The Hot Mommas Project Case Study Competition - Women in Business Balancing Work and Life

Chelsea Swift
GLOBAL WINNER: 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.

Question 1	Chelsea overstepped her mental and physical capabilities when she got an internship after her diagnosis. Have you ever experienced negative consequences (professional, physical, emotional, social) after pushing yourself too hard? If you have, how would you handle this situation differently now and similar situations in the future? If you haven't, then what do you think Chelsea could have done to still feel productive while maintaining a healthy balance?
Question 2	Chelsea had destructive habits in the past, and to move forward, she had to walk away and start a new path. What bad habits are holding you back? (anything, i.e. do you procrastinate? smoke? Don't make enough time for friends and family?) How do you feel when you engage in these habits? Can you stop them or find a healthy alternative? What steps do you need to take to break those bad habits? (i.e. make a time line and stick to it, talk to your doctor about quitting, or scheduling time for social activities)
Question 3	Chelsea was hard-hit by her medical diagnoses. She relied heavily on a close network of family, friends, doctors, and support groups to help her through this difficult time. Do you have a strong support system? Who do you go to when you have a problem? Do you talk to certain people about specific problems? What problems, what people, and why? Your support system can include anyone from teachers and psychologists, to friends, family, and neighbors, to your dog.
Question 4
Question 5

Notes

There are a few things about lupus that I was unable to explain in this case that I'd like to talk about further.  It is not a well known or understood disease, and I'd like to take this opportunity to explain some topics that have affected me, and I'm sure affect many other lupus sufferers. Also, a note on the title of this case.  The malar rash, also known as the butterfly rash because of its shape, is a very common symptom of lupus.  The butterfly, as well as the color purple, are used as a representation of the disease, much like the ribbon and the color pink for breast cancer.  

Lupus is an autoimmune disease.  It can affect nearly every organ in the body, but most commonly affects the kidneys, blood, joints, and skin.  Lupus makes the body unable to distinguish its own healthy cells from foreign cells and so it attacks itself.  It is a disease of flares, meaning there are periods of activity (flare), and periods of remission (where little or no symptoms are experienced).  It is not contagious. 

My personal challenge for this case was lupus, however, this disease has been a challenge not only for me, but also my loved ones.  I know that it’s been a terrible struggle for me, but I think to have to watch someone go through this is equally horrific.  After my seizure my boyfriend would visit me in the hospital everyday. I knew that we were dating because my mother and sister had told me.  The nurse would ask me, “Who’s this?” and I would respond, “Oh, that’s my boyfriend.” “Well, what’s his name?” and I would just repeat, “He’s my boyfriend.”  It killed him to see me that way.  We talked about it the other day and he put his head in his heads and mumbled that those were the worst two weeks of his life.  Until recently, I was unable to follow conversations that were longer than a few minutes long; I would forget where they started and what I was talking about.  It’s frustrating not only for me, but for the people I love.  I used to be intelligent, I was going to school on almost full academic scholarship and I was reduced to a drooling bumbling idiot in two weeks.  And they all had to sit and watch it.  They still do.   I can see it in their faces, I can hear it in their voices when we talk on the phone, I can feel it in those hugs that last just a few seconds longer.  They have to watch while I cry in pain on the couch, while I stumble and stutter through conversations, while I stay in bed all day long, unable to move my leaden body.  It hurts them, and it kills me that it does.

Lupus affects nearly every aspect of a sufferers life.  There are so many things that have to be thought about, big and small.  I can’t have a stressful job; stress is a trigger for lupus. I can’t sit on the beach with my family at our annual LBI trip; sun is a trigger for lupus. I can’t exercise to get back into shape after all of these drugs have caused my muscles to atrophy; it causes too much pain.  I can’t go out at night with friends and have a few drinks like a normal 23 year old because of interactions with the drugs, because if I stay up too late it will wipe me out entirely for who knows how long.  This disease is unpredictable, and it makes long term plans almost impossible.  Whether it’s a vacation a month from now, or wanting to have children, there’s so much more to making a decision when the future is so unknown. I’ve heard stories in my support group about years of remission, only to unexpectedly get slammed again by the disease.  Even if it goes away for a while, you can still feel it lurking in the background, ready to strike when you least expect it.
 
