Warriors' Wall


Pamela

Diagnosed August 2010
United States. 

"Lupus has completely ruined my life. I'm sick and in pain everyday. I've been on IV chemotherapy for 3 straight years now. I've lost my entire family due to their mindset of 'But you don't look sick.' I'm basically just waiting to die. This disease is a monster."



Vicky 
Diagnosed 1973 
USA
 "I have struggled for 40 yrs with this horrible disease.  It has taken over my life . People just don’t understand. People think you are crazy & there’s nothing really wrong with you.  Some days I have to stay in bed because I hurt to bad and so tired I can’t get up. You just have to try to go on. Tomorrow’s another day."



Isabelle
Diagnosed 2009
Australia

"Lupus...
Being undiagnosed for 25 years cost me so much I can't even start to think about it.
I am so grateful I got to meet my grandchildren, and have focused on the relationships that truly matter.. My cat is the only one in my real life that knows what I suffer, I hide because I don't want to distress people, I fake being OK because it makes life easier for those around me..
I mean, what CAN you say to someone who knows they are dying?
I'm still  here because I want a cure.. need a cure... DEMAND a cure..
My Lupie sisters have turned me into a warrior when I could've very easily become a statistic.."




Stephanie
Diagnosed 2013 (but symptoms for seven years before)
"For me the most challenging thing about Lupus is learning to live a life in spite of being sick. It's not like a flu when you can put your life on hold until its better. "




Billie
Diagnosed 2010
USA
"It's hard to think of one thing to want to tell people about lupus as it is such a misunderstood disease but I guess my  number one thing would be to remember not to judge a book by a cover.  You can't see the damage lupus is doing from the outside and the hardest and most hurtful thing for us is to have to constantly defend being sick.  Our bodies are attacking themselves from the inside out and the pain we feel is indescribable so try to show compassion over judgement."


Inal
Diagnosed 2012
Philippines
"Lupus is just a disease, don't let it take away the happiness in your life. Even with or without lupus, life is worth fighting for. With God's help and guidance, we will overcome this illness."


Tanya
Diagnosed 2003
Australia
"Lupus – Challenging & Destructive, a daily battle of survival. 
Not only is a CURE needed for Lupus, but Love, Support/Understanding from partners, family and friends goes a long way while we wait for a cure. 
Awareness is a must!"

Gen
Diagnosed 2008 SLE & Discoid Lupus
U.S.A

"A poem for our struggles:
-Life short or long, with Lupus we strive to live strong \

-One breath at a time, we continue on when things aren't fine 
-May the pain subside, as we march on & thrive 
-Linking arms of support as we fight through the day & into the night 
-We are Warriors of silence, couriers of illness, struggling together to ease this pain."
Annie 
Diagnosed 2001
"I'm now 29 and have 2 beautiful girls I'm raising. I've had my share of struggles in life and the health problems don't help, but I power thru it. I must! My life isn't just about me, I may pay for it at the end of every night, but I make sure I am "present" in my girls' life, even if its from the couch and no matter how bad I'm feeling, I always make dinner a priority, maybe its the italian blood but I can be so bad off and still be determined to make a 4 course meal, at least 3-4 times a week....everyone needs a break. I'm no wonderwoman but I do still try for supermom!"



Jazmine
Diagnosed 2005
USA



Rose
Diagnosed 2009
USA
"Lupus is truly a harmful disease! It affects families, careers, self esteem, mentality and so much more! The one good thing about lupus is it helps us all to appreciate all we have and inspires is to live life to the maximum we can manage!"






Tatiana

Diagnosed 2010
USA
"Lupus doesn't only effect myself but it also effects my family. I pray everyday for a cure and for you people who doesn't know about this illness please take the time and read about it, it would help you understand of what we go through."




Janie
Diagnosed 2012
USA
"Lupus can be a very debilitating disease. Some days I can not even get out of the bed due to fatigue and pain. Then some days I feel "almost" normal but still get fatigued easily. I had worked for 10 years in the accounting field and 2 years in real estate, until 2006 I was no longer able to hold down a job. God closed one door in my life, my career, but opened another, getting to be a stay at home mother of my two children. I am very blessed to have that opportunity. I love my husband and children so very much. I pray for a cure."





Lorna

Diagnosed 2012
USA
"What I would like to tell the world, it could happen to anyone without notice. Lupus doesn't care who you are, where you live. An Autoimmune disease will knock you off of your feet and turn your world upside down.Your new world is full of visits to the Doctor, taking dangerous medication and having your blood drawn. Your life will never be the same. Each day is a fight to survive but you do it, people with Lupus are fighters. " 



Carolyn

Diagnosed 2008
USA
"Lupus is an invisible, chronic illness that brings you to appreciate the simple things in life and the small accomplishments. This gratefulness for  the things you are able to do each day is a wonderful way to cope with the losses of what you no longer can do effortlessly.  From this day forward, make a promise to yourself that you will cease to exist and begin living. That is, with faith in God for your healing, hope for a cure one day and love in your heart."



