Butterfly Flight Lori Heller

THE 7TH ANNUAL FLIGHT OF THE BUTTERFLIES

Flight of the Butterflies is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly Lori Heller

My name is Lori Heller, I was diagnosed with Lupus at the age of 39 in the year 1999. It took almost 10 years for me to get a diagnosis. I have been managing my illness now for 20 years. I was also diagnosed with Antiphospholipid syndrome, anticardiolipin syndrome, vasculitis , Sjogrens, and Hashimotos thyroiditis. My lupus affects my brain mostly . I have had 4 strokes since my diagnosis. Lupus pneumonitis, and many episodes of where I cannot move my arms and legs and this will resolve in a couple of weeks. Now that I am 59 years old it is affecting my cognitive and memory . I am pretty much home bound at this point and need assistance getting out . I have to use a cane or a walker to walk long distances. I have tried all the immunosupressants and failed . I am currently on a long term dose of Prednisone which is helping. But will start weaning soon due the long term affects.

I am a single mom with 3 adult children, and 3 grandsons. I worked as a Nurse since 1981 caring for chronic ill seniors. I then worked in the insurance industry assisting patients with chronic illness get the appropriate medical care. I stopped working last year due to advancement of my Lupus. My Rheumatologist tells me that I have severe lupus at this time. I am fortunate that it does not involve my kidneys and heart at this time.

I recently started a facebook page Lori’s Lupus Journey to start with education and awareness of Lupus. Many people know the name of Lupus but do not know what it is.

Lupus In Color is excited to present Lori Heller’s story to the world. As a Lupus Warrior he/she is actively promoting lupus awareness and wearing the armor of strength in doing so.

Lupus In Color Salutes you Lori Heller . YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!

FLY ON!

PLEASE SHARE Lori Heller’s FLIGHT ON YOUR WALL AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness

May 31 Lupus Fact

Butterflies of Hope Flight of the Butterflies

Spreading Lupus Awareness One Butterfly at a time

Let this butterfly flutter all over cyberspace!

May 31 Lupus Fact

Lupus Awareness Month Recap!

Lupus is one of the cruelest, most mysterious diseases on earth—an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. Research shows lupus is more pervasive and more severe than people think, and has an impact that the public doesn’t realize. You have changed that! By helping Lupus In Color raise awareness of lupus and showing support for those who battle its brutal impact.

Some facts we have shared about lupus through Butterflies of Hope Flight of the Butterflies…

