A personal story is powerful – to those who tell it and to those who hear it. In the words of the lupus warriors and caregivers themselves come stories of hope and struggle.Share Your Story
The Power of Sharing Your Personal Story
Sharing your story of living with lupus and engaging in advocacy is powerful and empowering. Just one story can and does make the difference. Share Your Story
Need help on what to write? Consider the questions below as you think of what you want to share.
- How long did it take to get a lupus diagnosis and what were your initial symptoms?
- What are your current symptoms and what would you like others to know about lupus?
- How has lupus impacted your daily life and future?
- What has helped you manage lupus and have you engaged with any Lupus Foundation of America resources or programs?
- What gives you hope?
It’s hard for me to completely remember what my life was like before March 13, 2011, because the day I was diagnosed with Systemic Lupus Erythematosus changed everything in my world, and I am now a whole new person. I have also been diagnosed with Membranous Lupus Nephritis, meaning that I have level 5 kidney damage on both of my kidneys, and Sjogren’s Syndrome, which affects my skin and eyes.
When I began my junior year of high school, I knew I was going to spend the year worried, but I thought it was because I didn’t know how I would do my hair for prom or that I needed to figure out where I would go to college. The stress I underwent was on a completely different level than I could have ever imagined. I spent three months in and out of the hospital terrified that at any point they would tell me I had lupus.
When the doctors finally broke the news and informed me that I would need to change everything in my life, I was sure that I was in some sappy movie. I was heartbroken that I was not going to be able to spend my senior year with my closest friends, but rather in my house with a tutor. I am sick. It hurts to know that I am going to be battling it the rest of my life, but I am now filled with a strength that moves me forward every day.
That is the strength I carried with me as I decided to finish high school online and that I used to finish an entire year’s curriculum in two months. It is my drive to overcome that contributed to an academic scholarship to Lindenwood University and pushed me through my first year. I will rely on my perseverance as I move on campus this fall and when I become a teacher. I will use my experience to earn my Master’s degree in counseling and work with others that are struggling.
I have been fighting for over a year now. But until last month, my family and I thought we were fighting alone. At the Summer Jam Youth Retreat, I learned that the Heartland Chapter is out there fighting for the 50,000 of us living with lupus in the territory with as much strength, drive, perseverance, and experience as I use to fight for my own life. I also met other girls who are struggling from all over Missouri, eastern Kansas, and southern Illinois.
Meeting girls like Sam Powers has proven to me that together we are even stronger than I am alone. We were of all different backgrounds and ages. Sam is 11 and was diagnosed with she was 9. Sam’s story is different than mine, but we have a common goal. We want to personally overcome the challenge lupus has given us, tell the world about our fight, support others with the disease, and find a cure!
With the support of Sam and the other girls I met, I know there is nothing I can’t do. I may have different battles than my peers, and lupus may attack every organ in my body, but this disease will never strip me of my strength, drive, perseverance, or experience. I cannot convey in words how important that was for me to learn.
It’s amazing how often people stare at me and say, “You don’t even look sick!” I’m sure that many other people living with lupus have heard that line more times than they’d like to mention. Lupus is a disease that affects everyone differently. Most days, I run a fever, suffer severe joint pain, stiffness and fatigue. My hands, hips and toes hurt me a lot. I have trouble with inflammation.
When first diagnosed with Lupus, I felt my world crumble. I was a young mother of four active sons. Then, without much warning, I woke up to a living hell. One morning, I opened my eyes and realized that I couldn’t lift myself out of bed. Symptoms of swelling, fever, pain and fatigue sent me from one doctor's appointment to the next. I remember the day that I lost my sight for a matter of minutes. My hair became very brittle and would shed all the time. I was starting to feel nauseous most mornings. Doctors I went to for help seemed clueless! I heard, “Maybe it’s M.S., maybe it’s Hoskins disease, maybe you are just stressed…”, my body was weakening and I was nearly at the point of death as sudden weight lost of over 20 pounds occurred and burning sensations began to move all through my insides. It felt like someone had set my organs on fire, I lost hope and at that time wished I would just die.
Somewhere in between begging to die, an amazing thing happened in my life…I started to think about LIVING. Things I had never done, places I had never been and goals that had not yet been checked off my list begin to give me enough will power to continue fighting.
The last physician I went to for help threw my medical records across the table and said, “DeVonshae, I don’t know what the hell is wrong with you! We’ve got to do something or you won’t live!” He told me that the only thing he could think of was lupus. Just hearing the word brought fear to me. I had heard of people who died from lupus. I knew people often became wheelchair bound from the disease. This doctor ran all of the necessary tests. I am grateful because after the results came in I started taking 200 mg. of Hydroxychloroquine twice a day. It worked like a miracle drug for me. It took about a week or two before I started to feel like myself. My fever went down and stayed down. My body didn’t feel as achy and I found a renewed sense of empowerment to live my life better than before I had the diagnosis.
