Lupus Stories

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Rashon’s Fight Like a Girl Story (Lupus)

by 8 Comments
May
15
2013
Purple Ribbon LR

One winter while I was in the midst of applying to Medical School, I began having muscle and joint pain in my arms, legs, and hands. The pain was accompanied by a fever of unknown origin. The symptoms came as a sudden onset, not gradual. I made several trips to the ER and had a ton of blood drawn to determine the problem. After a month of ER visits, I was referred to an Internal Medicine doctor for further evaluation. After a few visits and many labs, I was told I was severely anemic and needed to see an Oncologist and Blood Disorders Specialist. I was given iron pills that made me sick to my stomach so I was taken off of them. I had lost 20 lbs and I lost the color from my skin. I was so pale and skinny, I looked like death walking. I was tired all the time and the pain was so bad it was a struggle to get up and take a shower. I had to withdrawal my medical school applications because I was too sick to go on interviews in the secondary phase. My iron level kept going down, my … [Read more...]

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Sarah’s Fight Like a Girl Story (Lupus)

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May
13
2013
Sara's Story (Lupus). LR

My name is Sarah-Emma Sheehan. I’m 18 years of age. I live in Cobh with my family in Cork. There’s me, my younger brother Thomas and my parents, Mary and Thomas. I've been fighting like a girl for about 4 years now. I’ll never forget the day I noticed a rash on my arms at my brother’s confirmation. I had a really itchy rash all down my arms. I just blamed the dress I was wearing. A few days later the rash spread up as far as my chest. Within a few weeks my face was destroyed. I went from doctor to doctor and I was told the same thing over and over. They said that I was drinking too much Red Bull. So I stopped drinking it and tried to give it time so the rash would fade. Then I started getting really tired and stiff. I didn't think the were related to the rash at all. I just thought it was from being a 14 year old, staying up late and getting up early. So months past and I still had this butterfly shaped rash on my face. Eventually I was shifted to hospital to find out what … [Read more...]

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Stephanie’s Fight Like A Girl Story (Lupus)

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May
10
2013
Stephanie's Story (Lupus)

I suppose my story begins at age 16. I'm now 32 and I’ve been fighting this fight for half my life. I first started getting sick with symptoms like most others; swollen joints, fatigue, and doctors who couldn’t diagnose me. By 17 it was confirmed that I had SLE (systemic lupus erythematosus) and my kidneys were slowly shutting down. I began chemotherapy and a high dose of steroids. At 22, my kidneys shut down completely. With an extra 60lbs of fluid weight on me, I immediately began dialysis and was in congestive heart failure. I was angry at the world and after the first couple of years. I was so tired of fighting and I was ready to give up. At 25, I received what I thought at the time was the greatest gift ever, a kidney transplant. I finally felt like I had been through the worst and it was smooth sailing from there. For a while it was. I ended up getting pregnant at 27, which I had been told would never happen for me, and there was nothing in the world I wanted more. My … [Read more...]

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Cecelia’s Fight Like a Girl Story (Lupus)

by 7 Comments
May
10
2013
Cecelias Story (Breast Cancer). LR

I was diagnosed with Lupus in 1995, after several years of pain and swelling in my joints. I had seen many doctors, and was told by some that it was all in my head. When I was finally diagnosed, the disease had already started to flare and I immediately had to be put on a high dosage of steroids. I was only 19 years old, confused and had no idea what this disease was or what it would do to my life. I had a three year old daughter and the only thing I could think of at the time was, there is no way I can leave my daughter without a mother! I continued to stay on the steroids for a couple of years because my body was so immune to them, that when they tried to wean me off, I would have a bad flare. In 2000, they found avascular necrosis (dead bone) in my left hip. I then had to have my hip replaced. Shortly after my surgery, I went back to work and started to become very weak, tired and having so much swelling in my legs and feet that I could barely walk. My doctor scheduled a kidney … [Read more...]

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Brittney’s Fight Like a Girl Story (Lupus)

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May
08
2013
Brittney Story (Lupus). LR

I have always had what were thought of as minor health issues. I have always had aches and pains and they were always thought to be 'growing pains' or something along those lines. At about 13, I started to notice a change in my toes. They started to feel numb and I could see that they looked drained of color. It was a little uncomfortable but I tried to ignore it. After awhile though they started turning purple and would be so cold. I would walk around on my 'tippy toes' trying to get feeling back in them. I didn't know what was going on and it seemed to be getting worse. I went to see my pediatrician who told me I had Raynaud’s and that I just needed to keep myself warm and that would make things better. I started to dressing in warmer clothing all the time and it wasn't getting better. It started to creep into my fingers and after many months it was so bad that I went back to my doctor to ask if there was anything else I could do. He noticed what I thought was a 'weird hole' … [Read more...]