David
Diagnosed 2003
USA


"Lupus has taken, my career, many relationships , and who I was. Reinventing yourself isn't  impossible or easy. Lupus only defines who you are,  if you let it." 








Tammy 
Diagnosed 2000
"I was diagnosed with lupus in 2000.  I was sick for years before that but no one knew why. Since that time I have been diagnosed with many auto-immune disorders. I can no longer work, I can't spend time with my family and friends like I want to. WE NEED A CURE."





Angela
Diagnosed 2004
"For those years I have been battling with bipolar/schizo, major depression disorder, ulcerative colitis, RA and OA. I'm supposed to be the rock in my family so I don't show them that I hurt or feel. I write poetry to keep my focus dealing with my illness. I have lupus but I do not let the illness to define me. I am a beautiful lupus butterfly."


Cynthia
Diagnosed Fibro 1992, Lupus 2012
USA
"Don't judge the book by it's cover. "You look good" . Looks are deceiving. What you don't see is our pain, fatigue, nausea from the medicines we take to function. What is visible is the rash on my face, chest, back, arms and lips and my hair loss that I see every day. What you see, when I "look good" is my determination to make it through yet another day in as normal a way as possible."




Darlene
Diagnosed 2011
"We need a cure for this debilitating disease. Everyday is different. We never know how we are going to feel and because we don't look sick family and friends have a hard time understanding how we are really feeling. We need to spread awareness." 







Wiwik
Diagnosed 2011
Indonesia
"Lupus may change my body but not my mind. Keep on positive and fighting! Never Give Up!"









Cheryl
Diagnosed 2008
USA
"One thing I would like to say about lupus is I hate all the meds we take daily to live. And more meds are added to counteract side effects. It a hard battle."










Catherine
Diagnosed 2011 (symptoms since 2000)
Australia
"Lupus has torn the 'me' into little parts and taped them shut, into little boxes. There's still bits of the 'me' being me, but the taped up parts are closed forever."






Traci 
Diagnosed 2003
USA
"As a fighter of this disease I would like the world to know that I do not look sick, but I suffer daily.  This disease is so hard to fight because I never know where my own body is going to attack itself next.  I refuse to let it steal my life.  I will continue to fight and I hope one day that there will be a cure.  I cannot work, because who is going to hire someone who is fine one day and can't move or get up the next.  I certainly wouldn't hire me.  So I create things.  I crochet daily and sell my creations.  This is how I live because I cannot get disability because I don't look sick...."




Annie 
Diagnosed 2001 with Lupus -
Australia
"My diagnosis was refined to Mixed Connective Tissue Disease (a  component of lupus) in 2010 after 9 years of utter frustration. I have been labelled crazy, and lazy. I even believed those labels.
Lupus has taken my life away. I no longer have a job, or the stamina to do everyday tasks. If I wake up feeling something is different it is only that maybe I have no pain or can walk upright. These days are few and far between. I can no longer speak eloquently or draw. I have had to learn to live a life with the body that is not ME~ an active, healthy and slim person no more. It has caused a heart attack. It has disfigured my skin. It is wreaking havoc on my joints. It affects my eyes, my ears, my nose my mouth, my balance and my cognitive processes.

I wait each day with a sense of foreboding for what is next instead of anticipation for the day!
What it has not done is taken away my resolve, nor my sense of self. I am warrior...hear me roar. I will win. I will live life as fully as I can. I will do as much as I am able as often as I am able. I will live with it but not for it. I will live in SPITE of it."



Barbra
Diagnosed 2008
United States
"The unpredictability of the disease causes psychological and physical trauma. You find yourself creating a new 'normal' because life as you knew it will never be the same again." 





Iris
Diagnosed 2007
Australia
"Lupus doesn't just affect the people who have it, but also our family and friends, and it puts a huge burden on the healthcare and social security systems. We need a cure."





Lee-Anne
Diagnosed 2011
My feelings about having Lupus change daily scared, sorry for myself, angry, depressed, and  also  defiant and determined! This is when I am at my best Lupus can slow me down but it can’t stop me!! 






Anne
Diagnosed 2002
USA
Diagnosed with Sjogren’s years ago, then fibromyalgia, then lupus in 2002. The pot which had been simmering with minor complaints, now began to boil as the MCTD preceded to color every day of my life in some way. I was a nurse and did triathlons. Now, I blog (not that I don’t like blogging!). Lupus has a way of humbling you and dealing with the side effects of lupus or Sjogren’s is a full-time job!)