It’s been about six years now! I have fulfilled my dream to be a writer by publishing four books and writing for a local magazine. I help spread awareness about lupus to others by speaking at different functions, participating in lupus walks and helping to raise funds for the cause. I have returned to school to pursue another degree. There are still days when I have flare ups that keep me in bed, but I haven’t had to be hospitalized. The few flare ups I’ve had are nothing compared to that first major crisis so I count myself blessed.
I want to encourage those who are battling this disease to focus on living and doing things that you enjoy. It is possible to live a normal and productive life. Take your medicine and try not to get stressed because that makes symptoms worst. Remember, lupus is what you have, but not who you are!
Living with Lupus has become a daily journey that I could have never imagined for my life. In 1994, I started getting really sick. I started experiencing severe joint pains all over my body, swelling in my feet, face and hands along with crippling fatigue. Also, the rash that was once confined to my hands was now on my face, hands & parts of my body. I started seeing several doctors and none could explain what was happening to me. I suffered for at least a year with these on again, off again illnesses until it all finally took a toll on my body. Again, with no real explanation of what was wrong, the doctors were treating each symptom as a stand alone problem.
By the time I was finally diagnosed, I developed severe vasculitis and my kidney function was also deteriorating. Sadly enough my kidneys were damaged and will never work at full capacity. More recently a new symptom started. I began to have gran mal seizures. These episodes have been so very terrifying. I have had memory loss, fractured bones and a complete alteration to my life style. It takes the love and support of many including the awesome people at the Lupus Foundation who are there with any information that anyone might need. I will make it through, over and around this thing called Lupus as long as I have the Grace of God.
I was diagnosed with lupus some time in 2009. My initial thought was of sadness, fear, disbelief, helplessness, depression and ironically relief. By the time I was diagnosed, I had been through so much, and made so many adjustments; it was just the answer to the many unanswered questions. The process went on for years. Although, the first doctor I saw in the mid eighties suspected lupus.
Because I have several auto-immune conditions, 5 to be exact, my symptoms overlap and exacerbate one another. They include: brain fog, memory loss, headaches, migraines, depression, joint and muscle pain, overwhelming fatigue, insomnia, Gerds, skin rashes, ringing in the ears, tingling nerves, unexplained bruising, and dry eyes, mouth and skin. Before I was diagnosed, I drew a gingerbread man. This little man was covered from the top of his head to the bottom of his feet with innumerable issues.
I had to learn how to cope with lupus. A whole lot of prayer; paying attention to the signals that my body gives me; controlling stress; getting extra rest; moderate exercise; watching what I eat; regular yoga classes; taking my meds; keeping my doctor’s appointment; concentrating on helping others; wearing sunscreen, hats, long sleeves; and watching how much exposure I have to the sun.
Because, I was diagnosed with depression in 1979, I created a plan to control it. I only allow three days for my pity parties. It’s become essential to winning this battle. Not having the energy I use to have, and not knowing what to expect is the hardest part of this disease. Symptoms can change within the hour. This causes you to be apprehensive about making plans too far in advance. This can lead to battles with depression, not to mention the other emotional impact lupus has; like not knowing what to expect as I get older. Will I be able to take care of myself? Will I be a burden to my family? Will I have enough money for my medical care? And there is always the ongoing battle to fight depression.
I believe in God. I believe in His grace and mercy through my Savior, Jesus Christ. I believe that He will put no more on me than I can bear. I believe that the experiences we have in life are for the purpose of helping others. I’m always helped when I take the focus off of myself. Knowing there are others who need the benefit of my experience, helps me to move forward. I’m inspired to be a good example for others.
I am an active volunteer for the Lupus Foundation of America. I attend as many support groups as I can. I speak at health fairs. I raise money for research. I’m a volunteer for the Walk To End Lupus Now™ every year. And, I teach a monthly yoga class for the Lupus Foundation. During part of this tenure, I have donated my payment back to the “Patience Assistance Fund”.
My involvement with the Lupus Foundation has introduced me to some dynamic people. The staff at the Heartland Chapter is an amazing team that shows their dedication to promoting the awareness of the plight of those of us who live with this disease. We are supplied with updated reading materials. We are given opportunities throughout the year to participate in discussions with professionals of various genres to help us understand our disease and how to cope with it. And, more importantly, they always treat us with respect, kindness, and genuine concern.
Some ask me why I support the Lupus Foundation financially. Simply, it helps me to realize that I am doing something to help bring an end to this terrible disease. Fund raising represents “hope”. Hope for a cure; and I’m a part of that hope. Fundraising means fighting. I see myself as a warrior fighting the enemy, lupus. When fundraising I am doing something to help others, while helping myself. I have met many new friends who walk the same path and understand what I go through, and when we are together, we are one.
