Lupus Stories

Emily’s Fight Like a Girl Story (Lupus)

May
23
2014
Purple Ribbon

My family, my friends, doctors, and even strangers, they have all seen my pain. I questioned the other day how many of them actually know what it's like to live with Lupus. I thought about it and in all honesty, I don't expect anyone to know what it's like, I don't think anyone can understand what it's like unless that is, you are actually living with it. But I also questioned, how many of the people that see my pain actually know where it's coming from, if they even know what Lupus is. So I asked. I asked my mom first, and she knew exactly what it was - an autoimmune disease, that instead of your immune system helping your body, it attacks it. Other answers varied from it's a type of cancer to it's just a disease. My definition of Lupus is much more than theirs. You see, let me take you into my reality. My diagnosis was in March 2009. I was in fifth grade. I didn't care when I found out, mainly because I did not have the slightest clue of what Lupus was. I don't remember much of … [Read more...]

Kamyiah’s Fight Like a Girl Story (Lupus)

May
21
2014
Purple Ribbon

Hey my ladies ! I am Kamyiah Blackmon and I am 15 years old. I found out I had lupus in late November of 2013. I remember (before finding out I had lupus) having inflammation in my joints all the time and they were stiff ALL THE TIME (I remember being in the grocery store with my mom and I would have problems bending down and getting things for her and my knees would be cracking)!! It was also very hard for me to breathe, I couldn't walk a half a block without breathing complications. I was also not so fun to be around because all I wanted to do was lay around and sleep (fatigue was also a huge factor) and people didn't understand my situation. I was sore all the time. It was very hard for me to move around, be happy, and focus. I even took days off of school because my lupus flare ups were so bad. Physically I wanted to give up and just sleep my life away but mentally I wouldn't let myself do that because I knew I had dreams and goals that I wanted to pursue in life. There were … [Read more...]

Chloe’s Fight Like a Girl Story (Lupus)

Apr
16
2014
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Last year when I had just turned 15, I had been through a year filled with the biggest twists and turns I had ever had in my life. I had taken a trip to Colorado for a youth leadership conference. When I got back I was very stressed from the recent news that my grandmother had to be put into a nursing home. This had taken a toll on me for I had been helping my mother take care of her for the past year as she suffered from dementia. However, I noticed a decline in my own health as I had some strange symptoms. A few days later I ended up in the ER and was hospitalized. The doctor told me that I had been diagnosed with lupus. This changed my year so much. I fought through it however by finishing my school year with honors and fighting to finish my year of dance and participate in my dance recital and I did it! However, by the time that fall had come around the medication I was on had made my hair weak and caused it to fall out and to break off. I ended up wearing a wig for my sophomore … [Read more...]

Alex’s Fight Like a Girl Story (SLE-Lupus)

Jan
29
2014
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My name is Alexandra Seipp but everyone calls me Alex. I am 20 years old and when I was three I was diagnosed with lupus (SLE). I spent thee months in the children's ICU before the doctors figured out what was wrong. I was in remission for a few years but on my 16th birthday my doctor told me that I was no longer in remission. At the age of 16, as a female and a teen, my world came crashing down around me. I went from worrying about a dress for the prom and going out with my friend's to worrying if I would have enough time to do my homework after going to the doctor. I spent my 16th birthday in the hospital and for the past five years have been in and out of the doctors and the hospital. But what keeps me strong is knowing that not everyday will be as bad as today. My favorite quote is, "You never how strong you are until being strong is all you have." This quote has gotten me through a lot of bad days and it reminds me to stay strong and keep fighting. I have lupus but that … [Read more...]

Koyoda’s Fight Like a Girl Story (SLE-Lupus)

Jan
20
2014
Purple Ribbon

I am a 30 year old lady. I once had great dreams of living a happy life, a life with a good life partner, having good children, fulfilling all the ambitions of my parents, get a satisfactory job with good pay, and so on. But all my dreams collapsed when I was diagnosed with an autoimmune disorder with no permanent treatment. At the age of 24, I was diagnosed and declared to have SLE Lupus, an autoimmune disorder. I did not understand what really happened to me when my fingers turned blue when they were exposed to cold or when my skin developed rashes when exposed to the sun light. It took nearly a year and a half to figure out what the problem was. By the time I actually started treatment by the rheumatologist I was halfway dead, spending most of the time in bed unable to bear the severe body pains. I completed getting a good P.G. secured lecturer job and was getting a good salary. I was also about to get married but everything changed in a few days. I lost my job, my hair, my … [Read more...]

