Lupus Warrior Corner | Pennsylvania Delaware Valley

"When she said those words, I thought to myself, no…I love the sun, I work outside, it CANNOT be lupus."

What is your lupus story?

I decided to leave my job as a scientist for the Maryland Department of the Environment in Baltimore and do a one-year volunteer/missions’ trip. I was an English teacher and educational assistant for science and math in Managua, Nicaragua (Nicaragua is located between Guatemala and Costa Rica. It is the poorest country in Central America and the second poorest in the Western Hemisphere).

It was an incredible experience, but I also had hardships while I was there, like having rats in my hair to being robbed—but the worst was yet to come. I wasn’t feeling well for weeks. I was so exhausted that even laying down to rest took a lot out of me. My host family (who didn’t speak English) thought maybe it was too much sun exposure (average climate is 80-100 degrees Fahrenheit year-round), I was working too hard, I had a virus, or I had a water-borne illness, but I knew it was something else. My fingers felt raw, sensitive to the touch, and they were peeling. I had mouth sores. I had a hot rash on my face. My wrists, elbows, knees, and hips hurt so bad. I had a migraine and dizziness almost every day. I was suffering, and I had no idea what my ailment was. After two weeks, I bought some data to call my mom in the United States. She thought it could be Lyme’s disease, a water-borne illness, or lupus. When she said those words, I thought to myself, no…I love the sun, I work outside, it CANNOT be lupus.

I remember sitting at the hospital in Nicaragua with my heart was racing after many tests and appointments when the doctor said I have lupus. My stomach dropped and I felt overwhelmed and tried not to cry. It was a tsunami of emotions hitting me as I was trying my best to listen as the doctor spoke in Spanish. He kept asking if I understood and I think I just nodded my head. I don’t even remember exactly what he said. I sat there silently as my mind was slipping into a different world. I felt like I was going to pass out. Though I was happy I finally had answers and that I wasn’t going crazy, I was devastated with my diagnosis. I made the tough decision to end my service early and go back home to the United States.

I went to a rheumatologist and other specialists and found out that my lupus was more severe than what we originally thought. We started a more aggressive approach to get my flare-up under control. My life changed in ways I never would have imagined. I left the country as a healthy, active, young woman and came home feeling like a seventy-five-year-old! I still have flare-ups with days when I can’t walk because of the pain and I get the butterfly rash on my face frequently. I try to nap and celebrate small victories when I can, such as brushing my own hair!

Why are you involved with our Chapter?

When I was first diagnosed, and for almost 8 months after, I mostly kept to myself. I didn’t talk to my friends or family about my symptoms or struggles because I was hoping I could just ignore it and go about my regular life. I soon realized that was impossible and became overtaken by my symptoms. My anxiety rose, I was depressed and moody, and I lost some friends, which made things even harder. Once I finally accepted my disease, I chose to write a blog post about my struggles, which led to more open conversations with friends and family. I wanted to educate myself and others about lupus.

I told myself I can sit alone and suffer in silence, or I can get help, talk with others battling lupus, get their advice, and give my support by getting involved. I joined support groups on Facebook through the Lupus Foundation of America and then found the Philadelphia Tri-State Chapter. I am an advocate not only for myself but everyone suffering, physically and mentally, or those battling in silence. I decided to not feel sorry for myself anymore and make a difference. This year I participated in the Walk to End Lupus Now Central Pennsylvania on May 5th with my Chapter to raise awareness. Our team (2 B’s Lupie Groupies) had 30 participants and we raised $1,680 all thanks to my friends and family!

Lupus seems uncontrollable. I am not in control of this disease, there is no cure, and I can’t predict how I will feel day-to-day or what people say will about me; but what I can control is my voice—I chose to not be silent about my invisible illness.

What would you say to people who were recently diagnosed?

It’s OKAY, to NOT be OKAY. It’s okay to cry and be frustrated some days, but it is also okay to have fun with your friends and smile on your good days. Do not feel guilty for trying to live a “normal” life. Every day will be different. On our good days we deserve to feel happiness and love and go on adventures! On our dark days it’s okay to feel alone, empty and sad as well.