Last, but certainly not least, I know that the funds will be used to bring the dilemma of lupus to the national spotlight. It is our goal to see a response which promotes a level of awareness that will stir the consciousness of our nation to commit to finding a cure with a level of urgency never before seen towards this mysterious, devastating disease. When the funds we raise, are matched we see the benefits multiplied resulting in more help towards defeating this disease. So, donations are a must! This battle is not an easy one, but it is one that can be defeated. Our commitment to the fight is the answer to bringing about the demise of lupus.
You can be a part of that hope with me by getting involved, donating, and sharing your lupus story.
During the fall of 2012, I started noticing several changes with my body. One distinct change I noticed was the significant decrease in my energy. Most days, I just wanted to sleep but I continued to push through for my son who needed me. Then later in the fall, I noticed what I thought was a “stiff” neck but for two weeks I couldn’t sleep, walk, or even move my body in a normal manner where looking over my shoulder required me to move my entire body.
During December of 2012, on Christmas Day I started having what appeared to be stroke like symptoms coupled with a rash that was in the center of my back. During the next several days, I did nothing but sleep…but I was really nervous and thinking could I actually be having a stroke at 35 years old??? The struggle became so apparent to my mother that on 12/30 she took me to the ER and guess what they told me…I had a bad case of arthritis and released me to go home and rest. During my follow up visit with PCP, she remained puzzled with my symptoms and my test results. In addition, my hands started to claw up for days at time making it hard to use the computer at work. By now it is the end of February 2013, still no diagnosis and new symptoms happening often. In March 2013, I went to my PCP again and I told her full of emotion, something is wrong with me! Can you please get to the bottom of it??? She then referred me to an orthopedic doctor who specialized in hands; because still after two months they were clawing up. The orthopedic doctor also remained puzzled with my hands but immediately sent me to the hospital to have additional test where they checked my blood again...
On April 16, 2013, my life was changed forever. On this day, I sat worried about why my test results required me to meet with a new doctor, a rheumatologist to be exact, who specialized in infusion treatment. I sat in the patient room nervously waiting for him to enter the room. I then started praying because still I just simply didn't know why I was there and what he was going to say to me. He entered the room with another physician and his assistant. He introduced himself and his staff...then uttered the words ma'am I am sorry but you have Lupus. My face dropped and tears began to flow. His assistant explained my test results were still unclear of the severity but they were sure not only was it affecting my skin a very obvious rash was evident on my back but my joints had been severely swollen for months. He continued to state the autoimmune disease has No cure and you could die from complications. As any normal person would ... All I heard was "die from complications." I was shocked, numb, and alone. He started me on PURE steroids, plaquenel, and scheduled me for infusions at my next visit.
I left the office thinking why me... I got in my car and I prayed.... I said LORD, I want to give you glory but with this one I don't know how I will...WHY ME???
LIVING WITH LUPUS
My first chapter was a bit of a trial and error, going to the doctor rheumatologist every other week trying several different types of treatment including a trial of infusion therapy. Even after all the meds, I really was struggling with how my body was showing little to no improvement. I was still really achy, swollen and my energy level was always in question. I began a rapid downward spiral to depression. At this point, I claimed the disease and had no fight in me to overpower it. While traveling for work later that year, I became very ill. I was in a place where I really didn’t know anyone but those I worked with. I was very swollen as my feet were beyond recognition and I was unable to wear anything but my CROC flip flop and it hurt really bad to walk normally. I called back home and expressed to my mom how sick I felt and I was going to see if I could come home earlier…I was REALLY SICK IN FULL FLARE UP!
My dear friend and mom encouraged me to get a new doctor; particularly my mom wanted me to go to her PCP. He referred me to a rheumatologist that worked on his team. I started a number of different medications including blood pressure, steroids, plaquenel, and prescription form of IBprophen for about a year. I made a commitment to change my diet, eliminating foods that increase inflammation, for example fried, greasy food. Increasing foods such as broccoli and strawberries that decrease inflammation. In addition, I expressed to both doctors that I would like to work to be medication free in the future…They agreed to work with me to reach that goal but I must be fully committed.
The testimony/how I live today…
Today, I wake up and say to myself Why not me? God is using me to SHARE a testimony…
Through one of the most difficult times in my life God continues to provide:
• New Job…reduced stress
• Diet/Healthy eating…healthier than I was a year ago
• Team of medical professionals..No meds for the last 8 months
• INNER CIRCLE CHANGES
• Psychotherapy…D. Harris has been a blessing to filling my CUP
• Valuing the life I have focusing on TOTAL HEALTH: MIND, BODY AND SPIRIT
I have lupus, BUT it doesn't have me!