• Lupus is a chronic and complex autoimmune disease, lupus can affect the joints, skin, brain, lungs, kidneys, and blood vessels, causing widespread inflammation and tissue damage in the affected organ.
• Anyone can get lupus, but it most often affects women. Lupus is also more common in women of African American, Hispanic, Asian, and Native American descent than in Caucasian women.
• An estimated 16,000 people develop lupus each year but Lupus awareness is lacking.
• Lupus is more prevalent than AIDS, sickle-cell anemia, cerebral palsy, multiple sclerosis and cystic fibrosis combined. Lupus affects 1 out of every 185 Americans.
• THE MOST COMMON SYMPTOMS OF LUPUS ARE: EXTREME FATIGUE (TIREDNESS), HEADACHES, PAINFUL OR SWOLLEN JOINTS, FEVER, ANEMIA (LOW NUMBERS OF RED BLOOD CELLS OR HEMOGLOBIN, OR LOW TOTAL BLOOD VOLUME), SWELLING (EDEMA) IN FEET, LEGS, HANDS, AND/OR AROUND EYES, PAIN IN CHEST ON DEEP BREATHING (PLEURISY), BUTTERFLY-SHAPED RASH ACROSS CHEEKS AND NOSE, SUN- OR LIGHT-SENSITIVITY (PHOTOSENSITIVE), HAIR LOSS, ABNORMAL BLOOD CLOTTING, FINGERS TURNING WHITE AND/OR BLUE WHEN COLD (RAYNAUD’S PHENOMENON),MOUTH OR NOSE ULCERS
• The history of lupus begins in 1828 when the French dermatologist, Biett described the disease. For the next 45 years, studies of the disease showed nothing more than descriptions that emphasized skin changes. In the mid 1800’s, Pierre Cazenave was the first person to have a comprehensive description of lupus. The disease was named because of a wolf-bite shaped rash (the butterfly rash) that appears across the nose and cheeks of many lupus patients. “Lupus” is the Latin word for wolf.
• Research suggests 4-22% of those with lupus are male. Men develop the same typical clinical manifestations of lupus as women, yet certain key symptoms may be different. Kidney and skin involvement, for example, may be more common among men with lupus.
• Lupus can be difficult to diagnose as the symptoms come and go and mimic many other illnesses. It can take 3-5 years for a firm lupus diagnosis. Lupus is NOT AIDS. Lupus is NOT cancerous, NOT contagious or rare.
• It took 50 years to create a drug that targets lupus specifically. The IV-administered drug belimumab, known as Benlysta, approved by Food and Drug Administration (FDA) in March 2011, is the newest lupus treatment. It works by suppressing overactive immune-system components known as B-cells.
• Lupus is a disease of flares and periods of quiescence (quieting). Lupus flare-ups can be mild, or they can be severe. At least 75% of people with lupus have arthritis and skin rashes. Half have kidney problems. Cardiovascular issues can occur more in people with lupus and this with lupus are also more vulnerable to infection than most people.
• May 10 is World Lupus Day. A day to help us celebrate warriors and spread awareness. World Lupus Day was created to help all to understand that this seemingly random grab bag of symptoms is actually a life altering, debilitating, chronic autoimmune disease suffered by approximately 5 million people worldwide, with 1.5 million of them living in the United States alone.
• About 50 percent of people with lupus have antiphospholipid antibodies. Antiphospholipid antibodies interfere with the normal function of blood vessels and can lead to narrowing of the blood vessels or blood clots. These complications can lead to stroke, heart attack, and miscarriage.
• Hair loss due to systemic lupus is known as “telogen effluvium” and is basically due to the insult of being very ill. Hair loss tends to be diffuse, however, it may be most pronounced around the front areas of the scalp. Patchy hair loss can also be the result of a flare-up in lupus disease activity. Hair typically grows back when lupus is well controlled or in a quiescence.
• Raynaud’s syndrome is a condition that affects circulation, causing decreased blood flow to the extremities (most commonly the fingers and toes). This can be triggered by several things, including cold weather and stress. Often the person’s fingers or toes will change colors due to the lack of blood flow, causing them to go white, red, blue or purple. Studies estimate that Raynaud’s occurs in up to one-third of people with lupus, usually resulting from inflammation of nerves or blood vessels.
• Living with a chronic illness like lupus can be incredibly challenging and taxing. Not just on your physical health, but on your mental and emotional health, too. It’s normal for a lupus warrior to struggle with feelings of grief, frustration, sadness or hopelessness after being diagnosed with a lifelong condition. Lupus can be unpredictable and its effects far-reaching, so when these feelings persist and a lupus warrior finds themselves struggling with anxiety or depression, they have to find ways to alleviate those feeling to know they are not alone in their fight. Many lupus warriors seek help in support groups, group and personal therapy as well as finding solace in sharing their stories with others.
