Your Stories

“The most challenging aspect of living with lupus is dealing with the fact that I have this illness and keeping a mindset that I have to take things easy. Being tired most of the time is the biggest part of living with lupus. To cope with the fatigue, I would stay home and rest up by taking a nap or sitting around the house listening to music to relax. At work it would be hard to try and rest, but the only thing I can do is to pace myself on tasks. Despite the fatigue, I still enjoy my daily routine of jogging and going to the gym two times a week, and continue a regular lifestyle of socializing with friends and family.

Family and friends are the two most important things that have helped me cope with lupus and overcome any mental blocks. They are the people who will help inspire me, and give hope to lift me up during times when I feel like burying myself in isolation. Maintaining a positive mindset is one of the biggest things I focus on to attain full recovery and continue living a normal daily life. To keep a positive mindset, I maintain a regular healthy life style of exercising and eating right. One thing I keep in mind is that I have lupus, but that it isn't going to disrupt my life because I control the lupus and don’t let it control me.

LANtern has connected me with many counselors and other lupus patients to share our experiences together and talk about concerns we have. These experiences we share with one another bring us hope, comfort, and inspiration to stay strong and not feel alone. I remember Karen Ng being my very first peer counselor who contacted me when I was first diagnosed with lupus. She educated me on lupus and gave me the hope that things would get better and they have. Till this day I have her to thank for those words!”

-Anonymous (male)

"I am a full time mom of one child. My lupus started ten years ago right after my son was born. My biggest challenge with lupus is my joint pain. When it flares up, the pain in my back, elbows, and hands makes it very difficult for me to do house work, much less care for my baby. I was clearly frustrated. Thanks to my doctor, under her care, my pain improved remarkably and is manageable in general. Today, my son is big and strong and is able to help around the house. My family always gives me the love and support that I need all along. I am still a lupus patient but I am happy."

"With this chronic disease, it is important to communicate with your rheumatologist on a regular basis in order to get the proper treatment. I know that when my lupus is in remission, I can live a normal life just like everyone else. That said, I will still listen carefully to my body – know when to slow down, get rest, and work wisely."

"LANtern helps me understand a great deal about lupus. The knowledge I gained over the years has allayed most of my fear arising from this illness. I understand how it happens, what can be done, and what not to do. At LANtern, I have the opportunity to “vent out” to my peers and it often gives me a peace of mind afterwards. It is comforting to know that I am not alone in this journey. As a group, we can make our voice heard. We hope that an increased public awareness will lead to greater funding and research efforts towards a cure for this disease."

-Jenny L.

"It all started with a rash on my face that was shaped like a butterfly back in May, 2003. My mom took me to her general doctor and the doctor told me it was mere acne and not to worry about it. However, for the six months that followed; I experienced hair loss, fever and fatigue. On the other hand, my dermatologist was trying to figure out my acne problem by prescribing different kinds of antibiotics. Nothing worked and I was feeling horrible day after day. The truth finally came on the day when I was referred to an experienced Rheumatologist at Hospital for Special Surgery. Numerous lab tests later, I was swiftly diagnosed with lupus and was put on medication right away. No wonder lupus is nicknamed: “The great imitator” – which features non-specific symptoms and may be confused with a number of other diseases. While it could be a relief that my six-month ordeal came to a conclusion at long last, it was also a shock as I was not at all aware of this illness at the time. 

I eventually came to terms with my life with lupus which, in turn, gradually descended into remission. As the years ensued, I was basically medicine-free and was living an active life style marked by one high point event after the other - running the New York Marathon in 2006, getting married in 2007 and having a baby in 2009 – to name a few.

The fact is, stress and lupus do not go together. Not surprisingly, it was during my pregnancy that my lupus flared up, for it had obviously generated considerable amount of stress to my body and mind. Nonetheless, the good news is my son was born healthy months later and I am slowly getting better with the help of medical treatment as well. My son is truly a gift and he brings us pride and joy. In retrospect, I feel extremely fortunate to have the support and love from everyone in my family who helped (still do!) me through the difficult times.

When I first came in contact with LANtern, its comprehensive resources provided me with everything I wanted to know about lupus. My experience as a Peer Health Educator for the program has also been invaluable. While I am reaching out to other patients, I am learning how lupus can impact people’s life in so many different ways. I appreciate every opportunity to speak with our callers as it helps me understand that each person has different concerns and different ways to deal with lupus. It is consoling to know that I am not alone in the journey with lupus and empowering to be able to educate others about this illness or answer some of their concerns."

-Vicki, pictured with her son

I am originally from China, where I went to medical college. After graduating from medical college, I was married and eventually gave birth to a son. During my medical training and practice as a new professional, I started to notice this nagging fatigue that I didn’t think much of. In my mind, I thought it was just the usual pressure from being in the medical profession and juggling a professional life and a family life as a mom and a wife. However, the symptoms slowly intensified. In addition to my tiredness, I would occasionally experience pain in my knees and finger joints as well as subtle swollenness around my ankles in the end of the day and mild puffiness in my eyelids in the morning when I just got up. It was then I was diagnosed with and treated as nephritis, but still, nothing seemed so detrimental that it affected my overall functionality. My doctors suspected that I could have lupus, but it was not confirmed because all the lab tests except the urine test were normal.

My family and I immigrated to the United States a few years later. Shortly after I came to this county as I transitioned into a new cultural and linguistic environment in all aspects of my life, my symptoms escalated. The fatigue and joint pain were intensified; I also started to have fever, facial rashes, dry mouth, shortness of breath, anemia, more prominent swollenness of legs and eyelids, morning stiffness in almost every joints, etc. After a series of lab tests, I was confirmed that I had lupus. I reasoned that the stress played a role in impacting on my health.