Katy
USA
Diagnosed 1967
I was 12 years old but had been sick for two years before being diagnosed. This was at a time when very little was known about the disease. My story is the same as all SLE suffers and yet different. I came to accept at a young age my physical limitations. The disease has developed character, compassion and a need for a Savior in my life.



Glynis
Canada (Québec)
Diagnosed age eleven (11) 1991.
I'm  truly a lupus survivor. Living with lupus now for 22 years, it is taking a toll on my body, with both hips replaced and so many other health issues related to lupus and all the side effects of the medication.
In everyday life, people need to realize that lupus is not just a disease, it becomes who we are. Lupus is an illness that defines our lives, by limiting and restricting us and as the struggle is an everyday commitment, we get stronger and stronger. We fight on and we appreciate the good in everything!!

Mary
USA
Diagonsed 1995


Mary here...I was diagnosed in 1995 with Lupus after years of aches and pains, mystery illnesses and countless doctors and as many diagnoses. Included in those diagnoses, hypochondria. 
Actually it was my wonderful orthopaedic that suggested that I see a rheumatologist. Back at that time, all books in the library gave a 5 year life expectancy. I had 2 children still at home. My husband was a long haul truck driver, so I was almost a single mom. My parents were 500 miles away. 

I had few friends. My only sibling was a brother who was also 500 miles away.
Basically I was on my own with this scary diagnosis.

Fortunately, after I saw my new doctor, I learned I could live a relatively normal life.  He started me on NSAIDS and Plaquenil. Soon I was feeling better.
Since then my husband is now my ex. He couldn't deal with the illness. This is typical of most spouses. I have remarried and happier. But the illness has taken up residence in several of my organs. My medication list has increased to an embarrassing total.  I am now living on disability. Medicare and Medicaid are my insurance. My doctors are good. I spend a lot of time with them. But, I guess I must in order to feel human.
I thank God for that orthopaedic that suggested I see a rheumatologist.



Melinda and Ripley 
Australia
diagnosed 1980

The best coping aid I've had is my dog! Ripley, as a pup, began predicting my flares. The doctors didn't believe me, so I snuck him into my doctor's office and she, being a dog lover, allowed it. When she saw him acting concerned staring at me and sniffing my eyes and the next day I'd be in a flare.  

Now he's a registered service dog we're never apart and I know when I'm ok to go out and when I need to rest. My advice: get a service dog. He has changed my life!


Are you one of the warriors who fight lupus every day?  If you'd like to be featured on the Warriors Wall, please email me your details. In the subject line of the email write "Warriors Wall". Include in your email your first name, year of diagnosis, country and what you would like the world to know about lupus (no more than 100 words please.)  Attach a big clear photo of yourself (thumbnail pics don't enlarge very well.)



9 comments:

  1. Thankyou Iris...
    Reading everyones words made me cry, yet also gave me the sense of community and not-aloneness <3

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  2. Thank You for sharing your story...Lots of love to all <3

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  3. It is our covenant, we all want to find a cure. We have lupus but lupus doesn't have us.

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  4. Thank you for sharing Iris, it helps people to become more aware of Lupus :)

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  5. Thank you for sharing Iris, to help in the awareness of Lupus and other autoimmune & chronic illnesses. You are an angel :)

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  6. Thanks for sharing 😊 your story's I have been dealing with lupus for about 8 years and it hurts I've lost everything too but I'm still here and fighting.Tammie

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  7. I don't have lupus and I found this page eye-opening. Thank you whoever posted it.

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  8. 25 yrs,multiple issues. Butterfly and sunspots throughout the years. 2 negative tests so drs say I don't have. I believed. Carried on. Brings me to June had to flu so bad I thought I could die, dehydrated and have had issues with my kidneys since but did not know until Christmas when I had bubbles in my pee. They tested all ok? Said I had muscle spasms. Drs are guessing and they, I am sure by the way they are acting around me now that they believe me to be a hypercondriac?! Now that I realize what may be wrong. No one wants to listen. I'm not ignorant. When I first started all those yrs ago I didn't have a computer or know to search. When I did my whole life is in the pages that I read. I'm scared and no one is listening and all I really want is a basic lupus test to prove what I already know in my gut. I waited 25 yrs whats another 25 days. Right?

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    Replies
    1. Hi Anonymous. I hope you get your answers soon. I actually wondered if I was a hypochondriac at times before I was diagnosed, with so many weird things going on. Lots of lupies know what you're going through. You're not alone.

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