• Photosensitivity, also known as sensitivity to sunlight, is a common symptom of lupus, as 40 to 70 percent of people find that ultraviolet (UV) rays worsen their symptoms and cause flare-ups. Photosensitivity can affect people with both cutaneous and systemic lupus, causing symptoms such as rashes, fever, fatigue and joint pain.
• There are 4 different forms of lupus, Systemic lupus, Cutaneous lupus, Drug-induced lupus & Neonatal lupus
• “Lupus headache” refers to a specific type of headache that occurs with Lupus warriors where the disease is active and there is actual inflammation around the brain that causes discomfort and headaches.
• Lupus Fatigue is real and over 80% of those with lupus experience fatigue. Complete exhaustion, for those affected by Lupus becomes a permanent part of life. Flare-related fatigue is a most difficult exhaustion. An unpredictable state of increased fatigue during increased inflammation and pain can last for days or weeks. Fatigue is one of the things that is hardest to combat.
• Because lupus can affect so many different organs, a wide range of signs and symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease. Symptoms vary but can include fatigue, joint pain, rash, and fever. These can periodically get worse (flare-up) and then improve.
• THE DIRECT COSTS OF TREATING LUPUS CAN BE ENORMOUS. THE MEAN DIRECT MEDICAL COSTS IN MODERATE OR SEVERE CASE OF LUPUS IS APPROXIMATELY $22,300-83,000. THOSE WITH A MILDER CASE OF LUPUS IS APPROXIMATELY $8,900-15,000. PEOPLE WITH LUPUS ALSO FACE HIGH ANNUAL PHARMACY EXPENSES, WITH MEAN COSTS RANGING BETWEEN $1,572-13,138.
• Chilblain lupus is a cutaneous form of systemic lupus erythematosus characterized by the appearance of painful bluish-red papular or nodular lesions of the skin in acral locations (including the dorsal aspects of fingers and toes, heels, nose, cheeks, ears, and, in some cases, knees) precipitated by cold and wet exposure.
• Lupus can affect the nervous system and brain. There are several terms doctors use to describe this: neuropsychiatric lupus (NPSLE), neurocognitive dysfunction, or central nervous system lupus (CNS lupus).
• Lupus nephritis is a type of kidney disease caused by systemic lupus erythematosus. Kidney damage is one of the more common health problems caused by lupus. In adults who have lupus, as many as 5 out of 10 can have kidney disease. In children who have lupus, 8 of 10 can have kidney disease.
• Lupus raises your chances of heart disease and stroke. Lupus causes inflammation of the heart or the sac that surrounds it. Lupus can cause inflammation of the myocardium, the muscle tissue of your heart.
• An extremely difficult diagnosis such as lupus can put you into so many emotional phases. Finding coping methods is crucial to keeping a happy life after being diagnosed with lupus. Some of the very first feelings include frustration, sadness, anxiety, and fear of what’s to come.
• LUPUS IS A DISEASE OF FLARES BUT EVERY LUPUS WARRIOR MAY NOT HAVE THE SAME TRIGGERS. A HEALTHY LIFESTYLE REDUCES LUPUS FLARES AND EVERY LUPUS WARRIOR’S FLARES ARE NOT THE SAME.
• The butterfly is the symbol for lupus. Although it is a beautiful symbol, the disease itself is very difficult to live with. The butterfly became the symbol because of the malar rash that presents itself on the faces of lupus warriors. It is called the lupus butterfly rash because of its butterfly-like shape on the bridge of the nose and cheekbones. These rashes are usually red or purple in color in either a blotchy pattern or completely red over the affected area, and can be flat or raised in nature.
• Having lupus can make everyday life challenging. When lupus is active, symptoms like joint stiffness, pain, fatigue, confusion, or depression can make simple tasks difficult and sometimes impossible. Since these symptoms aren’t visible, the people around a lupus warrior may have trouble understanding how they feel.
• Lupus fog is a general name for the cognitive impairments that often appear with lupus, including concentration and memory problems, confusion, and difficulty expressing yourself.These cognitive problems are often worse during flares.
• Sometimes lupus can affect men a little differently than women. Symptoms more common in men but also present in women: Pleurisy (inflammation of the sac around the lungs)•Renal (kidney) disease•Discoid lupus (reddish, scaly skin)•Hemolytic anemia (from the destruction of red blood cells)•Lupus anticoagulant (can promote abnormal blood clotting)•Seizures