Cecily ‘s Fight Like a Girl Story (Lupus)

Oct
16
2013
piccy-for-mag

If you told me I would be as sick as I am now, I would not believe you. Ever since childhood I would get random symptoms, like pleurisy, but I had no idea what it was. When I was 14, I developed type one diabetes, an autoimmune disease. I hoped that would be the end of my conditions, but little did I know more would start appearing as the years went on. When I was diagnosed I had joint pain and hair loss that was unexplained. Everyone just put this down to the effects of the diabetes. I even believed it and the symptoms completely went away for a number of years. My diabetes was easy to control as I had slow progression, so I still produced a lot of my own insulin. Things were going well until I was about 17. I had a great boyfriend, I loved my college, was doing well in my studies, and loved my friends. I loved cycling, getting out and about, smoking, drinking, and partying. Everything seemed just fine. My health worries seemed to be mainly a thing of the past. I started noticing … [Read more...]

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

Sep
25
2013
me-and-drew

I am currently 22 years old. When I was born I was born three and a half months early and weighed and and a half pounds. When I was born I received blood transfusions. When I was 17 years old it was October 2008, I was a senior in high school. I was athlete I played three sports year around since I was 7 years old. I was scheduled to have my wisdom teeth out and when I woke up my hands and toes were black and I couldn't feel them. I then was rushed to the ER where labs and test were done, but I had to wait for the results. I waited about one weeks and the ANA test came back positive. One thing let to another. After the episode with my hands and feet, I developed shortness of breath. I was recommend to go to a rheumtologist near my hometown. The doctor informed me that I had SLE Lupus, with mixed connective tissue disease, scleroderma, and raynaud's disease. I was unable to finish my senior year in regards to playing all my sports. It got to the point where I was very depressed … [Read more...]

Jennifer’s Fight Like a Girl Story (Possible Lupus)

Sep
18
2013
IMG_20130908_222609

I am a 43 woman, working on getting diagnosed with lupus. I don't even know where to begin. I have had chronic leg aches for several years. Two years ago, I developed skin lesions of the face and arms. I was sent to a dermatologist and the sores were tested. The tests came back negative of skin cancer. Then blood work was done to test for Lupus. The tests came back with a high probability of Lupus. I received steroid cream, and the sores cleared up. My doctor and I chose to not partake in medicine since my leg pain was tolerable, I got better. During the last three months, things have started spiraling downhill. I am now suffering with such severe leg pain that it is hard for me to get up and walk. I am suffering from headaches, vomiting, depression, skin lesions on hands and arms, fatigue, coordination issues, and eye sight problems. My pain has also moved into my feet and hands. I am scared to death, I work 40 hours a week and it takes all my strength to go to work, … [Read more...]

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

Sep
16
2013
Durban-20130901-01795

Hi, I am a 21 year old girl living with lupus. It all started four years ago when I started my university studies. I would get a really bad headache that wouldn't go away with the normal "pain killers." In 2011, I woke up to a stabbing pain in my chest, I couldn't walk or bend down. I went to the campus clinic where they put me on oxygen for about two hours. I was okay after that until the beginning of this year (2013). I developed a very itchy reddish rash on my breasts, it later spread to my stomach and back. I went to a lot of doctors and hospitals to check it out. They did tests and gave me medications that still didn't work. They suspected it was allergies and they even suggested I buy an allergy bracelet, but the tests came back negative. I then started developing pain and inflammations in every joint in my body. I went to the hospital and they said I was too young to have arthritis, so it would probably go away with time. It wasn't until June that things got pretty serious. … [Read more...]

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

Sep
06
2013
DSC_0054

When I was 13 I was taken to the hospital for blue fingers and toes, and I had been sleeping more than normal. The hospital diagnosed it as Raynaud's phenomenon and lupus.  For several years after that, along with various doctors, I was diagnosed and undiagnosed. I had barely graduated high school due to so many absences. I plowed through several doctors, and was told never to have children because of the risk. I had petite mal seizures due to aspartame use. I had a daughter at the age of 23, but that would be the one and only. Her father wanted to put me in a cage and keep me safe, I wanted every good day used to the fullest. I had had mini flares and had found a doctor that acknowledged the fact that my immune system was indeed overactive, but was hesitant to label it. We avoided steroids for the fact that the side effects were worse than the symptoms. In 2003, I had my first major flare up. I had been sick with one virus after another for three months. I would walk into work … [Read more...]