Personal Stories

The following stories are included to give you an idea of how lupus can affect a person. Just because someone with lupus is having these experiences, doesn’t mean you will. On the other hand, maybe you are having some of the same symptoms and experiences. It is nice to know that you are not imagining these problems. You may learn some new things your doctor hasn’t told you. Also, you may think of new questions to ask your doctor. This Foundation is here to bring you information and help you realize you are not alone. We hope these stories help in that endeavor.

When people ask me what is Lupus is, I have a hard time answering that question. It’s so complicated, I guess basically it’s sort of like being illness to yourself. Most people can identify with childhood fear, an evil monster. I speak inner on daily basis and my desire to find a cure for Lupus.

When I was first diagnose, no one ever knew Lupus meant. I started of things like rash on my face and edema on my both feet. I was diagnose at the age of 25, last year month of July. Living with Lupus has been difficult to deal with. There are someday I feel I am top of the of the world, then others days I am depressed and don’t want to be bothered. When I first diagnose with Lupus, I thought it was the end of the world, knew my life wouldn’t be the same anymore everything will change. I’m still young to have this kind of illness. I begin taking steroids and chemotherapy (cylophosphamide) weight going up and down, I was getting fat all around. Losing self esteem, pride “you know what I meant?”

At the age of 25 my kidney was also affected, ” I remember this” “oh well went to get my first kidney biopsy, this was earth shattering my mind could not grasp. I remember so hard that i thought my head would burst. Now sad to say since my kidney is affected I’m undergoing for a dialysis twice a week.

I know the road was going to be rough, bad times I was going to have. Somehow I just knew, it was going to be alright.

Through all of this I received a message ” God was through with me” My Faith has sustained me. “God has blessed me in many ways I can’t be began to explained.” I know that even with the pain, I am alive, even the weakness I am alive. By the Grace of God “He has given me the most wonderful GIFT” of all “LIFE” and I cherish each day. I seek God’s MIRACLES everyday. There is evidence of it. beautiful sky, I know God has a purpose for me. “JESUS lifted me up.”

I’m very blessed that I have loving family, friends and relatives who’s always there to support me, for loving and taking good care me of all the time. Most specially my mother who’s always there to comfort me, always there by my side, she’s is my strength in times of my weakness, she never let me down, she’s is always there when I fall fall down and lifted me up. Thank you so much for everything. I love you all.

Hi, my name is Nikita and I am 25 years old this year. I thought I would share what Lupus has been like for me, not to complain, but to shed some light on what it is truly like to live with this disease. I have been diagnosed with lupus in 2004 when I was 21 years old.

My older sister succumbed to lupus at a tender age of 14 in 1992, due to kidney and lung involvement. She was diagnosed with lupus when she was 9 years old. We were really close growing up, we shared the same bedroom. I was really upset when my aunt broke the news to me... It hurts a lot to lose not only your sister but your best friend on the same day.

It broke my parents' heart to lose their daughter at such a young age. I was 9 when my sister passed away and I still remember that day so vividly as if it just happened yesterday. Seeing what my sister went through broke my heart, it was really a tough period for my family at that time. I remembered the times that my parents had to rush her to the hospital due to her serious flare up. I remembered thinking how much I wanted her to get well. I prayed to God every night to take her pain away. I would fold paper hearts, out of bus tickets with lil notes written in every single one of them, placing each one of them carefully in a jar.

I still remember the look in her eyes when I gave that to her, she hugged me and said that she loves me so much. I'll never forget that day. My sister was only a kid, I keep on asking myself why this is happening to her... but I guess God has a better plan for her. Talking about her right now still brings tears to my eyes. I hope wherever she is, she is in a better place...

12 years after my sister passed on, history seems to have repeated itself, this time, I was diagnosed with lupus. Seeing what my sister went through, my whole world just came crashing down when I found out that I have lupus too.

In mid-2004 I started feeling really tired and sore especially when I woke up in the morning. My joints hurt so bad that I couldn't even dress or undress myself. I still remember a time where I had to cut my top off to get out of it because I didn't want my dad or mom to worry about me. I knew something was seriously wrong with me then. I felt like a useless person, not able to do anything for myself.