Thank you for spreading lupus awareness with Lupus In Color. Please continue to get the word out about lupus. Support a warrior, gain and share understanding beyond lupus awareness month.

This is your thirty-first butterfly of hope.

We need awareness and a cure!

Encourage everyone you know to let it FLY!

#LupusInColor #ButterfliesofHope #FlightoftheButterflies #SpreadLupusAwareness #LupusFacts

May 30 Lupus Fact

Butterflies of Hope
Flight of the Butterflies
Spreading Lupus Awareness One Butterfly at a Time
Let this butterfly flutter all over cyberspace!
May 30 Lupus Fact

Sometimes lupus can affect men a little differently than women. Symptoms more common in men but also present in women: Pleurisy (inflammation of the sac around the lungs)•Renal (kidney) disease•Discoid lupus (reddish, scaly skin)•Hemolytic anemia (from the destruction of red blood cells)•Lupus anticoagulant (can promote abnormal blood clotting)•Seizures

This is your thirtieth butterfly of hope. We need awareness and a cure!

Encourage everyone you know to let it FLY!

#LupusInColor #FlightoftheButterflies #SpreadLupusAwareness #LupusFacts

Butterfly Flight Trude Wessel Thilesen

THE 7TH ANNUAL FLIGHT OF THE BUTTERFLIES

Flight of the Butterflies is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly Trude Wessel Thilesen

This year, specifically the 2nd of May I have had Lupus for 45 years.. And I would like to take part in your campaign Stories of Hope, releasing in May (World Lupus month).

My name is Trude Wessel Thilesen and I live south in Norway in a city named Arendal, and I am invisible sick. An early Spring day in 1974 my life suddenly changed to be worse. I came home from school and was terribly ill. My mother had only one advice and that was to seek a doctor immediately. The doctor concluded very fast that I was seriously ill and I got straight into the children’s section at my hospital (I was only 11 years old). There I got true several examinations and tests. I was there for seven weeks and I specifically remember that I got to celebrate our National Day (Costume Day) the 17th of May there. After the examinations was finished they still could not figure out what was wrong with me. But they knew for sure it was a rheumatic disease I have gotten, but not Rheumatoid Arthritis (RA). So they released me with the medicine Cortisone (Prednisone) in the “luggage”. After treated this way I got much better.

Yes, so much better it went for me that the doctors believed I had gotten well again. But, this was to good to be true, so when I had turned 16 years old this strange disease decided to bloom again with a flare. This time the doctors sent me to a rheumatic hospital in Oslo. They was specialists in rheumatic diseases. I was there for 2 months. Also there I went through many examinations and tests. The last day, the release day, I got to speak with a rheumatologist and this he was now about to tell me should change my whole life. I had got the rheumatic disease Lupus, Systemic Lupus Erythematosus (SLE). This was for me very unknown. What was really this? I finished high school, and which I recently had started that Autumn. So I was on my way into work possibilities. I become a secretary. My first work was at the local police office in my city (Arendal). And my last work was in the biggest hospital in our Capital Oslo.

Yes, I was so versatile that I took part in a travelling (guide) school in Spain. So in 1991 I decided to visit my sister in the States who was there for work. I traveled to New York round trip, alone. I was there for 3 weeks. And together with my sister and our friend we traveled to Washington, New York, Utah, Bryce and Grand Canyon, LA, Hollywood and Las Vegas at the same trip. This was an amazing vacation. But how it went with my disease Lupus, really? The answer is – terrible. I came home and after a week I got so sick again that the way to the hospital was the only solution. At that hospital (Oslo)l I was a regular patient. But my normal rheumatologist was on vacation so another took the management. I did know him from I was his patient when he worked in Arendal hospital. At the hospital it only went one way with me – down. The rheumatologist stated that I gotten a kind of a infection in my left hand. It looked like I have gotten a insect bites of a kind. To ensure he was right he consulted a surgeon. But this doctor absolutely did not agree with my doctor.

This was Lupus related he said . But despite of this statement my rheumatologist was sure he had the right answer. And he decided to give me antibiotics intravenous 3 times a day for the so-called infection. This was not for any help since the cause of my big health problem was my disease – Lupus (Wolf in Latin). So then my body reacted with activating my brain Lupus (CNS Lupus) and I completely stopped sleeping and started acting strange. This rheumatologist did not take any consideration into the fact that my Lupus was very active. I had fever and terrible pain. And besides that my hands was very painful since I had gotten Jaccaud’s Arthtopathy, a strange part of Lupus only a very few gets. So after a while, when I was not getting any better, he decided to put me into a psychiatric section, against my will, in another hospital. I was unaccountable he said.

So after my mother had tanken the long trip from Arendal to visit her sick and oldest daughter he made it up to her to follow me (by taxi) to this hospital, unfamiliar to me. I stayed there for one week, and it was horrible. My mother saw I was suffering. So after one week she took me out on her responsibility. So finally we could travel back home to Arendal. And I got the right treatment for my Lupus by my rheumatologist there, he did know me and my kind of Lupus.