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Gayla’s Fight Like a Girl Story (Multiple Sclerosis and Lupus)

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May
06
2013
Gayla's Stroy (MS and Lupus) LR

I am a 44 year old woman who is fighting multiple sclerosis and lupus, which has caused multiple other problems. I try to stay positive for those I love, but find it hard on some days. I have 8 grand-babies that I would like to see more often, but my pain stands in the way. There is a lot more living I want to do, but have those days that I feel like I can’t keep going. I am needing a life line. Any suggestions for me would be greatly appreciated. I don’t want to seem weak to my family so I was hoping I could let my wall down and get help from people going through far worse problems than me. Gayla Jackson Oklahoma Submitted 5-8-2012 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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Debra’s Fight Like A Girl Story (Lupus)

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May
06
2013
Debra's Story (Lupus)

I have been feeling bad for about 4 years, and I kept telling my doctors how I felt. They said I have high blood pressure and I'm overweight. Three months ago, I went back and told my doctor about my joints hurting, the rash on my neck, and that I am tired all the time. Also, my fingers would lock up. So I had  blood tests run, and they came back as LUPUS! I have never heard of lupus.  It's been three more painful months and I can’t see a doctor until 9/16/2012. So I am trying to FIGHT LIKE A GIRL! I just wish I knew how to handle the pain, but I am NOT GIVING UP! Debra C North Carolina Submitted 5-2-2012 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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Cindy’s Fight Like a Girl Story (Lupus)

by 2 Comments
Apr
26
2013

In March 2012, I was diagnosed with Lupus. I had been sick for over a month with a fever, achy joints, and  a rash all over my body. So I went to the emergency room. The hospital staff said I was going to stay for a couple of days. At the end of the third day, doctors came in and told me that they had found I had lupus. I actually shut down and was depressed for a couple of days. Not knowing what exactly 'Lupus' was, I did what anyone would have done, I searched the internet. Then I found  I had all of the symptoms. Now here I am with this disease and I try to explain to my family what I go through day by day. My sister in law, Maria, has been my biggest support. She had cancer so she can relate to my illness. I’m still fighting with myself about this and I get depressed and mad, and I ask 'why me?'. I’m glad I have found this Fight Like a Girl support and info. Thank you. Cindy A California Submitted 04-09-2012 The informational content of this article is intended … [Read more...]

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Raquel’s Fight Like a Girl Story (Lupus)

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Nov
18
2012
Raquel's Story (Lupus) LR

My name is Raquel and I was diagnosed with lupus SLE last year in May 2011. I am still dealing with understanding what is happening to my body. I am 43 and my doctor told me I more than likely have had lupus for awhile and I was being treated for my symptoms thinking they were other illnesses. I was always sick and seem to take longer to recover than others. I was having trouble at my job because of the time I was missing from work. The more I pushed myself the sicker I got. I left my job in April of last year. I was at my job for seven years and I felt like my co-workers thought I was lazy, faking, or missing work for no reason. I am a hard worker and although I got my work done efficiently it was never enough. My excuse for feeling rotten was I had gone through a divorce in 2008 and just figured I was depressed and overweight. I made the time in between jobs to go to the doctor/doctors to figure out what was wrong with me. I knew nothing about lupus and I was shocked when I was … [Read more...]

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Laura’s Fight Like a Girl Story (Lupus, Mild Cerebral Palsy, Bi-Polar Disorder)

by 4 Comments
Jul
29
2012
Purple and Green Ribbons

As a kid, I always thought I had psoriasis, and I got laughed at for it. I also had mild cerebral palsy and bipolar disorder. I never, in all my life, thought I had Lupus! I thought I only had CP and the psoriasis. Well, I started having symptoms of bipolar disorder at age 17, but wasn't diagnosed with that until age 27. During the 2000’s, I would skip my period some months. I also started having frequent joint pain and I would feel wiped out sometimes. I just thought I was in my depressive phase of the bipolar disorder, which also runs in the family. Then, my mom and sister both had high ANA and later tested negative for lupus. Then, in the summer of 2010, my blood pressure was high, so I went to the doctor. He said that it was not high and ordered some blood work for me. A month later, he said my cholesterol was high and that I had a high ANA. Three months later, I was tested for Lupus, but wasn't formally diagnosed until October 2011. My rheumatologist is giving me meds this … [Read more...]

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