My name is Jessica Berry. I am fifteen years old. When I was eleven years old I was diagnosed with lupus. I was also diagnosed with muscular dystrophy. I’m not the only one in my family affected; my mom also has SLE Lupus and muscular dystrophy.
Lupus has affected pretty much everything I do, from picking up books, to taking loads of medications in the morning and right before bed. There are times where I just can't get out of bed or can't move because of the pain I am in. My symptoms range and unfortunately I have several; like, the common ‘butterfly’ rash on my face, fatigue, swelling of the joints, Sjogren’s syndrome, mouth ulcers, on again-off again anemia, and Reynaud’s syndrome. Oh, and don’t forget the neuromuscular disease I have to live with.
Going to school has been the hardest struggle for me and catching up with all the work. I battle with trying to keep friends and wanting to give up. My friends often don't understand that stress can exacerbate my lupus and totally break off the friendship. Half the time I want to give up because I feel as though my only purpose in life is to be my doctor’s guinea pig (even though my doctor is awesome!!!). Living life with lupus is really hard. I get depressed because I can't do everything other kids my age can do. If I could do one thing that I currently cannot do, it would be to dance like my little sister. I had to learn that Lupus is a part of me and I can't change that. I had to accept that which was really hard.
My mom gives me hope and strength. She is the strongest person in the world!!! When I grow up I want to study lupus and find some sort of treatment to alleviate lupus symptoms. That or become a Pediatric Rheumatologist to help kids like me who are struggling with their lupus. Back to my mom, she does everything a normal person can even with muscular dystrophy and lupus. My mom has helped me every step of the way and has become my best friend.
The Lupus Foundation of America, Heartland Chapter has helped in my fight by giving me hope. I got to go to the Summer Jam Youth Retreat, a summer camp just for girls living with lupus. Attending camp gave me friends that I can vent to and have my own little support system. We all struggle with the same things. The Heartland Chapter has helped me immensely in raising awareness of lupus.
I want to inspire others so I keep fighting. I spread the word to others who don't know what lupus is, and I speak of my struggle. I show them that I can do everything a "normal" person can do, just in a different way.
When I started having problems, my grandma was sick and my great grandma and close friend had both died. I was afraid to tell my mom about my issues, because she was so worried about grandma. My whole body hurt everyday and it was very difficult for me to sit in my chair, which made it hard for me to concentrate at school. I was in gymnastics at the time and thought this was causing my pain, so I quit going. I knew it was bad, when my pain did not go away.
After I finally told my mom about my issues, she took me to my doctor, where I was put through a lot of tests. It is miserable to be in the hospital when your friends are hanging out and having fun, while you are getting needles stuck in you and getting tests done by scary looking machines. At 8 years old, I had two biopsies and fought through when the medicine that put me to sleep made me sicker.
I was finally diagnosed with lupus at 9 years old. In the year before my diagnosis, I had spent more times than I can count in and out of the hospital. However, I am relieved to know what is wrong with me. I started taking plaquinel in January 2011 and I am feeling much better. I know that lupus has changed my life, but my life is my life, I will adjust and deal with it. I am a fighter and a survivor.
Dr. Syed, a board member for the Lupus Foundation of America, Heartland Chapter, is my Rheumatologist and I really like her. She answers the millions of questions my mom has. I have learned so much from her and the Lupus Foundation of America, Heartland Chapter. I am now able to tell others about my illness and what it means to have lupus. I hope I can help others by telling as many people as possible about my disease!
2016 has been the worst year I have had since diagnosis. In June I started having significant issues with breathing, my heart rate was out of control and my blood pressure was all over the place. After a week in the hospital and seeing multiple new specialists, I was discharged.
I was traveling to St. Louis every two weeks to see my doctors and getting lab work done during those visits. I was taking 20 pills a day and sleeping about 20 hours each day. I was losing myself and my life. My mom fought regularly trying to get me the help I needed. She begged the doctors to do something…anything. She told them they may feel this is an acceptable life for me, but as my mom there was no way she was accepting this.
There was discussion about how to move forward, calls to Mayo clinic and second opinions. Finally it was decided they would try to get me into a new research trial for children with lupus. I was accepted into the program and in March started my journey as one of the 100 children world-wide that could possibly be receiving Benlysta. This drug has been approved for adults but not children. When my doctor went the route of getting it approved by insurance, she was told, “It costs too much money to give to children.” My doctor was disgusted, just as my family and I were. We finally got it approved, and I am feeling the best I have in over a year. This is the “cruel mystery” of lupus. Things change in the blink of an eye.
I am Patricia Dees and I am a Lupus Warrior. I have been battling lupus since 2008. It started with symptoms that are common for people with lupus—swollen joints, severe headaches, rashes on my face and body, relentless fatigue and kidney problems. The doctors and I chalked it up to the stress of being a newly single mom of four children, working two jobs and trying to make ends meet. Several months later I suffered a massive seizure and ended up in the emergency room where I was finally diagnosed with lupus.