CNS Lupus (Neuropsychiatric Lupus) is a serious condition which must be treated with Steroids (Cortisone). And one time it happened that they took it away from me. But, my mother told my rheumatologist who then told them to give it back to me, very dangerous to quit suddenly after long term use.

Finally I got better and I could start working again. This time I got a new job at children’s section at SMR (Senter for Mental Retardation). This was a very interesting work I had for 2 Professors. But suddenly I got sick again. I got a sore throat. And once again I had to go to the hospital. This time my body had got enough sickness. So I had only the solution to travel back home to Arendal. After one year back home I decided to apply for disability, in the age before I was getting 30.

In 1992 I finally get to know what kind of disease I had. Since this year the first conference against Lupus took part, and I was one of them who was delighted to come. And some years later, in 1996, I started a Lupus group in my county (Agder Lupusgruppe av NRF), a part of the Norwegian Rheumatism Association.

Thank you for your time.

Best Regards
Trude Wessel Thilesen
(Norway)

Lupus In Color is excited to present Trude Wessel Thilesen’s story to the world. As a Lupus Warrior he/she is actively promoting lupus awareness and wearing the armor of strength in doing so.

Lupus In Color Salutes you Trude Wessel Thilesen . YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!

FLY ON!

PLEASE SHARE Trude Wessel Thilesen’sFLIGHT ON YOUR WALL AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness

Butterfly Flight Dion Langley

THE 7TH ANNUAL FLIGHT OF THE BUTTERFLIES

Flight of the Butterflies is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly Dion Langley

I was diagnosed with Lupus back in 2010 and it was very painful at the time because I wasn’t aware of what Lupus was. I spent many days crying and wondering to myself why me? But I prayed and God showed me my purpose through me having Lupus. It’s a testimony for me and being able to share my story to others especially to kids and adults to let them know that having Lupus doesn’t stop me from achieving my dreams. My job as a professional drummer, I have to use my upper body constantly. “If I’ve had a show or just a long studio session, I know I will need a pain pill,” and certain shows can last for a long time depending on the venue.

“Sometimes your body is tired but your mind has to catch up with your body,” To relax my mind, I often takes a hot shower, uses a heating pad and spends 30 minutes listening to music, reading or watching a relaxing movie. I also experiments to find the right position for my specific pain: “I know I can’t lie flat a lot of times because of the pain and sometimes I have to lay in a uncomfortable position at times but people will never understand how my body feels at times.

It took me a while to adjust because I have to take a lot of meds daily and as a child I never been a fan of taking pills. Some days I feel perfect then other days I barely have energy to move and I feel as if I can’t get enough rest but that’s just how my body feels. So when I have days like that all I can do is just relax.

Over the years I’ve been hospitalized on various occasions and the recovery process is draining but I keep pushing because I won’t let this defeat me. I’m blessed to be able to play drums each day and share my gifts to the world.

I have good days and bad days but avoiding stress as much as possible helps both with the pain of lupus and with sleep. In my opinion “You cannot be stressed at all, “Surround yourself with positive people. Avoid people that bring you down. You have to get rest and plenty of it. Also eating properly is a plus.

I’m on record to say I’m praying for a cure and I’m striving each day to educate myself more on this disease. I would like to share my story to the world thru playing drums and hosting clinics in various places to show people that although I have Lupus I’m still able to succeed and this won’t get me down.

Lupus In Color is excited to present Dion Langley’s story to the world. As a Lupus Warrior he/she is actively promoting lupus awareness and wearing the armor of strength in doing so.

Lupus In Color Salutes you Dion Langley . YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!

FLY ON!

PLEASE SHARE Dion Langley’s FLIGHT ON YOUR WALL AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness

Butterfly Flight Srushti Gangawanwale

THE 7TH ANNUAL FLIGHT OF THE BUTTERFLIES

Flight of the Butterflies is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly Srushti Gangawanwale

FOBSGangawanwale

SGangawanwale

My first blood test was like when I was in 7th or something. I hadn’t gotten my period yet and somehow my hemoglobin was low. It was like 7.5 and my mother was worried and she took me to a doctor and the gave me some tonic. But, it didn’t really help.

I started to look yellow, my eyes, my skin generally looked yellow. I thought it was just a passing phase of yellowness on my skin. I was living under the delusion that things are fine. Even everyone in my house just overlooked it.

