Ten Steps

Ten Steps to Protect your Vibe as you Battle Lupus

  1. Let go of things you can’t control.
  2. Avoid comparing your lupus battle to you when you did not have lupus and to others who have lupus.
  3. Keep your faith for healing bigger than your fears of the pain.
  4. Don’t do anything that you know will make you feel bad, doesn’t feel right or cause you a flare.
  5. Don’t be afraid of being alone with your pain to figure out how to handle it.
  6. Avoid bashing yourself because you have lupus. It isn’t your fault.
  7. Speak kindly to yourself you are fighting a hard battle.
  8. Take care of yourself before you take care of others.
  9. Stay away from people who drain you or who are bent on misunderstanding your lupus fight.
  10. Ignore any opinions about how you live beyond lupus if they don’t enhance your life. They aren’t walking in your shoes so don’t let them dictate your steps.

#LupusInColor

Butterfly Flight Penny Partin

THE 8TH ANNUAL FLIGHT OF THE BUTTERFLIES
Butterflies of Hope Warrior Stories

Flight of the Butterflies, Butterflies of Hope Warrior Stories 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, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly Penny Partin

My journey began 32 years ago, diagnosed 27 years ago. and today, at 58 I continue my battles with health issues, because of Lupus. If I told you my story, you would hear Hope that wouldn’t let go. And if I told you my story, you would hear Love that never gave up. And, if I told you my story, You would hear Life, but it wasn’t mine. So, If I should speak, then let it be of the grace that is greater than all my sin; of when justice was served and where mercy wins! of the kindness of Jesus’ that draws me in.

I am one of the lupus warriors with the drug induced lupus. There’s not lot said about this one as much as the other ones. But, it’s as damaging to the body as the others. Had they caught mine in time I would have gotten over it in six months they said. But, the blood pressure meds had sent me into orbit and there was no coming
back around with lupus as a hitchhiker.

The best way I’ve found is to be treated as the problems arise! Like the diverticulitis that almost killed me 4 years go for I had to have a colonoscopy and the one that did pervaded my intestine caused my bowels to leak out. But, my body surrounded it so it didn’t rupture. This was a year from the time I had to have an ic pic in my arm to surgery to repair and then breaking open and wearing a wound vac for four months. This time last year, I had knee replacement and I couldn’t get up on my own without help.

I had a second surgery so they could bend my knee had to come home with a knee bender and therapy for six months. But, thank God today I can walk and climb my hill behind my house and walk stress off. I also have eye issues and get shots in my left eye. I’ve been having now to get them every 8 weeks. I hope others will see they need to be careful with medicine as it can hurt you! as well as help you!

Oh to tell you my story is to tell of Him…If I told you my story, You would hear victory over the enemy. And if I told you my story, you would hear freedom that was won for me! And if I told you my story, you would hear Life that overcome the grave. If I should speak then let it be of the grace that is greater than all my sin; of when justice was served and where mercy wins. Of the kindness of Jesus’ that draws me in. Oh to tell you my story is to tell of Him! For this is my story, and this is my song! Praising my “savior” all the day long… Oh to tell you my story is to tell of Him…Greater is He that is in you than he that is in the world 1 John 4:4 🙌 and this is my story, of my 30+ years! battling Lupus. ”Giving Thanks” for my story! Thanks for all you do!

Lupus In Color is excited to present Penny Partin’s 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 Penny Partin. 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 Penny Partin’s FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

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

Butterfly Flight L’Mekka Edwards

THE 8TH ANNUAL FLIGHT OF THE BUTTERFLIES
Butterflies of Hope Warrior Stories

Flight of the Butterflies, Butterflies of Hope Warrior Stories 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, Butterflies of Hope Warrior Stories is dedicated to sharing those stories in May for lupus awareness month.

Flight of the Butterfly L’Mekka Edwards

As I sit in silence, I hear so many thoughts. What did I do? Who did I hurt? Is this Karma. Why me? When will this be over? Why I can’t get over this? How did I get here? Is this my new life!

Living with Lupus has been a thorn in my side since 2008 attacking my SKIN. Facebook has these memories that pop up and it shows me saying how Lupus affected me around the same time year after year. Am I the reason? Am I harming myself? What can I do different? I have always wanted to be a Police Officer. I finally took the test in 2004. 2005 I couldn’t start because I had my spleen removed. I gave up. I was working and being a mom.

