deirdre Amanda, Morgan & Kelsey
Thanksgiving Weekend
November 24, 2007
Chicago, IL

Welcome to my page! I have lupus and everyone is always asking how I'm doing, which gets challenging with friends and family scattered across the globe. I decided to put this page together to keep my family and friends updated on what's going on medically and otherwise in my life.

I'm 25 years old and began having symptoms 11 years ago, when I was 14 and came down with what the docs thought was mono, but turned out to be so much more. It's been a wild ride learning to live with this disease and I'm still learning everyday, especially in the past 5-6 years as the disease has become much more active and is getting hard to control.

On September 5th, 2006, my uncle suffered a massive heart attack early in the morning and passed away, leaving his wife (my Aunt Lisa) and three daughters - Amanda (27), Kelsey (11), and Morgan (6). My extended family has always been close, with my Aunt and Uncle's family especially due to our shared time living in Atlanta eons ago, and we are close in good times and bad. While looking for a job, I lived in Atlanta with my aunt's family. My uncle's death was devastating and life-changing for us all and we still struggle to move forward during this first year. This journal tracks our family's journey through this grief just as it does my journey with lupus.

I graduated from the George Washington University in May 2004 with a BA in psychology after 3 years in DC. In May 2006, after transfering from Boston University School of Social Work halfway through my program, I graduated from Columbia University School of Social Work with my Master's of Science in Social Work where I specialized in Advanced Clinical Practice in the fields of health, mental health, and disabilities. After becoming certified, I now work as a Child Life Specialist at Arkansas Children's Hospital in the Neonatal Intensive Care Unit (NICU), where I can work 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 thrilled to find that you've come to walk part of this path with me.

Thanks for visiting!




*Please* sign my guestbook...I love to know that you've come to visit my page and check up on me!!

Playing: The Gabe Dixon Band's "All Will Be Well"


*****

"At times the world can seem an unfriendly and sinister place, but believe us when we say there is much more good in it than bad. All you have to do is look hard enough. And what might seem to be a series of unfortunate events, may, in-fact be the first steps of a journey."
-Lemmony Snicket's "An Unfortunate Series of Events"

*****

“The pathway is broken,
The signs are unclear
And I don’t know the reason why You brought me here,
But just because you love me the way that you do,
I’m going to walk through the valley if You want me to.

‘Cause I’m not who I was when I took my first step
And I’m clinging to the promise You’re not through with me yet.
So if all of these trials bring me closer to You,
Then I will go through the fire if You want me too.

It may not be the way I would have chosen,
But You lead me through a world that’s not my home.
But You never said it would be easy,
You only said I’d never go it alone.

So when my whole world turns against me and I’m all by myself and
I can’t hear You answer my cries for help.
I’ll remember the suffering Your love put you through
And I will go through the valleys if You want me too.”
-Ginny Owens, "If You Want Me To"

*****

"When you come to the edge of all the light you know and are about to step off into the darkness of the unknown...faith is knowing one of two things will happen: there will be something solid to stand on or you will be taught how to fly."
-Barbara J. Winter

This is my journey in learning how to fly...



26.2 miles of sheer craziness. GO MOM & DEREK!!!

Journal

Monday, May 5, 2008 - Still Here

Yes, I'm still here. I'm working on an update, but I'm not quite there yet. Work-wise, things have been going well and I've celebrated my year anniversary at ACH. The kittens are big girls now (which they decided one day - no more bottle, no more afternoon nap...who says cats aren't human like?) and they, too, have celebrated their first birthday. My mom and brother have continued running and are preparing for their first marathon on May 18th. Derek was accepted into graduate school - to the University of Manchester in England, no less. How proud am I?!?! Dad continues his work and him and my mother have settled into life in Chicago, as too has Tiger.

And me? I'm hanging in. I get out occasionally, but not as much as I'd like. This disease continues to zap my energy. I've finally stopped spilling protein as of February and the transition to a new rhuemy has brought with it a new prescription for a med to help me sleep at night with less pain in hopes that maybe I'll get some energy back. I'm fairly convinced one of the side effects must be increased emotions, because mine have been on edge as of late.

I'm sure that some of it comes from the frustration of life day in and day out with a disease that zaps my strength and a job that I love that keeps me far from loved ones and the various support systems I worked so very hard to create. Little Rock is much like St. Louis and some of the other places I have lived - great for families, but difficult for young adults who are no longer children, but who aren't married yet. The goal is that the new medicine helps with my sleep, which in turn helps with my energy, which allows me to get out more and do more and create those supports here.

Right now, some of the most promising news is that I'm back in the pool. I've joined the local Y and have been swimming 2-4 times a week for most of the weeks. And I've gotten fairly geeked out...I have an iPod nano named Nemo that I swim with, thanks to h2oaudio. It works and I love it.

So I continue to move forward. I'll keep working on that entry. With luck, hope, and a few spoons, I'll be back before another half of a year passes. I think of you all often and I apologize for my absence. Those who come here, who support me, you get me through. And so we move forward again. Still here.

Love,
Deirdre

"Big Girl" Emma still loves the computer...here she is attempting to mouse hunt.


"You've got a lot of choices. If getting out of bed in the morning is a chore and you're not smiling on a regular basis, try another choice."
-Steven D. Woodhull

Read Journal History

Hospital Information:

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

UAMS Medical Center
630 West 168th Street
Little Rock, AR

Growing Up
Little Rock, AR

Links:

E-mail Author: dag2117@columbia.edu

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