In December 2013 I got a high fever and I was really unwell. I went to a doctor and he said I have jaundice.

All the time I was trying to reassure my mother, “Oh, I’m fine, I’m not sick! But I was wrong.

Lupus In Color is excited to present Srushti Gangawanwale’s story to the world. As a Lupus Warrior he/she is actively promoting lupus awareness and wearing the armor of strength in doing so.

Lupus In Color Salutes you Srushti Gangawanwale . YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!

FLY ON!

PLEASE SHARE Srushti Gangawanwale’s FLIGHT ON YOUR WALL AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness

Butterfly Flight Kwajalein Daniels

THE 7TH ANNUAL FLIGHT OF THE BUTTERFLIES

Flight of the Butterflies is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly Kwajalein Daniels

When I first heard the word Lupus, I was about 5 yrs. old. My grandmother (Geleyna Daniels) and my great grandmother both passed due to complications of Lupus. All I knew about the disease is that it makes your hair fall out and it seemed to only effect seniors, Boy was I wrong.

I remember my grandmother coming to Dallas every year for the State Fair & The Dallas Cowboys. She was one classy lady, always wore dark shades, big floppy hats, and sleeves. I did not know she had to wear those items due to the disease, I assumed that was her style. She stopped coming to Dallas when I was about ten, and was in and out of hospital, then she made the decision to stop all medications because she didn’t want to suffer anymore,

I was always active in school, around third grade I started getting sick, My mom must have took me to twenty different doctors, I had a hear murmur, rheumatic fever, then one day I woke up to get ready for school like Id done millions of times and went to stand up and fell, my whole left side was throbbing with pain, kinda like a heart beat but less frequent. I spent the majority of third grade in the hospital and still didn’t get a definite diagnosis.

By the time I was 13 the sickness was gone just as abruptly as it had come.

In 1996 while being incarcerated and playing volleyball I jammed my index finger on my right hand while blocking a spike. After 3 days it got worst and more painful so I visited the infirmary and the doctor asked me if my family had a history of lupus I said yes, but what does that have to do with my finger and he replied you have inflammatory and a normal person( no lupus history) finger would have been fine by now, you may need medication in the future… No more issues until several yrs. after being released, 2011 would be the year that changed everything for me in more ways than one.

I began having blemishes in my face and little knots on my shoulders that I couldn’t get rid of as well as a painful rash on my back that prevented me from going anywhere but to work and home. MY sister went to emergency room with me in 2011 and I was told that I was allergic to cat hair. I’ve had a cat or two all my life and have never had any issues like this, so I went back after a couple weeks on my own and this time I was told I was an intravenous drug user and if I got off the needle all rashes and or blemishes would dry up. Dr said my arms look liked abscess from a needle miss, my mouth was hanging open and I could not believe what I was hearing.

I’m terrified of needles, have never ever shot any drugs into my veins and I told him so. I was told that I was in denial and that They couldn’t help me get off the drugs unless I was honest with them. I left Baylor hospital and went straight to Parkland and they took blood samples and all test came back negative except the lupus test. From then on it was specialist after specialist, procedure after procedure. If I go anywhere I have to carry a pharmacy in my purse.

I’ve been hospitalized three times, Valvular Heart disease (open heart surgery is recommended), kidney malfunction, chronic back pain, loss of 30% cognitive abilities, and major fatigue with insomnia…No one understands what I’m dealing with on a daily basis. They just do not understand how I can look fine on the outside and all hell is breaking loose on the inside. I am so tired of hearing there is nothing wrong with you, quit blaming everything on lupus you’re fine.

I’m no longer angry with my grandmother for succumbing to this horrible disease. I’d be lying if I say I haven’t thought about throwing in the towel myself. Yes its that bad sometimes, but I pray about it and remember we have better technology now, better ways to treat certain illness, and a better knowledge of what we’re dealing with. So today I chose to not give up without a fight. My name is Kwajalein Daniels and that’s my Lupus story.

Lupus In Color is excited to present Kwajalein Daniels’ story to the world. As a Lupus Warrior he/she is actively promoting lupus awareness and wearing the armor of strength in doing so.

Lupus In Color Salutes you Kwajalein Daniels. YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!

