Case

Chelsea Swift
The Flight of a Butterfly: Life Before and After A Lupus Diagnosis

Introduction:

The third time is the charm.  I looked down at my swollen arm, the medication seeping beneath my skin, the pain so excruciating I couldn’t hold back the screams any longer.  Another IV had infiltrated, another three technicians, an ultrasound machine and five tries later, they would find another vein, only to have it all happen again.  Third IV, third hospital visit, third school, and I hope something good comes out of all of these tries…

Background:

I loved school all through my freshman year of high school.  I was intelligent, in all of the advanced classes, I had a big group of friends, never got into trouble; I was the kid that every parent wanted.  I had high hopes, I had visited my mom’s friend in Washington, DC the summer of eighth grade and I saw Georgetown’s campus, and I decided that was where I needed to be, that I would go there after high school.  But something changed and I did a complete turn around.  My grades, my family, my life, nothing mattered to me anymore.  I formed some very unhealthy habits, I stopped going to school.  I didn’t get in with the ‘wrong crowd’ I was the ‘wrong crowd’.

Nobody thought I would go to college. When I got into LaSalle University, I figured, “Why not? I have nothing to lose.”  I spoke with my sister the other night and we were laughing, slightly bitterly, about the hell I had put her through before, and how normal, functional, and happy I’d become.  She said to me, “Mom and I honestly thought that we’d get a phone call one day, saying they found you dead in some Philly alley.”  She laughed, and I laughed, but it hit me like a train, I was sad that I was ever so self-destructive. But I was also happy it was over and proud of how far I had come in five years.

Academic/Professional Issue:

The first semester of college was like high school without adult supervision.  A few rough nights, one resulting in a hospital visit, still didn’t convince me that I was destroying my life.  But I woke up in the hospital again, early one morning in January 2007, to the disappointed, tired faces of my mother and sister and I realized that this was not what I wanted anymore.  I wanted something else; I needed something better.

The next week, I had to go to a museum for a history class.  I drove onto Drexel and University of Pennsylvania’s campuses and I loved it.  It was big and beautiful and in the middle of everything. The campus and the city felt alive.  It was full of new people; it was a new place, a new start.  I decided to transfer and that Drexel was the perfect school for me.  I could get my degree, but also graduate with eighteen months work experience at three different internships.  I could figure out what I liked and what I didn’t like, and have a clear path when I graduated. 

I fought my demons and completely turned away from my destructive behaviors that I had nurtured for the past few years.  I worked hard and brought my GPA up and transferred, with an academic scholarship, to Drexel University.  I had two internships. Towards the end of my second internship at a digital marketing agency, the media director called me into her office and asked me if I would like to stay with the company part-time. I was flattered, and excited that she wanted to hire me again, but I looked at her with regret and replied, “I’m sorry, I’d love to, but I can’t.  I’ve been accepted to George Washington University and I’ll be moving to DC in the fall.”

            My two years at Drexel had been great, except for one thing.  School was not a challenge, at all.  I was getting straight A’s, a lot of the time without even going to class.   If I was going to pay for school, I wanted to feel like I was actually learning something.  I was accepted to GWU with an academic scholarship.  I was happy, ecstatic really.  I felt like I could do anything, like I was unstoppable. 

Personal Issue:

August of 2009 was the start of a new life for me.  School was challenging and I loved it, I was doing well and enjoying all of my classes.  In October I started getting low-grade fevers.  I brushed it off, took some Aleve and continued on with my daily life.  But then, my lymph nodes started to swell, my fevers got higher, and my joints started to ache.  The student health center couldn't figure out what was wrong.  An Infectious Disease specialist, who was also left stumped, decided that I needed to be admitted to the hospital.   I had biopsies, lumbar punctures, and enough blood draws to look and feel like a human pincushion.  And then, after two grueling weeks, losing twenty pounds and gaining several scars and bruises, came the diagnosis.  It was lupus.

I was put on very high doses of corticosteroids along with an immunosuppressive and an antimalarial drug.  I was forced to withdraw from all of my classes and was advised to take the next term off as well.   But I thought that this was just a bump in the road.  Lupus often has long periods of remission and I just figured that this would stop and maybe never come back again.  But I was wrong. 

I decided that if I couldn’t go back to school, I would get an internship and at least improve my resume.  I worked full-time and was happy to keep busy.  But I was so tired, and I started having horrible pain in my face.  The right side of my face became paralyzed.  In March I had a seizure.  I was unconscious in the ICU for several days and in the hospital for two weeks.  I didn’t speak for days, and when I eventually did, I was still very much unaware of my surroundings.  I remember nothing from March through May.  The doctors determined that I had lupus cerebritis.  My facial nerves and brain had swelled, causing the paralysis and the seizure. I was started on the chemotherapy drug, Cytoxan.

I was doing well enough in May that my doctors felt comfortable taking me off of Cytoxan and I moved back home to New Jersey for the summer.  But my brain was still slowing down and none of the new drugs I was trying controlled my lupus effectively.  

I moved back to DC and was happy to be back with my boyfriend in a city I love.  But I started having trouble breathing and was admitted once again to the hospital.  The doctors thought it was an infection.  I was put in isolation and taken off of all of my immunosuppressive medications so all that I had left to treat the lupus was steroids.  The pain that resulted from this medication change is indescribable.  I would just sit, curled in a ball, crying, alone all day.  I needed to restart chemotherapy.   No other medications had worked and they knew that Cytoxan had successfully controlled my lupus in the past.  I have been on chemo since September. 

So far, the third time has been the charm, in both my health and my academic life.  Three hospital stays, three schools, and one tentatively happy student and woman later, I’m taking one class at GW and chemotherapy is really working.

Recently, I came home after my first class, after being able to focus on a group project and contribute and speak and have a conversation, and I thought about how wonderful it was, how happy I was to be back.  And I started to cry, and at first it was happy tears, but then it was angry tears.  I am so angry that the past year and a half has been taken from me, I am sad about what it has done to my family, and I am scared, I am so scared, that it will happen again.

But I have to focus on the ‘now’.  More than ever, a balance of my work and school life with my personal life and health concerns is imperative.  If that balance is tipped, if that scale becomes uneven somehow, the resulting complications could be devastating.  I have learned this the hard way early on with Lupus. 

I have learned a lot about myself and my life from this disease. I have learned that my family and friends will always be there for me.  I have learned that I am strong, I am so strong, and that I can now get through anything. My journey with Lupus has put things into perspective for me.  I have not been broken by this.  I am still myself, but I believe a better version.  Lupus may have made my body weaker, but it has made me, as a person, stronger.