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

Faces of Lupus Episode 9

Lupus In Color 7th Annual Faces Of Lupus

Social Media Lupus Awareness Campaign

Lupus affects individuals of virtually every age, race, ethnic background and socioeconomic status. Yet, some groups are notably affected with the disease. Lupus is three times more common in African-American women than in white women. It is also more frequent among women of Hispanic/Latina, Asian and Native American descent.

Often, you can look at a Lupus Warrior and never know they are fighting a bitter hard battle daily. It’s important to see the faces that can bear the pain within without showing it to everyone who they come in contact with without.
These are the Faces of Lupus from every walk of life fighting the same battle. Supporting one another in the battle for their lives.
These are the Faces of Lupus, they are brave, courageous and strong!

#LupusInColor #FacesOfLupus #FlightoftheButterflies #ButterfliesofHope #SpreadLupusAwareness

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 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

May 29 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 29 Lupus Fact

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.

The exact cause of lupus fog is hard to pin down. In some cases, lupus can damage cells in the brain, leading directly to cognitive problems. However, in most cases other factors play a role, including fatigue, stress, and depression. Lupus fog is sometimes worse in people who also have fibromyalgia. Although it’s possible that side effects from drugs such as NSAIDs or steroids could worsen lupus fog, experts say that switching medicines rarely resolves the problem.

This is your twenty-ninth butterfly of hope. We need awareness and a cure!

Encourage everyone you know to let it FLY!

#LupusInColor #FlightoftheButterflies #SpreadLupusAwareness #LupusFacts

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

Faces of LUPUS Episode 8

Lupus In Color 7th Annual Faces Of Lupus
Social Media Lupus Awareness Campaign
Lupus affects individuals of virtually every age, race, ethnic background and socioeconomic status. Yet, some groups are notably affected with the disease. Lupus is three times more common in African-American women than in white women. It is also more frequent among women of Hispanic/Latina, Asian and Native American descent.
Often, you can look at a Lupus Warrior and never know they are fighting a bitter hard battle daily. It’s important to see the faces that can bear the pain within without showing it to everyone who they come in contact with without.
These are the Faces of Lupus from every walk of life fighting the same battle. Supporting one another in the battle for their lives.
These are the Faces of Lupus, they are brave, courageous and strong!


#LupusInColor #FacesOfLupus #FlightoftheButterflies #ButterfliesofHope #SpreadLupusAwareness

Faces of Lupus Episode 8

Lupus In Color 7th Annual Faces Of Lupus
Social Media Lupus Awareness Campaign

Lupus affects individuals of virtually every age, race, ethnic background and socioeconomic status. Yet, some groups are notably affected with the disease. Lupus is three times more common in African-American women than in white women. It is also more frequent among women of Hispanic/Latina, Asian and Native American descent.

Often, you can look at a Lupus Warrior and never know they are fighting a bitter hard battle daily. It’s important to see the faces that can bear the pain within without showing it to everyone who they come in contact with without.

These are the Faces of Lupus from every walk of life fighting the same battle. Supporting one another in the battle for their lives.

These are the Faces of Lupus, they are brave, courageous and strong!


#LupusInColor #FacesOfLupus #FlightoftheButterflies #ButterfliesofHope #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

MAY 28 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 28 Lupus Fact

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.

This is your twenty-eighth butterfly of hope. We need awareness and a cure!

Encourage everyone you know to let it FLY!

#LupusInColor #FlightoftheButterflies #SpreadLupusAwareness #LupusFacts