FLY ON!

PLEASE SHARE Kwajalein Daniels’ FLIGHT ON YOUR WALL AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness

Butterfly Flight Sarah Gragg

THE 7TH ANNUAL FLIGHT OF THE BUTTERFLIES

Flight of the Butterflies is a lupus awareness campaign sharing stories of the brave lupus warriors. Many don’t understand lupus until they hear the walk of a warrior. Flight of the Butterflies is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly Sarah Gragg


I was diagnosed on February 4, 2019 two days after my 40th Birthday. I have been struggling with symptoms for almost 7 years. I was always exhausted no matter how much rest I got. I was told I was anemic and put on Iron. I was having chest pain, swollen Lymph nodes, Then I started getting painful rashes every time I would get in the sun even if I was only outside for 15 minutes. Then I would start getting really weak, dizzy, and nauseous. Then the full body aches would hit. I just felt like I had a flu that would never go away. My first diagnoses was Polymorphic Light Eruption. I was also struggling with endometriosis at that time and already had 3 surgeries from that. While working one night on an assembly line, I lost the feeling in 1 of my fingers and it turned white and then blue, and my toes also a few weeks later. So after seeing the doctor I was then diagnosed with Raynauds Phenomenon. I had constant fevers, and colds all the time. The Doctor thought that I might have lymphoma and had to have a needle biopsy, then a surgical biopsy to remove them. I was also diagnosed with Arthritis, and Sciatica. I was in constant pain, and frustration not knowing why or what was going on with my body.

I finally found a doctor who put it all together and did the right test to find I had had Lupus SLE all along after all these years. This disease can attack a different part of your body at anytime you just never know what to expect, and it can mimic so many other illnesses. I am on Prednisone and plaquenil daily to manage the symptoms which I am still experiencing flares and having to avoid Sun exposure which is the hardest part because I love outdoors and hiking. I am sharing my story in hopes of helping bring awareness and maybe someday they will find a cure for all of us struggling daily with autoimmune diseases like Lupus.


Lupus In Color is excited to present Sarah Gragg’s story to the world. As a Lupus Warrior he/she is actively promoting lupus awareness and wearing the armor of strength in doing so.

Lupus In Color Salutes you Sarah Gragg. YOU ARE BRAVE, COURAGEOUS, AMAZING and STRONG TO SHARE YOUR STORY.
YOUR BUTTERFLY WINGS ARE FLUTTERING, YOUR CHIN IS UP, YOUR ARMS ARE EXTENDED AND YOUR CHEST IS OUT! FLY ON BUTTERFLY!

FLY ON!

PLEASE SHARE Sarah Gragg’s FLIGHT ON YOUR WALL AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

#LupusInColor #ButterfliesofHope #FlightoftheButterflies #Brave #Courageous #Strong #SpreadLupusAwareness

May 26 Lupus Fact

Butterflies of Hope

Flight of the Butterflies

Spreading Lupus Awareness One Butterfly at a time
Let this butterfly flutter all over cyberspace!

May 26 Lupus Fact

LUPUS IS A DISEASE OF FLARES BUT EVERY LUPUS WARRIOR MAY NOT HAVE THE SAME TRIGGERS. A HEALTHY LIFESTYLE REDUCES LUPUS FLARES AND EVERY LUPUS WARRIOR’S FLARES ARE NOT THE SAME.

This is your twenty-sixth butterfly of hope.
We need awareness and a cure!
Encourage everyone you know to let it FLY!
#LupusInColor #FlightoftheButterflies #SpreadLupusAwareness #LupusFacts

May 25 Lupus Fact

Butterflies of HopeFlight of the Butterflies
Spreading Lupus Awareness One Butterfly at a time
Let this butterfly flutter all over cyberspace!
May 25 Lupus Fact

An extremely difficult diagnosis such as lupus can put you into so many emotional phases. Finding coping methods is crucial to keeping a happy life after being diagnosed with lupus. Some of the very first feelings include frustration, sadness, anxiety, and fear of what’s to come.
This is your twenty-fifth butterfly of hope.
We need awareness and a cure!
Encourage everyone you know to let it FLY!
#LupusInColor #FlightoftheButterflies #SpreadLupusAwareness #LupusFacts