I went to see the doctor and they did a lot of tests on me, finally narrowing down to either rheumatoid arthritis or SLE. All the results came back the next day and I was called in by my doctor and to my horror it was SLE. Doctor prescribed me with some steroids called prednisone and started me on hydroxychloroquine.

I was really lucky, far luckier than my sister. I didn't suffer any major pain except during the early stages of the lupus when I didn't know I had it. That's when I realized the importance of my limbs. I also didn't suffer any of the side effects from the steroids like the moon face or the hair loss. I finally was taken off the steroids in 2006 and my lupus has been in remission ever since. Compared to what my sister went through, what I went through was nothing. I believe my sister is looking out for me and protecting me from wherever she is right now. I am really lucky to be as healthy as I am right now. Honestly I don't feel like I have lupus at all. I have a great life, a great loving husband, a pair of great understanding parents, there's really nothing else I can ask for.

My name is Marissa Murguia and I am 24 years old. When I was 15 I was diagnosed with lupus. But within a year of being diagnosed, I was told by my doctors that the lupus was a severe case and my kidneys had began to suffer from it. I was put on high dose prednisone (among other medications) and chemotherapy once a month for the next two and a half years. Just when I had begun to give up all together, my parents and I went to a lupus seminar and learned of experimental stem cell transplants for lupus patients with severe cases. So I researched online and discovered that the best place to have the procedure, with the most experience with lupus patients, was in Chicago. Northwestern Memorial Hospital saved my life. I was in Chicago for 2 months, and received my new stem cells on November 6, 2003. Once I returned home I felt a sense of hope that I hadn't felt in a long time. My lupus was finally put in remission!!! Because I waited so long to get the stem cell transplant, by the time I got home from Chicago my kidneys were too far gone. So on September 10, 2004 I received one of my mom's kidneys.

Everything in my life is going great now. I have been working for a year and I am planning on starting school during the winter to become a phlebotomist. Thanks to the stem cell transplant I actually have a future to look forward to. Hopefully stem cell will give other lupus patients the same hope that I have every day now.

As a little girl, I dreamed of being a nurse. My dream came true; I was an emergency room nurse for 15 years. I married a wonderful loving husband named Bob and had three children with one on the way. I thrived on being an emergency room nurse and loved comforting and helping others. I guess it was my calling.

It was 1999 and I was pregnant with my fourth child. Unexpectedly, I developed a severe case of preeclampsia (preeclampsia is severe hypertension which attacks your kidneys and can lead to death). Jake was born 10 weeks early weighing in at two pounds. He was placed in the NICU to grow. He is now a healthy and happy seven year old. I, on the other hand, became extremely ill. My body was swelling to the point that I thought my skin would tear. My lungs filled with fluid, my fever was up to 105 degrees and the pain was unbearable. I spent two weeks in the hospital attempting to recover from this mystery illness. I was in a small hospital where I worked and lived nearby. I knew most of the doctors in town and as I made multiple visits to figure out what was happening to my body. All they could tell me was I was working too much, had anxiety and had stress from too many children. Nobody ever did any blood tests except the basic CBC and chem. panel. I had done my own research and knew that lupus was the culprit, but finding someone to believe me was the struggle.

By the grace of God, my husband found Dr. Daniel Wallace, a world renowned Lupus specialist who is still my doctor. My husband and I met with Dr. Wallace and he ran many tests and officially diagnosed me with Lupus in July of 2004. After years of being sick and tired and in excruciating pain, I felt Dr. Wallace was my saving grace. He also discovered I had another illness that one percent of people with Lupus get called Panhypogammaglobulinemia (an illness where your body doesn’t make any antibodies to fight off infection). None of this would have been diagnosed if not for Dr. Wallace.

Depression soon set in and my bed became my best friend. From once being a vibrant ER nurse to becoming a patient with a chronic illness I began allowing this disease to control my life. With the encouragement of my family, I pulled myself together and realized there was an important job out there for me, a way for me to help others with Lupus. My daughter Mallory and I started a Lupus support group which I just love doing. I get several calls a week from Lupus patients who have had no medical care or have received improper information on the disease. Some have never even been to a doctor. I encourage all patients to get an evaluation by an experienced Rheumatologist and get started on a treatment plan now.