I mourn the loss of the life I once had and the future goals I had set that are now unattainable. It’s okay to be upset. You are going to have days of pain and it’s okay to say “NO” because of your pain or fatigue. I think that is the most important thing to remember, even for myself, because living with an invisible illness, it’s hard to not let other people’s opinions/actions/comments affect you and get in your head.

So even if people say, “Well, you look great!” “You don’t look like you’re in pain!” “You’re so young though!” Just remember, it’s OKAY, to not be OKAY. Your feelings are valid—never let anyone invalidate your feelings, regardless of how you look or act on your good days. Only YOU know how you feel. On my bad days I tell people, “I’m not okay, but I will be” and that is OKAY. 

Build yourself a solid support group. Be open, honest, and vulnerable to your friends and family. I wouldn’t be here without my support group.

Lupus sucks, but it sucks a lot less when your family and friends put the ‘US’ in LUPUS.

"I never thought in a million years, that at the age of 39, I would receive a diagnosis that would have me confined to a wheelchair..."

What is your lupus story?

June 24, 2007 changed my life forever.

I was sitting in my chair, and had pains in my left leg. As I got up to try to relieve the pain, I immediately fell. I managed to get myself up, and woke my husband up and told him that something was wrong, and that I wanted to go to the emergency room. I was then air lifted to Philadelphia. The next day I was still having pain in my legs, and asked the nurse if I could get up and walk, and as I stood up, my legs gave out. Several tests were performed, including a spinal tap.

I never thought in a million years, that at the age of 39, I would receive a diagnosis that would have me confined to a wheelchair, paralyzed from the waist down, and told that I may not walk again because I have Systemic Lupus and Transverse Myelitis. I had never heard of either one of these diseases, and the only thing I could remember at the time was the Rheumatologist telling me and my family that my illness was very serious and that they have to use the most aggressive treatments possible in order for me to get well, but I will be going home at wheelchair level so begin preparing the house for wheelchair accommodations. After spending 3 months in the hospital, I went home to begin learning how to adjust to living life in a wheelchair.

My son was 12 years old, and had trouble coping in school, and my husband and other family members also had a very hard time coping and adjusting to our new family lifestyle. How did I go from being a healthy, independent woman who worked, and played sports, to someone who now needed care with bathing, dressing, meal prep, and basic daily tasks 24 hours a day, 7 days a week?

I did not know if I would walk again, but my only prayer was to be able to stand up when my son graduated from high school in 2012. Through extensive therapy, faith, prayer, determination, and maintaining a positive attitude, I have gone from a wheelchair, to a walker, to arm crutches, and now to using a cane. And the best news is that I was able to stand up and cheer when our son graduated from high school in 2012!

Why are you involved with our Chapter?

After being diagnosed and participating in my first walk in Ocean City, NJ, and seeing the number of lupus participants, I was overwhelmed with emotion, knowing that I was not alone. I was determined to learn more about the organization and be a voice and support other people living with lupus, as well as educate those who have never heard of this cruel disease. I then took all of the Volunteer Training Courses, and I am now a Support Group Facilitator.

What would you say to people who were recently diagnosed?

In spite of what your situation looks like, know that you are not alone, and don’t give up!

Be an advocate for yourself by doing lots of research. 

Communicate with your doctors and make sure that they are listening to your concerns. 

Listen to your body, and be honest and upfront with friends and family regarding how you are feeling, and surround yourself with people who will support you unconditionally.

"Lupus, with all of its issues, sharpened my focus on what I want my future to look like."

What is your lupus story?

February 8, 2018 is a day I’ll never forget. It’s the day my rheumatologist made it official: I have lupus.

It started in December of 2017 when I started to noticed my face was redder than usual; I thought it was just mid-life acne, so I ignored it. But my knuckle started to swell and it was extremely painful. I have fibromyalgia so I thought it was complications from that. When I started crying from the pain, which I never do, I couldn’t ignore these symptoms anymore. My family kept asking me to go to the doctors (which I hate doing), so I finally saw my primary doctor a month later. I was given a lot of tests, including the antiDS-DNA which I had never heard of.

