Lupus Warrior of the Month April 2020

Lupus In Color
Butterflies of Hope
Lupus Warrior of the Month
Debbie Blackburn

CONGRATULATIONS DEBBIE
You are an educated, inspired, encouraged and empowered Lupus Warrior and we salute your bravery as you beat lupus day to day.

Debbie will receive a Lupus In Color gift pack and be celebrated on all of our social media outlets. Take a moment to congratulate Debbie on her award and bravery in her fight!

The Lupus Warrior of the month program highlights lupus Warriors for their seen bravery from those around them. Warriors are nominated and then chosen from the story submitted. Want to nominate a lupus warrior? Visit: https://forms.gle/kNR1P8oC8cnTEcF56

#LupusInColor #LupusWarrioroftheMonth #LWOTM #ButterfliesofHope

Lupus Warrior of the Month March 2020

Lupus In Color
Butterflies of Hope
Lupus Warrior of the Month
Lizzette Rodriguez
CONGRATULATIONS LIZZETTE!


You are an educated, inspired, encouraged and empowered Lupus Warrior and we salute your bravery as you beat lupus day to day.

Lizzette will receive a Lupus In Color gift pack and be celebrated on all of our social media outlets. Take a moment to congratulate Lizzette on her award and bravery in her fight!

The Lupus Warrior of the month program highlights lupus Warriors for their seen bravery from those around them. Warriors are nominated and then chosen from the story submitted. Want to nominate a lupus warrior? Visit: https://forms.gle/kNR1P8oC8cnTEcF56

#LupusInColor #LupusWarrioroftheMonth #LWOTM #ButterfliesofHope

Survive The Holidays

Seven Tips to Survive the Holidays With Lupus

The holidays can be fun, but they can also be stressful. While we all are getting so excited about seeing loved ones and hosting events, there can be real fears that can and will bubble up in side of us. There may be fears of missing out, getting sick, or not being able to reach expectations put on us by family members or friends. The anxiety can be high, the worry can be off the charts and the depression may increase.

It’s important as we battle lupus to take it one step at a time. To not become overwhelmed and to not overdo it. If you already find yourself in a crazed frenzy of the holidays, it’s time to take your life and holiday sanity back.
Below are some helpful tips that may help you in finding your calm in the midst of the holiday storm.

  1. Remember, you don’t have to look at the whole forest. You don’t even have to look at a whole tree. Focus on the branch, the leaf, the bark. Breaking things down into smaller, manageable tasks is a great way to get started.
  2. Make a realistic list. Divide it between URGENT tasks that must get done, stuff that can wait a few days, and things that you should do, but that can be done at any time.
  3. Setting a time limit with a built in reward can be a great motivator. For example, put the dishes away while the tea kettle boils. Do a small task, like writing a thank you note, as you can while you wait for food to finish cooking.
  4. Ask for help – Reach out. Ask others for help. It can be scary, but more often than not, people are grateful to help. People like to feel useful.
  5. Take a deep breath. Take another. Drink some water and open the blinds. Put on fun music. Making your environment welcoming will help get you moving and ready to start the day.
  6. Say NO. This one is so hard for so many people especially lupus warriors. If you feel yourself getting stretched thin, or there’s absolutely no way you can do one more thing, you can say NO. Remember you are not responsible for another person’s bad time management. You don’t have to be a “Yes” man or woman to try and please others.
  7. PACE YOURSELF AND REST. This is hard especially for lupus warriors that may be feeling better and have some energy. Warriors tend to overdo it and then have to pay for it later on. I know many are excited, but it’s important to pace yourself and rest before you overdo it and end up in a bad flare.

Having lupus is challenging and when the holidays roll around it can be overwhelming and difficult to handle. The main thing to stay holiday flare free is to make it a collaborative effort. Don’t think you have to do it all yourself or make an extravagant party that will take you months to recover from. Let your need for perfection go. Remember, your first priority needs to involve doing what you can to protect your health. Don’t stress out and overwork yourself and you will have a nice holiday season.

#LupusInColor

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 Misty Jenkins

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 Butterfly of Hope stories in May for lupus awareness month.

Flight of the Butterflies Begins…..

Flight of the Butterfly Misty Jenkins

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

Lupus In Color Salutes you Misty Jenkins!

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 Misty Jenkins’ FLIGHT ON YOUR WALL AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

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

Be Gentle

Be gentle with yourself as you battle lupus. You’re trying and if it takes you longer than you thought to achieve something or get somewhere that’s okay. Don’t compare yourself to others or who you were before lupus, because not everyone gets to where they need to be right away. You’re alive that’s what matters. Keep trying, keep fighting, because so far you’ve beaten lupus 100% up until this living day. #LupusInColor

Toni Braxton Talks Lupus

Many may have gone through this, are going through this or have had these feelings. It’s important to talk it out and really understand your feelings and how it relates to what’s going on on your life. #LupusInColor

Video portion courtesy of Red Table Talk we do not own the right to the video or its contents.

Lupus Holiday Pouches

HAPPY HOLIDAYS

Lupus In Color is providing Lupus Pouches for the holidays for lupus warriors that have monthly IV infusions. If you are a lupus warrior that gets IV infusions or you would like a lupus pouch for the holidays, please visit the link below, answer the questions, enter your name, email address and mailing address to sign up. The first 50 lupus warriors will receive a pouch. Below is a view of what a pouch will look like. Each pouch will contain items to help through infusions and rough moments with lupus. Limit 1 per household.

https://goo.gl/forms/9rTpXrTMr8JuSV3B3