Since being diagnosed, life has been a rollercoaster. Some days are harder than others. Some days I can’t even get out of bed in the morning because the pain and fatigue are so overwhelming. Other days I feel better and am able to get up and get moving. That is one of the hardest aspects of living with lupus, it is difficult to manage and so unpredictable that it makes it difficult to lead a normal life.
I didn’t talk much about my disease at first because many people have never heard of lupus and don’t understand how serious it is. After many years of fighting lupus alone, I was introduced to the Lupus Foundation of America, Heartland Chapter and met many others who are also battling lupus. Through participation in their lupus support group and education conferences, I have learned how to better cope with lupus and how to manage the symptoms. I wanted to get more involved and help others who are also living with lupus so I became a volunteer, ambassador, advocate and a fundraiser for their annual Walk to End Lupus Now.
The chapter really came to my aid when I needed them the most. As a single mother on disability, I feel the daily strain of having to choose between medications, household and personal needs, and other necessities, especially since my 15-year-old daughter was also recently diagnosed with lupus. When the chapter staff heard I was struggling, they stepped in through the organization’s Patient Assistance Fund and helped me with a utility bill payment which prevented the utility from shutting off service. It helped to lift a huge burden from my shoulders so I could focus on getting healthy and travel to watch my oldest daughter graduate from college.
As I begin my reflections, I can’t help but become overwhelmed with gratitude for the people who give generously to the Heartland Chapter so they can assist me in my battle against this mysterious disease.
This is how my life felt from 2000-2006. I was sick. I was in pain. I wanted answers but no one had them.
My name is Laura, and this is my story. From High School and into College I had been misdiagnosed . In 2006, while doing blood work for mono they found some levels to be very off. I still remember the doctor telling me to go home and pray that it was MS and not lupus. I was shocked that he would say something like and instill that fear in me. Once asked if I had any history of lupus in our family…it all started to make sense. Yes. We have a history of lupus throughout my father’s side of the family. Finally some answers that I wanted. After all the tests came back positive, they confirmed I had active Systemic Lupus Erythematosus.
After trying many medications of Methotrexate, Imuran, Plaquenil, Benlysta, steroids, multiple pain meds, and every holistic method, vegan, vegetarian, paleo method you can try…I am still trying to understand the mysteries of lupus. We are still working to find a combination of the drugs that will hopefully slow down the disease and manage the chronic daily pain. Currently I go every 4 weeks to get an infusion which I get through a power port placed in my chest and I do chemo weekly. It is time consuming and very humbling, but I am still alive and I still have a chance to show my family and friends that I won't give up this fight.
Now at the age of 33 I am finally speaking out about this horrible disease. It's taken me 10 years but I am finally to a stage where I want to share my story in hopes that others can relate and see that they are not alone. You can have a family, you can have a career, and you can have a life which is pleasing to the Lord. It may not be anything like you once planned but it is still beautiful.
I am committed to raising more awareness of lupus in hopes that there will one day be a cure. This is why I signed up for the Walk To End Lupus Now and started a team: By His Stripes. One day there will be a cure, until then we will do everything we can to Help Solve the Cruel Mystery.
We can solve this cruel mystery…we just have to stick together and work hard. Share your story…share my story…raise awareness, raise funds, and beat this disease!
Senior year should be a time of fun and celebration of years of accomplishment of my education, but something else happened that changed my life forever…I was diagnosed with lupus. I was 17 years old faced with a chronic disease that could end my life early, how do you handle that?
I was fine and one day woke up with severe aches and pains that affected my joints and limbs and from one day to the next a different part of a checklist of symptoms that described a lupus patient and I did not fit the mold. Weeks after dealing with this pain it just suddenly went away so I thought it was just a fluke, so I went back to my day to day life.
Weeks later I started feeling like I had the stomach flu, throwing up off and on and very lethargic. One evening I was sent home from work because I looked so ill. Hours later my mom came home from work and took one look at me and told me we are going to the Urgent Care. Test after test, stick after stick until it was time to close down, the doctor finally told us we needed to go to ER at St. Luke’s hospital because I was going into renal failure. Overnight my life changed, forever. I was introduced to my current Dr. Robert Schneider who helped save my life. I was hooked up to IVs and bloated to a new size 14 from a size 10 over night because my kidneys weren’t working. Dr. Schneider’s spoke to me as an adult who had to make health decisions to save my life. Did I want to be aggressive which may have more side effects or take the slow, easy route and keep deteriating until I eventually may be saw results? I was young and wanted to LIVE, I took the aggressive route. This meant for 2 years I would do chemotherapy. Not the same level as cancer patients, but it came with the same side effects-nausea, weakness, and hair loss. I would go to the cancer center once a month for a year and get an 8 hour IV drip of a cocktail of drugs. For the first hour of treatment I would wear a cold cap on my head to try to prevent hair loss. Treatments would taper off to 6 months-once a month, to 3 months-once a month, to none.
