Lupus Stories

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Nicole’s Fight Like a Girl Story (Lupus)

by 7 Comments
Apr
03
2012
Purple Lupus Ribbon LR

Hey girls!  My name is Nicole. I am 18 years old. For the first couple of years of my life, I was an active, fun girl - that is, until 2000 when I started having extreme joint pain and was always tired. For about 2 years doctors couldn't tell me what was wrong  - until I drove 200 miles to a children's hospital in Houston, Texas. A doctor walks in, exams me, and says "you have lupus". I was prescribed prednisone. I gained weight, my cheeks became red/fluffy, and I lost a lot of hair. I'm constantly getting sick and have been paralyzed from the waist down 3 times but I'm going to therapy. Its hard living with it but my mom has never left my side and together we will fight till I have control over my own body! Nicole Texas Submitted 9-30-11 The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice. … [Read more...]

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Laura’s Fight Like a Girl Story (Lupus)

by 9 Comments
Dec
31
2011
Laura's Story (Lupus)

I was diagnosed with lupus a week before Christmas Eve. I'd had psoriasis all my life - until 2006. My skin had cleared up everywhere, except my forehead. Anyway, in Summer 2010, I had high blood pressure so last August I went to the doctor. He said it wasn't high so he ran some tests on me and told me to come back the next month. Well, I went back in September and the doctor said that my cholesterol and ANA were high so he told me to come back in 3 months to test for lupus and it came back positive on 12/17/10. Now, the mini symptoms are here and my blood pressure goes up every Summer but it is normal when I go to the doctor. Laura Oklahoma Submitted 9-5-11 The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice. … [Read more...]

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Joan’s Fight Like a Girl Story (Lupus, Raynaud’s, Sjogren’s)

by 11 Comments
Dec
21
2011
Joan's Story (Lupus) LR

It was suspected about 24 years ago that I had Lupus when I went to the ER for a horrible sinus infection. I blew it off until 17 years ago when I got terrible pain and was finally diagnosed with 3 co-morbidities: Systemic Lupus, Sjogren's, and Raynaud's. It was scary when they told me I have a disease that has no cure and was considered a death sentence. As the problems progressed, I lost my ability to swallow solid food and can only have a liquid diet for fear of choking. I decided this disease was not going to get to me because we had just adopted a baby and my plans were to dance at his wedding. I also had to help my husband who had a brain stem stroke at the age of 37. I had my goal set that I was going to beat the terrible trio. I have been fighting ever since. About 4 years ago, I had a set back when we were in a car accident leaving me with herniated discs and stenosis of the C spine. It is causing some paralysis in my left arm, but I cannot let that slow me down. Our son … [Read more...]

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Raven’s Fight Like a Girl Story (Lupus)

by 14 Comments
Oct
14
2011
Raven's Fight Like a Girl Story (Lupus)

I was diagnosed with Systemic Lupus in September 2010. I spent the entire weekend in the bed, depressed and throwing myself a pity party. Until I thought about it; I have never been a quitter; and I've always led by example. I was only 27 at the time and, you know, it actually felt good to know WHY my body felt like it was falling apart. I still don't understand and I do sometimes doubt the doctor's diagnosis. I'm scared still. I have young children that I can't even throw a ball with because of my 5 shoulder dislocations (ortho says I'm too young to operate on). I also have bad knees, Raynaud's Phenomenon, degenerative disc disease & hyper-elasticity of the joints…. I think. Or it may all be the Lupus. I have so many questions – but my PCP doesn't want to answer. Just a prescription once a month for narcotics. I only recently began prednisone. I WILL BEAT THIS IF IT KILLS ME!!! What makes me the angriest is that I am unable to do anything. This depresses me. It doesn't help … [Read more...]

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Sarah’s Fight Like a Girl Story (Lupus, Fibromyalgia)

by 15 Comments
Aug
05
2011
Sarah's Story (Lupus Fibromyalgia)

I don't think I'll ever forget how my diagnoses came about. I thought it was just a routine follow up I was having with my Orthopedic Surgeon concerning my second right shoulder surgery. Then, I mention to my doctor about chronic jaw pain I've been having and how I've already seen a dentist and had my wisdom teeth removed and hoped possibly he could help me. He thought it was odd I had a lot of joint pain at the age of 17 so he decided to run some blood work. My ANA came back positive, so he sent me to see a rheumatologist. My jaw wasn't the only joint where I was experience pain at so they ran some tests and I was diagnosed with Fibromyalgia. Around the same time all this was happening I broke out in a really painful rash on my arms and got sent to a few more doctors. They took a skin culture and the tests came back positive for Discoid Lupus. I was half-way through my senior year of high school and got really sick. Luckily all of my teachers were very understanding and helped me … [Read more...]