The side effects from the medications used to treat lupus are sometimes worse than the disease itself.   Aside from being unbearable, they are also very confusing because many of them are also symptoms of the disease.  Lupus has very few reliable tests to gauge its activity levels.  Blood work may show improvement, but a lupus sufferer may feel no difference, so treatment is often based on how comfortable she or he is.  Medication side effects can create a huge and messy grey area in treatment plans.  Fevers, joint pain and swelling, rashes, confusion, memory loss, mood changes, exhaustion, muscle weakness, these are all common side effects of drugs and also common symptoms of the disease. 

Prednisone, a corticosteroid, works amazingly, but it wreaks havoc on your body and your self-esteem.  I used to be thin, I looked so different, and now sometimes I look in the mirror and I don’t recognize my face.  I went to a local bar at home around Thanksgiving and I had to introduce myself to people I went to school with for ten years.  It makes you re-evaluate your priorities.  Yes, these drugs may destroy your looks, but they improve your health.  It makes you identify with who you are, rather than what you see in the mirror.  I'm now more confident about who I am, rather than what I look like.  I might look different on the outside, but I'm still me; I'm still that same strong, fun, intelligent girl.  Other drugs like chemo and methotrexate will wipe you out for a week.  Nausea, vomiting, exhaustion, chills, pain.   And those are just the things you can see and feel.  Prednisone can also actually cause the degeneration of bones, muscles, and skin, chemotherapy can destroy the ability to reproduce, and, along with imuran and methotrexate, can increase the risk of cancer in the future. 

Generally, I try to stay positive, telling myself that things could be so much worse, which is very true.  Originally my doctors were coming up with diagnoses like HIV and lymphoma; a lupus diagnosis was really a blessing.  So I keep my chin up, try to have a sense of humor about the whole thing, and push through.  But every once in a while, I can't hold it all in and I breakdown, I mourn the life the I could have had, I cry, I yell.  And then I feel better, and I'm ready to face it all again.  I had to have a mediport placed in my chest for chemotherap

Links to sites relevant to your case

1	Lupus Foundation of America
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Your typical daily schedule

From	To	Doing What	Business/Personal

Question 1	Chelsea overstepped her mental and physical capabilities when she got an internship after her diagnosis. Have you ever experienced negative consequences (professional, physical, emotional, social) after pushing yourself too hard? If you have, how would you handle this situation differently now and similar situations in the future? If you haven't, then what do you think Chelsea could have done to still feel productive while maintaining a healthy balance?
Note 1	Sometimes students push themselves too far without realizing the possible negative effects of doing so. By identifying a past experience and listing other choices, or ways to cope with the situation, they can be avoided, or handled more efficiently in the future.
Question 2	Chelsea had destructive habits in the past, and to move forward, she had to walk away and start a new path. What bad habits are holding you back? (anything, i.e. do you procrastinate? smoke? Don't make enough time for friends and family?) How do you feel when you engage in these habits? Can you stop them or find a healthy alternative? What steps do you need to take to break those bad habits? (i.e. make a time line and stick to it, talk to your doctor about quitting, or scheduling time for social activities)
Note 2	Identifying things that are holding students back in their lives and asking how they feel and how they can eliminate these challenges is a constructive way to improve their lifestyles.
Question 3	Chelsea was hard-hit by her medical diagnoses. She relied heavily on a close network of family, friends, doctors, and support groups to help her through this difficult time. Do you have a strong support system? Who do you go to when you have a problem? Do you talk to certain people about specific problems? What problems, what people, and why? Your support system can include anyone from teachers and psychologists, to friends, family, and neighbors, to your dog.
Note 3	Identifying your support system before you are presented with a problem is helpful when actually confronted with a difficult situation. Students will be able to handle life's difficulties with more certainty and ease if they have a support system in place.
Question 4
Note 4
Question 5
Note 5

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