Two days later, I received a call from my doctor, which was strange because they never call me. I was instructed to follow up with a rheumatologist due to the results of my antiDS-DNA test. This prompted me to head straight to the Internet to figure out what this test was. It stands for anti-double stranded DNA, and it’s a test specific to systemic lupus erythematosus, since anti-DS-DNA antibodies are found in people with lupus.

At my appointment, the rheumatologist and I went through all the markers of lupus and I met a lot of them. She told me I had lupus, and that I probably had it for a long time.

I remember asking her, “Are you sure it’s lupus?” multiple times through the visit. I just felt such a sinking feeling.

After that day, I went through what felt like a mourning period. Lupus is not exactly a happy disease, though it was relieving making more sense of my health history, now knowing why I often felt fatigued.

I called that year a year of ‘cleaning house’ because a lot of things changed. I found out that lupus does not let you push; I had to stop going to certain events because they were held at night, and I couldn’t stay awake for them, much less drive when I was fatigued at night. I changed my diet and mostly eat vegetarian now. I realized I had to stay far away from people who are sick. And exercise has become a bit more difficult. While yoga used to be a breeze, now I have to pace myself more when practicing.

Above all, I learned to accept my limitations. Though because of my year of cleaning house, my graduate studies shifted; I actually decided to start concentrating on patient advocacy and chronic autoimmune diseases. Lupus, with all of its issues, sharpened my focus on what I want my future to look like.

Why are you involved with our Chapter?

I wanted to meet people like me! I thought I was fairly isolated from the lupus community but as it turns out, people are geographically closer to me than I thought. I attended the volunteer training in March of this year and it was so great to connect face-to-face with this community.

What I really benefitted from was sitting around a table with people in my exact position and not having to explain myself. Sometimes you get tired of having to constantly explain your symptoms, describe what lupus is, and disclose why you have specific limitations set in place. But at the training, I could freely talk about lupus and everyone there completely understood- they've also been there.

So when very well-meaning people tell me the ‘cure’ for lupus, I just nod and smile—I know that I have a community of people behind me for support when I need it.

What would you say to people who were recently diagnosed?

1. Don’t be afraid to reach out for support.
2. Lupus is not a death sentence.
3. If you don’t like what your doctor is saying, you have more options!

Thankfully, I have a background in health so I can discern what information on the Internet is right and what is questionable. There is a lot of misinformation about lupus out there. For example, people like to push certain diets as a ‘cure’ for lupus, but people have biochemistries that operate differently. I just try to find what works for me.

"There were times when I thought I was going to die, but I always remember that it will get better and that’s kept me going."

What is your lupus story?

The first time I felt the pain of lupus was when I did a high jump onto a couch.

I was eleven years old and I thought that I had just tweaked something. I was used to being a ‘sick kid,’ having had asthma since age five, so I didn’t think anything was odd when it happened.

In the months that followed, I began having debilitating fatigue and pain in the arches of my feet. I didn't realize at the time that the pain was due to my arches collapsing because my lupus.

A few months after that, I developed a small lump in my neck and a large painful lump in my right breast, which was alarming due to family history. She took me to our pediatrician, who ordered blood tests and found that my platelets were dangerously low. The doctor ordered my mother to take me to the hospital right away. He also said that I needed to go to Johns Hopkins, because it is one of the best hospitals in the world.

Within the next year, I was hospitalized three times, but the doctors at Johns Hopkins were not able to determine what was wrong with me. They called it 'idiopathic thrombocytopenia pupura', which basically means that my platelets were low and they didn't know why. They tested me for antinuclear antibodies to see if I had lupus, but ruled it out because I didn't have the antibodies yet. I was only twelve years old.

When I was fourteen, I went to the dentist for a regular check up and the hygienist couldn't clean my teeth because I couldn't open my mouth far enough. The dentist sent me to an oral surgeon, who found arthritis in my jaw and said I needed to see a pediatric rheumatologist.

