Charla de Lupus/Lupus Chat®

Your Stories

Arlety’s Personal Story:

Arlety Charla De Lupus StoryI was diagnosed with Lupus Nephritis at the age of 19 on August 2009. Before my diagnosis, I was young, vibrant and always full of energy. One morning, I came into work, and one of my eyes was swollen. This was one of the first symptoms that emerged from lupus. As the days passed, my feet became more swollen, and it became hard to walk or even fit into my shoes. I recall lying in bed in so much pain that I didn’t want to get out of bed. I decided to go to the nearest hospital, the doctors at the emergency room noticed how swollen I was, and they decided to call the Rheumatology department. My doctor informed me that the inflammation was due to a problem going on with my kidneys. In order to make sure it was lupus, I needed to undergo a biopsy. The biopsy confirmed that it was indeed lupus. At that moment, I was so devastated and hopeless. At first, I thought that my life was over and that everything was going to change. I was hurt that I had to stop doing the things I enjoyed and had to start taking medication for the rest of my life. I was on high doses of prednisone that made my face extremely swollen. I was losing my self-esteem and felt horrible about myself. My hair, which was very thick, was falling out day by day.

After many months of taking my medication, my doctor slowly started to decrease the prednisone. Little by little, my face started to go back to the way it was. I started to feel more confident about my health and how I looked. My doctor called me her “best patient” because I always took my medication and did what I was told in order to become better. Now, at the age of 23, I can say that my health has never looked better. I have the support of my family who has always stood by my side no matter what. They are my support system, and they have helped me to cope with lupus so positively. I am now in my last semester of college, graduating with my Bachelor’s degree in Forensic Psychology. I am working part time at a great organization on the weekends and actively volunteering at the Charla program, trying to encourage and lift the spirits of those that feel hopeless just like I did. Oh, and my hair grew back even better this time!

Marielin’s Personal Story:

MarielinI was diagnosed with lupus when I was 19 years old. It was 1997, my second semester of my freshman year of college. Unlike most people who go undiagnosed for years, I was diagnosed right away. “You have a mild case of lupus,” the doctor said. “Lupus is a chronic illness. There is no cure for lupus.” One of my first thoughts was, “Am I going to die?” My first symptom happened one freezing winter night in late October 1996. I was on my way home from a party with friends and my cold hands started to lose sensation, feel tingly, numb and turned blue. Up until that moment I hadn’t noticed anything unusual with my health. I began to feel constant pain in all of my joints. I couldn’t stand up straight, and I couldn’t get in or out of bed or cars easily. I had difficulty getting around. I lost my appetite and started to lose a lot of weight. I had terrible migraines and fevers of 102. Eventually, my aunt saw through my self-pity and inspired me to stand up for myself regardless of lupus, by saying exactly what I needed to hear. She inspired me to take my medications, to get up and start healing. I got better by the end of summer and went back to school.

I manage my lupus by educating myself about lupus, medications, and alternative treatments. I take my medications daily, the way they are supposed to be taken. I eat healthy by paying attention to the foods that make me feel good and noticing the ones that don’t. I exercise. I meditate. I share my feelings and thoughts with a therapist every other week. I participate in personal training, development programs, and communities that uplift me. I make time for fun—enjoying time with my husband, friends and family. I get a lot of rest. I surround myself with positive, empowering people that make me feel good. I keep stress to a minimum. I do my best to stay in the present moment and trust the flow of life. I also volunteer with the Charla de Lupus (Lupus Chat) ® program. I’m most proud of my volunteer work with the Charla program and how far I’ve come since my diagnosis. Almost 13 years ago I entered the Hospital for Special Surgery with an incapacitating illness. Not only did I become a grateful patient to 10 extraordinary physicians and six compassionate social workers but I also became a volunteer, a health educator and community service plan associate for the Charla de Lupus program.

Marina’s Personal Story:

Marina's personal storyOn September 24, 2010, after being in and out of the hospital for a month, my diagnosis was made: I had systemic Lupus combined with a very rare blood disorder called Evan’s syndrome. After finally being diagnosed, the reality of going from healthy to sick didn’t hit me; I wasn’t feeling any emotion. I went from 17 years without taking a pill to now being required to take several pills a day; from never wearing sunscreen to always wearing sunscreen; from not watching what I ate to limiting sugar and sodium consumption (due to prednisone); and from never going to the doctor to having weekly appointments with multiple specialists.

I did everything my doctors told me to do for the first few months until the reality of living with two serious conditions with no cure hit me. I was frustrated with being different from my friends; the moon face, always feeling tired, and not being able to play in the sun. I was upset and stopped taking all my medications for an entire month up until my monthly rheumatology appointment. During this time, I experienced, nose bleeds, petechiae, severe headaches and unimaginable weakness. I told my doctor that I stopped all my meds for a month and she was very disappointed. She emphasized the importance of taking all my medications. Up until this day, I do everything all my doctors tell me to do no matter how much I hate it. I was lucky something serious didn’t happen, and I use this advantage to educate others about how serious lupus really is.

Lupus is not a death sentence; it can be managed. I noticed that eating healthier foods such as whole grains and vegetables rather than fried foods greatly improved many side effects caused by lupus or my medications. Talking with friends, participating in fun activities, and going outside on nice days are good ways to reduce or avoid stress. Also, it is very important to maintain good relationships with doctors in order to get the best treatment. No matter how difficult life with a chronic disease may seem, there is light at the end of the tunnel. Lupus is in me but it does not define who I am.