For the remainder of my senior year I was home schooled because my immune system was so fragile I could not be exposed to a place with so many germs. I had to quit my job because I worked with kids. I became the girl in the bubble. Thanks to my early hour credits I could still graduate with my class. Being blessed with great friends I had photo taken of senior moments/special; events so I could have those memories too. I was able to go away to school, MIZZOU, which made my mom so worried at first. My freshman year once a month on Friday I would get picked up by my exhausted mom after a hard day’s work to go home for my treatment. If I was to sick or weak to go back I would miss some class, fortunately I had professors who understood my situation. Once I could bring my car up sophomore year I would drive home myself. I had a roommate I had been friends with since 4th grade so she knew what I had been going through and she took care of me. I have always been private about my Lupus so no one knew about my disease. I didn’t want to be known as the sick girl or scare people because it is auto-immune disease. I had a GREAT time in college like everyone else, except I had lupus and was in hidden pain at times or extra tired; my STRONG inside voice always helped me push through.
Along the Way
Over the years I have had various flares some worse than others. I have had some bone density issues because I was put on a steroid at my initial treatment plan which I have been on various doses depending on my lupus activity. I began to have excrutiating pain in my left hip so in 2006 I had a hip surgery called a core decompression to hopefully prevent the hip surgery I ended up having any way in December 2012. My lupus has changed form over the years not only affecting my kidney function that is always monitored but my skin as well. I started to get skin lesions or sores on my hands that made them look burned and was very uncomfortable. I had one form in the middle of my back that made it difficult to comfortably wear a bra or sit back in a seat at times. To try to treat the issue in my back I took cortisone shots to try to heal it and ease pain. Prednisone is a frog that reduces your metabolism and makes you heal slowly; it took years for my wounds to heal. Following the skin issues I thought I was in the clear, but Lupus snuck in their again and flared in my eyes. I started noticing light sensitivity print was hard to read, and depth was difficult to detect. I saw several doctors who could not say what it was exactly, one thought it was macular degeneration, but I didn’t fit that checklist either. I was finally told Lupus flared the retina in my eyes which caused my loss of vision. I was left with very little central vision and my peripheral is poor. I can drive, but I have to use blue blockers to block out maximum light. I wear glasses with a magnetic clip that is auburn in color that also blocks out light but it helps with my acuity to offset my loss of central vision. It was hard at first, scary because I was going blind and did not know what to do, how to stop it. I couldn’t drive and had to depend on my mom and husband to get around; this killed me inside because I was so independent. I remained focused and determined to beat this and God is good all the time because I have enough vision to function, normally and independently. I use my eye ware and visual, technical equipment to help me in other areas.
In 2014 I had my most severe battle with lupus, but yet again I overcame it. Super Bowl Sunday I was taken to the ER because I felt more pain than usual and was extremely weak. I had already been off from work due to more lupus sores that had formed on my back in October that had to be surgically cleansed. This surgery caused me to endure daily bandage changes on my back to fill a whole left from the surgery. Once I got to the ER I learned my blood pressure was dangerously low and they couldn’t figure it out. I was put into an ambulance and rushed to the hospital where my primary care doctor was. Still Dr. Schneider’s from my initial flare up 20 years ago, he is family to us. My condition spiraled from there. I ended up being intubated and placed in ICU. The full picture even now is foggy because I don’t remember much of it. This was the first time doctors ever told my mom I was not going to make it. I am a fighter, I did wake up slowly. I was in a hospital bed so long I had muscle atrophy. After all of that, now “I CAN’T WALK?!!! I left the hospital February 28th to be taken to a rehab center to learn to walk again. This was the hardest I ever had to fight and dig deep for my STRONG inside voice to push me forward. I had intense therapy 3 times a day. I worked my way from a wheelchair, to a walker, to a cane and now my own two feet.
I have lived through quite a lot in my 20 years of lupus but I have survived it. Every day is a gift because there are many who have lost their battle with the disease or who have more severe symptoms than me so they cannot enjoy life like I can. I could never be where I am in life without my beautiful angels around me who push me I the right way to keep fighting. My family: Laurel, Mom, my sisters, my auntie, my husband, and wonderful friends. They all care enough to check in on me, pray for me, and tell me it will be alright. I don’t know what may happen tomorrow so I don’t spend time today complaining about my pain or discomfort, I get up and take one step at a time and look forward to a great day because I woke up.