The rheumatologist looked at me for about five minutes and then, lifting my hand so he could look at it closely, stated, "she has scleroderma". Finally, at age fourteen, the pieces fell together, and I received my diagnoses.My mother couldn't believe that after three years of not knowing what was wrong, this doctor was able to figure it out in a matter on minutes. Technically, what I have is called mixed connective tissue disease. It is an overlap syndrome of lupus and scleroderma.

During my teenage years, the bone in my left hip and right knee died and collapsed because of the high doses of steroids that I had to take to keep my lupus under control. Because of this, I couldn’t keep up with my friends. It's hard to make and maintain friendships when you don't have the stamina to put yourself out there because you're in constant pain. Additionally, other potentially life-threatening events, like when I had meningitis and pneumonia together, would take me out of commission for months.  

Much of my life turned around when I was nineteen and had a hip replacement. My hip had become so bad at that point that it would wake me up at night and I could hardly walk. Two months after the surgery, I went to England to study abroad. For the first time in a longtime, I could keep up with everyone.

"Didn't you just have a hip replacement?" people would ask, astounded by my energy, strength, and mobility. After my hip replacement, all the energy I spent dealing with the pain was now at my disposal. You'd never realize how much energy you expend dealing with pain like that until it's gone. It was an incredible feeling. When I came back, my mom said I was a different person. 

Last year, I reconnected with the surgeon who did my hip replacement to treat my other hip, which has now started to become painful. He said that because I was so young, making the decision to treat me with a hip replacement was one of the hardest decisions he ever had to make as a doctor. I could tell that he was happy to see how well I get around and how well that implant still looks after all of these years. "Thank you", I told him, "You gave me my life back."

Since then, life with lupus and scleroderma has had its ups and downs, but I don't look at it as a limitation. If anything, going through all of this as a young person gave me habits and tools to manage my energy. I've seen many people struggle to learn these skills as adults when they needed to. I am thankful for all of my life, even the for the pain because of the strength that came with it. It made my successes and my joys even sweeter. It made me who I am. 

Why are you involved with our Chapter?

At my workplace last year, I suggested to the Employee Resource Groups I participate in (AALC - African American Leadership Council, HOLA - Hispanic Organization for Leadership and Achievement, and WLI - Women's Leadership Initiative) that we do a lupus event because lupus disproportionately affects women and people of color.

Aside from me, there are several other people on site that are impacted by lupus and other autoimmune diseases, if not themselves, then friends and family members. The Johnson & Johnson, Consumer, Inc. Lancaster community has been very supportive of our efforts, and of our Walk to End Lupus Now team, Team JNJ, for the past two years. 

Last year, we also invited the Philadelphia Tri-State Chapter of the Lupus Foundation to give a talk about lupus to raise awareness at our site. Even though I have had lupus for the majority of my life, I was unaware that only 30% of people with lupus are able to work full time due to complications of the disease. I have always felt fortunate because I know that things could be worse, but after last year's talk, I realized just how fortunate I have been to live and enjoy a life that has not been bound by the limitations that I struggled with early in my life, and that others with lupus struggle with on a daily basis. So, on May 5th, I’ll walk for those who cannot.

What would you say to people who were recently diagnosed?

Actively manage the things that are under your control, like your diet, stress, sleep, and exercising when you can. Be a compliant patient, and if something isn't working for you, have open communication with those on your healthcare team and in your support system. Listen to your body to know when you can do more and when you've had enough. It's about balance.

My attitude has a lot to do with how I approach lupus. I don't let it limit me from doing anything, but I am also realistic about what is possible for me and what's not. Having a good attitude is most of the battle. When you’re feeling bad, try to remember that it won’t feel like this forever. There were times when I thought I was going to die, but I always remember that it will get better and that’s kept me going. 

Thankfully, I have a wonderful support system in place, especially my mom, my husband, and the doctors that were or have been in my life for years, and saved my life many times over. At work, I have friends and coworkers who have family members with autoimmune diseases. Having the support of everyone around me is a blessing.