As we all know, kids love to be outdoors and in the sun, the place that is my worst enemy. It had caused me many serious flares before I even knew I had Lupus. My husband bought me a really cool chair that has an umbrella attached and keeps the sun away. It comes in handy when the family is outside on Saturday mornings watching my son’s soccer games. I always wear sunscreen and the most fashionable long sleeve shirts I can find. Hats are a must to wear also; there are so many cute styles out there you can’t go wrong. If at all possible, try to avoid the sun during peak hours when the rays are the strongest.

Unfortunately, I had not exercised in two years. With the help of prednisone, depression, fatigue and stiff joints, I gained 45 pounds. Yikes! I am in the process of trying to get the weight off. My daughter and I started doing yoga twice a week and we just love it. It is so wonderful for your body and you can’t help but feel better when you are done. Swimming is another one of my favorite activities which feels great on my aching joints. I’m already having some good results.

I’ve written my first children’s book to try to help young kids understand Lupus and its effects on their mommy or daddy. The children’s book I wrote with the help of my two little boys, Dylan and Jake.

My story…Let’s see what I can remember…About ten years ago, I noticed I was having a lot of pain, especially in my hips. I had always played a lot of tennis, so I told myself I am injured. I finally ended up in a Rheumatologist’s office and he described a disease that he thought was lupus. I did not know what lupus was. According to the blood tests, my immune system was perfect. I forgot all about this conversation until years later when I read his report.

I was spending a lot of time in the desert, the pigment of my skin started changing, and I had severe headaches. I was in the sun a lot and always felt like I had the flu. I just kept remembering my tests all came back negative. Later, I learned I did have thyroid antibodies. However, the lab missed the antibodies. A couple of my girlfriends had thyroid problems AND they had sore hips. I have never found a doctor that can answer why that happens. I had hashitoxicosis. I was both hypothyroid and hyperthyroid, but I thought finally that the physician had found the mystery illness.

At this point, I was getting bronchitis for six months at a time and was getting to the point I couldn’t walk across the street. My hair was falling out. My niece told me about chronic fatigue syndrome and I said that must be it. Another doctor then told me I had Fibromyalgia. I told my Endorcrinologist I couldn’t remember anything and also about the pain and fatigue. He tested my blood sugar and said I was hypoglycemic. This is the solution. I could take a diabetic drug.

I WANT TO THANK EVERYONE THAT HAS OR WILL ATTEND OUR SUPPORT GROUP. IT IS SO REWARDING TO TALK TO PEOPLE THAT UNDERSTAND HOW DIFFICULT AND CHALLENGING THIS DISEASE IS…I AM THINKING WE ADOPT THE MOTTO, “LIVING WELL WITH LUPUS IS OUR GOAL”. Judy Terrean

I started working again. I sold new tract homes. I could not do the reports, do the paperwork, and I started to have panic attacks. At this time, I had several family members living with me. I thought I would die from the stress and I know I made their lives miserable. My body would not accept any physical or mental stress. I went to a neurological/psychiatrist and he figured out I did have memory problems. I think I went to his office on the wrong day. He had me take an MRI of the brain and they found white spots on the brain. I also had a CAT scan of the brain and the blood flow was not normal. I could not do my work. I had no idea how to handle anything. I had done the same type of job for 25 years. I felt crazy.

Some other doctor found more antibodies and a low complement level. He told me the results were serious, and he understood why I was in pain and was so tired. He told me to go back to a Rheumatologist, and I started to hear the words Sjogren’s Syndrome, Connective Tissue Disease, and recently, Lupus. Leaving out many details, the entire diagnostic process took about 10 years. I had a kidney test come back that didn’t look too good. My Rheumatologist thought there must be an error. The next test was O.K. Now, I just got another call about high cholesterol. What a strange disease this is. I am taking several medications. One of the drugs is for narcolepsy. Without it, I could sleep 20/7. Sometimes, I just collapse and sleep for a couple of days, but I feel lucky right now. I have a great team of physicians. So many people out there are suffering.