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Sonya’s Fight Like A Girl Story (Lupus)

by 24 Comments
May
29
2011
Sonya's Story (Lupus)

Purple Colored Sunglasses I walked with a pretty fast gait. I walked around others who couldn't catch up to me. Rolled my eyes at those who were too slow. Cringed at the elderly who took too much time getting up the steps to the bus. I cringed at ANYONE who took too much time to do anything! My intention wasn't to be rude. It's just I had SOMEWHERE TO GO! I couldn't wait for time - time had to catch up to ME. I had to take my daughter to school, get ready for work, work for ten to twelve hours a day and with my job I was always on the move. I had to get home and drive through crazy Chicago rush hour traffic, grocery shop, and make it home to cook dinner. Help my daughter with her homework and make sure I got in the bed with just enough sleep to do it all over again. Slowing down? Not an option for me. The world had to match my speed. Not the other way around. But times began to slowly change. I was out of breath more often than I cared to admit. I started … [Read more...]

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Shalina’s Fight Like A Girl Story (Lupus)

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May
06
2011
Shalina Lupus Story

My name is Shalina Tovar and I battle Lupus, a kidney disease. I have been fighting like a girl since May of 2005 which is when I was officially diagnosed. My Lupus has caused my left hip to fail. I've been dealing with avascular necrosis of the hip since 2009 and now I will have to have a hip replacement on April 13, 2011. I just have to say that without the support of my Husband, church, family, friends, and most importantly without God, I would not be where I am today. I will continue to fight like a girl till they find a cure to end this awful disease!! To anyone who is battling a disease without a cure, don't ever give up! We have to stay strong and have a little faith that one day a cure will be found to end the fight! Shalina Georgia Submitted 3-18-11 The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice. … [Read more...]

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Falanya’s Fight Like A Girl Story (Lupus)

by 2 Comments
Feb
13
2011
Falanya's Story (Lupus)

Hello! My name is Falanya and at 33 years old, I have been "fighting like a girl" since I was 10 years old when my mother suddenly fell ill. I remember the first day Lupus entered my life: I was walking with my mother by my side on my way to the first day of middle school. Picture it: Philadelphia, fall of 1988. I was nervous about starting a new school, a higher grade with new and older kids, and I remember marveling at how big Ada H. H. Lewis was in comparison to the elementary school I had just graduated from when all of a sudden, my tall, slender, statuesque mother fell to the ground! I reached my little hand to help her up and I remember thinking that I should be embarrassed at her falling but I wasn't. I glared around at the other kids daring them to snicker at her. I don’t know where that small display of lioness-like courage came from but I believe that was my first "Fight Like A Girl" moment and all of a sudden I felt a little taller and ready to handle what lay … [Read more...]

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Monique’s Fight Like A Girl Story (Lupus)

by 5 Comments
Feb
06
2011
Monique's Story (Lupus)

I've been sick, literally, since the day I was born. My real mom is an addict who couldn't get sober while pregnant. I was born early and addicted. The drugs that sent her into labor early, also magnified a congential heart defect that runs in my family. I had open heart surgery when I was 7. And I never looked back. I was completely unstoppable! I became trained in classical ballet. I was in jazz, tap, and gymnastics. I was so excited when I made the drill team in high school. We won awards on a national level - which allowed me to perform in the Main Street Parade of DisneyWorld, and with Dallas Cowboy Cheerleaders during half-time. I was working as a phleb for a nearby cancer center. When the fall semester was to start, I would be there for the nursing program. It all started with one migraine headache. The next month, I had two migraines. They increased to 3 a month. Before I knew it, I was barely over one when the next would hit. I had to leave my job. I got in to see a … [Read more...]

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Anabel’s Fight Like A Girl Story (Lupus)

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Jan
13
2011
Anabel's Story (Lupus)

Hello, I’m 34 years old. I was diagnosed with lupus about a year and 6 months ago. Since then, I’ve been in treatment. It started with pain on my knees and my energy was low. My job was to fill empty bins at a fast pace. Because of this problem, I had to go see my doctor and my test for lupus came.  It was positive and I needed to see a bone doctor who told me that I also have Rheumatoid Arthritis. Then from there all my life changed completely. I had to try several medications: Prednisone 10mg 1 every day, after that I was put on Hydroxchloroquine 200mg 2 times a day, then continued with another, Azathioprine 50mg 2 times a day. I sleep a lot and try to eat healthy and do exercise but it’s hard to when the joints hurt and at times I feel heavy and tired. Sometimes I’m good to go and hang out at church trying to be involved in something that can give me happiness. I sing and help care for children and teach arts and crafts. Meanwhile, my parents are learning … [Read more...]

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