Lupus Stories

Elia’s Fight Like a Girl Story (Lupus, Diabetes, Morbid Obesity)


I've been living with Lupus (SLE) since 2004. I am 42. I am lucky that my journey with Lupus has been mildly uncomplicated. What I'd like to share is the hidden monster within, in the hope of sparing others the pain I'm enduring today. This last year, I had the gastric sleeve procedure, a.k.a. weight loss surgery, and have had the worst complications due to Lupus. The purpose of the surgery was to alleviate my other chronic illnesses. I was a newly diagnosed diabetic and diverticulosis to boot. I was also a long-time migraine sufferer with sleep apnea and, of course, weight gain from all the years of roller coaster medication symptom treatments of Lupus. These were all to be taken care of with this procedure. The result: I've lost most function of my esophagus, and it has caused daily vomiting, poor digestion, serious reflux and other physical side effects. Although I've had some success with the weight loss (77 lbs), the diabetes and sleep apnea are resolved (yay me!). I didn't … [Read more...]

JoAnn’s Fight Like a Girl Story (Lupus)


I was 16 when I got diagnosed with lupus. I had been sick for a few days, but we figured it was just my nervous stomach. Then I started vomiting, and I couldn't keep anything down. We battled with the ER a lot. We went to Riley Hospital for Children to see a hemoglobin specialist, and she did not like anything she saw. So she put me in the hospital. I am 17 now. This has affected my schooling a lot. I've lost a lot of friends, but I've also made a lot of friends in the process. I have had so many battles along the way this year, I've begun calling the ER "home away from home." It seems at least once or twice a month I'm going to the ER because I'm not doing good at all. Having lupus has made my faith and many of my friendships a lot stronger, and I've been a fighter since the very beginning. It's been a hard road, but all I can say is, thanks to my boyfriend, who I've been with since February, for being with me through everything I've had going on and for dealing with how … [Read more...]

Terri’s Fight Like a Girl Story (Lupus, Sjogren’s, MCTD)


I was diagnosed with having lupus almost 3 years ago. I am now almost 60 and was told by one rheumatologist that this type of illness often goes into remission the older you get, but I'm still waiting! I also have Sjogren's and possibly an overlap issue with MCTD, though that is my biggest dread, in a way. I have so far resisted conventional drugs because they seem to make you more ill, though I haven't ruled them out if the need arises, and I don't judge others on their individual choices. Meanwhile I try to address the issues with healthy diet and lifestyle. I know it's rather like trying to climb a mountain with a toothpick, but there has been some success! I take vitamin B-complex, kelp, and vitamin D (woefully short in Lupus) amongst other things. Exercise is difficult, but I keep trying! I too have dumped the forums where everyone seems so negative. I like to think that there is a better way forward, and every day brings new challenges, but new hope. Terri United … [Read more...]

Latoya’s Fight Like a Girl Story (SLE Lupus)


My name is Toya Terry. I was born in Cincinnati, Ohio and raised there for a short period of time. I was diagnosed with Systemic Lupus Erythematosus in 1995, and then I moved to California. When I first moved to California, my diagnosis was changed to MCTD (mixed connective tissue disease). Since my first diagnosis, I have discovered that I have the factor V Leiden mutation, pulmonary embolism, ITP (idiopathic thrombocytopenia purpura), anemia, arthritis, membranous lupus nephritis and possibly fibromyalgia. Aside from that, I am the mother of a very handsome and vibrant little boy. My life has been extremely challenging since my time as a young girl. But I’ve managed to make the best of it. I choose to express my hurt, pain and experiences with lupus through poetry. I wrote a poetry book called A Piece of Me. We definitely don't get the recognition that we deserve. I'm hoping that you are able to share this with others in hopes that they will better understand our … [Read more...]

Stacy’s Fight Like a Girl Story (LUPUS SLE)


Hi, my name is Stacy Tann. This journey started for me in the year of 2012. I started out having bad headaches, sore muscles, mouth ulcers, extreme fatigue and major joint pain. After going to my primary care physician twice and having no clear vision of what was going on, I felt like I was just at a dead end. I have been hospitalized twice throughout this journey so far. Numerous times I kept telling my doctor that something was wrong, and I was always told that it was just a small case of sinus problems. In December of 2012, I was faced with a minor cold that I could not get rid of. After about two weeks of medicine, it finally went away. Eventually, after a change of primary care physicians, I was finally on the right path. After many different tests, I only had a positive ANA test. They ordered more tests to check for autoimmune disorders. I was later diagnosed with LUPUS (SLE) in 2013. By this time, I had fluid around my heart and my lungs. Every breath was painful to me. This … [Read more...]