The most challenging aspect of dealing with lupus was enduring the chronic fatigue and the uncertainty of when another inflammation would quietly crawl back into my life. I had my moments of emotional adjustment after learning of my lupus diagnosis, and continue to have them as I live with lupus. My professional aspiration had to be put on hold because of my physical limitation.

I have, however, come to confront life limitations and challenges with a positive attitude. I have learned to take pleasure in the small things that I can do, like traveling a long distance for work, and helping others whenever I can at the LANtern program as a volunteer. I’m especially proud of my son, who is fully grown and healthy, in his third year of college, and considering a medical career. I’m glad for the time I spent raising him when he was small, in lieu of pursuing a medical career.

The most helpful and supportive person in my life has been my husband, who hardly ever complains but supports me in all ways big and small. For example, he takes on cooking and everything domestic the days I have to work outside the home, and he gladly helps at home after a long day of his own work. The other thing is that I have learned not to push myself too hard and to listen to my body. I have learned not to spend time dwelling on regret or feelings of frustration. So, even though I am no longer a practicing doctor, I take pride in my loving family.

Through LANtern I have come to meet and become friends with other lupus patients. I used to feel isolated because I hesitated to let others know that I had lupus. Now I know I’m not alone, and I can have that kind of heart-to-heart connection with those who can understand my experience. Through LANtern activities and my training as a volunteer, I also have the opportunity to learn more about this disease called lupus.

-Mrs. Liu

"In 1981, when my daughter Cindy was seven years old, she became very ill. She had high fevers, nausea, and vomiting. Her urine turned pink. We were very worried about her and did not know what was happening. My husband and I took her to the pediatrician, and they said she had to go to the hospital. The doctors found a rash shaped like a butterfly on her face. Her kidney function was not normal. Cindy went through all these tests and saw many doctors before they transferred her to another hospital two weeks later. At Milton S. Hershey Medical Center in Pennsylvania, Cindy had more tests. Every night, I stayed with her. One evening, there was even a fire alarm, and I worried how they would get everyone out and especially Cindy, since she was very weak. Luckily, we did not have to evacuate. The doctors took her to surgery to get a piece of her kidney to make a diagnosis. The day that doctors told my husband and me the diagnosis changed our lives and Cindy’s forever. She had lupus…a word we had never heard before.

Because her lupus involved her kidneys, Cindy had to take very high doses of steroids called prednisone. This made her feel hungry and eat a lot of food. Her face became very round and puffy with a moon face. Through all of this, Cindy never complained. I remember she never cried when the nurses could not draw blood from her arms. She also had to take another medication called imuran. Still, she did not really feel better. Cindy came home very tired after school and had to take naps to get some energy back. She was pale, got anemic, and needed a blood transfusion. At that time in 1985, God blessed her because I had a friend who recommended that she go to the National Institutes of Health (NIH).

At NIH, Cindy received experimental medicine in a research trial to get an intravenous (IV) medication called cytoxan. We met a very good doctor, who seemed to treat her like his own daughter. Luckily, we only had to drive two hours each way to NIH to get the treatment. I always stayed with Cindy because the cytoxan made her nauseous, and vomiting could occur at any second. After the infusions were over for at least the next week or so, she would be very tired. The cytoxan also caused her hair to fall out, and I would find her hair on her pillow and in the shower and on her clothes. Even if I touched her hair, a few strands would come out. Again, she never complained. Over these years, Cindy had several more kidney biopsies. Ultimately, her doctor decided to stop the IV treatments after seven years of the medication, and put her on a medication called lisinopril to try to cut back on the amount of protein she was losing in the urine.
 
Through all of this, Cindy was able to become the valedictorian of her high school. She then went to her first choice of colleges, Yale. After this, she did some lupus research and talked about lupus in the community. Then, she went to Boston University for graduate school and two master’s degrees. Still, she never gave up on her true dream to become a doctor to help other people, just like her doctors had helped her. Cindy graduated with a medical degree of D.O. from the University of England College of Osteopathic Medicine (UNECOM). While she was a medical student, Cindy was doing research on lupus in Asians and found a group called the Lupus Asian Network (LANtern). She volunteered with them and then became a member of their Advisory Board. Cindy is still an active advisor for LANtern.

After medical school, she did her residency in internal medicine in New Jersey. During her second year, she started to have nosebleeds that she could not stop, and blood would come out of her mouth. She had ITP (idiopathic thrombocytopenic purpura), or a low platelet count. She was on different medications, like steroids and IV injections of medicines like WinRho and rituxan. After working for 24 hours straight taking care of patients, she would drive to an infusion center to get her treatment. Cindy was not sick like this for a long time. It got so bad that she had to go to the emergency room in the middle of the night because of high fevers and bleeding. One night in the hospital, she did not look good. I looked around the hospital floor, and thank God, her doctor was on the same floor! He sent her to the intensive care unit. A couple of days later, they discharged her. Not too long after that, she had to go back into the hospital for the ITP, and this time, she had surgery to take out her spleen to make the platelets better.

Because she was in the hospital two times and even had surgery, she had to take time off from her residency. Cindy decided to make a presentation about her case so she could teach other people about lupus and ITP. At the end of the year, the hospital gave her an award for the best presentation. I was very proud of her when she finished her residency. Then, she did a fellowship in infectious diseases. Today, she is a specialist in infectious diseases with a private practice. She and her husband live in Cherry Hill, New Jersey.

I am lucky and proud to have a daughter like Cindy. Even though she was first diagnosed with lupus back in 1981, she was able to keep living her life. She is an inspiration to many people with lupus. I hope if you have lupus, you can learn to overcome it, too."

-Diana S. Meng