I was diagnosed with lupus nephritis in March of 2016 when I was 13 years old. My lupus was finally diagnosed after having a kidney biopsy in the hospital. That was not fun. I had to spend several days in the hospital recovering from the biopsy and starting my treatment. I felt like the world was crashing down on me. But, I figured if God gave me this challenge, I was going to learn about the disease and do what I could to beat it and help others living with lupus.
My family and I attended several conferences hosted by the Lupus Foundation of America, Heartland Chapter and participated in their St. Louis Walk to End Lupus Now. That is where we learned about their Summer Jam Youth Retreat —a weekend summer camp for girls like me, who are living with lupus.
I was nervous about going at first, but was able to bring a friend to camp with me who wanted to know more about what I was going through. We learned that there were other girls who were also living with the challenges of lupus and that the disease affects everyone differently. The other campers shared their experiences and that helped put my mind at ease concerning some of the treatments that were being planned for me. We shared a lot of laughter and tears too. I made new friendships with others who were going through what I was going through.
Trout Lodge was a great location for camp and provided a stress free environment. I really enjoyed the activities such as archery, canoeing, karaoke, and singing around the campfire. The most powerful part of camp is the bond we all share. Although we are only together for a few days, it feels like we have known each other much longer. Knowing I am surrounded by girls who have endured similar hardships is comforting and makes me feel less alone.
Even though I was nervous about attending the retreat, I didn’t want to leave at the end of the weekend. I look forward to returning next year and hopefully, for many years to come. I know this will be a lifelong battle, but this retreat has helped tremendously in my healing.
My name is Curtisha Anderson. I was diagnosed with Systemic Lupus Erythematosus in 1991 at the age of 14. My initial symptoms were extreme weight gain, fatigue, and high blood pressure.
Shortly after diagnosis, I started emergency dialysis because Lupus had affected my kidneys. I had never heard of lupus and I was so afraid. I questioned whether I could have a normal teenage life. How would I live life with such a cruel disease?
I initially did in-center hemodialysis, but found that it limited my ability to attend school. I wanted to take charge of my life, so I began training to do peritoneal dialysis at home.
As if dialysis wasn’t enough to deal with, I began to receive Cytoxan infusions, which meant that I spent a lot of time in the hospital. Cytoxan is actually a cancer drug (chemo), but in lupus patients, it’s used to treat lupus nephritis.
After being on dialysis and Cytoxan treatments for 3 years, I received the awesome news that I had regained enough kidney function to live my life off of dialysis. I was so excited!!! Other than the occasional flares, I managed my lupus very well. I followed my doctor’s orders and continued to educate myself, so that I could be in optimal health.
I was able to stay off of dialysis for a little over 22 years. In 2015, my nephrologist informed me that lupus was starting to attack my kidneys again, and that I would probably have to start dialysis again in the future. I wanted to be proactive, so I decided not to wait. I started dialysis for a second time.
On July 15, 2017, I was blessed to receive the ultimate gift; a transplanted kidney. Because of this gift, my life has forever been changed. The transplanted kidney has caused my lupus to go into remission, and I feel great.
This journey has been long, hard, and rough, but I’m not sure that I would change it. I have had the pleasure of meeting some really great people along the way. I have connected with the Lupus Foundation of America for support and resources. I have learned so much about myself through this entire process. I have become my best advocate and I advocate for others. Life is good!
My name is Gail Ferrer, I’m from St. Louis Missouri and I am a LUPUS WARRIOR! I have been living with lupus for more than 27 years and I’ve been involved with the Lupus Foundation of America, Heartland Chapter for 25 years.
Although I was diagnosed 27 years ago, I believe I’ve had lupus since I was a little girl. My family thought I had arthritis because my joints would not only ache but sometimes they would lock up! I remember once my left knee got stuck in the seated position. It stayed like that for maybe two weeks or more. The doctors couldn’t explain it, nor could they unlock it (and believe me they painfully tried). It finally unlocked on its own. As I got older my elbows, thumbs and fingers would lock sporadically without cause, it seemed. Therefore, I saw a Rheumatologist way before I was diagnosed. I was “watched” and experimented with, because “it was something there” they would say but not enough to diagnose anything specific!
When I found out I had lupus my life didn’t actually change that much in the beginning. Initially I was so relieved to have a name for what was wrong with me. I was excited actually because now I know I was not imaging things! As I gleaned the little information that was available at that time and probed my doctors, I began to get disappointed and depressed. I was overwhelmed!! I had to back off being prepared for what could happen and take it as it came. Now that I think about it, that word “INCURABLE” blew my mind!
As a wife and working mother of two very young boys, I feared the outlook was hopeless. I was actually diagnosed with lupus in June 1990, while pregnant with my youngest son. Lupus showed up in a BIG way!! I was put in the hospital 3 maybe 4 times in a 7-month pregnancy. Yes, the baby came 2 months early--I was very sick and so was he. I already had a Rheumatologist so my doctor knew where to start treatment. This was the start of my diagnosed lupus fight!! I was scared to death for me and my family.