My good friend suggested I try again. In March 2011, I became a Correctional Officer for Cook County. I was proud of myself, the pain I endured, the money I spent, the time I invested. I had no family support. I had to rely on God and a few friends to help me with my sons.

My health reared again, and I developed more auto immune problems, but I continued to try to get better. I got into fitness again became a Personal Trainer opened up my own gym in 2014. 2016 I made another milestone by finally becoming a Police Officer. After losing family members, miscarriages, being attacked at work, marriage failing I  made it through all of this. I was in the best shape of my life. My personal life sucks but my professional life was amazing.

2016 I developed HEART problems and had to wear a heart monitor a month before I started the Police Academy. I refused to let that stop me.  October 2017, I kept falling down. Hospitalized.

Lupus attacking my BRAIN. March 2018 my squad car was rear- ended. Hospitalized. I injured my left leg developed DVT and PE. Blood clot in left leg and one on each LUNG. April 2018 hospitalized Lupus attack my KIDNEYS. Category II and IV Lupus Nephritis. My son graduated from High school and went off to College. August 2018, I sprained my ankle in 3 places. I was off work from March until October 2018 with no income.

God helped me survive. November, twice in December 2018 Lupus attacks my EYES, twice in January 2019 and February I was in the hospital because Lupus attacked my Kidneys, eyes and lungs. I was off work again from January until May 2019 with no income, but God is keeping me. 

In 2019 was hospitalized every month except April and July. I am more focused on what I am eating that is causing my Lupus flare and how I can live my best life.

I turned 40 in 2019 on January 26 and I promised myself I was going to do 40 new things that year and I did.

On March 7th 2019 I became  a member of the First Lupus Sorority  – Lambda Sigma Sigma Lupus Sorority, Inc. Founded by LaCasha Lee in Chicago on August 13, 2018.

Lupus will not win.

I walk for myself.

I walk for awareness.

I walk for health.

I walk for you.

This girl treks.

Next time join me.

Help Me find a cure for Lupus. 

Lupus In Color is excited to present L’Mekka Edwards’ 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 L’Mekka Edwards . 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 L’Mekka Edwards’ FLIGHT ON YOUR SOCIAL MEDIA PAGES AND START HER BUTTERFLY JOURNEY SPREADING LUPUS AWARENESS!

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

What You See

They say that the strongest among you are usually the most sensitive…. That the one who smiles the most is the one who cries the most when alone.

Most times what you see on the outside of a person is never usually telling their full story.
That happens a lot with someone who is affected with lupus. They don’t look sick on the outside but on the inside their bodies are in a fierce battle. They feel it, but show it to no one. At times the pain is so horrible that it alters their personality. That alteration can be so drastic that it seems out of the norm and just down right nasty to those closest to them. A lupus warrior can help it at times and other times they can not.

It is important to know that with lupus warriors and with anyone really, what you see isn’t always what you get. The smile, the strength they show, the love they exhibit is not indicative of the battles they face day to day just to live.

Just a small lupus reality during Lupus Awareness Month

I have Lupus, Lupus does NOT have ME!

#LupusInColor

Lupus Awareness Pledge

Take the Lupus In Color Lupus Awareness Pledge

• LEARN THE FACTS ABOUT LUPUS

• WEAR PURPLE ON PUT ON PURPLE DAY MAY 15

• SPREAD LUPUS AWARENESS VIA SOCIAL MEDIA BY SHARING BUTTERFLIES OF HOPE FACTS AND STORIES

• TAKE ACTION TO HONOR A FAMILY
MEMBER OR FRIEND BY SHARING YOUR EXPERIENCES WITH LUPUS TO HEIGHTEN AWARENESS

• START A CONVERSATION WITH OTHERS ABOUT LUPUS

Share with others and ask them to take the pledge to support Lupus Warriors. Share the message spread the awareness!

#LupusAwarenessPledge
#ShareTheMessage
#SpreadLupusAwareness #LupuslnColor

May Lupus Warrior of The Month

Lupus In Color Butterflies of Hope Lupus Warrior of the Month

Xiomora Gonzalez
CONGRATULATIONS XIOMORA

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


Xiomora will receive a Lupus In Color gift pack and be celebrated on all of our social media outlets. Take a moment to congratulate Xiomora 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 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