I want to thank the Lupus Foundation of Southern California for giving me the opportunity to be the Newport Beach Facilitator and the understanding I have received regarding my limitations. I hope I can do something worthwhile and help increase awareness of this disease. What can we do to raise more money for funding research? I think we just have to do it! - Judy Terrean

P.S. Since I wrote the above story. I have been diagnosed with Lupus Cerebritis. I am having IVIG infusions. The infusions are helping my cognitive abilities. Also, I have been treated for toxacara (parasites from dogs and cats). These parasites can cause blindness and if the parasites migrate to your brain they can cause death. In 2007 hoping for good health for everyone…

Nearly 5 years ago, approximately 4 months after I gave birth to my only daughter, I was 21 years old and diagnosed with Lupus SLE. I've heard of the illness but never really understood anything about it until I was faced with the disease. My mother was the one who has been my savior in all of this, along with the team of doctors who have cared and supported me through this very confusing and heart breaking discovery of my illness. My family & friends have been an incredible support as well, especially since I have a small child to take care of.

Not long after I was diagnosed with Lupus SLE, my oldest sister was also diagnosed. I have another sister in between us who has yet to have children at this time. I hope and pray that she will be spared from this illness that rocked my family’s world. Just imagine, what are the odds of three sisters from the same parents all having the same illness? My sister and I experience the same symptoms, are prescribed similar medications, and we both are treated to the almost fullest extent of the disease. Biopsy's, blood transfusions, and even chemotherapy to help prevent the kidney failure we both face! More problems meant more doctors and believe me we have never experienced anything like this ever! It was all so new to us and most of the time my sister and I got sick at the same time which made everything at home with our families and personal lives much more complicated, since we both have children to take care of. My sister is married with children, but I'll let her tell you her story. I on the other hand, am a single mother with the day to day struggles of raising my daughter in a world that is on the verge of war and disaster, a world that is about to take her father away from her in only a few short years.

In the midst of the attack on America, September 11, 2001, my body was also being attack by a disease that was so foreign to me. I had no idea what would become of me and the obstacles I would have to go through to control this incurable disease. I hear the word incurable and my heart just leaps from my body. Is this illness gonna take me away from my newborn baby? I had already lost so much time with her just being in the hospital going through treatments and being poked and prodded. I was so weak, not to mention mentally stressed out. It was hard to even lift my baby into my arms at times. When I think back to that first year being diagnosed, a lot of the memories with my daughter are filled with hospitals, doctors, 1 hour visits and the rest is pretty much a big blank. It's kind of upsetting because those are supposed to be the most precious times a person has to bond with their children, and the first five years of my daughters life has been full of awful memories of her mother being in and out of the hospital not really knowing why this was happening.

The first couple of years of trying to fight this illness I definitely went through the motions I'm sure all other Lupus patients have gone through. I tried the whole out of sight out of mind thing, I even stopped taking some of the medications that were detrimental to my recovery. It worked for a little bit, or at least I thought it did because I was feeling so good and hadn't had a flare up in almost two years! Then the fun ended and I was right back where I didn't want to be, the hospital, and found that it only made things worse for me by avoiding the situation at hand. At that point I had to restart all the treatments I had already been through but much more intensely. All the medications that were supposed to be helping me were no longer in my system because of the length of time I had stopped taking them. That meant higher doses of steroids, which absolutely drove my crazy, literally, and more rounds of chemotherapy. Because of the kidney failure my nephrologist told me I was one of his sickest patients and that I should have never taken myself off the medications that were preventing total failure. I got extremely upset with my doctors, but I guess I was madder at myself, which brings me to today. I promised myself that I would try harder & not give up hope that one day I will be able to say I'm a survivor not a statistic of this disease that is taking over so many lives. I would definitely love to help others in similar situations and if my life story helps just one person, than I know that everything I went through and still going through served a greater purpose. Stay strong and never give up the fight, a cure will be found one day!