The hardest part of lupus is the uncertainties of flares, the medication and the numerous doctors’ visits. As the years went by and with the coming and going of quite a few doctors I began to do better. Since then I have been diagnosed with several cross over diseases, like Scleroderma, Neuropathy, Raynaud Syndrome, Lumbar Stenosis and Pulmonary Hypertension. With each new thing came a new pill. After 10 or more years, I began to know more about this lupus thing and my attitude towards it changed. I no longer battled with getting rid of it but instead, I tried to focus on how to live my life in spite of it.
Lupus took so much from me that I decided I had to create a NEW NORMAL for myself or I would not make it. My new normal helped me to stop comparing myself to others or to the Gail before lupus. This new normal was more of an affirmation that reminds me I may start at a different level or can only do a certain amount, but I’m still ok! I became a lupus support group facilitator which made profound changes in my life. My focus changed and I was meeting new people who knew lupus intimately. Through working with the Lupus Foundation of America, the group discussions and just listening, I decided to stop hating lupus.
My Faith is my Hope and Strength! After much prayer and tears, I found out that sometimes I need help. I have a very good support systems in my life. I have friends with lupus that I can ask questions and family members who may not know the specifics about this disease but they are there for me. I have a team of doctors who know how LUPUS looks and acts on me. I also continue to volunteer for the Lupus Foundation! The Lupus Foundation has so much to offer those living with lupus at all stages of the disease. They offer teleconferences, workshops, doctor recommendations, support groups and much more.
I believe my journey with lupus and the fact that I’m still here is an inspiration to the people who know me. I love speaking at health fairs to let people see lupus working and, to let them know that lupus is not always a death sentence. People need to know about lupus. They need to know that it is a manageable disease more often than not.
My name is Jan Shelton and I was diagnosed with Systemic Lupus Erythematosus in May of 1995 at the age of 49. I was told that Lupus is usually diagnosed at an earlier age.
I am married and at the time I was diagnosed had 2 daughters in college. I worked full time as Vice President of Corporate Operations at a local bank. I was also an alderman for the City of Raymore, on the Board of Directors of the Raymore Chamber of Commerce, Treasurer & Board member of Foxwood Springs Living Center and involved in other community activities.
I had been sick for a long time with a number of illnesses. For example, I would get a cold that would turn into pneumonia, three times in a year. The extreme tiredness was overwhelming. I felt like everyone thought I was a hypochondriac and I felt like one, except I knew I was really sick. Why was I sick so often? At a routine visit to my OBGYN she asked if I would consider getting a second opinion and I agreed. She referred me to an internal medicine doctor. At that first visit, instead of giving me forms to fill out, he sat with me and asked me all the questions. When I gave a positive answer, he would ask follow-up questions. He ran lots of blood work and had me return in one week to discuss the results. One week later, the doctor told me he had narrowed down what he thought might be the problem - either Leukemia or Lupus. To make a final determination, I needed more blood work and he referred me to a Rheumatologist. I knew what Leukemia was, but had never heard of SLE, so I went to the hospital library and started reading.
At my first visit to the Rheumatologist, he confirmed that I had Lupus. He explained because Lupus is so hard to diagnose, doctors kept treating the symptoms without finding the root of my problem. He told me about the Lupus Foundation of America and the information I could obtain from them. In 1995-96, lupus attacked my heart, lungs and liver. It was at this time that things looked the bleakest. The doctor started me on an aggressive treatment to get my lupus in remission. I had to resign from all of my volunteer positions, and concentrated all my energy into just working and getting better. At the end of a work day, I was so tired that many times my husband had to help me get into bed.
The diagnosis of SLE was life changing. In a healthy person's life you don't know what to expect when you get up in the mornings, but living with lupus gave that saying new meaning. Each day can bring on a different challenge.
I was so blessed to have the support of my family. My husband took on all the household duties including fixing meals. My daughters would come home from college on weekends and help clean house and do laundry. After many months I was able to get my lupus in remission.
In 2005 I had a severe flare and my doctor told me I needed to de-stress my life. I could have a career or see my grandchildren grow up, but both were not going to happen if I continued on the same path. In October 2005, I took early retirement/disability. I got the lupus in remission again and have kept it there with just some minor flares. Through the years I have had flares, but I have learned to read my body and I know when I am doing too much.
Because of the tremendous support of my family and friends I have just celebrated 20 years of living with lupus. My husband and I have eight grandchildren from ages 8 to 14 and I am so blessed to be able to enjoy spending time with them.
But I always remember to listen to my body and not to overdo it.
Summer Jam Youth Retreat camper, Anna Taylor, was featured in the 2018 United Way of Greater St. Louis 2018 Campaign and shared her story.READ ANNA'S STORY